Eosinophillic Disorders/Food reactions

[Anonymous]

Ok, brought Ian into GI’s office on friday because he was slowly going lower and lower on bottle intake. I realize she can’t really do anything for it, but I wanted to talk it through with her. Ian’s gone through banana and squash trial fine but bottles have been bad so I decided to get ambitious and try oatmeal (which might also help with hard stools he’s been getting on banana) and possibly get more formula into him that way. Well after 4 days-reflux very aggraved, much irritibility-not screaming but CRANKY, and he started doing a weird swallowing/clearing and rasping throat thing during feeds and afterwards (although he does always grunt but this was different). No other reaction-like rash, loose stools, gas or anything. Doctor says these kinds of reactions that aren’t tangibile can be an eosonophillic symptom. Also, when ppis don’t control reflux. We have stopped oatmeal yesterday and he’s not great today but if he gets better then I’m concerned about this.

Anyone’s baby ever have a reaction to food trials like this and stopped the food? When it wasn’t traditional symptoms of allergy? The scratch tests they give at allergist office also won’t show this disorder because this involves white blood cells. So even though Ian isn’t on surface allergic to oatmeal, this could still be affecting it.

Also, anyone familiar with this disorder first hand? Seems nasty.

Finally, Ian’s milk allergy seems worse whenever we trial alimentum after being on Elecare. Can’t even tolerate 1 oz now without crying. He used to be on it about three days before showing problems. Anyone ever experience a ‘going backward period’ before moving forward again?

Just guess I’m looking for some peace of mind and comfort. It’s so hard not knowing and we’re doing everything we can. It seems everyone here on ppi’s has up and down days? And don’t alot of you have foods that make your baby fussy and aggravate reflux/bottle feeds? It can’t mean all our babies have this right?? I just want to stop my little panic attack.

Thanks everyone. I appreciate your thoughts. If you haven’t experienced anything like this, I’d like to know too. Then I’ll know if we should be more aggressive on testing for it.

Tracy (Ian’s Mom 9-26-05) Elecare and Prevacid.

[Anonymous]

Tracy

If you think that he is having a reaction, then you have to get the endo. Why put him through more pain? The endo with the biopsy will show whether there are really any EOS cells. ANd yes, you can have eosophilic esophagitis with elecare and with foods that should be hypoallergenic. As you said, it is white blood cells overeacting. In that case, it is treatable and just goes away with one course of cortisone. It is extremely rare according to my last ped but you need testing. What i do not understand is that they did an endo right?? Not too long ago? Did they not do a biopsy? It is actually easy to see with the endo itself teh white blood cells, according to the GI that did Matthew’s

Matthew has reactions to food all the time. Right now, we are on peas being added to his purees. And he grunts all the time, he has a ton of gas and is more uncomfortable and cranky. But these reactions are normal for some babies. My ped told me to give foods 2 weeks and then he gets better. It is his system adjusting i guess.

He may not like the Alimentum. He is really old for not noticing tests. If i give matthew a spoonful of pears, he will taste it and like it. If i follow with one of apples, he cries, gags, throws up. he just does nto like the taste anymore.

[Anonymous]

Thais-You just made me feel so much better!! This is why I posted the question. I’ve been really depressed last few days. Yes, they did an endo and it said no EOS cells and negative for the EE disorder but I was told that it wouldn’t show up in the biopsy (we did have one also) if Elecare was doing it’s job. But could show up once we start introducing solids. He was projectile vomiting and severely dehydrated when he had the endo for about a week prior-do you think that would hinder results? I was told it could be a long term disorder and never heard of just a week of treatment?? That’s encouraging though.

Matthew has reactions like this too-just general fussiness and grunting? Does his reflux get aggravated? How’s he doing with the prevacid being upped every other day? Better I hope..You weren’t noticing refluxing though were you? He’s such a sweet baby! I hope he starts feeling a little better and the vomiting stops soon. Maybe some sleep too.

One more thing-when do you know is the right time to do an endo? The last one was such a nightmare with the needles and Ian was pretty traumatized. I can’t do one every time I suspect he’s reacting to something? This is so HARD!!

Tracy

[Anonymous]

Tracy

Urgghh it seems like it is a never ending story.

All i learned about the reflux stuff was from my ped in Spain – he was amazing and really knew a ton. If your ped was referring to the same EOS esophagitis as my ped was, it is a disease and a rare one and then yes, the prevacid does not anything which is why it has to be treated with steroids. He said it was really rare. And it comes up in the biopsy, no doubt. If it is just EOS from the allergies, then they may not have been there when you did the test because of Elecare but may be now because of the solids. If he is really down to 16ounces from 40ounces he must be losing weight rapidly? I would be concerned about that adn do the biopsy now. If he is slowing down… i know this is the obvious, but are you checking his mouth… Matthew has been AWFUL the last 2 days and today, i see them 4 huge bumps… and i mean huge. I thought i had seen swelling with his lower teeth but this is monstrous. And he will not even get the pacifier into his mouth or the bottle but still takes some solids.

What did they do for the biopsy. Why the needles? I cannot remember when you told us, but in Spain, they do not get IVs into babies because all they do is give them some diazepam in a supposirtory to make them groggy but they are not put under… would that be an option?

Matthew has horrible reactions – now the ones with the peas and before the green beans. YES AWFUL grunting, he stops going regularly, he has a couple of hard poops, he cries etc etc and then one day all gone.

He is the same with the increased prevacid. Not really refluxing. Throwing up a bit especially since he got a couple of gerber puffs in and he gagged so hard he puked it all… also when he is upset he does it. But not reflux related.

SLEEP WOULD BE AMAZING. Past 4.30am is all i ask!!

One last thing they did for Matthew was a metabolic test on his blood. I know that they did not have the stuff to do the test in Madrid anywhere so the ped had to send the blood to barcelona. It takes weeks to get the results, but he had seen a couple of babies who had an error in the metabolism of proteins. If you reall think that Ian is having issues, you may want to ask about this??

[Anonymous]

We had problems with oatmeal the first time we tried but waited about 3 months before trying again and now he is fine with it. Some foods really aggravate reflux though, for Tyler apples make his reflux really nasty.

I would imagine that after being on Elecare for so long any sort of milk proteins would be a bit of a shock to his system. We are not trying any dairy until 18 months and even then it will be Nutramigen first and then regular formula before cows milk.

Things are going really well for us at the moment, but there are always up and down days and its hard to know if it is food related or not. My daughter no reflux or allergies and she had her fair share of cranky days.

I really hope that there is nothing more serious wrong with Ian, is there any other tests that he hasnt had yet?

[Anonymous]

Thanks guys.

Thais-yes, I’m not sure what’s going on. He’s now begun coughing and screaming during bottle feeds. He’s doing this really loud clearing throat thing – like grunting but at top of throat. He’s definitely hungry. He was eating 40oz last month and when we started bananas and squash it went down to 28 (always with breaks) but the oatmeal really seems to have brought on this new behavior. We’ve been off it for 2 days and no changes except the coughing now. Wonder if I should give him no foods for awhile? OR if GI would give us cortizone without endo? Can’t do an endo every time? Yes, needles were for anesthesia (nightmare-he was dehydrated and they kept sticking him like a cushion). What is this blood disorder about metabolizing proteins called? Interesting. No teeth. Thanks for the thoughts Thais. I’m sending sleep fairy wishes over to you!!

Amber-First I’m so happy for you that things are going so well-yippee!! Encouraging to hear! When Tyler first tried oatmeal or other grains, did he ever have this type of reaction in the throat? I’m just concerned because these screams are random and unlike any sound I’ve ever heard him make. I’m not worried about crankiness just that this behavior is so not his temperment. Kind of instincts telling me not right. Disappointing because squash and bananas were going so well for weeks! ARGHH.

Tracy

[Anonymous]

Am getting very concerned now. Ian ate horrible first bottle. Lots of high pitched screeching and crying. Appears to be from throat-both dh and I think so. We went out for a nice brunch for Mothers Day and put simply thick in bottle to help everything go down-he ate pretty good-7oz with breaks but no noises. We then 1hour later gave him his squash and it seemed to aggravate things-he ate a ton as he loves it but at the end-screeching again. Now this bottle at four, he’s screaming and crying everytime we put it near him-complete refusal and screeching from throat!

WHAT THE HECK is going on!!

We stopped oatmeal two days ago and he never showed any signs of problems on bananas or squash for weeks but it seems they’re aggravating things now too! If it is EOS cells from oatmeal I guess they would right? Until we get him some steriods? Or is it reactions he’s been having to all foods that’s just showing up now? I guess it could be an ulcer in the upper esophogus? I’m calling doctor first thing because he will start to get dehydrated at this point and it’s just NOT getting better!! I’ll stop solids I guess too. Only problem is I know it’ll take another 2-4 weeks to get an endo?

Any ideas…so frustrating that we always have to get to this point before anyone will do anything! I still can’t imagine 4 days of a tiny amount of oatmeal would do this?

Tracy

[Anonymous]

There is no way a doctor would prescribe cortisone with no tests. And there is no way that they will wait 2 weeks for an endo if Ian is dehydrated. If he really has not eaten anything for a couple of days, then check diapers and his skin in his belly by pinching it. Matthew went a whole week taking 10ounces per day and never dehydrated… so they are stronger than you think!

Speak to doctor and get tests done. Really. He does not need to be in more pain than he is!

[Anonymous]

Tracy – just reading this now and sorry to hear of these problems. M
has been under the weather too and not eating – but i think she has my
tummy bug – it’s a weird one – no diarrhea or vomiting but I’ve had
stomach upset and not wanted to eat myself for almost a week. And she
only had 10 ounces of formula, 1 ounces of juice and 4 ounces of puree
yesterday (a bit more the day before).

Anyway, I agree with Thais – I know Ian has been through a lot of tests
but if you are concerned and if he is getting dehydrated, it’s worth
doing this one too.

I hope he feels better and you get some answers soon.

[Anonymous]

Thanks Karen and Thais.

He was up hacking and clearing his throat alot last night. It’s definitely irritation. Doesn’t want to eat this morning although he keeps trying. We’re getting enough in for hydration but he’s in pain for sure.

Thais-they actually did make us wait last time even after Ian vomited up a large amount of blood! Drove me nuts!! Projectile vomited for over a week before endo and even though on the surface he looked hydrated, he wasn’t. That’s why they couldn’t find a vein and hospitalized him for a week.

I’m having DH call GI today. I’m starting to really worry about EE because Ian never seems comfortable eating and the fact that oatmeal caused such a throat reaction without other symptoms. Read on apfed.org that EE has to have 3 biopsies upper and lower to confirm a child has it because it’s so patchy. I want the endo now because if we wait, it might subside and not show up, right?? ANyone know?

He still loved his solids yesterday but we’re stopping because he definitely had even more if possible throat aggravation from them. So, less calories, yet again. He got weighed friday and he hasn’t gained much in a month. Just a little over 20 pounds still and still 30′! They keep saying look how great his curve is! I”m like “hello! Let’s compare his own curve and not to other kids!” He’s a tall baby and always has been.

Had rough day yesterday-couldn’t stop crying-thank god for dh! Even he’s worried.

Karen-hope M feels better soon:)

Tracy

[Anonymous]

Poor Ian. And poor Mommy and Daddy! I’m glad you’re calling the GI
today – let me know what she says and when they can do the test. We’ll
be thinking of you…

[Anonymous]

I hope Ian is ok! I am praying for him!

[Anonymous]

Just got an appt for another endo next Tuesday a week from tomorrow. GI didn’t want to do it but said ok only if we wait a week to see if we can cancel it. She thinks Ian is just backed up. Granted since bananas, poops havent been great, but MoM on occasion has been helping. Also, dh explained Ian started to decline on feedings over a month ago prior to solids but she still didn’t budge.

Last thing in the WORLD I want is to put him through another one of these experiences for crying out loud! But he is in pain and wants to eat!! I don’t want to get to the point where he loses his will to eat.

Breathe Tracy breathe.

Tracy

[Anonymous]

Well I’m glad you got an appointment. How much MoM are you giving? Does he eat better after a good BM? How is he sleeping?

[Anonymous]

No he doesn’t eat better after a bm-plus how can she explain the months of watery poo (and none inside every time we did an xray) and he still had poor eating/reflux! Sleep has been fine except yesterday with the coughing and clearing throat from his crib. It’s definitely irritation.

How’s Marisa doing today? And how about you Mommy? Taking care of yourself I hope. Stomach bug’s awful. Thankfully no vomiting though.

Tracy

[Author]

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