It's been a long time since I've had time to update everyone on what's been going on with little Tucker. After he adjusted to the g-tube/fundo, he seemed to be doing much better. He gained weight well and was tolerating his feeds. That all changed about 3 months ago. He was on Pregestimil, but started retching all the time, so the GI switched him over to Neocate. He did GREAT on that for about 2 weeks. We thought we had a cure-all. He was eating more PO and not retching nearly as much....maybe once a day. Well, he's started retching more and more lately. The GI can't figure out what is going on. He initially thought he was allergic to something in the Pregestimil, that is why we switched to Neocate, but now that he's retching with that, he's not sure. To make a long story short, our GI is talking about readmitting Tucker into the hospital for more tests or a rework-up of the previous tests. He's been having a lot of bile, so he is wondering if it is his gall bladder, but doubts that is really the underlying issue. Last week (at our bi-weekly doctors visit) I asked what Tucker's official diagnosis is at this point. The doctor jokingly said "his diagnosis is being Tucker." Basically, he can't figure out what is going on. We think we have a problem solved, and then it gets worse. My husband and I discussed waiting until Tucker's 1 year birthday to see if things are improved, and if not, getting him into Shands or Miami Children's (we are in So. Florida) for them to check him out. At this point, I kind of feel like if our GI is going to readmit him for more tests, why not go ahead and go to one of the teaching hospitals now instead of waiting 2 more months. (He will be 1 yr on 3/15).

Tucker is doing great neruologically, he's totally with it. But he's small, so he can't do a lot of things his twin can. He can't sit up unassisted, or crawl or anything like that. He does roll over though. I attribute a lot of that to the fact that he spent the first 5-1/2 months of his life in the hosptial, but I was hoping he would continue to grow and get stronger. He has stalled in his weight gain at 12 lbs 2 ounces. Kendall, his twin sister, weighs nearly 19 lbs now and is a "normal" 10 month old--crawling, etc.

It is so frustrating not having the answers. I know that GERD started this all, but am wondering what is going on with him now.

We've been trying rice cereal with him--could that be sticking and causing the retching? He barely eats any formula PO anymore. He was doing much better--eating 3 ounces. Now we are excited if he eats one. I feel like we've taken a major step back. I know our little GERDlings require patience, but sometimes I am at my wits end, wondering why we are going backwards. It is horrible to watch him retch, it just breaks my heart.

OK, enough of my venting. Sorry, I just needed to spill my guts to people who understand what this is like. Any advice would be greatly appreciated!

Victoria

I have no advice, but I hear your frustration and pain. Yes, any foods you introduce can cause the increased vomiting if he just doesn't tolerate them well or has an allergy. I'm not sure if it would help at this point, but it might in the future: there is a book called "Is this Your Child" by Dr. Rapp. It's all about food/environmental allergies.

I hope you get some answers very soon.

Hello, nice to see ya again! How long ago did he have the fundo? I know at a certain healing point inside things can get worse for them, this happened with mine. And also, the younger they are when they have it the quicker they outgrow theirs as they grow so if he has grown alot since the surgery that could really affect him. :hug: Keep us informed please!

Hi
I'm sorry I can't offer any advice but in case it helps- we are in the same sort of merry-go-round (Minus the Fundo- yet...). We change something for Daniella (severe GERD- diagnosed December- now 1 year old) and she improves for about a week then falls in a heap again.
It's so discouraging... so we are doing the same thing- GI has no clue so we are in the process of arranging to go to Boston Children's Hospital hoping to get answers.
I am thinking of you and glad that I am not alone! :)

He had his fundo/g-tube surgery in August. He was doing well for a while, gaining weight, etc. We just seem to have taken a major turn for the worse in the past month or so. It is so discouraging, I truly appreciate all of your support.

This is small possibility but it sounds like perfect timing for it to swell again as it is healing, E got worse during this time, we think the stitches were swelling as the healing was going on. It takes a long time to heal in there... I know it is discouraging. Eli did well and then got worse but then he got much better after that. Hopefully, it will be the same for you. It takes time for the digestive system to get back on track after the fundo, a long time. Have you talked with the docs about this, what do they think?

They don't know what to think. I talked to our GI's partner today (he was on call) and he doesn't think that the fundo slipped. I didn't ask about swelling though. He wants me to put Tucker on a pump (we've been PO feeding and then bolus-ing by gravity). I tried the pump during this last feeding, but then he retched and it was worse b/c he couldn't actually get the liquid/gas back up through the pump tube. So, I switched back to gravity and am just going very very slowly. It has been taking about 2 hours to feed him 115 ccs. So it is almost like he's on a continuous feed. I think that is part of the problem, his stomach never gets a chance to rest. We go into see the GI next week, so we'll see what he has to say. His partner said that the notes in the file said that he wants to do another upper GI if he has to readmit him. I guess that would at least tell us if the fundo has slipped or loosened. UGH, the though to our poor little man going through more tests is so discouraging.

How is Eli doing?

sorry I have nothing to offer. I hope you find some answers soon. We are in the same boat with no official diagnosis--I like what your doctor said--diagnosis--Tucker.
Have you meet with a geneticist? I find ours to be the most helpful and boy is she working hard to figure our Sam out. Sam does better on the pump than with gravity feeds--I have to go slow--bolus over an hour any faster and he retches some. I also found he had trouble with the more concentrated formula at first and would only tolerate 20cal/oz, now he gets 30cal/oz and is doing OK with it

Eli is doing well, it took him about 9 good months to finally start really feeling better retching and healing wise post fundo.

I am not sure what advice to give and don't feel confident in what I would say since we have no experience with tube feeding... I do agree about giving his poor tummy a rest though.

We have not seen a geneticist. That is on my list of questions...should we? Tucker was at 27 cal/oz but then started retching a lot, so we lowered it to 20 and have not been able to get back up to 27. He's on 24 now and retching all the time. It's really weird, he does much better during the late afternoon and nighttime feedings than he does in the a.m. We both dread feeding him at his 6:30 a.m. feeding because we know it's going to be horrible.

One weird thing that I've always questioned our doctors and they tell us not to worry about: Tucker sweats profusely. His hair will be drenched sometimes. He's had CF testing, and that came back ok. Do any of your GERDlings also sweat a lot?

Hmmm, when E is miserable he sweats alot.... Strange now that you mention that. What you are describing makes me think even more that it "could be" the top of his tummy causing him to retch as it heals. I may and probably am wrong here. Eli did go through that a long time when it was healing, when he was too full or in the morning, mainly when more pressure was put on the top of his tummy I think, he would retch. This is just a theory or speculation on my part as I have been trying to figure out my own kiddo. Keep us posted. All of these little ones are different and can't really be compared to each other, unfortunately.

Thanks so much for the advice. The saddest part about this, from reading other gerdlings' pages, is that they may never figure it out. :(

Yes, it is sad:smt022 I wish E could just tell me where and what is going on so I could fix it...