THIS EMAIL BRINGS TEARS TO MY EYES

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. 


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!! 


Our momma instincts are there for a reason...we must listen to them! 

* 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: HFI Laboratory HFI University.


Hello!

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. 

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.

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.

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!

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….

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.

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. 

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.

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. 

With the sincerest heart, I thank you.

~ "Jane"