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Old 12-04-2011, 01:12 PM   #1
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We tried food again, went poorly & I feel like garbage about it

Luke has severe allergies, a hyper sensitive gag reflex & ketotic hypoglycemia. He's 23 months & on Neocate Junior only. I suspect there is more going on since he can't tolerate any food & vomits a lot. Plus he either has an unusually severe case of ketotic hypoglycemia or something else.

We tried Rice Krispies, organic rice cakes & organic rice puffs, the Plum Organics kind. All caused a problem. Rice Krispies gave him a body rash, the rice cakes gave him an instant rash all over his face & lips (made me nervous it may have been epipen time) & the Puffs made puke left & right. These were all tried separately, waiting between trying a new food, etc.

I feel really bad since he keeps asking for Krispies & puffs & there's nothing else to offer that he can safely eat besides his bottle. He can have Dum-Dum lollipops or candy canes for his blood sugar but he didn't even want one of those

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Old 12-04-2011, 01:49 PM   #2
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Re: We tried food again, went poorly & I feel like garbage about it

I cannot offer enough I hate when I have to tell my daughters no because of their allergies, while our problem doesn't compare to yours I can empathize.
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Old 12-04-2011, 03:19 PM   #3
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Hugs mama! I hope you get some answers and ideas soon!
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Old 12-05-2011, 06:51 AM   #4
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Re: We tried food again, went poorly & I feel like garbage about it

Has he ever been tested for an eosinophilic disorder? That could potentially cause those types of reactions. I don't know where you are located but there is a great eosinophilic disorders team at Cincinnati Children's Hospital if travel would be an option.
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Old 12-05-2011, 07:04 AM   #5
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Re: We tried food again, went poorly & I feel like garbage about it

i think feeding issues are some of the hardest things to go through as a parent. does he throw up after he has eaten it or does he gag on it in his mouth and throw up from that? is he on any kind of "sensory diet"? ie brushing, massage, etc
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Old 12-05-2011, 07:09 AM   #6
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Re: We tried food again, went poorly & I feel like garbage about it

Dont have any advice, I just wanted to say Im so sorry for what you are going through! *hugs*
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Old 12-07-2011, 09:18 PM   #7
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We are going back to the GI dr next week. Luke got sick again & his inability to take any oral medications is an issue once again. He has a severe case of croup & it's affecting his blood sugar, too. He's been in the low 60's after a bottle or lollipop. Thankfully he's been good about using the nebulizer & is slowly getting a little better.

I'm just worried about what they may need to do next. My middle dd had a similar condition where she was on Neocate until she was 3 1/2 but it wasn't as bad as this with not even being able to take meds by mouth & the blood sugar issue.

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Old 12-07-2011, 09:35 PM   #8
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Quote:
Originally Posted by newmommy13
i think feeding issues are some of the hardest things to go through as a parent. does he throw up after he has eaten it or does he gag on it in his mouth and throw up from that? is he on any kind of "sensory diet"? ie brushing, massage, etc
Sometimes he throws up immediately & other times, it can be 6+ hours later. I'm guessing the right away is the gag reflex issue & the later on may be more of the allergy/digestive issue.

No one has mentioned sensory anything with him. We didn't know to do any of that with my now 12 year old dd so I feel some of his doctor's initially acted like "oh we'll she's fine, he'll be fine, too" but with more problems arising, they are starting to think otherwise. The GI dr we saw before is the only dr who expressed concern about not eating becoming a sensory issue & that's who we're seeing next week.

Thankfully his language skills are excellent so far (there isn't much he can't say & says it all clearly, counts to 10, knows all basic colors, shapes, his body parts & not just below the waist LOL) but I know there's more to it than that. I know we need to do more but am not sure what direction to go or who else to see.

My BFF's son has feeding issues (he has a G tube). I know he goes to a feeding clinic & sees another GI dr in the same office as Luke's GI dr. I am going to ask her who she recommends we see or where to start. She works in the medical field herself & is pretty knowledgable on the subject.

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Old 12-07-2011, 09:46 PM   #9
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Originally Posted by medireh09
Has he ever been tested for an eosinophilic disorder? That could potentially cause those types of reactions. I don't know where you are located but there is a great eosinophilic disorders team at Cincinnati Children's Hospital if travel would be an option.
We're in central NJ so Cincinnati would be too far (I'm disabled & my other 3 children have on going medical problems) but we have fairly easy access to NYC and Philadelphia. I have wondered about EE & similar issues with him but thank you for mentioning it because I forget that it's not just EE but other issues, too.

I wasn't happy at all with CHOP either time when he stayed there in their endocrinology dept (he's been inpatient there twice this year) but my daughter used to see Dr Hugh Sampson at Mt Sinai's top notch pedi food allergy program & I was very happy with them. We have a few good children's hospitals in NJ (between him & my girls, we've been to almost, if not all of them) but could get to either city as well.

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Old 12-08-2011, 07:38 PM   #10
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Re: We tried food again, went poorly & I feel like garbage about it

So sorry mama, I know how difficult feeding issues can be. I would feel horrible everytime my son vomited on me until I was finally able to pinpoint what the triggers and allergies are.

He tolerates Neocate Junior and Dum-Dums and candy canes?
Dum dums and candy canes both have artificial colors and flavors. If he can tolerate those than he can certainly tolerate some other things. The only way to find out what he can tolerate is by trial and error. While this may be unpleasant for him, it is going to be necessary. Has he been allergy tested? Does he have any life-threatening reactions?
Some kids really are allergic to rice. My son can not tolerate rice yet has no issues with wheat....which makes no sense to me. He can't tolerate apples either, yet does great with berries and nuts. It can be confusing.
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