My little Hunter

[Anonymous]

Hey there again. Thought we were doing great with Hunter’s fundo. He started the Ketogenic diet for his seizures in January, and while his seizures aren’t perfect, they are much better. Unfortunately, around the time we began the diet, I noticed Hunter began burping a lot more, and now we are spitting up again and re-swallowing quite a bit. Which totally doesn’t work good with his diet since his calories are strictly controlled and he needs everything that goes in his body. <sigh> we are starting him on Prevacid again, so we will see if that helps (didn’t help much before).

I guess what I need is some info if anyone has had a second fundo and if they have maintained success with it, or if we should think about the other options, like a G-tube. The only problem I keep having with the G-tube is that Hunter is severely developmentally delayed and the only thing hes really good at and enjoys, is eating. And it would kill me to take that away from him. But I know its not about me, its about his health, but its the one thing he’s still got, if that makes sense.

Anyways, any guidance or info would be greatly appreciated. Thanks for your time and help.

[Anonymous]

Dawn, I’m so so sorry to hear that Hunter is having problems after his fundo. What does your GI say about the state of his wrap? Is it possible that he’s allergic to something he’s eating that’s causing the reflux?… sorry, just thinking out loud.

What’s his weight and nutrition like? There isn’t anyone on this site who’s had more than one fundo, and even then there aren’t too many people with fundos period. Kevieb had one for Sylvia. I would suggest checking out http://www.parent-2-parent.com/forum . This is an amazing forum, but I think that you can probably find someone to give you more answers on there- a lot of kids have developmental delays or other issues and a lot of kids have had multiple fundos.

Good luck. I hope that you can find some answers and get some relief for Hunter without needing to get the feeding tube. HUGS.

[Anonymous]

The GI wants us to go an upper GI to see the state of his wrap. It is possible hes allergic to something he’s eating, but I am unsure how to check or what to do because of his special diet.

his weight is normal and loves to eat (even his nasty Keto stuff). His nutrition is balanced by the nutritionist we work with, but he eats 80% fat in the form of butter and whipping cream. Thats what the Ketogenic diet is, mostly fats. He takes vitamins to give him the other stuff he needs.

i will check out that website, thanks for sharing it. 🙂

[Anonymous]

I’m glad to hear that he’s eating well. Given that, why would they push for a tube? I don’t know how they find out about allergies- I guess testing of some kind. The only reason I even mentioned it was b/c you mentioned that he started refluxing again at the same time he started the keto diet. Now that you explained the breakdown, I wonder if the fat can be playing a role. I know that in adults a high fat diet can make reflux worse. I guess it’s really a moot point, in that the ketogenic diet is important for controlling his seizures. I’m glad that it’s been helping. Is he still on meds?

I really hope you guys can get a break. I really hope that you can get some answers. Maybe I’ll see you around the other board (I post on a feeding aversions forum on there)- I’m sure that someone there can offer you some advice.

Good luck. I think of you guys often. HUGS.

[Anonymous]

thank you so much! I already posted on the other board too!!

he is re-swallowing and spitting up again and it causes him great discomfort and makes therapy impossible. plus, he needs to maintain all the calories he takes down since it is all measured out on a gram scale. so thats why they suggested the g-tube. actually, we talked to someone at johns hopkins and they suggest kids with neuro problems and on the keto diet should get a g tube since they dont do well with fundos. but i kinda just want to get the fundo done again and use a tube as a 3rd and last resort thing, since he did so well with the first fundo (for 7-8 months anyways). but i dunno, i am not a doctor, so i guess its not really my place to act knowledgeable about it.

hunter is totally off meds for seizures, but starting on prevacid today. its nice having him off the meds because hes not a zombie anymore!!

[Anonymous]

I’m glad to hear that you were able to take him off the meds and hope the diet is the answer for him. Praying for you… good luck. s&h’s mum2007-5-28 13:42:3

[Anonymous]

I have been wondering how Hunter was doing! I am so glad that you were able to take him off of the meds. Our nephew was like a zombie on them and he became really delayed. I really hope that the prevacid works this time-It worked for Isaac the 3rd time we tried it so there is hope

[Anonymous]

Thanks everyone for the continued support and prayers. Sorry I haven’t been present more on this board lately, I just feel like I barely have time to breathe as it is sometimes. I really appreciate all of the help and info everyone always provides for me. 🙂 much love and hugs to you all!

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