Friday, April 15, 2011

Back home from Columbus, for now.

Thanks for being patient on an update while I got some sleep and tried to wrap my mind around all the information we got yesterday.

As I said yesterday, we met Dr. Mousa for about an hour to discuss Addison's history. She had several ideas as to why this might be happening and what our next steps are. Then, we took Addison to the OR where Dr. Mousa performed several biopsies from various places in her colon, and did a sigmoidoscopy and anal manometry to check and make sure the sphincter is working correctly. Addison did well under anesthesia, just had a small reaction to the tape they used to secure her breathing tube. There was a bunch of confusion as to where they were supposed to bring her after recovery and to make a long story short, there was a tense few minutes where I didn't know where she was and no one else seemed to know either - it was a little panic but everything was fine - she was snoring away in a different recovery area. :)

The results of the biopsies will not be available for a few days, but she told us that she saw inflammation in Addison's colon that might be suggestive of Protein Intolerance. Her symptoms would be quite severe, compared to other kids who typically have this diagnosis, but its still important to rule out or confirm - because there is always a chance it could be that AND something else as well. Our other doctors have never felt that this was an allergy/food intolerance so I guess I am a little skeptical that it would be something that 'easy' when I have already tried an elimination diet once and and amino-acid based formula before.

So the first step is to do a trial of Neocate. I will continue to pump my breast milk and freeze in case this doesn't change anything.  We will do 2 weeks for sure, then call and update her and probably continue the Neocate for another 6 weeks or so to give it a full chance to heal her gut.

She is also going to be on permanent antibiotics to keep her pooping now instead of rectal irrigations. It gives her bad diarrhea, which is concerning to me because she's already struggling to grow. I don't really understand how we are supposed to know if the special Neocate formula 'fixes' her if she's having diarrhea multiple times a day. I worry that she will have trouble staying hydrated too. This will be one of those things we will just have to watch her closely and monitor her weight, bowel movements, etc. and make adjustment as concerns arise.

If this isn't the problem, Addison will be 7 months old by the time we resume testing. Everyday that she edges closer to her first birthday, it becomes more and more imperative to me that we figure it out before shes old enough to understand what is happening.  However, the next round of tests are extremely invasive and involves scoping her entire GI system. I know I should be happy we have something relatively painless to try right now but it feels a little bit too much like 'sticking a bandaid on it'.

The formula and meds are not covered by insurance and going to cost us $627/month. She will also be starting a babyfood that is amino-acid based and all allergen-free too. Its so sad that the companies can take advantage of kids that HAVE to eat this stuff and charge whatever they want for it. I'm going to call around today and see if there is any help available from local agencies, but I can't imagine how anyone can afford this stuff. It will only get more expensive as she grows and requires more ounces. Adam already works three jobs to be able to take care of Addison and the rest of us. I can't let myself stress about how the financial part of this will play out - I just know that we will do whatever it takes to get her what she needs. Please pray that God will provide a way for us to make our money stretch to cover all these things.

I'll write more later, there's much more to share.


  1. Somehow when it seems the money had run out, it just appears! That is the last thing you should stress about! Good job Addison for getting through such a rough day (and mommy too!)

  2. Kim, I think about you and your family daily. I'm sorry to hear you are still going through a stressful time, but I have nothing but great things to say about Childrens. I hope and prayer they find the answers for you as well. They did a great job with my daughters surgery, although it is nothing compared to what your beautiful little girl has to go through! Stay strong, keep your head up. There are many out there praying you guys get everything you need & want to help Addison. God Bless you and your family!!

  3. I found your blog through a friend of mine. I have a son who has a protein intolerance, among other things, and is FTT. He is 100% tube fed. We have been on a search for answers for the past 17 mos, so I understand your trials. :-) In any case, he is being switched from Neocate Infant to Neocate Junior starting in April and I have a lot of extra formula that I would be happy to ship you (in sealed, unopened boxes). Also, in almost every state, insurance is legally required to pay for elemental formulas, so you may want to look at your state laws on this. But, feel free to email me and I will be happy to send you our excess Neocate.

  4. If you have a semi firm diagnosis are there any "supplemental insurances" that help out with patients who have that diagnosis? I know when our son was being tested for PKU they said that there is a supplemental insurance that would help cover the cost of clinic visits, and the state had grants that would cover all prescription formula.

    Praying for someone with financial knowledge to give you a call and work with you about everything. I know it's hard but try and put it into God's hands.

  5. I love that this blog has brought people to you who are willing to help. That was my biggest wish for it and it looks like it's working. I've been doing a lot of thinking about other ways to help you guys! I'm glad you're home and Addi's recovering. Love you sis!

  6. In any of their testing so far have they brought up a gluten allergy? She probably hasn't taken in any wheat products quite yet, but a lot of medicines and other products use gluten too. I'm just asking because if she is gluten intolerant any gluten will affect her immune system and small intestine which causes the nutrients to not absorb and a lack of growth. I hope you find answers soon!