Help solve Medical Mystery?

[hellbennt]

good news about the ecxema & cough clearing up!

the neocate is doing it’s thing!

feeding poorly = pain?

I can’t recall is baby on meds?

TELL dr to rx CARAFATE until you get things more comfortable for your lo (little one/loved one)…

This is a medicine that is not a long-term solution at all. It is a ‘band-aid’ solution, but definitely helped my son at times. It’s like a teflon coating (it’s NOT teflon!) for the esophugus to help it heal- once it’s healed, he may eat better? It can’t hurt, that’s for sure. However, there are timing issues- you’d have to do a search to find out how far apart from PPI & zantac it needs to be given. But, we DID use it for jonah when we were trying to get everything all figured out…he didn’t have weight gain issues, but he SHRIEKED/HOWLED non-stop, poor thing. Once we got the meds ‘right’ he was so much better!

As for allergy testing: truly, it’s not reliable until baby is 12 or really 18 months old, but if you want to ask for it, it wouldn’t hurt- it might be an intolerance- hard to tell w/ babies…

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

when you get a chance

please go to the upper right–hand corner of this screen and click on ‘Settings’ and, from there, you can edit your Signature and let us know how old baby is (can be month & year), name (or nickname if you prefer), formula (which one) or breastfeeding, TED diet (or what you’re eating), what baby is eating (if anything) & what meds and what doses and form of meds and how you’re administering-thanks

[Anonymous]

Thanks Tiffany and Laura. I did read through those posts. In terms of an allergiest, they won’t give him one until he is 2. I’ve been going ingredient by ingredient in each formula and tracking it for common reactions and using google to see with each individual ingredient if there are reactions. Although it’s probably just milk but I feel like It’s on me to figure it out for my son.

I don’t think he is in pain. I could always be wrong though as I feel I’m just guessing most of the time. Based on the timing, I think he does not want to eat b/c of the taste of the Neocate. Yesterday was the worst. 8 oz total for the day and he slept for 5 hours, up for 2, then went to bed and slept 13 hours. It seemed like he had no energy.

So I got very desperate. I dont know if this is really bad but I wasn’t sure what to do. I’d appreciate anyones opinion (criticims or approval are fine). What I did was……

Stopped diluting the Neocate with water and instead used Rice Milk. When that didn’t work…

I added an 8th tspn sugar.

I can’t believe I’m admitting this. Today with this we’re at 19 oz.

What should I do? Is this harmful to my son?

[Anonymous]

I believe I updated my signature…

[Anonymous]

if that tiny bit of sugar will get him to eat the formula—i’d say do it. if you can get him drinking it good, i’ll bet that you could probably slowly reduce the amount of sugar and eventually eliminate it all together. my daughter was failure to thrive, and i needed her to take ——the name slips me—the flavored high calorie baby drink. anyway, she wouldn’t touch it, so i had to slowly add it to what she was already drinking, and eventually she took it with no problem.

i have a son that has pretty bad allergies, he is older, but he has been getting allergy shots for a couple of years now. this fall he started hacking and coughing constantly–it was driving me crazy!! we’d had him in the ER recently with croup the same day as one of his shots—we were never sure if there was a connection, but i took him in to see the doc when teh coughing got so bad. he actually tested showing mild asthma, although the doc still does not diagnose him as having asthma. he started him on two allergy medications and we got the cat out of the house. (one of his triggers). the coughing has stopped.

anyway, the comparison here is that it sounds like your sons cough was allergy related since the neocate seems to clear it up.

i would be for insisting on an endoscopy and a ph probe. my daughter only showed mild reflux on a barium swallow, too. her reflux was so bad that she was failure to thrive, anemic, refluxing almost 25% of the time and her esophagus was getting ulcerated at only 8 months. she had to have a fundoplication just before she turned 10 months old and they discovered a good sized hiatal hernia—it had never shown up during any test.

another thing to think about is esophageal thrush—and don’t let your pediatrician tell you that it is rare–it’s not. i’ve had two kids with it. anyone with a chronic condition—such as reflux, is more susceptible to it. my baby had had it in her mouth but you couldn’t see it any more–but she was refusing to eat and was chewing her food and spitting it out–she would only nurse. my older daughter never had it in her mouth—but she had reflux pretty bad.

i’m pretty sure i’ve had it in my esophagus also. i was on some pretty serious antibiotics for MRSA and got thrush. i’ve had it before, but had no idea how painful it could actually be in your mouth—and then the pain in my chest got really bad—worse than normal.(i have severe gerd, too). i have had to have my esophagus dilated 3 times. this last time, biopsies showed that i have alot of eosinophils–or allelrgic cells, as we have always referred to them on this board. i have done a little research and discovered it can cause trouble swallowing (that’s why i had to be dilated) and it can cause chest pain. it is usually cause by allergies to proteins. if your son had a scope, it would show if he had eosinophils—which would help answer your allergy questions. this is getting too long–but if you have any more questions, just ask—if i don’t get on here often enough—laura will find me for you. my daughter is 7 now. she was failure to thrive even after her fundo because she developed obstructive sleep apnea—and then an inguinal hernia to boot!! the kid was like swiss cheese inside!LOL! after she had her hernia repaired and her tonsils and adnoids removed just after she turned two–i am happy to say that she has hardly seen a doctor since—-but i sure was a rough couple of years for her and us.

[Anonymous]

Thank you for your reply, for sharing your story, and for the support.

I am in the process of scheduling another appt. with the GI Specialist and will be brining up additional testing.

Today even with adding Rice Milk and sugar we’re only at 10oz and he is in bed for the night. He’s fought and screamed the last two times I’ve tried to feed. I’m now confused if it’s pain or if its the new form. Will contact dr. tomorrow.

[Anonymous]

Okay. I’m late jumping in, but my daughter’s primary sign of allergies were excema and cold symptoms. She had multiple food allergies, but milk was one of them. Alimentum and Nutramigen DO contain milk proteins. They are broken down, but they are there. For most babies, they are broken down enough to avoid issues. For us, they were still an issue.

Allergies build up over time. So, you could be fine the first time around or for a few weeks even, but then have an issue.

Prevacid solutabs contain trace amounts of lactose (or they did 4 years ago). This was an issue for us as well.

Milk proteins are in tons of things that you don’t realize, so you need to check everything.

Also, my dd’s allergy didn’t become apparent until they did a blood test and followed up with a skin prick test.

My dd took over a week to adjust to neocate. It’s nasty stuff!

[Anonymous]

I think your baby might be in pain/discomfort due to food allergy. I would highly recommend to try getting his allergies under control. It is so hard to eat/feel better when your tummy is aching constantly:(.
I will continue with the Neocate and push for a good dose of meds. Zegerid and domperidone worked for us. Maybe the GI can at least precribe Zegerid?
If your GI is not helpful, try finding another one.
Hang in there.

[Anonymous]

Kim thanks for the advice! I didn’t realize there may be lactose in solutabs. Oh my goodness!

Leo thank you as well for the ideas on medication. I see GI next week.

I did try an experiment today to understand if pain or taste was an issue. I’ve only tried it with the last feeding but will try again. I gave him only rice milk (no neocate in it) and he drank 7 oz in one setting… Hmmm. I’ll try a few more and see what happens.

[Anonymous]

Ok I’m starting to feel really confused. Today is day 7 on Neocate and eczema and cough/congestion had previously cleared but are back now. Do you think this has anything to do with the formula or b/c I mixed in Rice Milk with his form? I haven’t changed anything with regard to his diet.

[Anonymous]

One more update. Yesterday I was thinking the feeding episodes were due to the taste so I’d given him just rice milk and as stated previously he drank over 7 oz straight so I thought it was taste. This evening I just fed him again (using only rice milk) and he started screaming so bad after 2 oz. I did request Carafate to see if we can rule out or confirm if it’s pain causing these issues or if it’s him having tantrums. Any other ideas to get me through the weekend?

[Anonymous]

If he’s allergic/intolerant to something in the rice milk, it could have felt fine the first time, started to bother him after the fact and now it’s irritating him even more. Or, it could be something totally unrelated. It’s so hard to know!

I would go back to just neocate and see if it improves. The first feeding with that will probably be just as bad because he’s irritated. If it improves after that, then you know it’s the rice milk.

My younger dd refused to eat as a result of her reflux. It took her a long time to get to the point where she would trust food. So, it may be a while. Don’t give up – it will get better!

[Anonymous]

Ok, as of yesterday we’re back to just Neocate. The flavor packets that the co sells seem to help so he is getting down 20 oz. He still appears to have the same sounding cough and congestion as previously with allergy symptoms along with eczema. We’ll keep this up for a full 2 weeks. His GI Specialist refused to give Carafate for pain. We have appt. Fri so I can have him watch my son feed and try again for meds and some type of plan. Also have appt with Nutritionist in 2 weeks.

[hellbennt]

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

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