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,

Stephanie

One Step Forward, Two Steps Back...

This morning I woke up hopeful. That hope was quickly dashed.

You see, last night Xander sat at the dinner table with us, and we enjoyed our first "meal" together since Xander was put on an elemental diet. His sad eyes looked around at our food and I almost had to excuse myself. But Daddy reminded Xander that his food was in his cup and gave him a high five and Xander drank his formula and then asked to go play.

It felt like we were finally moving forward.

And then this morning, I changed very upset little boy's diaper and saw a bleeding behind and diarrhea. I racked my brain trying to figure out what could have caused it since I was SURE that he hadn't gotten any food last night.

And then I remembered the "juiceboxes." Our allergist had sent us home with some E028 Splash boxes to try. Basically it is pre-mixed elemental drink. And we let him have two while we were on a long car ride last night. One was grape-raisin and one was orange-pineapple.

Womp, wooooooooooomp.

There is a very small population of children on elemental diets that cannot tolerate E028. And there is another population that cannot tolerate citric acid--- which the orange box contained.

Womp, woooooooooooomp.

So, now we get to notify the allergist about his reaction and see what she thinks.

I would so love to get off this ride. But then I think back to how happy and healthy Xander looked when we had things under control. He was so different! And I get back up and put one foot in front of the other.

Anything for him.

Tearfully,

Stephanie

Poop Chronicles: Elemental Formula Trial Results Day 1 and 2

Photo Credit

Appointment Day: Xander drank one cup of chocolate formula for dinner after we got home from our appointment. He seemed less than impressed.

Day 1: Normally he would wake with a terrible diaper. This time it was different. Not completely normal but much different than what we were used to. He drank 4 cups of his formula today-- 2 Tropical and 2 Chocolate. This evening he had a dirty diaper that was NORMAL! I seriously had to check which son I was changing! Overall today, he wasn't doing his blood curdling scream. He used more words instead of screaming. He looks more relaxed and didn't fight me when I changed his diapers. He actually didn't even ask for food except for when he saw Solomon munching on a pretzel. Part of me wonders if he already realizes that food was hurting him. He only had 2 dirty diapers total today which is a marked difference from 3-7.

Day 2: When he woke up he was only wet. This is a marked change. He only drank 3 cups of his formula today, but I'm not supposed to worry because that is enough to maintain his weight. No blood curdling screaming. He did fuss quite a bit today but I think that is related to him not understanding what is going on. He sat at the table today and colored but he now refuses to sit in his chair. (We took the front bar and crotch bars off of the highchair to make it more like a toddler chair.) I guess he figures if he isn't eating he doesn't need that chair. Before all this though, he was starting to want to sit in the other chairs like his big sisters so maybe I'm reading too much into that. Only one dirty diaper today and not diarrhea. His tummy looks less bloated too. He did not ask to eat at all.

We are not asking him to sit at the table while everyone eats. In fact, I've been taking him in another room and allowing him to watch Handy Manny while he drinks his cup. Making him sit at the table while others eat just seems cruel. By the time Handy Manny is over the children are usually done eating, so he goes to play and I eat my dinner in another room away from him. Again, we are struggling with a lack of normalcy. Mealtimes in the past have been our reconnection times. We used to all sit together and talk about our days.

The formula smells very nasty and is doing a number on my morning/all day sickness. We are going to buy a mixing pitcher and have Brandon mix it at night so that I can just pour cups.

We have a few prayer requests:

1. Neocate Junior costs about $35 a can. That lasts almost two days when he doesn't take the four cups every day. Quick math says that it will be at least $525 a month. This is more than we budget for groceries, or our van payment. Seriously, OUCH! Our doctor is working on having our insurance cover it. Other families have warned us that because he is taking it by mouth, not by tube, that they may reject the claim. We are praying for the claim to go through without a hitch. Our insurance has pleasantly surprised us in the past. We are hoping for that to be the case here too. In the meantime, our doctor gave us samples while she is trying to process our insurance.

2. Xander's MRI appointment has been moved up a little. He was the third case on Tuesday the 27th and one cancelled so we have to be there at 8 am instead of 9. I'll be by myself since Brandon is in training for his new company. Please pray for us. I don't tend to do too well waiting, even when Brandon is with me. I've been warned he may be back for up to an hour. Also a friend of ours is keeping the other three. Please pray that they are well behaved and mind their manners. Also pray I get to where I'm going on time and without getting lost. I'll be living in my van that day between taking Brandon to work, dropping the 3 off and then going across the river to Xander's procedure, then taking the discs to the doctor's office, then picking up the kids and then picking up Brandon.

3. Please pray that we are able to enjoy Christmas. I don't want all of this to eclipse the celebration of Jesus' birth. God is our strength and rock and if anything this trial should magnify Him, not minimize Him.

I pray you are enjoying your Christmas Eve with your family as well.

~Stephanie