tag:blogger.com,1999:blog-30595165648996874002024-02-18T23:14:03.427-08:00My FructMal GirlFructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.comBlogger101125tag:blogger.com,1999:blog-3059516564899687400.post-17440141501988493392019-04-06T12:04:00.000-07:002019-06-03T21:46:00.388-07:0018 Months Healed from SIBO and SIFO!It has been a year and a half since our final appointment with Dr. Abdullah & Dr. Buckle. They were right, Tootsie is indeed healed! We haven't had a hint of Small Intestine Bacterial Overgrowth, Small Intestine Fungal Overgrowth, or Fructose Malabsorption returning. Toots is feeling great! We just returned from our Spring Break vacation where she enjoyed anything off the menu that appealed to her. She is enjoying her new found freedom and has two fun trips planned this Summer with friends. I don't have to worry a bit about what she's going to eat! She is now 13 years old, 5' tall, and 84lbs. 🙌🏻<br />
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Buddy is doing fantastic as well! His celiac disease is well-managed and he is growing as tall as a tree! He is 15 years old, 6' tall, and 145lbs.<br />
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-50677422167173840972018-11-28T07:26:00.001-08:002019-04-07T22:03:39.294-07:00SIBO & Sleep Disturbances - Resolved!I just realized I forgot to share that we had to seek help for sleep issues after Tootsie was healed from SIBO/SIFO last year. A symptom that would always come up during a flare was sleep disturbances - restless legs, waking in the night, difficulty falling asleep, a fear of sleeping in her own room (a generalized feeling of anxiety). All the other symptoms of SIBO/SIFO were gone, but the sleep issues were lingering. We were able to get into the sleep clinic at Seattle Children's where we saw a wonderful doctor that said the symptoms sounded like a deficiency in iron storage. She requested a blood draw and called us a few days later with results showing Tootsie's ferritin level was low. We started her on an iron supplement and in less than a week she was falling asleep easily in her own room and sleeping peacefully the whole night through!<br />
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-70215126537485317972017-11-13T09:14:00.000-08:002017-11-13T16:35:53.789-08:006 Months Post SIBO & SIFO Treatment<div class="separator" style="clear: both; text-align: center;">
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It has been 6 months since Tootsie was treated for Small Intestine Bacterial Overgrowth and Small Intestine Fungal Overgrowth. She is still doing great! She is eating normally, without ANY restrictions. She takes a daily probiotic and multivitamins and that's it! She has attended two overnight camps through church and school and we didn't have to pack any food or ask for accommodations. She was thrilled to have a real cinnamon roll! Halloween was pretty awesome for her this year too. She wasn't limited to Dum Dums and Smarties. Life is good! We'll see what the next 6 months brings... 😁<br />
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-33957424721534006572017-10-10T20:31:00.000-07:002019-06-03T21:07:37.801-07:00FINAL GI APPOINTMENT - CURED! No more SIBO, YEAST, or FRUCTOSE MALABSORPTION!We just got back from Tootie's <b>FINAL</b> GI appt! That's right. Her last one. <b>EVER</b>! Dr. Abdullah and Dr. Buckle said she's <b>HEALED</b>!!! I wish I would have recorded those words so I could play them over and over. They don't believe the SIBO or the FM will come back. Her only supplement remaining is the probiotic, and a multivitamin & vit D. I told them I was sad we wouldn't be seeing them anymore, but that I would be sending all my friends. So here you go, my friends, meet the dream team!
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<a href="https://www.primehealthkids.com/" target="_blank">Prime Health Clinic | Pediatric Gastroenterology</a></h3>
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<b>Dr. Bisher Abdullah (GI)</b> | <b>Dr. Heather Buckle (ND)</b></div>
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1420 3rd St SE Suite 106</div>
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Puyallup, WA 98372</div>
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253-268-0720</div>
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<span style="font-size: large;">Here is a letter I sent the doctors...</span><br />
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<span class="s1">Dr. Abdullah & Dr. Buckle,</span></div>
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<span class="s1">We can’t even begin to thank you enough for healing our girl.<span class="Apple-converted-space"> </span>We have searched for answers for seven years, from Bellingham to Tacoma.<span class="Apple-converted-space"> </span>We have sought online help from a doctor in Oregon and advice from parents all over the U.S. - and as far away as Australia!<span class="Apple-converted-space"> </span>We have scourged the medical journals, joined symposiums, listened to podcasts. We have seen naturopaths at 5 different clinics, GI doctors from Seattle Children’s and Mary Bridge.<span class="Apple-converted-space"> </span>We have seen specialists from neurology to endocrinology.<span class="Apple-converted-space"> </span>We have tried accupuncture, tinctures, bio-feedback, homeopathic remedies, massage, and essential oils.<span class="Apple-converted-space"> </span>We have treated with countless antibiotics, antifungals, herbal antibiotics, and supplements by the cupboards-full. <span class="Apple-converted-space"> </span>Our poor girl has been through a hospital stay with non-epileptic seizures.<span class="Apple-converted-space"> </span>She has endured cleanouts, blood draws, stool samples, numerous breath tests, and has been chained to the low FODMAP diet and almost no fruit…for SEVEN years.<span class="Apple-converted-space"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2mY47PoNCFYPceDWsPHL7vMZiH0RX2dGcgHwgkBcZttT1d52N-DJCq_3RsoomQCxtMY9LiovdSU6WPUrdyW_vydL74vpr6V7IcPvUCWnUTohn_gYrlLrdz2cxodjfr2BV5yc_V1kCOUi1/s1600/tootsie_dra.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1418" data-original-width="1600" height="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2mY47PoNCFYPceDWsPHL7vMZiH0RX2dGcgHwgkBcZttT1d52N-DJCq_3RsoomQCxtMY9LiovdSU6WPUrdyW_vydL74vpr6V7IcPvUCWnUTohn_gYrlLrdz2cxodjfr2BV5yc_V1kCOUi1/s320/tootsie_dra.jpg" width="320" /></a><span class="s1">We want to thank you from the bottom of our hearts.<span class="Apple-converted-space"> </span>You have been an answer to our prayers.<span class="Apple-converted-space"> </span>Tootsie is now eating all foods, without any trouble whatsoever.<span class="Apple-converted-space"> </span>She is finally gaining weight and growing out of her clothes and shoes.<span class="Apple-converted-space"> </span>It has changed our lives!<span class="Apple-converted-space"> </span>We don’t have to pack her meals for play dates or figure out how long we’ll be away from home to know if she’ll have enough food to get by.<span class="Apple-converted-space"> </span>Classroom birthday parties no longer make us cringe and we can reply “yes!” to end of season basketball pizza parties.<span class="Apple-converted-space"> </span>And she can go to camp!<span class="Apple-converted-space"> </span>She has her first two scheduled this month. <span class="Apple-converted-space"> </span></span></div>
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<span class="s1">We have been so pleased with your compassion and knowledge.<span class="Apple-converted-space"> </span>Please keep doing what you are doing because you are changing lives. <span class="Apple-converted-space"> </span>We are sending everyone we know with tummy troubles your way.<span class="Apple-converted-space"> </span>Including friends from out-of-state.<span class="Apple-converted-space"> </span>We think you are the best in the U.S. <span class="Apple-converted-space"> </span></span></div>
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<span class="s1">Thank you & many blessings,</span></div>
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<span class="s1">FructMal Mama & Tootsie</span><br />
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<span class="_47e3 _5mfr" style="background-color: white; color: #1d2129; font-family: "sf optimized" , , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;" title="smile emoticon"><br /></span>
<span class="_47e3 _5mfr" style="background-color: white; color: #1d2129; font-family: "sf optimized" , , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;" title="smile emoticon"><br /></span>
<span class="_47e3 _5mfr" style="background-color: white; color: #1d2129; font-family: "sf optimized" , , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;" title="smile emoticon"><br /></span>
<span class="_47e3 _5mfr" style="background-color: white; color: #1d2129; font-family: "sf optimized" , , , , ".sfnstext-regular" , sans-serif; font-size: 14px; letter-spacing: -0.12px; line-height: 0; margin: 0px 1px; vertical-align: middle;" title="smile emoticon"><br /></span>FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-6542662261366879722017-08-11T15:34:00.000-07:002017-08-15T08:01:33.199-07:003 Month Follow up - Post SIBO/SIFO TreatmentHere we are 3 months post treatment of SIBO, SIFO, slow motility, and constipation. I am THRILLED to report that FODMAP reintroduction (or in Tootsie's case, <i>introduction</i>) is going fantastically well! Tootsie is eating all sorts of new foods without any issues. Here are the foods she has tried so far that are working well: wheat, garlic, onion, cashews, cantaloupe, blueberries, zucchini bread, raisin toast, lactose free yogurt, ice cream bars. She has even tried a few apple slices! We cannot believe it! This opens up a whole new world for her. She has been going to friends' houses the past week or so without a packed lunch bag! You wouldn't believe the amount of weight that has lifted from my chest. I knew her health & diet was stressful, but now that the stress is lifting I'm realizing how weighted down I was by it. <br />
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She and I have eaten out at a Mexican restaurant where she had a chicken chimichanga with seasoned rice, she's had MOD Pizza with wheat crust, a Taco Time soft taco, Sushi with imitation crab, and Red Robin mac-n-cheese with wheat noodles! Not the healthiest of foods, but fun for a special treat now and then. She has gained 10 lbs since May! She looks healthy and has so much energy. I am so happy for her. This has been a long 7 years! </div>
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I want to hug Dr. Abdullah & Dr. Buckle! How do we ever thank them enough? They are the very best at what they do. I am sending everyone I know with tummy troubles their direction.<br />
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Another super awesome feeling is packing up all of these meds and supplements for disposal!!! (Well, 90% of them anyway. We'll keep the ones prescribed by Dr. Buckle, but the rest of them are leaving my cupboards for good!)<br />
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And this stack of medical records and research articles can be tucked away, out of sight! We have poured so many hours into finding answers on how to heal our girl. It is such a great feeling to finally be seeing the light at the end of this difficult path.</div>
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I hope you enjoyed reading this update as much as I enjoyed writing it! It's an answer to many prayers! The Lord has been our comfort and strength throughout this entire journey. We pray that He continues to heal our Tootsie and we pray this SIBO/SIFO cycle will finally come to an end.<br />
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com5tag:blogger.com,1999:blog-3059516564899687400.post-6401684103195911492017-07-12T07:04:00.004-07:002017-07-13T07:16:28.874-07:002 Month Follow Up - Post SIBO/SIFO Treatment<div class="separator" style="clear: both; text-align: center;">
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Tootsie had her 2 month follow up yesterday and is doing great! She has gained 5 pounds and has grown 1 inch. Dr. Abdullah (GI) and Dr. Buckle (ND) were very pleased. Stools are perfect, no reflux, great appetite, and sleeping well. Yay! We get to start introducing FODMAPs in a few weeks. Dr. Buckle believes she'll be able to tolerate most foods! This is music to our ears. I sure hope she's right. We have been bound to the low FODMAP diet for 7 years! Excited to break free from the chains! So very thankful for this duo!! They have given us new hope...hope for healing & normalcy. I can't speak highly enough of their expertise and compassion.<br />
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-7923563827806287532017-05-02T14:45:00.000-07:002020-01-13T19:39:59.240-08:00NEW Gastroenterologist - APPOINTMENT #3 (SIBO RESULTS)Today's GI and Naturopath appointment went very well! Tootsie's breath test results were NEGATIVE. Hallelujah! She has 7 days left of fluconazole and once that is finished she will discontinue the folate and N-Acetyl-L-Cysteine. She will continue with the other supplements until our follow-up in a couple of months. The doctors advised following a strict low FODMAP diet for 3 months before introducing new foods - this will allow time for the intestines to heal. <br />
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Tootsie is feeling good. She isn't having many tics (stretching or verbal), she is eating well and having Level 3-4 stools on the <a href="https://www.continence.org.au/pages/bristol-stool-chart.html" target="_blank">bristol chart</a>. And she just started sleeping through the night in her own room! It's amazing how intestinal dysbiosis can affect a person. Happy to have it resolved! We are so very thankful for our new doctors - for their compassion, their wisdom, and their desire to heal our girl! </div>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-79603047092148793362017-04-18T21:11:00.000-07:002017-04-24T08:16:27.462-07:00FOLLOW UP BREATH TEST<div class="separator" style="clear: both; text-align: center;">
(Please view <a href="http://myfructmalgirl.blogspot.com/2013/04/disclaimer.html" target="_blank">disclaimer</a>.)</div>
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Tootsie had her follow-up lactulose breath test today to see if the meds were effective against SIBO. We'll get results at our GI follow-up in a couple weeks. We did get a copy of last month's results, which shows a strong positive. As you can see, she was well above the 20ppm threshold.<br />
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We made the best of prep day again by doing a little shopping at the mall (Tootsie picked out some press-on nails...something she's always asking for, but I never let her get.) We also stopped by Michael's to check out "Slime Headquarters". If you don't know, slime is all the rage among tweens these days. (Here is a YouTube <a href="https://www.youtube.com/watch?v=tYPnyxRTQDk" target="_blank">video</a> on what it's all about). She did a manicure and pedicure in the room, we rented a movie, and went for a soak in the hot tub. The day went by pretty quick and the Zofran worked out well at keeping the nausea away. </div>
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The smiles disappeared the next morning. She woke up feeling nauseous and even with Zofran on board the first 45 minutes of the breath test was pretty rough. Toots felt like she was on the verge of vomiting and had to dig deep to keep it together. I am happy to report she was able to complete the 3 hour test. Way to go, Tootsie!! <br />
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We were able to get in to see the GI (Dr. A) and and the ND (Dr. B) while we were there for Tootsie's new & continuing signs and symptoms: thrush, keratosis pilaris flare on her cheeks, sore throat, chapped lips, irritability, and continuing constipation and bedtime anxiety....which all point to <a href="https://drruscio.com/sifo-small-intestinal-fungal-overgrowth/" target="_blank">SIFO</a> (Small Intestine Fungal Overgrowth). <br />
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Dr. A confirmed the SIFO diagnosis and Dr. B devised a plan to treat it. </div>
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<u>Tootsie will be taking</u>:</div>
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<b>Fluconazole</b> 100mg daily, with food for 21 days</div>
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<b>N-Acetyl-L-Cysteine</b> 1 capsule twice per day with food during SIBO/SIFO treatment - disrupts biofilm and improves response to antifungal/antibiotic treatment</div>
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<b>Folate</b> 400mcg open 1 capsule twice daily for 21 days, mix with a little water, swish and swallow - to help rid of oral thrush</div>
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<u>She will continue with the following supplements</u>:</div>
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<b>L-glutamine</b> - 2 tsp daily to help heal digestive tract</div>
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<b>Lactoprime Probiotic</b> - to support GI health, regular bowel function and immunity</div>
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<b>CalMag</b> - 3 tsp daily to support regular bowel function (can increase by 1 tsp at a time until stool reaches Britsol type IV.</div>
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<b>Motil-Pro</b> - 2 capsules twice daily to support normal GI motility</div>
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<b>Theanine</b> - increase to <b>2</b> capsules 2 time per day, to help reduce anxiety and improve sleep.</div>
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<b>Multivitamin</b>, <b>Vit C 500mg</b>, <b>Vit D3 1,000iu</b></div>
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-50946088305995509222017-03-23T08:37:00.001-07:002017-04-19T07:55:31.836-07:00HALFWAY THROUGH SIBO TREATMENTTootsie completed 2 weeks of Amox-Clav (250mg, twice daily). She is doing well. The past few nights she has wanted to sleep in her own room. This is huge! She hasn't been able to sleep by herself for 7 months. Three nights ago she woke at 11PM and came to our room and finished the night in our bed, the next tight she made it until Midnight, and last night she made it until 2:30AM! She started metronidazole (250mg, 1/2 tablet twice daily) last night and will be on it for two weeks. Hoping it wipes out the methane producing bacteria and she is finally able to sleep peacefully through the night without waking. <br />
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The supplements are going well. She does get a few minutes of heartburn after taking the MotilPro. Dr B (the ND) prescribed an alternative if the heartburn is too bothersome. She said it's a local discomfort caused by the ginger, but it isn't harmful. We'll keep plugging along with it for now.<br />
The alternative is Gentian (1 drop on tongue 3 times daily prior to meals) and 5-HTP (1 capsule at bedtime). <br />
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UPDATE:<br />The sleeping on her own only lasted a few nights. Once we started the metronidazole she went back to wanting to sleep in our bed. <br />
<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-27903954606045874192017-03-07T19:55:00.002-08:002017-05-01T22:09:34.210-07:00NEW GI - APPOINTMENT #2 (SIBO RESULTS)<div class="separator" style="clear: both;">
<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Tootsie had her follow-up with the gastroenterologist and the naturopath today. The results of the SIBO breath test showed a strong positive, with a peak hydrogen of 136 ppm (the threshold his 20 ppm). It was also positive for methane producing bacteria. The blood test showed elevated levels for liver function, blood glucose, and white blood cell count. Doctor would like to repeat these tests to rule out diabetes. (I don't believe she has diabetes. I think he was assuming her fasting blood glucose was 153, but the nurse had sent us to eat lunch because she wasn't able to draw any blood after 15 hours of fasting). The celiac blood screening was negative, which means she can continue challenging gluten as long as it agrees with her. </span></div>
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Both the doctor and the naturopath thought they could get rid of SIBO once and for all. They also felt by doing so that Tootsie's fructose malabsorption will greatly improve...and possibly could cure it all together! Say what?! That was music to our ears. We will definitely be praying for that. </div>
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This is our plan of attack:</div>
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1. <u><b>Treatment for SIBO</b></u><br />
<i><span style="color: #444444;"><b>Augmentin</b></span></i> 250mg twice per day for 2 weeks followed by <span style="color: #444444;"><i><b>Flagyl</b></i></span> 125 mg twice per day for 2 weeks for SIBO.</div>
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2. <u><b>Supplements</b></u><br />
<span style="color: #134f5c;"><i><span style="color: #444444;"><b>L-glutamine</b></span><span style="color: #134f5c;"> -</span></i></span> 2 tsp daily, mixed with a little non heated beverage - To help heal the GI tract.<br />
<i><span style="color: #444444;"><b>LactoPrime Plus SCD Compliant</b></span></i><span style="color: blue;"> </span>- 1 capsule daily - To help support GI health, regular bowel function & immunity.<br />
<i><span style="color: #444444;"><b>Cal Mag Liquid</b></span></i> - 2 tsp daily - To support regular bowel function<br />
<span style="color: #134f5c;"><i><span style="color: #444444;"><b>Motil-Pro</b></span></i></span> - 2 capsules twice daily - To support normal GI motility<br />
<span style="color: #134f5c;"><i><span style="color: #444444;"><b>Curcumin</b></span></i></span> - 1 capsule twice daily - To reduce inflammation, and control die-off reaction. As needed.<br />
<span style="color: #134f5c;"><i><span style="color: #444444;"><b>Theanine</b></span></i></span> - 1-2 capsules 1-2 times per day - To improve sleep & bedtime anxiety</div>
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3. <u><b>Blood work</b></u><br />
Hepatic Function Panel</div>
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C-Reactive Protein</div>
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GGT</div>
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Glucose, serum</div>
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Hemoglobin A1c</div>
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Sed Rate</div>
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4. <u><b>Follow-up Breath Test</b></u><br />
Lactulose breath test 2 weeks after finishing antibiotics & probiotics with <span style="color: #444444;"><i><b>Zofran</b></i></span> (to prevent vomiting)</div>
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5. <u><b>Follow-up for results with GI and Naturopath</b></u></div>
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2 weeks after breath test.</div>
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6. <u><b>Follow up with registered dietician to review diet log</b></u><br />
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_________________________________________________________________________________<br />
<br />
I would like to answer a few questions that have come up from friends in the Parents of FructMal Kids Facebook group...<br />
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<b>Why did Doctor prescribe Augmentin instead of Xifaxan?</b><br />
Tootsie has been on Xifaxan off-and-on for 6-1/2 years. Her previous GI called it "Vitamin X" and prescribed it monthly at one point. The new GI (Dr. A) believes she has become resistant to it. When she completes the Augmentin, she'll move to Flagyl. This will work on the methane producing bugs. Tootsie developed a bad case of yeast overgrowth in 2013 after a round of Flagyl so Dr. A is using 1/2 the recommended dose for a longer duration. The ND wants her to take Lactoprime probiotic during the course of antibiotics to also help prevent yeast overgrowth.<br />
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<b>Did he say why she has SIBO to begin with?</b><br />
He believes the underlying issue is related to abnormal motility. He believes if we treat SIBO while addressing motility we can keep it from returning. He believes she has never been truly SIBO free and has had chronic inflammation in her intestines resulting in fructose malabsorption.<br />
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<b>How are you feeling about all of this?</b><br />
I have hope again and I am excited! I was feeling defeated when our last round of Xifaxan didn't work (prescribed by the Naturopath at Bastyr Clinic in Seattle). I loved the ND there and she was studying up on SIBO and following the latest research, but it just felt like there was a missing link. The underlying cause was not being addressed properly. I hope to be able to share our success story with her someday. <br />
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com1tag:blogger.com,1999:blog-3059516564899687400.post-15420871106484574962017-02-23T15:17:00.003-08:002019-04-04T10:25:03.147-07:00THIS EMAIL BRINGS TEARS TO MY EYES<span style="font-family: "times" , "times new roman" , serif;">I blog about my kids' medical issues with hope it reaches a family struggling for answers. When I hit "publish" I often wonder where it will travel on the interwebs...and if it actually does reach the audience it's meant for. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"><br /></span>
</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">Well, I received confirmation this morning from a thankful mama. This email broke my heart and made it swell at the same time. It's a lengthy one, but a good one! ❤️ Thank you for sending this to me, "Jane"! I am so happy for your boy. Way to fight for him and not give up!! </span></span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"><br /></span></span>
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">Our momma instincts are there for a reason...we must listen to them! </span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"><br />* I did question whether or not this little boy could have HFI (Hereditary Fructose Intolerance), which is very different from Fructose Malabsorption. It can be fatal, as it can lead to kidney and liver failure. I asked his mom to look into it and have it ruled out. You can learn more about HFI here: <a href="http://www.bu.edu/aldolase/HFI/" target="_blank">HFI Laboratory HFI University</a>.</span></span><br />
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<span style="color: #444444;"><span class="s1">Hello!</span>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">I can’t remember, but I think I may have reached out to you at the very beginning of our journey with Fructose Malabsorption back in 2008/2009/2010. </span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">We went through SO MUCH with trying to get my son diagnosed. And, I want you to know that YOUR BLOG is what put the pieces together for me and for him. I was so desperate for answers, and I knew it had something to do with sugar, but the doctors were almost laughing at me saying, “there’s no such thing as a sugar allergy”. Which, they were right. That isn’t the technical name. I knew in my gut it was sugar, but I didn’t know it had a name until I stumbled across your blog. Your blog literally saved my little man’s life. It gave a name to what my suspicions were. And without that, I just don’t know that he wouldn’t be on a feeding tube today or worse. So, from the bottom of my momma heart, THANK YOU for being so brave to document your journey in the way that you did. It made all the difference in my son’s life, and in our family’s life.</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
<div class="p1">
<span class="s1" style="color: #444444;">By the time we finally got the doctors to administer the fructose test on our son (I fought with CHoP for a solid YEAR to do that test), he was already 4 1/2 years old, and they told us through additional tests they had done on him that his liver and kidneys looked like he had been an alcoholic for 30 years. At that point, they told me he would likely not live past 30 or 40 years old. Devastating….. His fructose test was sooo off the charts they took it to a national convention of doctors that year to discuss it (His doctor is supposed to be one of the best GI’s on the east coast). His colon was stretched to the size of a small football, and his entire intestinal tract was impacted almost to his actual stomach organ. It took months to get his GI tract straightened out. I was 100% sure he also had SIBO, but the doctors don’t believe in that I found out. So, I just treated it on my own with any information I could find on the web. His EOE was out of control causing projectile vomiting very frequently…even of water. It was such a scary time. I also have found out, that his EOE is directly related to his fructose intolerance.</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">BUT…..Here I am, nearly 6 years later, my little man is OKAY, and I gotta tell you. It’s been REAL HARD! At one point he could only eat 3 foods safely. We almost lost him 3 years ago. And I had to fight with every single doctor to just listen to me and look at my food logs and spreadsheets of everything I had tracked for him. We have been super diligent with his fructose free diet, and I actually reference your Pinterest boards often for new ideas for foods for him. That UDI’s bread was a GAME CHANGER for us! THANK YOU THANK YOU THANK YOU!</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
<div class="p1">
<span class="s1" style="color: #444444;">Last year, we moved twice (we built a home, so one of those moves was just temporary housing). In the last 9 months, something big has changed for my "Jonathon". He has gained 6 lbs! He grew 2 1/2 inches! He has never gained more than a pound each doctor visit, and rarely gains any height. We’ve been revisiting a couple of the foods that were on our avoid list…which have all PASSED! WHAT??? I was told that this disease was life long! He would never be cured. That he would never be able to eat a corn chip or popcorn! My mind is blown right now. When he was so sick 3 years ago, they wanted to put him on a feeding tube for life. I fought so hard against that, that they flagged me at the hospital saying I was not doing what was best for my child. Can you believe that? But he COULD eat, he just couldn’t eat the apple juice, strawberry yogurt, chocolate pudding, apples, oranges, and tapioca pudding they were bringing him in the hospital! And that hospital was who diagnosed him with FM! Ridiculous! Anyway….sorry for that rant…. I’m sure you know how frustrating that is….</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">So, I’m looking through my email last week, and your most recent blog post came up. And I was so excited to read your little one was getting a good doctor. Then your update on your son made me CRY! Literally sob. I know what you mean about them trying a new food they couldn’t have before. I cry every single time that happens. And, once again, you are giving me HOPE that my little man may actually be able to eat an apple some day! He might be able to go to a restaurant and eat a meal. He might be able to go to a friends house and not be scared to death of food. I AM SO HAPPY FOR HIM! AND FOR YOU! Congratulations! Seriously! That is so amazing! It’s my lifelong dream for my son.</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">We live in the suburbs of Philadelphia, but I would love to find a doctor, like you have found, out here to continue helping my son to possible FM freedom. We do keep him on a pretty gluten free diet. </span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">Sorry for the long winded email, I’m just so happy for your family. Sounds like things are really turning around in a positive direction for all of you.</span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">Wishing you all the luck in the world! I just wanted you to know how much your blog impacted our life in such a positive way. How your posts actually help diagnose my little boy. And how your words have given me hope beyond words. </span></div>
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<span style="color: #444444;"><span class="s1"></span><br /></span></div>
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<span class="s1" style="color: #444444;">With the sincerest heart, I thank you.</span></div>
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<span class="s1" style="color: #444444;">~ "Jane"</span></div>
FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com2tag:blogger.com,1999:blog-3059516564899687400.post-34052377861651215662017-02-21T19:25:00.001-08:002020-01-13T19:39:40.825-08:00NEW Gastroenterologist - SIBO BREATH TEST<div class="separator" style="clear: both; text-align: center;">
The GI clinic is 2 hours from home so we booked a hotel room for the night. It was a great way to break up the really awful day of <a href="http://myfructmalgirl.blogspot.com/2012/04/hydrogen-breath-test-instructions-for.html" target="_blank">diet prep</a>. Tootsie is not a fan of chicken or potatoes so we had to get creative. I cooked some chicken tenderloins in the Instant Pot with some water, salt & pepper, then ran them through the food processor and shaped the meat into nuggets. Then put a couple slices of Udi's White Sandwich bread in the food processor & rolled the nuggets in the crumbs. I refrigerated them overnight and microwaved them for 30 seconds when she was ready to eat them. She said they tasted pretty good. That's huge coming from a girl that generally won't touch chicken with a ten foot pole! I picked up some plain baked potatoes at Wendy's and some jasmine rice at Asian1 on the way. She took some Zofran at 11am and at 7pm. That really helped keep the nausea away from being hungry.</div>
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Once we got settled in we went for a dip in the pool. It was a nice distraction. We had some decaf tea and watched a movie before calling it a night. </div>
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I had Tootsie take another Zofran at 7:30am. She was starting to feel really nervous about the test because of her past history of vomiting. I assured her this medicine was suppose to help with that. Here she is trying to get the solution down...</div>
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They gave us a "sick bag" just in case! And said no screen time for at least an hour because that tends to make kiddos feel nauseous. Just before the first breath collection (after baseline) she began to have diarrhea. That continued for the first hour of the test.</div>
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Woohoo! She made it. Bag #10! She blew into these bags every 20 minutes for 3 hours.</div>
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They tried to get a blood draw after the breath test, but my poor Tootsie was quite dehydrated after 15 hours of no fluids. They said to go eat some lunch and drink plenty of water then come back. That did the trick!<br />
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Here she is at her favorite restaurant. She loves the grilled cheese on a gluten-free bun with American cheese. Sounds delicious, doesn't it? lol Poor little thing looks like she's been through the wringer. I'm so proud of her. She is such a trooper! Her strength amazes me.<br />
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We go back down in a couple weeks to go over the results. </div>
<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-48052351528280627532017-02-13T14:43:00.000-08:002020-01-13T19:39:20.973-08:00NEW Gastroenterologist - APPOINTMENT #1<div class="separator" style="clear: both; text-align: center;">
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Here we are 1 year later...Tootsie is 11 and Buddy is 13. <br />
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We have a new GI doctor ("Dr. A") that I am super excited about. He has given us hope that we can get to the root of Tootsie's recurring SIBO issue. She has been dealing with this for 6-1/2 years now. We have seen so many health care providers over the years it's ridiculous... Naturopaths, Pediatricians, Walk-in Clinic doctors, Gastroenterologists, an Endocrinologist, a Neurologist, Counselors, Acupuncturists, and Massage Therapists. I finally feel like we have found the doctor that is truly going to help us. He's the only integrated GI in the state, meaning he works directly with a naturopath to formulate a treatment plan. <br />
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We are currently in the info-gathering stage. Tootsie will have a lactulose breath test on Tuesday, February 21st to check for SIBO. She has had so many breath tests. Probably 8 of them...with only 3 successful ones. She usually vomits, which voids the test. This time Dr. A prescribed Zofran so hopefully she'll be able to keep the solution down. He is also having her take a tablespoon of mineral oil each day to address her mild constipation, vitamin C for easy bruising, and 1,000 IU of vitamin D. And she is doing a gluten challenge by eating a saltine cracker each day. </div>
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At the breath test appointment she will bring in a stool sample and the following labs will be drawn: Food Allergy Panel, CBC w/ diff w/ plt, Chem 18, C-Reactive Protein, Free T4 (Thyroxine), TSH, Celiac Panel, Serum B12 and Folate, OH Vitamin D.</div>
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Tootsie also had her well-child exam last week. She is following her height curve on the 14th percentile (53.8"), but her weight (63 lbs) has dropped to the 5th percentile. Once we get her gut healthy I'm sure we'll see some weight gain. That is our hope! </div>
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We have exciting news regarding Buddy! He is no longer showing signs/symptoms of having Fructose Malabsorption. He is trying all sorts of new foods that have been on the AVOID list for 4-1/2 years. It's like watching a baby eat a new food for the first time. He doesn't know it, but just watching him eat an apple or homemade sloppy joes almost brings me to tears. Celiac disease and having to avoid gluten is a drag, but it will be so much easier without having to worry about fructose or FODMAPs!</div>
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Buddy is growing like a weed. I swear you can almost watch him grow. He is 5' 5-1/2" and 105 lbs. He has passed me up and is now working on dad...just a few inches to go!</div>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-49056068653684988472016-01-23T16:13:00.000-08:002017-02-23T15:48:51.981-08:00HAPPY BIRTHDAY, BUDDY & TOOTSIE!<div class="separator" style="clear: both; text-align: center;">
We are still here! </div>
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It has been almost a year-and-a-half since my last post. As you can see, the kiddos have really grown! January is birthday month. Buddy is now 12 and Tootsie is 10! They are doing really well, but we still have little bumps in the road here and there. Buddy hasn't needed SIBO or yeast treatment since my last post. Tootsie has needed it once. We now see a naturopath in Seattle that has her on a low dose of erythromycin, every night at bedtime, for the next 6 months. We'll check in with the doctor after 6 months to see if we should continue this regimen. The erythromycin is being used to stimulate the cleansing waves in her intestine while she sleeps.<br />
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<span style="background-color: #fefef2; color: #4f4f2b; font-family: "georgia" , serif; font-size: 12px; line-height: 18px;">SIBO is a</span><a href="http://www.ncbi.nlm.nih.gov/pubmed/18802998" style="background-color: #fefef2; color: #7d862a; font-family: georgia, serif; font-size: 12px; line-height: 18px; margin: 0px; padding: 0px; text-decoration: none;" target="_blank"> disorder that relapses </a><span style="background-color: #fefef2; color: #4f4f2b; font-family: "georgia" , serif; font-size: 12px; line-height: 18px;">because eradication itself does not always correct the underlying cause, which is thought to be a deficiency of the migrating motor complex (</span><a href="http://www.siboinfo.com/mmc-videos.html" style="background-color: #fefef2; color: #7d862a; font-family: georgia, serif; font-size: 12px; line-height: 18px; margin: 0px; padding: 0px; text-decoration: none;">MMC</a><span style="background-color: #fefef2; color: #4f4f2b; font-family: "georgia" , serif; font-size: 12px; line-height: 18px;">) in many cases. The MMC moves bacteria down into the large intestine during fasting at night and between meals, clearing them from the small intestine (SI) on a daily basis. Bacteria can repopulate the SI within 2 weeks of finishing antibiotics, herbal antibiotics or elemental diet, without prevention, though it may take longer. If diet alone is used as treatment, the underlying causes must still be addressed for optimal improvement.</span> - Allison Siebecker</blockquote>
Their diets remain gluten-free, very low fructose, <a href="http://www.med.monash.edu/cecs/gastro/fodmap/" target="_blank">low FODMAP</a>, and milk is lactose-free. That means we rarely eat out and social functions, which involve food, are tricky. We always have a snack bag with us. If they go to birthday parties or sleepovers, they take their own food and treats. It can be a drag, but when we push the limits they suffer...and it's just not worth it. <br />
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Buddy's birthday was on the 7th of this month. We took him and 6 boys to the paintball park. They had so much fun! I fixed some GF cheese pizza from Costco and some GF brownies for him and his buddies...and figured he could have 2 pieces of pizza and a thumb size piece of a brownie. Well, I wasn't watching closely and he ended up visiting the candy machine and shared a 3 Musketeers with his friend, then ate several pieces of pizza and a whole brownie!! He was fine that night, but the next morning I noticed red circles under his eyes. Then, the following day the depression, anxiety, and tummy pain hit. He said he felt like gas was trapped under his ribs. It's a 3 day process for him to work through the symptoms of being "fructosed"...which meant he had to miss a few days of school. Ugh - It's not worth it, Buddy! <br />
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These are the lessons they have to learn on their own because mom and dad aren't always able to monitor things for them. It's the pits to be different from everyone else. :( I am so very proud of them though...they rarely complain about their adversity. They accept it and keep pressing on. I love them to pieces. :)FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com1tag:blogger.com,1999:blog-3059516564899687400.post-41007032352218624112014-07-04T11:10:00.001-07:002017-02-23T15:49:11.593-08:00HAPPY 4TH OF JULY!I just received a request for an update so here it is! I am happy to report both kids are doing great! No tummy complaints for a very long time...no antibiotics for SIBO or antifungals for yeast. Yay!! Taking milk out of my daughter's diet made all the difference. <br />
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We moved into our new house in March and the kids have been having a blast playing with their new neighbor friends. It's so wonderful to see them enjoying life, looking healthy, and not dealing with tummy pain & reflux. Their diets are still very limited, but they know that's the way it has to be to continue feeling good.</div>
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We recently took at trip to Idaho, to Silverwood Theme Park, and had a super fun time. We brought our niece along, which worked out great because she and our daughter love the same scary rides. </div>
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We also spent a day at a play center where we played laser tag, go karts, mini golf, arcade games, bowling, bumper boats, and swam in an indoor water park. We had a great time!</div>
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My girl is up there!</div>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-15423174874765268762014-05-25T18:18:00.001-07:002014-05-25T18:18:27.343-07:00Low FODMAP Banana Muffins<div style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14.399999618530273px; line-height: 15.455999374389648px; margin-bottom: 6px;">
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3/4 C King Arthur GF Flour<br />1/2 tsp Baking Soda<br />1/2 tsp Baking Powder<br />1/4 tsp Salt<span class="text_exposed_show" style="display: inline;"><br />2 Bananas<br />1 Egg<br />1/3 cup Butter, melted</span></div>
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Preheat oven to 350º F. Coat muffin pan with oil. Mix dry ingredients.</div>
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Combine bananas, egg, and melted butter. Fold in flour mixture and mix until smooth. Scoop into muffin pans.</div>
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Bake for 25-30 mins. (10-15 mins for mini muffins)</div>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com1tag:blogger.com,1999:blog-3059516564899687400.post-12823075448056621652014-04-28T15:46:00.001-07:002017-02-23T15:49:54.148-08:00TOOTSIE TURNED 8!<div class="separator" style="clear: both; text-align: center;">
Tootsie turned 8 in January. She is doing really great! She is 4 ft tall and is 47 lbs...and has long feel-good stretches. We still have to treat SIBO about twice a year, but a five day course of Xifaxan is enough to take care of it. We continue to follow a very low-fructose/low FODMAP diet and it works well for her. She enjoys learning, crafting, sewing, and piano lessons. She's pretty great if you ask me ;)</div>
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-75707993779647038752014-04-28T15:26:00.001-07:002014-04-28T15:28:12.753-07:00May is Celiac Awareness Month<div class="separator" style="clear: both; text-align: center;">
I'm a few days early, but thought this was worth sharing. If you, or someone you know, experience these signs and symptoms please get tested! It's a simple blood test to start. If the blood test is positive, then a biopsy of the small intestine is next to confirm the diagnosis. Please don't hesitate! And don't let your doctor tell you it's rare and you couldn't have it. Listen to your body and demand testing.</div>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-37036489533139922682013-10-03T17:29:00.000-07:002013-10-16T21:03:49.321-07:00Stupid YEAST!<div class="separator" style="clear: both; text-align: center;">
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It has been nearly 5 months since my last post - yikes! Well, we had an uneventful Summer...as far as medical/health stuff goes. The kids felt great! We had to treat Tootsie for SIBO and yeast in June, at the end of the school year...and we are thinking it might be time to do it again. She is starting to show symptoms of burping, gas, and mild constipation. We are going to hold off on treating for now. We'll see if symptoms worsen over the next few weeks.<br />
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We did have an exciting Summer though! We sold our house on 4 acres and bought a lot in a development on 2/3 of an acre. We decided we didn't need the acreage. The kids would much rather have neighborhood kids to play with, and we would like less to mow. We are excited about starting fresh and making some changes to our kitchen layout! So for now we are camped out in a rental, just a 1/2 mile from our building site. It's great to be so close...we can pop over easily and check on the progress.<br />
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<tr><td class="tr-caption" style="text-align: center;">Taking a break.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Throwing sticks for the dog.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Wild monkeys in the backseat.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The new house so far.</td></tr>
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Now back to the medical stuff...<br />
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Buddy had a rough start to the first two weeks of school and was only able to attend 2 days. He was having free-floating anxiety, brain fog, inability to focus, depression, an itchy throat with a dry cough, an itchy bottom, tummy pain and weight loss. I took him down to see his GI doctor to see if we could test for SIBO...I knew something was going on with his gut. Either SIBO or yeast overgrowth. GI didn't think the symptoms were related to SIBO and prescribed an anxiety medication. He thought it was normal anxiety due to starting a new year of school. I didn't agree, but went along with it. I went ahead and filled the medication and gave it to Buddy the following morning. It made him act silly and once we got to school, it did nothing for his anxiety and we had to come home. So we discontinued the medication. Our Naturopath had ordered a stool analysis kit back in May so we decided to go ahead and test him to see if it would show yeast. <br />
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In the meantime, we met with Buddy's therapist to see if she could help with coping skills to get through the anxiety. She felt like we needed to get to the root of his digestive issues for her therapies to be helpful. So while we were waiting for the stool test result to come in, we went ahead and treated for yeast overgrowth based on symptoms. We used fluconazole (150mg, once a day for 7 days). We got the results today which showed he did in fact have moderate levels of yeast in his stool. His Naturopath made a diagnosis of leaky gut & brain. She felt the toxins being thrown off by the yeast was crossing the blood-brain barrier and giving him the neurological symptoms (just like what happens to Tootsie). After 3 days on fluconazole he was back to his confident, happy-go-lucky self. He even ran for class representative and won! Way to go, Buddy! He has been going to school for the past 2 weeks now, with no episodes of anxiety and he's doing great in class. We are so happy for him!<br />
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<tr><td class="tr-caption" style="text-align: center;">The new 4th grade class representative.</td></tr>
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So our plan for now is to meet with the naturopath monthly and follow her advice on healing the gut. She sent us home with some new herbal meds and supplements to add to list. #1. OrthoFlora to support a healthy balance of intestinal flora. #2. GI Integrity - gives fuel for intestinal cells and connective tissue nutrients to help heal the leakiness. #3. Quercetin - a potent antioxidant. He will continue to take Thorne Children's Basic Nutrients, Cod liver oil, Vitamin D, and Simalase digestive enzymes & Innate Response Flora 20-14 probiotics. He also takes UNDA Numbered Compounds - a homepathic preparation. Now how's that for a mouth full?! Cheers to healing!<br />
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<tr><td class="tr-caption" style="text-align: center;">Off to school!</td></tr>
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-26139971967670800052013-05-16T23:09:00.001-07:002013-06-12T20:17:29.832-07:00On a Good StretchIt's time for an update.... It has been <b>3 months</b> since Tootsie's last round of antibiotics and she is feeling great! The probiotics have worked well for her. We started with <a href="http://www.renewlife.com/ultimate-flora-adult-15-billion.html?gclid=CMy7lMixnLcCFaaDQgodNRMALw" target="_blank">Renew Life Ultimate Flora for adults</a> and this week we switched over to <a href="http://www.innateresponse.com/Flora-20-14-p/41006.htm" target="_blank">Innate Response 20-14 Ultra Strength</a> (recommended by our ND). She is taking 1/2 a capsule every morning and Buddy is taking a whole capsule. We haven't kept up with the sauerkraut juice (it stimulates stomach acid and is full of digestive enzymes, probiotic bacteria, vitamins and mineral) because Tootsie only liked it in her chicken broth and she has grown tired of the broth. We haven't kept up on the coconut oil either because she says she doesn't like the taste. I was hoping the caprylic acid in the coconut oil would help keep the yeast at bay. So far, the probiotics and low carb/low milk diet seem to be doing the trick. <br>
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We have been working with a new naturopathic doctor that specializes in digestive health. Her name is Dr. Deb. She has been a great fit for us and has renewed our hope in breaking this bacteria/yeast overgrowth cycle. Our daily regimen for both kids includes: digestive enzymes, multivitamins, vitamin D3, cod liver oil, detox herb tea (mint, nettle, & horsetail), l-glutamine, and probiotics. <br>
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Buddy has been feeling great since starting the digestive enzymes. He is taking <a href="http://www.enzymedica.com/store/Digest-Gold" target="_blank">Digest Gold</a> before every meal and snack. We purchased the enzymes last July, but I got nervous about trying too many supplements on my own, without the direction of healthcare provider. When I called Dr. Deb a couple of weeks ago, explaining Buddy was having sharp/crampy tummy pain soon after eating, she said to introduce the enzymes. They have worked wonders! He isn't having tummy pains, he is falling asleep easily, and wakes up rested. His overall mood is upbeat, which is great to see. Hopefully this feel-good stretch continues! It has been 11 months since Buddy was diagnosed with celiac disease. <br>
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<tr><td class="tr-caption" style="text-align: center;">Enjoying a rare <i>warm </i>Spring day.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Caught his limit on opening day!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our tiny dancer.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cutting flowers for her teacher.</td></tr>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-67445472875172852422013-03-15T14:28:00.001-07:002013-03-24T08:03:40.688-07:00Darn SIBO & Yeast!<br />
Well, Tootsie had a major setback! As you probably know, she's on a monthly maintenance dose of Xifaxan for Small Intestine Bacterial Overgrowth (SIBO). She has done amazingly well this past year while on this regimen, but at her last GI appointment in December her GI doctor (and my hubby and I) thought it would be a good idea to try to space the intervals out to every 2 months. The dietician thought she needed to gain a little weight and recommended whole milk with cream several times a day for added calories. Well...that was a recipe for disaster! We made it 6 weeks the first time around and Toots began to belch and pass gas frequently, and ended up back on Miralax. She had been off of it since April of 2011. We treated her with the maintenance dose of Xifaxan and she seemed to feel okay...still burping and farting, and needing Miralax, but seemed like she was plugging along okay and was her happy little self. Well, we tried to push it 8 weeks again and made it 6 weeks...her symptoms were worsening. She started waking up earlier and earlier in the morning. Her normal wake-up is 7am. She was starting to wake up at 6am, then 4:30 or 5am. She was beginning to have mood changes and nightmares. I knew this meant the bacteria was out of control. It had only been a week and a half since she finished her last round of Xifaxan, but I felt we needed to do something so I started her on another 5 days. Things weren't getting better. I called her GI and told him I didn't think the Xifaxan was working. He really wanted to get her in for a breath test to test for SIBO. I thought that was a great idea. I called the lab and they couldn't get her in for 3 weeks. I told them I'd take it, but to call me if they had any cancellations. As the days went on, I knew she wouldn't be able to handle to pre-test diet and called GI back to see if we could try a round of Flagyl. He agreed to give it a try. <br />
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Over the next couple of days she started having "events" that looked like seizures. She would feel them starting in her legs first and she would start thrashing around kicking her legs, stiffening her arms, and arching her back. She would either grunt or scream out as her body stiffened. These events would last anywhere for 2-10 minutes and were happening frequently...2-5 times per day. We called down to her GI and told them we couldn't make it 3 week for the breath test, and described the events. They wanted us to see the neurologist. I called for an appointment and they couldn't get us in until April 10th (2 months!)...there was no way we could make it 2 months. A couple more days went by and she began having these episodes in her sleep so we packed up and headed for the ER at the Children's Hospital where she's a GI patient. She had an "event" in the ER so they decided to admit her overnight for a video-monitored EEG.<br />
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The technician arrived at 8PM to get her hooked up. She ended up having an event around 9PM. We were so happy it happened while she was on the monitors.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGeHVJNjrHFxfPPlIb2tC6EP7pYRmtFY3LDQb797BOC-3Bc1bufoKExiAjqJuQnRwYowcaRc8QTTcFrlmEyfB8l-0g1Dqa3mjmaa_NhWaPNl_qKhw4qqb8ebxrRftbk2I6ebw9dV8L6WXA/s640/blogger-image--1051710000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGeHVJNjrHFxfPPlIb2tC6EP7pYRmtFY3LDQb797BOC-3Bc1bufoKExiAjqJuQnRwYowcaRc8QTTcFrlmEyfB8l-0g1Dqa3mjmaa_NhWaPNl_qKhw4qqb8ebxrRftbk2I6ebw9dV8L6WXA/s640/blogger-image--1051710000.jpg" /></a></div>
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The neurologist made her rounds at 11PM and talked with us for an hour. She was amazing. We loved her bedside manor and we felt completely at ease with her. She said Tootsie's events were non-epileptic seizures. She said it was stemming from the infection/imbalance in her gut and once we got that squared away she predicted Tootsie would return to normal. I pointed out that Tootsie's tongue had become quite coated with yeast and I felt like it was contributing to the episodes somehow. She agreed that Toots had thrush and could benefit from yeast treatment. She prescribed 14 days of Nystatin, 5ml - 4 times a day. We were released the following day and couldn't wait for the anti fungal to kick in!</div>
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<tr><td class="tr-caption" style="text-align: center;">8th day on Nystatin</td></tr>
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After about 24 hours on the Nystatin, Tootsie started having die-off symptoms. She was acting intoxicated. Seriously, like a little drunk person. Over the course of a week things were improving, but not as much as we had hoped. She still had the thick coating on her tongue and she was still having seizures, although not as frequent as before. I ended up taking her to the walk-in clinic to see if we could switch her over to fluconazole (Diflucan). The doctor thought the coating was just too thick for the Nystatin to penetrate and said it could take weeks to see any improvement. He thought it was a good idea to switch to fluconazole. He prescribed 3 days worth. We saw immediate improvement! By the next morning the coating was starting to disappear. While on the new medication she didn't have a single seizure. It wasn't until the 3rd day after finishing the fluconazole that we started seeing the coating return and felt like the seizures would soon follow (and they did...she had one that night). She was due for her well-child exam with the pediatrician that day so I asked if we could do another round, a longer course. Her pediatrician felt like a 7-day course would be best...and wanted to do a liver & kidney functions test if we needed to go any longer than that. Seven days seemed to work pretty good. Her tongue now looks completely normal and the seizures haven't returned. <br />
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We saw GI for a follow-up after all of this and he is thinking about changing up her monthly treatment, but said he'd get back to us. He's thinking of alternating an antibiotic with an anti fungal each month. We'll see what he comes up with. We are having a hard time with the idea of having to medicate every month so we've consulted with a naturopath that specializes in SIBO. She recommended purchasing the book, <a href="http://www.amazon.com/Gut-Psychology-Syndrome-Depression-Schizophrenia/dp/0954852028" target="_blank">Gut and Psychology Syndrome by Dr. Campbell-McBride</a>. The book is really good! It totally describes what Tootsie is dealing with (minus the autism) and suggests a specific diet to follow....and supplements to introduce. The only problem is, half the foods on the diet are off-limits to fructose malabsorbers. Lame! She also outlines a way to introduce a probiotic, which we haven't had success with in the past. We are giving it another try and this time starting with a very small amount and slowly working up to a therapeutic dose. <br />
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Good news is, Tootie's back in school & dance and is feeling much better. She isn't 100%...I feel like there is some residual yeast in there, but I'm hoping the diet modification we are trying (no milk & very low carbs), along with the probiotics, and other supplements (cod liver oil, caprylic acid - in the form of <a href="http://www.amazon.com/Natures-Way-Organic-Virgin-Coconut/dp/B003B3OOPA" target="_blank">coconut oil</a>, sauerkraut juice - read the book!), will help her to feel great.<br />
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Here is a great website about yeast overgrowth: <a href="http://www.thecandidadiet.com/" target="_blank">The Candida Diet</a> <br />
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-61402547218165051342013-01-28T12:19:00.001-08:002013-01-28T12:24:51.401-08:00Hematology Results Are In!<div class="separator" style="clear: both; text-align: center;">
I spoke with the nurse this morning and she said Dr. I wanted to monitor Buddy's blood cell counts. The bone marrow biopsy is not necessary at this point! Yay! He was happy with the increase in Platelets and Neutrophils. Great news! He would like another CBC done in 3 months, then he'd like to see Buddy in 6 months. </div>
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The tests also showed he is not deficient in b12, he's not anemic and his SED rate (inflammatory markers) and other chemistries were normal. He was also up 2-1/2 pounds since starting Operation Weight Gain on December 29th (4 weeks ago). Dr. I didn't think the mild depression or sleep issues were anything concerning. He thought the anxiety from having his world turned upside down is all that is causing it. We'll work on relaxation techniques in the evening to see if we can get him in bed and asleep at a decent hour, which will help with his overall mood. The sore tongue that Buddy complained about was nothing more than an accidental bite...and the tummy upset seems to be non-existant if we keep up on his reflux medication. He is also on Miralax daily to keep from becoming constipated. </div>
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Tootsie is also up 2 pounds since December 29th! We are trying to stretch out her Xifaxan (for SIBO) to every 2 months, but we had to start it at 6 weeks. She was having a lot of gas, a little tummy pain after eating, was becoming irritable, and was waking at 6:00AM, then 4:00AM instead of her usual 7:00AM. She's been on it for 3 days and is back to feeling good and is sleeping better. It would be fantastic if we could ever figure out why she gets recurring SIBO...Dr. L (GI) couldn't give us an explanation. FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com2tag:blogger.com,1999:blog-3059516564899687400.post-40966346445209634152013-01-25T13:38:00.001-08:002013-02-02T08:22:36.233-08:00Now we wait...Well, we don't really know much until the lab results are in on Monday. The hematologist, which we liked very well, wanted to run more blood work. He said if the neutrophils and platelets are lower, then he'd need to do a bone marrow biopsy to see if Buddy's blood factory was working properly. He will also be looking for anemia and b12 deficiency...and various other things. He said b12 deficiency is actually a serious thing so we're now hoping he doesn't have that. The doctor didn't think he had it because his RBC level was normal at his last draw. I should have some results to post on Monday... <br />
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<tr><td class="tr-caption" style="text-align: center;">Waiting is boring.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Not so boring when the office has an Xbox!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Trying to be brave, but this part really gives Buddy anxiety.</td></tr>
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FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-14160650710209389842013-01-21T13:59:00.002-08:002013-01-24T17:18:03.341-08:00Celiac Genetic Panel Results & Hematology <div class="separator" style="clear: both; text-align: center;">
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We heard from Dr. L's nurse and we got great news... Miss Tootsie's genetic panel came back with the following results: low risk, lower than the general population. We are thrilled! That was exactly what we were hoping it would say. What a relief!<br />
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Buddy's pathology & scope report look good. Again, no evidence of eosinophilic esophagitis, no h.pylori, no defects or lesions. Great news! But...Dr. L wants him to see the hematologist for his low white blood cell and platelet count. Here are his readings:<br />
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It took me a few days to digest the news and to get up the nerve to research what could be causing this. One thing I came upon that doesn't seem too scary, and seems to fit, is B12 deficiency.</div>
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<b>Vitamin B12 Deficiency...</b></div>
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•Common in those with celiac disease, bacterial overgrowth & in those using acid reducing drugs for a prolonged period.</div>
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•Symptoms: </div>
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pale skin (√)</div>
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sore tongue (√)</div>
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easy bruising (when he was playing soccer)</div>
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stomach upset (√)</div>
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weight loss (√)</div>
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constipation (√)<br />
trouble sleeping (√)</div>
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mood changes/depression (√)</div>
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•Clinical manifestations of vitamin B12 deficiency include:</div>
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Hematological changes, such as megaloblastic anemia (characterized by large red blood cells), and a low production of other blood cell types, which is known as pancytopenia. Types of pancytopenia seen in vitamin B12 deficiency include leukopenia (low white blood cell levels), thrombocytopenia (low platelet count), and anemia.</div>
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Hoping and praying this is all it is! We see the hematologist later this week.</div>
<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0tag:blogger.com,1999:blog-3059516564899687400.post-69942794696866572852013-01-12T09:00:00.000-08:002013-01-12T21:00:34.945-08:00Proceeded with Endoscopy<br />
I was hoping we wouldn't have to do another scope since Buddy was doing so well this past week, but his doctor thought we should, and I'm glad we did. Dr. L said it showed gastritis (inflammation of the stomach) and inflammation of the lower 3rd of his esophagus. His blood work is in, but the pathology results haven't been posted yet. From what I can see on his online chart, his white blood cells, total neutrophils, and platelets are below the normal range. Not sure what that means, if anything. The good news is - he gained 2 pounds, the villi have grown back in his small intestine, and his celiac score is 5!! Six months ago he had partial to subtotal villous loss (villi increase the surface area for the absorption of nutrients in small intestine)...and his celiac score was 56 (it should be under 19). We should get the pathology results by Wednesday...hoping it's sooner, I'm not good at waiting!<br />
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Dr. put Buddy on Carafate 4x a day to help heal the inflammation. So far it is causing some tummy cramping, headaches, and it is decreasing the effectiveness of his reflux medication. He's suppose to be on this for a week. He missed school yesterday because his stomach was hurting and he was "throwing up in his mouth". Yuck. He's been up for an hour this morning and so far no complaints...but he hasn't eaten yet so we'll see... <br />
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So we are seeing some improvement, but we need to get the reflux and inflammation under control. He is still having issues with fructose. I started pushing his limit and allowed 1 mini GF cupcake on his birthday, then 1/2 a clementine orange that evening and he was sick for 2 days. Darn. I was really hoping he could tolerate it.<br />
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Tootsie had her blood work done for the celiac genetic panel while Buddy was in recovery. Anxious to get the results!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXMQS_0bIdhkz9tW2Oq5RvWQUCLOjkeQmKNXBKd_TPQ62SHzowWYV00yFZchNjqsjQW-qUif2r5Cu6phCLV7nU1obb7l2RbCkhhyW65uIW6lJWf-WbT3vQ5uaN997mBXfxq6Fe_BdPSQuQ/s640/blogger-image-1171583273.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXMQS_0bIdhkz9tW2Oq5RvWQUCLOjkeQmKNXBKd_TPQ62SHzowWYV00yFZchNjqsjQW-qUif2r5Cu6phCLV7nU1obb7l2RbCkhhyW65uIW6lJWf-WbT3vQ5uaN997mBXfxq6Fe_BdPSQuQ/s640/blogger-image-1171583273.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Numbing gel</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTqgsJg5s9RZCkJn2Li-aiyCWdlbwGEbAKB66LWy3q2VV8LGNGI6DoH-XGHoEVzZn8uBMB9xQwcK8I9jyCUmEgesX6kM08RehMjK8xVNwnr-FyxjPOEk3A4pk94KDCuswzAN8xA6KjHuRP/s640/blogger-image-443818367.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTqgsJg5s9RZCkJn2Li-aiyCWdlbwGEbAKB66LWy3q2VV8LGNGI6DoH-XGHoEVzZn8uBMB9xQwcK8I9jyCUmEgesX6kM08RehMjK8xVNwnr-FyxjPOEk3A4pk94KDCuswzAN8xA6KjHuRP/s640/blogger-image-443818367.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Warming packs</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijx5UaoAp3b3r1RwiBb6mvqy2CgfvF8hju2boLP3yEotKibTQ85ZGSHppwjpW5-HoMMwi71jhllAEJQDrGwzMvZVeIc2-KbKwmoPiA8BPWGd6UG7uxxtDb_5nEIXcBxW2mHcQ71bLXVqop/s640/blogger-image--130364254.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijx5UaoAp3b3r1RwiBb6mvqy2CgfvF8hju2boLP3yEotKibTQ85ZGSHppwjpW5-HoMMwi71jhllAEJQDrGwzMvZVeIc2-KbKwmoPiA8BPWGd6UG7uxxtDb_5nEIXcBxW2mHcQ71bLXVqop/s640/blogger-image--130364254.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I.V. is in! He said it hurt, but he was brave.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFongYzCxVGZ2icNe-K0DBdFA1dqwIpQ2Gxn_FDNlrzglh3Cto133qRvrWKa9JMn5lIcUmrerCHNI_ndm0FEbBIg4rWdi8vL_d_oB56gqrkkne46j5403s_A3Td8Dpfkt9m_nt3u_yG4E2/s640/blogger-image-705923673.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFongYzCxVGZ2icNe-K0DBdFA1dqwIpQ2Gxn_FDNlrzglh3Cto133qRvrWKa9JMn5lIcUmrerCHNI_ndm0FEbBIg4rWdi8vL_d_oB56gqrkkne46j5403s_A3Td8Dpfkt9m_nt3u_yG4E2/s640/blogger-image-705923673.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is when the nerves kick in! Lots of tears and anxiety when he jumped on the bed this time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWOTVw677H4_G1buBOeyLVUkGUXKR0grOXIhycIdhS9E2SuDVt8tFjst4Sq4zl1FWyqJkOKdU4vJiGrQ6Oa6To2RzLcmlTtcyh9z93mj8FNHEvJw5xlsR48mjjsfQrR-Ir75bRU_CtqJPT/s640/blogger-image--1268234102.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWOTVw677H4_G1buBOeyLVUkGUXKR0grOXIhycIdhS9E2SuDVt8tFjst4Sq4zl1FWyqJkOKdU4vJiGrQ6Oa6To2RzLcmlTtcyh9z93mj8FNHEvJw5xlsR48mjjsfQrR-Ir75bRU_CtqJPT/s640/blogger-image--1268234102.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He did it! Such a silly boy when he wakes up. He was making us laugh.</td></tr>
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Update: Buddy ate a Swedish pancake and now he's curled up with stomach cramps. I have a call into the after hours nurse to see if she can page the doctor. Not sure if we should continue with this medication.<br />
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Update #2: I spoke with the on-call doctor and he said to stop the Carafate. He said it's not an uncommon reaction...either the kids tolerate it or they don't. We didn't give him his second dose of the day and he was able to eat lunch without pain. Yay! We should hear from our regular doctor on Monday, but the on-call doctor said he didn't see anything alarming on pathology results. Good news!</div>
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<br />FructMal Mamahttp://www.blogger.com/profile/18230206491484018033noreply@blogger.com0