Tuesday, February 14, 2012

Addison - 15 month Update

15 months old - just before rectal biopsy under anesthesia #3

My head is spinning with new information today; I'm not even sure where to begin so forgive me if this kindof rambles all over the place. Addison had her 15 month checkup today. She weighed 16 lbs 2 oz and 29" tall. We discussed all the usual things Addison, pooping, growing, development, etc. Alot of things are still the same - ie: keep up with therapy, etc. We're doing everything we can from a developmental standpoint so not much to discuss there.

However, there are some new things to share. After trialing some new pediasure formula that gave her bloody stools, vomiting, and was a major fail, we went back to what we had been doing before, but that didn't work either. The pain was getting to be unbearable and there was at least one instance in the past 2 weeks that was so bad that we drove her to the emergency room. She was distended, irritable and not sleeping everyday. Each day was getting worse, and I called back and forth from the dietician, GI, and ped trying to figure out what the best plan was. Finally, we decided that gut rest would be the best route. We stopped all the table foods she had been eating and went back to a strictly elemental diet, so now she is getting Neocate formula in bottles again, and Neocate Nutra medical food (its like an elemental high calorie babyfood/pudding for kids with severe GI disorders).

Instantly, we saw a huge change in her. The pain improved drastically, her strength and endurance and energy went through the roof. The craziest part is that she started walking, almost overnight. She's consistently been taking 8-10 steps around the house. But more about that in another post - I have an adorable video im too excited to share about her steps.

The pediatrician thinks that normal food is just to hard on her little body, and whatever element of it that she can't tolerate becomes toxic to her and begins to accumulate in her system. The longer this goes on, the sicker she gets. He's like, "Medically I have no idea WHY that would happen, or why Nutra/Neocate IS okay for her, but whatever it is, we found it and its working so that's the bottom line." She's responding wonderfully to the combination of treatments we are doing now. I hate not being able to let her sit in her high chair and eat like a normal kid - and she is pretty much in tears the entire time we eat dinner. :( Hopefully soon she will adjust and 'forget' that she used to eat regular food.

We resumed her immunizations today, but will give them on a delayed schedule so we can see how she reacts to each one before moving on to the next. This was a hard issue for me because on one hand, she's vulnerable to those types of things and she could get much sicker than the average kid if she contracted a disease, and I would feel like crap knowing I might have prevented it. My other kids are fully vaccinated. On the other hand, her little body has such strange ways of reacting to things that I hate even giving her baby tylenol, so I was needless to say reluctant to inject a bunch of other crap into her as well. BUT I trust our peds judgement on this completely, so I am going to step back and just hope for the best and no reactions.

The irrigations are going better, she's tolerating them better now that she's not so sore down there from the exam/biopsy. Its definitely the hardest part of my day, and doing it 2-3 times a day just seems cruel - but its working. I was surprised to find she is leaking stool in between irrigations, and its giving her a terrible rash - almost like an acid burn all over her diaper area. This is a common cycle with kids that have motility issues like Addison, so hopefully we will be able to keep tweaking our plan and it will just get better with time.

We have a new diagnosis to add to the list: Raynaud's. That is what is happening with her hands and feet. Its relatively common in adults, but extremely rare in infants. The loss of her ability to coordinate movements of her fingers well anymore is a sign that her case is more severe and the episodes are happening so frequently and so severely that the lack of oxygen for extended periods of time is permanently damaging the tissues and muscles in her hands and feet. She is always staring at her hands now, and poking at her feet... I think she is starting to realize they are hurting and feeling 'asleep' frequently. The problem is that if damage is already being done from it, there's not much they can do for it besides try to avoid things that trigger the episodes - which are now happening 10-15 times a day. Hopefully we will see a specialist soon who can better fill me in on what this may mean for her and any treatment that may be available. Finally, can I just say that it feels good to have ONE thing that is wrong with her actually have a name.

Phew - that was long! I think I'll do a big post of pictures later, its been awhile! Thanks for checking in with us :)



  1. Did Cincinnati decide to give the gut a rest? So happy that you are finding some answers:) Michelle

  2. Thank goodness for some answers, even if just a few. We continue to pray for Addison and your family.

  3. I am thrilled to see how well Addison's body is responding to the Neocate. It's amazing that just eliminating table food has given her such an increase in energy and mobility. Makes you wonder what's in "our" food that these pure, new, little tummies cannot handle? I cried reading that she had a major improvement overnight. I've prayed vigorously for God to lead you & Adam to the perfect doctors for Addison. Now I will pray for them to find the underlying cause of the Raynaud's so they can treat those symptoms!

    I wanted to give you the name of some rash cream that is helping Scarlett. Scarlett is on Bactrum daily for antibiotic therapy and it breaks her bottom and "girly area" out in blisters.
    It is called CALMOSEPTINE OINTMENT. We use this in place of Desitin and it's fantastic and cheap too! It's over the counter but some pharmacies do not stock it; you'd have to ask them to order it. You may actually be able to get some samples from the hospital. If you like it and can bypass the pharmacies you might see if you can order it directly from the manufacturer; it would save you a trip into the drugstore. Their website is www.calmoseptine.com and the phone # is 800-800-3405.

  4. Hello, I'm so happy that everything went as well as can be expected. I'm trilled that she is up and mobile again. It seems you are on the right path with the new medical staff and answers are starting to appear. We will continue to hold Addison and your family in our prayers. (Did you get my email in response to yours last week?) Thanks and God Bless.