Infantreflux.org | Help!Really need some advice

This topic has 9 replies, 1 voice, and was last updated 12 years, 10 months ago by Anonymous.

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December 7, 2011 at 3:11 pm #69516

Anonymous
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Hi! I’ve been lurking on and off for a while and thought maybe someone might be able to help steer me in the right direction or just give me some reassurance.I am so stressed and at my wits end!Just not sure what to do at this point.

My daughter is 10 months old and was diagnosed with reflux and dysphagia with aspiration at 6 days after several choking/turning blue episodes and was hospitalized for 5 days.For the first 2 months I breastfed and supplemented with milk based formula.She was on .5 ml Zantac during this time with bottles thickened with rice cereal 1 tsp per 2 oz.She had some constipation and a really bad rash that I was told was baby acne(but only was there after being fed)during this time.At some point between 2 and 3 months we saw GI who upped her Zantac to .8 three time a day and had us trial neocate.Her reflux worsened with neocate but the rash was gone after 2 days as well as the congestion.After 2 weeks most of her bottles would come out her nose so w stopped neocate and tried soy.There was an instant improvement with congestion and slightly less spit up but horrible gas and constipation along with dark circles under her eyes.Went back to milk based enfamil and kept dealing with her symptoms.At 5 months she had these horrible screaming nights and days,stopped sleeping through the night or at all for that matter.6 months they finally found that she had an ear infection which came back 5 more times and tubes were placed at 8 months.The sleeping thing never changed.During all the ear infection stuff we had feeding therapy which didn’t help her aversions.They only suggested I turn her spoon sideways to feed her.Also had another swallow study which showed she still aspirates slightly.

So a few weeks ago her reflux symptoms seemed to really flair and her rash came back. The constipation worsened and she’s been having firm black poops for quite a while(negative for blood)I took her to her ped who said she now felt there must be an allergy so we were sent to an allergist.Allergist says she has the classic textbook symptoms of an allergic child-allergic shiners,slight eczema,severe dermagraphia,slow weight gain,colic as he put it and restless sleep when she even does sleep.He did a blood test for banana,milk,soy,peanut(oldest dd is allergic),egg white/yolk and total ige.All of these were negative and the total ige didn’t even get done because of not getting enough blood.He ended up saying no more testing,she probably has food intolerances,take 1/2 tsp Zyrtec for the congestion and call him back in 2 months.Now I’m aware these tests may not be accurate.

I am totally unsure what to do.We have done Zantac, Prevacid,omeprazole,carafate and literally every kind of formula.

Currently she’s on enfamil,.8 ml Zantac,2ml carafate every 6 hrs as needed and the zyrtec.Her reflux is SO bad right now and she isn’t sleeping longer than a few hrs and she’s very restless and sleeps with her rear end in the air.lol.She sleeps that way from discomfort I think.

What I’m wondering is should I maybe try a different formula,different meds,or any other things?I feel helpless and her GI hasn’t been any help.I just want her and everyone else in my house to be happy and rested.

Thanks for taking the time to read this exceptionally long post!

December 7, 2011 at 6:11 pm #69517

hellbennt
Keymaster

what did they tell you to do about aspiration? are you using a product like Thick it or Simply Thick to thicken? or are you using cereal?

can she tolerate solids? are you keeping track to see if solids are causing anything- fussiness, etc. For example: sweet potatoes at night and bad sleeping, things like that?

this is what I would do (I am not a medical professional!) – things got better w/ neocate, right? well allergic stuff did…me, I wouldn’t do the zyrtec when really congestion & ear infections sound like they’re from reflux & reflux sounds like it’s from protein(s) in what she’s eating…or least some proteins are exacerbating the reflux situation. The main culprits are usually milk and/or soy (MSPI= Milk Soy Protein Intolerance/allergy)

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

so: I might either try alimentum or nutrimigen OR go right to neocate.

She’s 10 months so she might not like the taste of these formulas. If this happens, I’d transition slooowly to the new formula, adding one ounce to her regular bottle at a time. and, I would not thicken w/ cereal. If I had to (not sure why you’d have to?) perhaps I’d try oatmeal or barley and I’d find a brand that does not have any hidden soy or milk protein ingredients.

how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

How much does she weigh? I can help you figure PROPER zantac dose:

Zantac dosing– my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

I would also tell you to get back on a PPI. Chances are you were not on a proper dose or form of med or both & that’s why you say it didn’t work:

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

December 7, 2011 at 6:52 pm #69519

Anonymous
Inactive

Thanks so much for the reply and info!Im going to read when I get a quiet moment.It has been yet another day of incessant screaming.

For the reflux they first told me to do rice.This gave her awful pains so I tried oatmeal with the same result.Then we tried thick it which resulted in her whole torso blowing up like a balloon,worsened spit up,gas and diarrhea.After that they told us to do less rice and do beechnut rice.Didnt change plus we were in the throes of feeding aversions.Then it was thicken every other bottle.Her ped says she’s not even that concerned about that anymore.ive had luck using preemie nipples.

We did a really long stint on nutramigen and she was so so so much worse.She had gas that was just unbelievable,cried all the time and her rash worsened.Tried alimentum(both powder and rtf) and it was even worse than nutramigen so her dr switched us to enfamil a.r. and that was also bad in its own way.

If we switched again what is a reasonable time for change you think and is it common for things to get worse before better?

She weighs 17 lbs 1 oz. I thought the Zantac seemed low,not to mention she’s been on the same dose for 8 months.Ive asked about upping the dosage and I get the same reply every time.Seems odd to me.

Oh also solids…in my opinion she doesn’t eat that well the majority of the time.Ive tracked her foods for some sign…so far all I’ve gathered is that she vomits every time she eats creamed corn and pot pies.She doesn’t eat very well most days.Its a fight every time and she wins.

As I was typing, my husband was holding her while she screamed and she has got a ton of gas.Maybe this is a lot of her problem?

I’m definitely interested in looking into the Prevacid again.my 7 year old has had reflux her whole life and it has done wonders for her.

December 7, 2011 at 8:30 pm #69520

hellbennt
Keymaster

well, I might just try neocate? there is even neocate jr- I don’t know a lot about it? If you feel like you need to thicken (& I would think the dr would be concerned w/ thickening since there’s aspiration going on?!) I might try Simply thick (just because you haven’t tried it yet?) you can do a search- go to upper right-hand corner ofthis page and search key words simply thick and search all forums and also search 6 months and OLDER-or you could use beechnut oat or barley (rice is very tough on their systems and some are even sensitive to it)

Give every new change a good two weeks!

something else to try is a formula w/ rice in it rather than corn? I know I’m throwing a lot at you, but maybe it’s the corn in the formula?

https://www.infantreflux.org/forum/forum_posts.asp?TID=14283&KW=Ross+corn+rice

it’s a lot of trial and error, sigh. I know. It’s hard. you can do i,t though!

also: I would go back to ‘basics’ w/ solids? one thing at a time for reactions? I wouldn’t be giving dairy like creamed corn or pot pies(?)- start

w/ bananas and sweet potatoes, apples, avocado, squash- things like that…

I’m going to calculate zantac for you. Please do NOT ‘just’ take my word on this! READ THIS:

Zantac dosing– my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

17lbs 1oz = 7.7 kilos

highest dose for zantacby weight is 10mgs/kg

7.7 x 10 = 77

that’s 77mgs of zantac per day

your bottle of liquid zantac says 15mgs/ml

this means that for every 1ml of liquid you give, there’s 15mgs of the medicine zantac in that 1ml of liquid

so: 77 divided by 15 = 5.1mls a day of zantac in a 24hr period

you can divide this ‘unevenly’ & give a higher dose at night…

December 7, 2011 at 8:31 pm #69521

Anonymous
Inactive

Laura,

I read all of the links you posted and all were very helpful.A few of my previous questions were answered when I read these too.I thought the intolerance article was very interesting.Definitely would explain a lot.Her allergist did say he thought she had some food intolerance but didn’t even give me the slightest clue what to do from there.

Zantac and Prevacid can be given together right?Maybe that’s the path to go if I can find somebody willing to add more to the zantac.Her GI acted like I was crazy when I asked about combing more than one medicine.Her pediatrician is more understanding and works more from a parent knows their child better than I approach.Her GI on the other hand told me to just deal with the crying.No joke.

I feel like I’m better informed now and that helps tremendously.I appreciate your help SO very much!

December 7, 2011 at 8:34 pm #69522

hellbennt
Keymaster

oops! posting at the same time as you

NO zantac and prevacid canNOT be given together. They must be spaced 4 hrs apart.

As for the zantac, try asking your pharmacist to humour you, like it says in the link Then you can TELL your ped about higher dosing for zantac. My own ped didn’t even know (that’s what started the thread- the posts under a topic-)

December 7, 2011 at 8:56 pm #69524

Anonymous
Inactive

I’m not sure really what the deal is with the aspiration.The last swallow study was 4 months ago and showed one aspiration versus like 15 on the previous.Speech therapy and her pediatrician were all pleased by this and felt like we could back off the thickening,largely because they felt it was so critical that she eat.She was losing weight at that point because of just not eating and would drink unthickened formula.

We did try the rice formula you’re talking about…baby’s only.Lots of awful constipation and she growled all the time.

Thanks for the Zantac dosing.I’m definitely going to ask about this tomorrow.I think my plan right now is to call the office in the morning and leave a message for her dr.See what she thinks about the medicine end of things(and push for some changes)and start eliminating some foods.Basic foods do seem like a wise thing to do.The whole table foods of any sort thing was another suggestion in dealing with the aversions.I was willing to do anything to get her to eat then but that could indeed be adding fuel to the fire.Something that really didn’t occur to me.

December 7, 2011 at 9:12 pm #69525

hellbennt
Keymaster

I think neocate might just be it…transition slooowly if taste is an issue! look into neocate jr…(might be too young?) if thickening isn’t necessary, then forget it…will she eat cereal from a spoon? I’d forget rice and go for oatmeal or barley w/ no added ingredients…and I’d start w/ simple foods- doesn’t have to be pureed! Try different thickenesses from thin puree to thick to just big ‘ole chunks she can fit in her palm. She might be particular about textures…

I would FAX the doctor…

FAX FAX FAX the dr

don’t wait for a call…

start off with a THANK YOU

keep it short & sweet

stick to the FACTS (no emotions and ramblings)

state current meds, doses & symptoms

make request- flat out- short & sweet

provide pharmacist name & contact info

THANK AGAIN

follow up by calling office to tell them fax was sent

call again later to discuss requests made in fax, ie:

is RX called in yet?

THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

December 8, 2011 at 1:57 pm #69528

Anonymous
Inactive

You’re right, Laura, Necoate Jr is designed for infants over 1…

Also, something to consider if you’re trying to get your LO used to solid foods and are worried about reactions, Neocate has a semi-solid “cereal” called Neocate Nutra. It’s hypoallergenic just like Neocate formula and once mixed with water you can spoon feed with it.

December 9, 2011 at 5:42 am #69530

Anonymous
Inactive

Hell everyone! This is very nice information very informative

I must say is only this!

Select a Doctor – The first thing you need to do is select a doctor. You will most likely start out with your pediatrician. The recognition of reflux is finally starting to spread in the medical community. Many pediatricians are able to diagnosis and treat reflux. However, in same cases a specialist may be required.

Gather the Facts – When you first approach the subject of your daughter`s discomfort with your doctor, he will ask you questions regarding your daughter`s behavior, habits, etc. ayam2011-12-09 05:46:00
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