Infantreflux.org | Solutabs not helping

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March 20, 2008 at 12:05 pm #49167

Anonymous
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We r on day 8 of Prevacid solutabs, no improvement. We had a GI visit yesterday. GI took a q-tip sample of his poop, still had blood in it! After 6 weeks, he still has blood, thus irritation in his tract. Doc wants to put Cole on Reglan. I’m unsure if I want to start that bc of side effects. His spit/vomiting is on and off, don’t think it is worth the possible side effects. Also, I asked if he knew about Zegerid. The doc gave me a funny look and said that he was a specialist. I requested the Rx, he gave it to me but at half the dose that Dr. P recommended.

I also asked about starting neocate/elecare. GI said that he did not want him to start till a couple weeks after new meds. I’ve asked about neocate several times and everytime he doesn’t want him on it. We are ready for another GI, next Wed is our appt. with another GI.

Cole moaned and cried the whole night starting at 1am. He cried hard and kept trying to fall back asleep. He seems very tired today, poor boy. Even when I held him, he cried. He didn’t want to eat either.

This nightmare continues…

March 20, 2008 at 12:58 pm #49170

Anonymous
Inactive

Oh no! Sorry to hear it. I’d actually try neocate before the change in prevacid, but that’s just my opinion. I’d also try neocate before reglan. If the problem is milk protein allergy, then the PPI won’t likely help. You don’t need a doctors script for neocate, at least not where I live, so you can try it yourself… just like you can try any other formula from the store.

Sorry you’re having such a hard time. The problem with the low dose of zegerid is that you won’t know if the med isn’t working because of the med itself, the dose, or the fact that he has MSPI.

March 20, 2008 at 2:24 pm #49173

Anonymous
Inactive

Your doc. sounds like an idiot. Just what does he think is causing the blood if not his formula? I agree with Lori that starting Neocate or Elecare on your own might be a good idea. I know many moms buy it on Ebay and you can also order it on your own through your pharmacist. The prescription can help though because some insurance companies will help with the cost.

I am so sorry that it’s so bad for you all right now. I totally remember those days, and my stomach turns just thinking about how miserable my son was and how hard life was for everyone involved. Hang in there, and trust your instincts. Sometimes mommies really do know best, even if the doc. is a “specialist”!

March 20, 2008 at 2:36 pm #49176

Anonymous
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Oh my – I will echo Lori and Naomi!! If there is blood in the stool it is likely because his gut is reacting to proteins in his diet (sorry, I can’t remember if he is on formula or BF). The Reglan will NOT help with blood in the stool. (I’m a pharmacist, if that helps) Reglan is a GI motility drug, which means that it helps the stomach empty quicker and helps the gut move it’s contents through. While it certainly has helped some reflux babies, it won’t help with inflammation of the intestine, and won’t resolve blood in the stool. I think a change in formula is a GOOD idea. Neocate and Elecare are expensive, but I’ve found it was a great investment to finally have a happier, healthier baby!

When we started Paige on Prevacid solutabs, it took 12 days before I noticed any improvement, and 24 days until I saw a much happier and more comfortable baby. It took a little longer that most, likely because she was only eating 0.5 – 2 ounces at a feeding, every couple of hours so her stomach was never really empty or full. Once it started working though, her feeding pattern improved a lot and it became easier to give the Prevacid on an empty stomach.

Unfortunately, even “specialists” aren’t exempt from being idiots. Did I just say that?

March 20, 2008 at 4:18 pm #49184

Anonymous
Inactive

Yeah, sounds like your doc is off on this one! Find someone who will prescribe Neocate or Ellacare, blood means milk is not working!!!!! He sounds like my son until we got him on hypoallergenic formula. He was in so much pain and wouldn’t sleep for days on end and then he would crash! I would stay on the Prevacid and go with NEOCATE OR ELLACARE!!!!!!

March 20, 2008 at 5:40 pm #49187

Anonymous
Inactive

I’ve been sooo angry and frustrated today. I’ve had to keep putting him in his crib to avoid becoming angry at him. He won’t eat hardly anything, not even w’the spoon. Then I lay him for a nap and he flips onto his tummy and cries. He usu. sleeps on his back. He’s tired and cranky and not eating today. All I can do to keep from screaming at the top of my lungs!

With that said, I took all of ur advice and called the pharm and ordered Neocate. Screw what the doc says, it can’t hurt him to try the formula anyhow. It will arrive tomorrow after 11am. I ordered the one without DHA, not sure if it matters or not. I just feel at the end of my rope today, soooo upset. I’ve resorted to syringing an ounce of formula into his mouth, slowly (advice from one of the Mom’s) because he won’t eat. Then he starts to cry so I stop. I feel so bad, I can’t stand this. I’m so sick of it.

I know that u all understand bc you’ve been thru it. Thank u for letting me vent and for the advice. Neocate coming tomorrow and I will start it right away.

March 20, 2008 at 6:04 pm #49188

Anonymous
Inactive

HUGS. Hang in there.

March 20, 2008 at 8:31 pm #49194

hellbennt
Keymaster

hang in there! for whatever reason(s), switching formulas can take 2 weeks (or more) to ‘show’ they’re working…it seems lots of things take 2 weeks! so give the neocate at least 2 weeks…also, if your baby doesn’t take to it straight away, give the old formula w/ a little bit of neocate & then slowly bottle after bottle keep adding neocate to the old formula until finally you have a full bottle of neocate…

maybe you can get your ped to write the script for it?

if so you can fight to get your insurance to cover it (hopefully it’s not a fight!) this will help you try to get insuranc to cover it: Going to the Top: https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;KW=going

in the meantime, babywearing!

it SAVED us! https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

March 20, 2008 at 9:45 pm #49202

Anonymous
Inactive

what my ped GI office did with our Elecare and insurance:

Once my ds had been on Elecare for one week straight, showing improvement they called a company called Optioncare. Optioncare is a home-infusion supply company. They home deliver supplies for infusion, enteral nutrition, etc. The Elecare was covered under the medical part of my insurance, not the pharmacy part. It is covered as Enteral Nutrition, b/c this is the only source of nutrition my ds gets. There are many other company’s out there, Optioncare is just the one we used, as it is covered by my insurance. Thank GOD I have great insurance; not sure if I could afford this formula any other way.

My ped GI office called Optioncare and Optioncare took care of getting the pre-authorization for Elecare, faxing the prescription to my insurance company, and basically all the paperwork type stuff. Our care coordinator from Optioncare calls every so often to check-in and make sure we have enough formula.

Once it was authorized, we got 2 cases of Elecare overnighted via FedEx right to my front door.

I will say that I noticed improvement on Elecare in my ds at about one week and he had done a complete 180 at about the 2 week mark, give or take a few days. FYI- I chose Elecare b/c the mixing ratio is like regular formula; 1 scoop powder to 2 oz. water. I know Neocate is 1 scoop powder to 1 oz. water. But, whatever makes your lo happy!

I NEVER noticed the change in my ds with the Prevacid until we got the formula situation figured out. I was giving it to him on an empty stomach, 30 min. before he ate. I didn’t crush it, or break it or anything. I couldn’t figure it out. The Prevacid NEVER worked for us until we got on the Elecare.

I would also maybe ask the reason for the Reglan. My ds was prescribed the Reglan, but never diagnosed with DGE. I know for some it works, but my son was really restless and would constantly hit himself in the face while he was on this drug. It seemed to me like he could never settle down, almost like he was “high”. I took him off of it and he settled down and seemed more alert and “normal?” to me. Make sure you read the information packet that should come with Reglan and look out for the side effects described.

March 20, 2008 at 10:47 pm #49203

Anonymous
Inactive

Thanks for the insurance tips, as of now it is NOT covered. I will have to write that letter or get my ped GI to get authorization.

I almost choked my son today. I crushed a half tab of pepcid complete as best as i could and started to medicine drop it into his mouth. he choked and forcefully vomited all the granules and the little food that he had just ate. i felt like crap and cried… gave him Zantac later instead. he had 10oz all day. don’t know if we can wait the 2 wks for neocate to kick in.

i didn’t know the difference between the 2 so i just got Neocate ordered, but i will make sure to follow the directions, thanks. how would i increase the calories with Neocate to 24cal/oz?

March 21, 2008 at 12:11 am #49204

Anonymous
Inactive

Hang in there – you are doing great. Good for you to order the Neocate. Trust me, you wouldn’t be the first mother of a GERDling to scream (or want to) at the top of her lungs! Don’t you just feel like handing them over to the doctor on days like that and saying “Here, you take him/her for 24 hours and then try and tell me everything is fine!”

One thing about the Neocate – it is difficult to mix into water and can be a bit grainy and clog nipples if it isn’t really mixed well. I found it mixes best into warm water. I usually make up a few bottles worth at a time (it lasts 24 hours in the fridge). I measure out the water first, then microwave it a bit until it’s warm. Then I measure out the scoops and wisk it really well. We tried MANY different bottles/nipple until settling on Dr. Brown’s bottles with the stage 1 nipple. Hope that helps a bit. We had a few miserable days until we got all that figured out!

March 21, 2008 at 12:34 am #49207

Anonymous
Inactive

neocate recipes

http://xpedio02.childrenshc.org/stellent/groups/public/@Manuals/@PFS/@Nutr/documents/PolicyReferenceProcedure/018733.pdf

March 21, 2008 at 12:43 pm #49218

Anonymous
Inactive

Thank u for the neocate site! Very helpful.

Thanks Sheri, currently I use a blender to mix alimentum/prosobee bc it is clumpy. I’ll try the warm water.

Somehow, Cole made it thru last night. I thought that if his diaper was dry when he got up, I may bring him to urgent care. He moaned at 430am, I rocked him, then put him down, went and got a bottle and he drank 4oz in less than 5minutes. Poor little guy.

March 21, 2008 at 2:24 pm #49226

Anonymous
Inactive

Hang in there Susan. I know how tough it can be. I also had days where I had to lay Ben in his crib or I might just have thrown him out the window. You are a good mommy to know your limitations, and you are doing what you can for him.

I just have a great feeling about the Neocate. Give it some time… I KNOW how hard that actually is, and you just want your baby better, and right now! Once he gets all those yukky proteins out of his system, that Prevacid is going to really start making a difference.

March 21, 2008 at 5:34 pm #49234

Anonymous
Inactive

Hi Naomi,

had to laugh about the window comment, i most certainly thought about it for a second, lol.

thanks for the positive thoughts and thanks for telling me i’m a good mommy. i’m trying my best, just like all of these Moms on here. i started Neocate as soon as i got it this afternoon. i am using 1/2 and 1/2 of his old formula (alimentum/probsobee). i’ll try to be patient, i am praying it does some improvemt. everyone keeps telling me a few more days, a few more weeks, but it just continues…

thanks for ur comments again.
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