GI appointment UPDATED AGAIN on PAGE 2

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Joined: 12/01/05
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GI appointment UPDATED AGAIN on PAGE 2

UPDATE: I took him for a modified barium swallow today, and it threw me for a loop. Apparently, he is collecting food and liquids in the back of his throat and is at "very high risk" for aspiration. They are strongly recommending nothing by mouth until they can fix it, which will mean a balloon dilation of his esophagus. Until then, nothing but tube feedings, and he is really devastated. The one thing he looks forward to every day is eating, and now he can't. And he feels hungry all the time because the tube feedings aren't filling him up. The GI doctor ordered 2 oz of Pediasure every 2 hours, which if you do the math is only 1 1/2 cans a day, not nearly enough caloric intake and not nearly enough to make him feel full. This recommendation came after hours, so I will be calling first thing in the morning to complain and see what they can change.

Hi all. I'm not going to go into a lot of detail, but I feel like we're going somewhere with the GI appointment. She totally validated my concerns about his GI system slowing down after the stimulator implants and my instincts that the new formula that the nutritionist recommended could be part of the problem. She stated that when kids get stimulator implants, it frequently causes issues with the entire digestive system. She ordered a gastric emptying scan to see if his stomach is emptying properly. She also wants him to have a modified barium swallow, which he's already scheduled for today. Then she wants us to see the nutritionist. He's having so much trouble eating that he's using more calories to eat than he is getting from the food. The concentrated formula does not have enough water in it to keep the intestines working, and the more concentrated it is, the longer it takes to empty from the stomach. There are a whole lot of factors related to what's going on with him, and I am so glad that we saw the GI doctor. I finally feel like we have a plan.

Joined: 05/05/04
Posts: 435

It sounds like you have a really good GI doc. I hope that she gets everything running smoothing ASAP!!!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I will take that as good news. It is so nice to have a doctor validate your concerns. It sounds like it must mess with the autonomic nervous system.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

That’s Wonderful! It must be a huge relief to have someone who really seems to be working to help him. I’m so glad that you got in early, and I hope that you get some results quickly. I hope Isaiah gets some relief soon.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Yeah for progress!:clappy:

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

One step forward and two steps back. Yes call and complain. He can't go that long without the right amount of calories. So glad you know this though.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Please keep us posted. You are so on top of everything! You must be exhausted...
Very best wishes!

Joined: 05/05/04
Posts: 435

Sad I hope you get an updated amount. That's crazy. I can't imagine either of my kids being ok on that little food.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Thank goodness he's got you! As PP said, one step forward, two steps back. Optimistically... at least we are moving forward on getting him able to eat. When do you find out a date for the balloon dilation? I hope it's soon so he can eat! Can he chew at all? Have a sucker/lolipop for flavour? Do you still have help?

Hugs to everyone. I can imagine being exhausted without other children or being pregnant. You are a complete hero! Now don't forget to take care of yourself either!

Joined: 12/01/05
Posts: 1000

"sarahsunshine" wrote:

Thank goodness he's got you! As PP said, one step forward, two steps back. Optimistically... at least we are moving forward on getting him able to eat. When do you find out a date for the balloon dilation? I hope it's soon so he can eat! Can he chew at all? Have a sucker/lolipop for flavour? Do you still have help?

Hugs to everyone. I can imagine being exhausted without other children or being pregnant. You are a complete hero! Now don't forget to take care of yourself either!

Thanks so much! The doctor hasn't prescribed a balloon dilatation, so I don't even know if she's going to do it.

We actually got to see the nutritionist today, and she calculated the number of calories he needs, and it's probably twice what he was getting over the last week or so. We have a plan in place, we just need the doctor's prescription. On the other front (or back), he hasn't had a BM since Friday. Last night, he wet the bed every 1 - 1.5 hours all night, which is due to constipation. The doctor ordered an abdominal x-ray, but we haven't heard the results yet. This evening, he's in really bad shape neurologically. I gave him a suppository, but don't seem to be getting any results. I don't know what else to do. I feel like we keep taking 1 step forward and 2 steps back.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Hugs to everyone… Being quite constipated myself these days, I can totally sympathize with Isaiah. It’s no fun and affects every part of you. Ugh.

I don’t know if you feel like trying it, but I found that a trip to the chiropractor really helped me earlier this week, and my son when he was a baby. A friend of mine was also having terrible problems with her 5 year old son and constipation, and after going to the chiropractor (someone else suggested it, not me), he had extreme relief. I can imagine that a lot of lying down and being in a chair doesn't help his bowels much either. Anyhow, just a suggestion.

Joined: 05/05/04
Posts: 435

(((hugs)))

Joined: 12/01/05
Posts: 1000

I think he's finally turning a corner, at least in the bowel department. He had two large BM today all on his own! And he was super hungry, which seems to indicate things are moving better now through his whole digestive tract. What a relief!

However, he still seems to have an infection around his implant, even with the IV antibiotics. It's looking like a very good chance we will have to have it removed and let the infection heal before replacing it.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

YAY about the constipation! That must make him a lot more pleasant to be around!

And Shoot! about the infection. More hugs all around.

Joined: 05/05/04
Posts: 435

I'm glad some things are looking up but that really stinks about the implant. I hope they can figure out how to cure the infection without having to take it out!

Joined: 12/01/05
Posts: 1000

He does seem to be getting better. It's amazing what being able to poop can do for a kid. His sleep is better, and his dystonia is better. Even the infection seems to be doing a little bit better.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

:clappy:

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

WOOHOO! I hope this is a turn around and it keeps up. Amazing what a little rest can do to a person's health and outlook!