Saturday, January 14, 2012

The New(est) Game Plan

So, after we found out that our allergist's office was closed and the diarrhea and bleeding continued, we got frustrated and called the gastroenterologist. Afterall, our gastroenterologist handpicked the allergist he wanted us to see.

We explained what we thought happened with the E028 and we were told quite frankly to call the allergist. We informed them that we had no way to reach her and the office was closed today.

Suddenly, we started getting some advice. Our gastroenterologist wasn't happy with Xander being on the tropical flavored Neocate Jr. In his experience, he says that his patients with chronic diarrhea do poorly on the tropical flavored Neocate Jr. He also said he never would have had us try E028, for the same reasons.

We were told that he prefers Elecare formula for children with chronic diarrhea. (Same thing-- amino acid, elemental formula-- just another brand.) And we were told to come get samples.

So off we jetted to the gastroenterologist. *sigh*

When we got there, they gave us two cans of unflavored formula and one vanilla flavored can. They only make one flavor of Elecare Jr. We were also given a packet of recipes with suggestions to put JUICE in the unflavored formula to flavor it. I was pretty annoyed by this since Dr. V told us to stay away from juice at all costs before we were ever sent to the allergist. The other recommendation was to flavor it with, get this, coffee. I think not.

The gastroenterologist's nurse let us in on a little "secret" that our gastroenterologist and allergist often butt heads and that she feared we were going to be the latest cause. Nice.

On the way home in rush hour traffic, with a screaming toddler that was now digging into his skin and had red patches all over his face, our allergist called.

She just had to listen to Lady Antebellum as she spoke with Brandon because that is all we could do to keep Xander's howling to a minimum. Bet she has never had that during a consultation!

We were advised by her to not give him Tropical flavored Neocate Junior anymore and to not give him anymore E028. Also, she had sent us home the day before with a stack of flavoring packets and most of those contain citric acid. We obviously were advised to not use those.

As we went through his history with her (again!) she thinks he's had a mild reaction to the citric acid for quite some time and that the E028 pushed it over the edge.

Here's why:

At first when we started the formula he would only take the chocolate-- and he was constipated but truly happy for the first time in his life. We immediately began to see improvements in his behavior, language and diapers!

When he went on drinking strike, we offered the tropical (upon her office's advice) thinking that he was being a typical 2 year old. He wouldn't drink it all the time, and drinking strikes happened often. So we were advised (again by her office) to alternate his choices. Their thinking was that he was used to having different flavors and was probably growing bored with his new limited diet.

And then we started having random loose stools. But NOT to the same extent as before. We knew that it could take quite some time for him to heal and we were told that this formula stuff was not going to be a quick fix. So he was still mostly happy and his bottom was not bleeding, so we figured this was just going to be a long term process.

Now that we have the big picture of the E028 with citric acid causing a huge issue, and we put the pieces together from his tropical formula, things look a little differently.

So, this is the new game plan: Vanilla flavored Elacare Jr. and Chocolate flavored Neocate Jr. We are also supposed to stay away from citric acid(!!!!!) no matter what! He goes in soon for a weight check. I'm praying that he maintained or even gained because I've heard the words tube feeding thrown around between the gastoenterologist and the allergist. Would you join me in prayer?

Brandon and I would like to maintain as much normalcy for Xander as we can. He's lost so much normalcy in the last few weeks. But we obviously want him to grow and be nourished too. I have a feeling we'll be walking a fine line between the allergist and the gastroenterologist. I do not intend to let them play tug of war with my child!

I got several messages asking how I'm holding up. I had a mini-breakdown yesterday and once Brandon got off work at 3pm the tears flowed. Emotionally it was very hard to watch Xander go back to struggling so very much. In a blink of an eye, Xander quit talking again. He was back to screeching and screaming about everything. He wouldn't lay his bottom down so I could change his diapers and diaper changing had become a wrestling match again. He had screamed for hours on end when Brandon got home. His thumb has a sore spot where he was sucking it furiously. Xander has been a thumb sucker since we took his pacifiers but lately, the callous on his knuckle had softened. He was sucking his thumb much less before this most recent episode.

Watching him regress so rapidly, took it's toll on me and after we got the new game plan, my body shut down. I was emotionally and physically exhausted. I was in bed sleeping by 6:30. Brandon woke me for dinner and I went right back to sleep.

If you remember, would you pray for endurance for me? This most recent reaction could take some time to work out of his system and Brandon has to work tomorrow. Also pray that the baby is okay during all this stress.

Hanging by a thread,



Our Adoption Journey to Eastern Europe said...

Poor baby! Praying for you all!

Donna B said...

Praying for you all. I hope things are quieter today and Xander's system starts to settle down.

Tracy said...

More hugs and prayers, Stephanie.