Home › Forums › Infant Reflux Support › HELP!!! › At wits end!
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June 15, 2007 at 9:02 am #36832
Anonymous
InactiveHello. I will try to keep this brief if possible. My son is 8 months old, 21 1/2 lbs. He has been treated for asthma, silent reflux, and also had tubes placed in his ears at 5 1/2 months of age. We have seen the ENT, asthma/allergy, and ped. GI specialists, along with his pediatrician. Has been on breathing treatments (albuterol and pulmicort), singulair, zantac, reglan, prevacid, and mylanta supreme. He is on Ailementum formula. His current med. is prevacid solutabs 7.5 mg twice per day and just stopped the Singulair yesterday. The prevacid seemed to help for about 3 wks or so, then we started downhill again. More restless at night, spitting up/vomitting more and very loose stools since starting Prevacid. Also seems he has cramping involved with the prevacid. Went to the ped. yesterday. She recommended to stop giving the Singulair (can cause tummy aches) and then if all goes well to try changing formulas to Similac Advance since allergy tests are all negative. Also, he is not gaining weight as he should – thank goodness he started so big (9.2 lbs. – delivered at 37 wks.). She mentioned testing his thyroid function but wanted to try med/formula change first. I had printed the Zegerid info. from Marci-kids to view with her. She was amazed that she had not heard of it but will look into it. Anyhoo….just searching for any advice. Wanting him comfortable and more sleep for Daddy and I!
Thanks in advance,
Sarah
June 15, 2007 at 9:14 am #36833Anonymous
Inactivesounds like its time to up his prevacid dose….15 mg is considered low for many babies. my son is 19 lbs and requires 30 mg of prevacid. it is based on weight, you can check out dosing info at marci-kids.com
i would not give him milk based formula….that could really aggrivate your situation. a negative to allergy testing doesnt mean much….they are innacurate and dont detect MSPI.
June 15, 2007 at 9:15 am #36835Anonymous
Inactiveoh yeah….sometimes it means its time for neocate when the babe does ok on the PPI dose for a while, then goes downhill. the milk proteins in alimentum could have built up in his system.
June 15, 2007 at 9:16 am #36836Anonymous
InactiveMy only thought might be that he needs a higher dose of Prevacid. The fact that it no longer seems to be working after seeing results…hmm…have you checked the marci-kids dosing for his age, weight? I know many moms have said that Prevacid did cause some initial stomach upset but that it subsided shortly after starting.
Also remember that many babies are intolerant to milk products but not necessarily allergic. You may find that he still has some problems digesting a milk based formula. I would wait until all other questions are answered before doing a formula switch just so you can really make sure what’s going on during the trial.
Good luck and sorry I couldn’t be of more help! It sounds like you have an extensive team of doctors behind you!
June 15, 2007 at 9:17 am #36837hellbennt
Keymasterwelcome!
click on my welcome/intro, which you can find as the top post in the Introduce Yourself forum, and look for a link called ‘mspi’
and, from there, go to page 2 & scroll down to where you see ‘google cache’- this will explain all about the difference b/t allergy & intolerances- it’s really helpful
June 15, 2007 at 9:29 am #36840Anonymous
InactiveI did try upping the dose to 15 mg. twice per day for about 5 days, that seemed to be when the nights became worse, coincidence? I checked with our insurance on Neocate – not covered. The ped. said she doesn’t think he needs it – because of neg. allergy tests and the fact that he eats baby foods just fine. Ugg! I just don’t know what to do!
June 15, 2007 at 10:17 am #36844Anonymous
InactiveSarahJohnson wrote: I did try upping the dose to 15 mg. twice per day for about 5 days, that seemed to be when the nights became worse, coincidence? I checked with our insurance on Neocate – not covered. The ped. said she doesn’t think he needs it – because of neg. allergy tests and the fact that he eats baby foods just fine. Ugg! I just don’t know what to do!
like i said, allergy testing is not an accurate indication that he needs neocate. and neither is the fact that he eats baby food. really, that doesnt make much sense. i know plenty of babies that ate baby food and needed neocate.
our insurance claimed they didnt cover neocate either. i wrote a letter and so did my doctor.
as for the prevacid, it could be the aspartame in the solutabs bothering your baby. there are other forms of prevacid that you could try, and there is also zegerid.
but i find it interesting that the prevacid helped him initially. this sounds like you didnt give the higher dose a long enough trial.
nataliachick72007-6-15 10:19:13
June 15, 2007 at 3:15 pm #36886Anonymous
InactiveWe were told by our insurance that they don’t cover neocate also.
I had my pediatrician call our health insurance and now they send us 4 cans a month on top of what we get from WIC
I would definatly not do the milk formula
Whatever you do don’t take NO for an answer. ::HUGS:: THis is a great forum
I hope your little boy feels better soon
June 15, 2007 at 9:49 pm #36918Anonymous
InactiveThanks to all. Just a few questions: how long will the higher dose take to notice a difference? Is neocate available w/out a prescription? My peds. thought on the formula was that we would know within 1 or 2 feedings if it truly is an issue, worth the risk? Tonight we gave him motrin (for teething) and a dose of mylanta supreme before bed and also swaddled him. Seems to be resting sound but it is still early, he starts “stirring” after midnight usually. How can I tell if the aspartame is bothering him? Sorry I am so scattered, just searching for any answers. Thanks!
June 15, 2007 at 10:21 pm #36920Anonymous
InactiveCouple thoughts….
I wouldn’t change to milk based formula at this point. As pp said, allergy and intolerance are two different things. Also, allergy test aren’t very reliable at this age. Why add something else to your plate?

It could take a couple weeks to see improvement with a dose increase.
Teething can make reflux worse….usually temporarly. Also, motrin can be upsetting to the tummy
June 15, 2007 at 10:56 pm #36924Anonymous
Inactiveit would not take one or two feedings to see if neocate is working. i guess it is possible, but it can actually take months for neocate to heal the damage in the body. there is a great article that explains how neocate works. go to the search function and type in “misconceptions” and choose “topic subject” you will find a thread called: misconceptions: neocate&elecare. the article makes it really easy to understand.
aspartame gives me stomach aches….i imagine this would be hard to detect in a baby though
its just trial and error….June 15, 2007 at 11:35 pm #36929Anonymous
InactiveShe was actually saying that if I switched to Similac Advance we would know almost immediately if it disagreed with him. In her opinion she just doesn’t think neocate is necessary. We started with breastfeeding, then similac advance, then similac soy, now ailementum. I really trust in my ped., but also realize more is learned from experience than elsewhere so I really appreciate this forum. Will read that article this weekend…thanks so much!
June 16, 2007 at 1:02 am #36930Anonymous
InactiveHi Sarah
Your pead is probably right then…it could take a couple of feeds on the Milk Formula to see if your bub reacted. But this would only be so if it was a milk allergy I think (or a very strong intolerance). Alana is intolerant and when we tried a full milk based formula trial it took about a week for me to be convinced she was reacting to it. In contrast, when I gave her “adult” yoghurt recently I knew within hours!
Goodluck with what you try. I’m glad you have found a pead you feel comfortable with. My Pead is great to, particularly when it comes to the milk intolerance stuff. She wasn’t so helpful with the reflux though, but still I like her. We can’t be good at everything

Oh, and it can take a couple of weeks to see the full effect of a increase in med dose for some babies.
It doesn’t sound like things are quite right with your little one yet…so I guess if I were in your shoes I would try either the increase in meds again, or neocate (personally I would do the meds, but thats just me, and I probably don’t have a great rationalle
)June 22, 2007 at 11:46 am #37580Anonymous
InactiveJust an update. Duane has been off his Singulair for a week now – now difference noted during the night. Bravely changed his formula back to Similac Advance – again, no changes during the night (thank goodness, seems to be fine w/ formula change). He still is restless and fussy betw. 12 & 5 am. Posted another topic today regarding Zantac. SarahJohnson2007-6-22 11:46:54
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