Infantreflux.org | Another Bad Day

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August 21, 2006 at 8:48 pm #11849

Anonymous
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We are in the procees of introducing foods for the 5th time. What a day it was today. He took only a few bits again & basically was unable to sleep the entire day, fussy, cried & just needed to be held. It seems like it is a never ending story with no light at the end of the road!

We saw the dr last week & they want us to continue introducing foods even though he is having problems(stop the problem food & continue on to the next food). He is in the 10% & has gained only 1 lb in 6 months. They think he can pick up weight if he is not drinking only Neocate. I explained to them that I thought his reflux was back because he is no longer sleeping during the day (40 min & can not function). I have seen him gag & choke because of him spitting up. They want him to try & stay off the meds because of the allergies (they all have something in them that he is allergic too). (I know someone mentioned about a medicine but it was lost with all the posts & I could not asked them about it). I told them that he is also starting to pull his hair out by the roots again and all they said they did not have a medical answer for that. I do…pain maybe?! We are at the best hospital probably in the state & our 3rd dr. They want us to have another allergy test done (the last one in May). I do not need a test done to see that my son is in pain. I am with him 24/7!

It is so hard to sit here day after day and see him in pain and not be able to do anything for him. I just don’t see it getting any better.

August 21, 2006 at 9:17 pm #11855

Anonymous
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So sorry that you were having such a rough time. I think it was me that mentioned about the meds. Firstly I suggested caracream which has no dairy or protein (according to the bottle), but does have corn syrup solids as the second ingredient and I see that he is allergic to corn. Also, I suggested the generic omeprazole tablets… they’re not coated with anything, just the plain drug, so it might be less likely to have extra ingredients. You could call the drug company to find out. I think in the US you also have OTC omeprazole tablets. Have you looked into some of your other OTC products like pepcid or zantac. Not sure what’s in them. Not sure about the other PPIs.

Just wondering how you had your son’s allergies confirmed? I’ve wondered about allergies with Hailey? What were his symptoms? Anyhow, I hope that your little guy can get some relief. I know how exhausting it is dealing with this for so long. HUGS!

August 21, 2006 at 9:31 pm #11858

Anonymous
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WOW! sounds like you need help!

Where are you living? There’s a doctor that came to mind for you. I don’t remember what his name is. He’s in Cinncinatti, OH. I know other parents who’ve traveled across the states to meet with him. He deals with severely allergic reactions in kids/babies and knows the Neocate diet inside and out. Let me know if you’re interested and noone else posts about it. I’ll try to do a search for him for you. He puts kids on Neocate only diets and has fantastic success with it. I’m sure that goes along with the meds to alleviate the pain of reflux.

Also, the intolerances/allergies cause reflux as a symptom if not controlled. I wonder if your docs know that? I also wonder that if Neocate is corn based, if that’s the problem, but what else would you give him??? and, they say that kids can’t react to it due to how it’s made.

August 21, 2006 at 10:14 pm #11864

Anonymous
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wondering how Trevor does on neocate since he is allergic to corn and it has corn syrup in it? does it affect him?
nataliachick72006-8-21 22:14:18

August 21, 2006 at 10:42 pm #11869

Anonymous
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Lori

Thanks for the info on the meds. & I will look into it. As for the allergies it was a very long process because at the same time the Alimentium, meds & foods where all given at one time. The milk,soy & corn allergies all caused him blood in his stool. Some symptions were similar to the reflux which was hard to separate and sometimes he would throw up as soon as you took food into his mouth. We were sent to an allergies who did not want to do skin testing because of his age but decided at the last minute too do it.

Amy

We live near Detroit & he is currently being seen at U of M hospital (which is why I am pretty discourage about the treatment he is receiving). I sugguested to the dr that I thought maybe his reflux is related to the allergies? Not sure if my insurance will cover going out of state but I can check into it! Is the dr. listed on this site?

Amy & Nataliachick7

I was very heistant about Neocate because he did not do well on Elecare. How it was explained to me is that it is a corn syrup solid so it is no longer a protein and it should not give him problems but anything is possible. It took almost a month before we saw an improvement because he was exposed to the Alimentium RTF for so long & the damage it did. He pretty much sleeps through the night now & didn’t start having problems again until we started the intro to foods. T

August 21, 2006 at 11:56 pm #11874

Anonymous
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Well, on a quicky search, this is the best I came up with…

http://www.cincinnatichildrens.org/svc/find-professional/

go to gastroenterology… or allergy clinic. I know Rothberg was one name that popped up a lot, but I don’t know if that’s the doc I was reading about earlier. You could always contact the gasto department and ask about it. That’s what I’d do.

Wow, you’re not that far away from Cinn. or me for that matter. I’m just about 30 mn east of Cedar Point. Everyone seems to know where that is. I work just outside of Toledo. How about that. Small world.

Yeah, it does take Neocate quite a while to notice great changes. Like even months. There’s links to Neocate info on this site if you do a search. You could always do a search for Cinn. docs on this site too. Maybe that is where I saw that. I’m not sure. If I ever think of where I saw the info, I’ll let you know.

Sounds like you’ll be in great hands here. I’m glad you found this site.

August 22, 2006 at 12:04 am #11875

Anonymous
Inactive

Thanks for the info, I will look into it. I know where Cedar Point is, used to go there all the time. Toledo is about 50 mins. or so from the house.

I wish I would have found this site a long time ago. I kept listening to the ped dr. telling me that there was no other formula for him to go on. When I was still going to to him he wanted me to take him of the Neocate & put him back on the Alimentum. He still says it has nothing to do with the formula.

August 22, 2006 at 4:39 am #11878

Anonymous
Inactive

I am sorry to hear that things are so tough right now. Just wondering if they have done any extra testing, like metabolic workups etc to see if he has any congenital problems with breaking down food etc? I wish i knew waht it was called… they did it for Matthew and took about a month to get an answer back because it is a complicated test…

August 22, 2006 at 8:34 am #11883

hellbennt
Keymaster

it’s dr putnam, I do believe, at cincinatti childrens’- look for posts by eli’smom her name is tracy-she traveled from UT to OH…

August 22, 2006 at 8:52 am #11885

Anonymous
Inactive

50 min isn’t that far, if your insurance covers our docs. Are you dealing with GI specialists? I assumed you are.

I like our GI doc, Dr. Bobo at Toledo Hospital, but I think your case is far beyond what he can handle even. He is fantastic though. Not as well versed in allergy situations as Cinn. would be. There is a fantastic allergist here in Toledo we’ll be trying in Oct. From what I understand, she’s nationally known. It takes about 3 mths or so to get in to her. Dr. Nelson at MCO.

Dr. Putnam does sound familiar. I’m glad someone chimed in on that one

Does your gut tell you it’s the formula? Sounds like it to me, but what do I know???

We did invitro in Ann Arbor. How about that???

August 22, 2006 at 6:08 pm #11990

Anonymous
Inactive

Thanks everyone for the info. Even though I do not post often, I read the information almost everyday. It has been a lifesaver. I only wish I had found it sooner. So many times I was ready to give up but someone would post something that would make me pick up the pieces & start the fighting for him again.

August 22, 2006 at 9:27 pm #12013

Anonymous
Inactive

How old was your son when he had the skin tests done? Did the corn and 16 food allergies show up in the skin test? Poor little guy! I hope that things get better for Trevor soon.

August 23, 2006 at 10:09 pm #12134

Anonymous
Inactive

He was 10mths old when the skin test was done. The dr said they usually do not do it this early but because of the situation he decided they would give it a try and see if he could handle it. He did great!

I introduced a new food on Monday (which he didn’t test postive for) & he was horrible & that is when I posted. I usually give it a day or two before the next food because I want to make sure he is ok. So yesterday he was much better with the Neocate & then last night he slept from 7pm – 8:30am without a peep from him. Today, I introduce a new food (squash) but only a few bits. One the first day I usually give a small amount & then increase it. Some days the smallest bits have the worst response. He did ok today, we will see how he does tomorrow with an increase?

Matthewmana

Can I ask you what symtoms he was having that they did that test?
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