Just plain exhausted!!!

[Anonymous]

Ok. I posted a while back and you ladies were very helpful. Hopefully I will have the same results this time.

My baby, now 9mo, has had reflux since birth. She was in the NICU for severe apnea.

We have tried everything under the sun and nothing is working. She is on Prevacid 30mg and 1 ml Axid BID. She was on Zantac and that did nothing. We just started the Axid earlier this week and no results yet.

She had an upper GI and it showed nothing but severe reflux. Now her Dr. is on the fence about a scope.

She does not sleep. She stays asleep (if I can get her to fall asleep) for 45mins usually. Around the clock. She constantly nurses. She is in so much pain. She has this peircing screech, arches her back and vomits all night long. She won’t sleep with me or stay asleep on me. She was sleeping in her carseat, when she did sleep, up until a month ago but now she won’t sleep anywhere.

All in all she is a happy baby. She has been crawling and walking on things for about a month now. She has a good weight, 18lbs. And she eats well.

The Dr. mentioned Celiac would be next to rule out.

I just am looking for some suggestions, support or a magic cure! Help me!

I am really not doing well with this. I am not able to function. I have an almost 4yr old that is home with me as well. I can’t think straight, keep up with daily tasks anymore, I am really suffering. I have health issues myself that are making it all worse and I just don’t know what to do anymore!

[Anonymous]

A few things come to mind…I am assuming she takes prevacid solutabs? Not a compounded syrup right? If that is the case, I’d look to see if it is being dosed ‘correctly’. The Solutabs have to be given on an empty stomach and followed up with a meal 30-60 mins later. I saw you said she is nursing all day long (every 45 mins). Her stomach is probably never really empty if she is an all day comfort feeder. Lots of our nursing mamas use(d) Zegerid b/c it is a PPI that does not have to be timed around meals.

Also, could she be hurting from something in your diet? Milk, soy? I am not sure if you are doing any eliminations or not. Those 2 seem to be big culprits and can really flare up reflux and make them miserable.

I am sure some others will chime in. Also, in our worst days, we used 30mg prevacid AND pepcid complete (OTC) at night. The P.C. really helped with breakthrough acid.

Hang in there!

[Anonymous]

I absolutly thing breastfeeding is best, but there are some cases that the child is reacting to so much (I think called FPIES) that some babies make complete turn arounds on Neocate. I think if things are this bad, it is something I would consider.

Also, not always the case, but the solutabs have lactose and aspertime in them and they were a nightmare for both of my boys. I think most babies do fine on them, but for some reason niether one of my boys felt good on them. They were very fussy and sleep deprived.

Sounds like this has been going on way too long if your LO is 9 months old!!! I think if they do the scope they could biopsy and see if there are some culprites in the diet that are hurting your baby, so I would push hard for the scope. That woudl give you a good idea how much damage is in teh esophagus probably causing pain, or if there are allergy cells from food, etc…

Hang in there!!!! You have been dealing with this for a very long time!!!

[Anonymous]

Yes she is on the solutabs. I usually am able to have at least 45 mins before dinner with it. Her Dr. will not give her the segerid, I asked and pushed. Thats why she is on the solutabs, she was on the liquid and zantac first.

We have done the elimiantion diet for two months a while back for soy and dairy and there was no change.

At first they said it was due to over active let down.

I had surgery for they thought was a cancerous tumor on Jan 30th and they ened up removing it and my thyroid and ever since that, my over production has stopped. But I feel just awful.

They just mentioned Celiac and the scope. The thought of it scares me. She wanted to see how she does on the axid before ordering the scope.

[Anonymous]

Not to hang on this subject too much but the FPIES babies do not improve enough with the elimination, they need the completely protein free diet of the Neocate. The scope would be able to tell you if that was it and if that was necessary, as I am not sure, but just know that there was one mom for example that had 6 children and this was her sixth and she had breastfed them all, and he was so severe, that the Neocate was the only thing that helped….

Hang in there! I am so not a doctor, but just want to give you an option, as after 9 months, you should not still be in this nightmare. It just seems way too long and it sounds like you are going through a lot of your own stuff, too, that getting Hadley feeling better would be better for you all!

You are a strong mommy to be going through so much. I would really push for the scope for more answers. The prevacid dose is pretty good, so unless she needs higher (possible, but not likely) there is still something bothering her in diet or the solutabs.

I am saying a prayer for you and your family!

Ann Marie

[Anonymous]

Few ideas here… are you only giving her the Prevacid 1 time a day? If so, you may want to try splitting the doses to at least two times a day, although marci kids suggests that three times is even better. She is probably metabolzing it too quickly and not getting coverage for the whole day.

Did you cut out the milk/soy completely? It’s in everything, so you have to be really careful to read labels. It can take several weeks for the proteins to clear your system and maybe even longer for them to clear hers, so if you didn’t stick with it long enough, you may not have seen results yet. Oh, well you said two months, so that should have been long enough.. hmmm..

What I would try, is changing her dosing schedule for a few days and if that doesn’t help, then maybe try a complete TED diet.. cutting out everything but about 12 foods. Dr. Sear’s website has all the info on it, as does the TED link on the forum. It’s only for two weeks, and maybe you can find if there are other foods that are bothering her.

Also, what other foods is she eating? And what do her poos look like? Any rashes, eczema? Weird questions, I know, but sometimes they can point to food intolerances.

Hang in there. Hopefully things will turn around soon!

[Anonymous]

My son just had a scope and it wasn’t as bad as I had imagined. The worst part was the 4 hour fast beforehand. My little man does not like to be hungry Plus, the scope ruled out a whole list of things that could have been wrong.

Hang in there and good luck!!

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