Eosinophillic Disorders/Food reactions

[Anonymous]

Oh, sorry-we also only give 1/2 tsp of MoM and only if it’s been 2 days. But did the trick. We were down to giving bananas only about 2-3 times a week. Plus it was the only thing se saw formed poop on. Water stools went completely away.

Tracy

[Anonymous]

It’s really so strange. What did she say when you pointed that out about the months of watery poop?

We are doing OK. It kind of looks like Marisa may be getting her eye
teeth (!) first but I don’t know – she doesn’t let me close enough to
really look. So I don’t know if it’s a stomach virus, cold, teething or
something else. She’s quite congested/runny nose and SO tired and
cranky. Has only had 9 ounces today and no juice or solids – so we’ll
see – going to see a new Ped with a gastro sub-specialty tomorrow…

[Anonymous]

She has not explanation on the watery poop. Mystery to everyone it seems.

New Ped!? You loved yours. Where did you find this one. Are you switching permently or just for an opinion?

Tracy

[Anonymous]

So she really thinks all this pain and throat irritation could simply
be from being backed up? Hmmm. Have you talked to your allergist or the
ID doctor?

We used to love her but lately she’s been pretty short and too quick –
the practice is just too big and way too busy and she’s overwhelmed I
think. This one is my SIL’s Ped out in Staten Island – interestingly
enough. Many patients come from all over to see him. if we like him as
much as SIL does we may switch permanently – or sort of anyway, just
keep the one here for emergencies – ear infection checks, that sort of
thing.

[Anonymous]

Sounds great. You’ll have to let me know-what time is your appt? Poor thing.

Husband just spoke with president of apfed.org. Very nice woman. Organization was originally started by parents with infants having these issues who met online! They’ve since turned it into a major association with many backings from ped, gi’s, and pediatric boards. She told him that EE or other E disorders wouldn’t show up if Elecare’s doing it’s job but could show up as a new food is introduced (hence the food diaries). All babies react in different ways and you never really know. She said if a child doesn’t outgrow by 2, they probably won’t. She said if we do the endo in a week the eos cells will most likely diappear (ARGHH-WHICH is why I want it sooner). Avoidance of the food is key. We’re going to stop all solids for a couple of days and start slowly again on banana and squash (he truly was fine on them). Then 2 days prior to scope (Sun and Mon), we’re going to give him a little oatmeal. I know that’s terrible to give him something that causes him pain but I want to see if he is having eos reactions or if it’s just sensitivites. I’ll avoid the food no matter but the reflux has to be controlled at some point. We would even consider reflux surgery now. I feel so encouraged when I hear people do better like Amber and Tyler but he also started to have bottles fine once he switched to Elecare and it settled in. Ian keeps rollercoasting. I know all babies are different but blood, ulcers, reflux like this even on heavy prevacid is messed up.

Good luck tomorrow.

Tracy

[Anonymous]

I’m so glad your DH talked to the president – great job! And I think
your plan sounds really good – I agree that you need to know what is
going on so you can make Ian feel better. Poor little guy – keep me
posted throughout the week.

We have an appointment for 2:15 tomorrow – DH is leaving work early to
come too. She keeps totally refusing any solids today but did take
another 3 ounces so at least she’s at 12 and getting hydration.

Once things settle down we really have to get together again!!!

[Anonymous]

are they doing a ph probe? Or have tehy done one? i mean, if you are thinking tht the reflux is the cause of all evils (and i would really read up on the surgery… how much do you know about it?? i know that a couple of people havev had success on this board, but do you know what teh complications can be???? i have been reading a lot and some babies are so much worse off and for others teh fundo is not working) then why don’t you ask for one.

It is like having an NG tube for 24 hours. Does not hurt them and will give you the answers about the reflux.

Don’t know about metabolic disorder, but if they are getting him an IV it would be so easy to have a full test on blood again, ie RAST, metabolic disorders etc.

On teh EOS, i don’t think it is right and you can still have inflammation with elecare at least accoding to the doctors in spain at teh children’s hospital (at least they ahve seen cases).

Karen – good luck…

[Anonymous]

I’m sure Tracy will jump in here but she did have a PH probe done – I
think it showed the reflux was controlled but that was before solids?

Thanks for the good luck wishes – she did at least have 15 ounces today
but won’t touch her solids – even her usual favorites – just gets
REALLY upset.

[Anonymous]

OMG, I just typed a HUGE reply and it got lost (AAHHH!)

Tracy, I really hope that Ian is doing better soon. I just wanted to comment on the metabolic disorders that Thais mentioned. There are several of them that can cause symptoms of reflux, allergies, and feeding problems. the only one they test for at birth is PKU. Did Ian ever have a metabolic workup done? If not, I might ask for one. Our ped is also a pediatric metabolic geneticist and he specializes in this. We’ve had two workups done for Hailey. Some tests to ask for are lactic acid, amino acids, organic acids, oligo and GBS (or 3 letters like that, I can’t remember exactly).

Also, is he still having the coughing and squeeking when he eats? When Hailey’s reflux is really bad she does both of these things. She also chokes. They told us that the coughing is because the throat is irritated, and the squeeking is the stridor (high pitched squeek) from laryngiomalacia.

Karen, also hope Marisa is feeling better.

[Anonymous]

Tracy, we havent had the kinds of reactions that you mentioned, so sorry I cant be of much help. Poor Ian, hope the tests can give you some results. He must be really sensitive to certain foods, it will be a real challenge trying to find foods that are kind to him. Good luck with the tests.

[Anonymous]

Thanks guys. Yes, my poor dh took care of Ian all day yesterday because I tried to steal few hours at my office (sans Ian-since feeds take all day). He just called me up saying “I don’t know how you do this, how do you do this? I’m so exhausted.” Poor guy! Ian ate 18 oz yesterday but lots of hacking/coughing/screeching. DH said at one point the scream was so painstaking that he actually got scared. We didn’t give solids yesterday and he woke up alot last night (unlike him). He definitely was hungry but won’t take bottle. I’m so frustrated we have to wait another week!

Thais-we did have a probe, yes. But I knew it wouldn’t show reflux because he was having a ‘good period’ then. I think I can identify it pretty easily now. Even before solids, he got that ulcer on prevacid. We’re not sure why it gets provoked-we thought colds from daycare. I’m not saying I’m definitely having surgery at all but we’re open to the possibility if he shows nothing but reflux on this endo. I of course would research and meet with experts but It’s out of control .

Thanks Lori-I will ask for a workup done. Yes, coughing and screeching are so disturbing. Hacking like he’s smokes 5 packs a day. Screams if he even sees the bottle sometimes. Has your genetist been helpful?-that’s great that you see one!

Amber-Thanks for listening as always. We still swear Ian had no problem with Squash or Banana. It all went downhill after oatmeal (but allergist did recommend not trying it-but I wanted Ian to get more formula.). I do think his explosive poos from carrots and sweet potatoes were due to his diarrhea ultimately from the antibiotic just because bananas really firmed them up. Poor kid is hungry too. We’re going on a last ditch attempt also today to get a script for zegerid as we know the prevacid lactose in solutabs is not helping. All compounded meds have failed. I am so happy to hear Tyler’s doing so well!

Karen-we did the baby lax and got a poo but no improvement on eating! I swear it’s the only diagnosis we ever get! I really hope your appointment goes well today and M feels better soon!! Let us know after please!

Tracy

[Anonymous]

Oh Tracy – I’m so sorry that Ian is in such pain – it’s so strange and
unfair. Is there anyway that Moon will move up the endo based on his
pain and screaming at bottle and fact that he’s not eased by pooping?
To be honest, it’s one of the reason we never ended up seeing Dr. M –
from all you’ve told me of her I just am not sure she could help us
either – and our case is nowhere near as hard as yours.

The metabolic workup sounds like a good idea to me. I wish you could
get in to see Sokolow – she sounds so good from what Thais has said!

Thanks for your well wishes and I’ll definitely post an update later.
Really wonder if part of it’s eye teeth – she keeps putting her fingers
and toys and anything else right there and pushing HARD. She’s not
herself at all – not happy and not active and so tired. But she did eat
some this morning. Anyway…

[Anonymous]

Thanks Karen. I think she’s booked until then so not much we can do. We could always go to the hospital but I don’t want that. Yes, I agree. Not crazy about doc at all but what can I do? I’ve seen so many top ones here in nyc and she’s been the best so far. Yes, very jealous of Thais! Dr. Sokolow sounds amazing. Ian’s so uncomfortable not even his jumper is making him happy-just cries. Also, has added gulping to his repetoire so another sign of reflux I guess?

I hope it’s just teething for M and all this pain will be over soon for her.

Tracy

[Anonymous]

Tracy

I just posted our experience at St Joe’s. They think part of matthew’s problems is digestive and the poops… you said they could not help Ian… but seems like the pooping and lack of eating are making him uncomfortable.. and he is also not trying to crawl. I just wonder why they dismissed you? Maybe worth another try????

[Anonymous]

Thanks Thais! I’m going to read your post now.

Actually they just kept saying he looked great and to follow up in two weeks on the phone (which I did sev times but they never called me back). When I was there, they also said they were doing a study on poops and connection to eating (because I brought it up-plus at the time Ian was having explosive water stools-even one in their office!). They had just started it at the time so maybe they have more info now. But poops have been normal for few weeks now since bananas. They got hard at one point so we switched bananas to less a week. He is trying to crawl but unsuccessful. Poor little guy-grunts and gets so frustrated. But making progress today.

Also, it’s funny, because I called the clinic this morning again to make another appt! Can’t wait to read your post.

Tracy

[Author]

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