Hello, new mom in New Jersey needs help finding a Dr in NJ who will prescribe Zegerid!!

[spyfoxx]

Hello all,

I have been seeking advice from users on this site.

I am a new mom in New Jersey and my son is only 6 weeks old. When he came home from the hospital, I started noticing GERD symptoms and sought help to determine the cause of his symptoms here online.

I realized that he has severe silent reflux and immediately brought him to our pediatrician who gave him Zantac. Didn't work. I found a GI dr in Morristown whom I'm working with now. he gave my son Pepcid. Didn't work. he then gave him prevacid solutabs 15mg a day (my son weighs about 11 lbs now) and it's not working, despite y efforts to follow all dosing timing, schedule, etc. Three days ago, he was put on neocate. While he has been on Prevacid for 2 weeks now with little change, I am hoping the Neocate will reduce the reflux if indeed there is an allergy going on-we have no idea.

I'm looking for a doctor in New Jersey who will prescribe my son ZEGERID. Does anyone know of a Doctor who has prescribed Zegerid (preferably at MARCI-Kids dosages?) I am willing to travel if I have to.. any suggestions would help tremendously. My current GI knows nothing about Zegerid and won't give it to my son. I am desperate to try something else. I am particularly interested in the Zegerid because it's difficult to give my son the prevacid on an empty stomach -THEN WAIT the 30 minutes before a feed.. I have a screaming crying baby who wants to eat when he wants to eat-trying to time this twice a day is maddening and his father and I are about to lose or minds!

I sleep sitting up with this child and we take turns in shifts.. our lives are a mess and nothings working>> I'm sure I don't need to explain this-all of you have probably been there!

Any New Jerseyans response would be helpful-even for support!

Thank you for any help..we are really at the end of our ropes over here and my son is in tremendous pain...We just want to get him out of this misery..

[AvasMommy]

Hi and welcome! I'm no help in NJ, we just moved to Boston from FL. Mary and Tracie (jtplus4) are our resident NJ experts...they'll pop in soon, I'm sure!

Zegerid seems to be awesome for some kids and not so great for others. We gave it a try and it was very, very difficult to get the volume into Ava...this was before she had a feeding tube, and the flavor was horrible, too...like a peachy mint. Some kids do really well on Prilosec vs. Prevacid, too. Nexium is actually Ava's wonder drug, but we're about to start Protonix (thanks, insurance! ). It seems to really be a matter of what works best for each kiddo, rather than which drug is actually better. I hope you can find something to help!

Glad you found us!

[spyfoxx]

Hi Ava's Mommy! Thank you for your reply.. I'm hoping for a response from the NJ residents you mentioned.. I am just at my wits end and would like to at least try the Zegerid..I am willing to try anything at this point..It's sooo hard to wait and "see" if these meds work since while you watch and wait- you're child is in obvious distress, getting worse, damage is being done and NO ONE IS SLEEPING!!

I am a new mom to my fist (and LAST) son.. I had a very difficult and traumatic birth experience, suffered thru several attempts at a failed and painful epidural, emergency C-section where I ended up feeling pain, screaming for the surgeon to stop and I was then knocked out (the reason for this was never given, just danced around) woke up in some strange recovery room alone and didn't see my son for over 4 hours.. then i endured a horrific spinal headache as a result of a puncture from the epidural (leaking spinal fluid that causes immense pain from pressure changes in the brain)-this lasted 10 days..then I came home with what was supposed to be a joyous new baby and I am now dealing with GERD in my son and pretty bad post partum depression. I'm ready for my tubal ligation now please.. no, really.

You can only imagine why I am so frantic for help right now..

Thanks for you words of encouragement..I hope to hear from some NJ people soon..

[AvasMommy]

WOW...that is a HORRIBLE birth experience! I am sooo sorry. When we couldn't find a diagnosis for Ava, we made the choice to be "one and done", so I don't blame you in the least for feeling the way you do.

People just don't realize how devastating reflux is in very young babies and children...it's not just the "heartburn" you think of. I swear, I nursed Ava around the clock for her first 16 mos of life...what went in came right back out. I was constantly covered in puke, we never, ever slept for more than 2 hours at a time (on the GOOD nights!), and it was soooo exhausting. I can absolutely relate.

[niknak]

Don't know anything about docs but your birth story sounds so scary and painful. I'm glad you are here and hopefully we can help you!@

[andrea]

Sorry I dont know much about Zegerid and who will prescribe it. There ARE other options though (Prilosec, Nexium, etc). Those all (including Zegerid) are PPI's and therefore in the same class of drugs as Prevacid. Some do work better for some kids though for unknown reasons.

What part of NJ are you from? I live in Philly.

Anyway, hopefully you can find a solution to make your son more comfortable. The one thing I was for sure going to suggest though is to only change ONE thing at a time (ie you just switched him to Neocate - leave the meds alone for a few weeks so you can tell what is helping, etc)

Is he exlusively formula fed or dos he get a litttle ormul every once in awhile]

[spyfoxx]

hi andrea,

thanks for your reply..

my son is formula fed only-been on neocate for about three days now.. seems to be worse actually but who knows whats making it worse now--everything makes it worse!

i appreciate hearing back from ppl-this is such a lonley place to be in with this disease-ppl just don't understand-but here-ppl do understand..

i wanted to try the zegerid bc i read that you dont have to time it around meals and thats a big issue for us right now-- my son can never wait the 30 minutes after meds and the period before is short too since he wants to eat every 1.5 to 2 hours..

i am scared to 'choose" the next medicine.. prilosec, nexium, etc..? it's like playing russian roulette-except you have to wait two weeks after the choice to see if it's working or not..in my case..it's been full of "nots" so far..

everyone seems to have such varied experiences with all the PPI's- i'm not sure whether to ask for prilosec or nexium..

i'm gonna try to wait it out to see if the neocates gonna make a difference before i change anything again-admittedly, it's very hard when it's 3 am and he's screaming and arching his back and looking at me like "mommy, do something!" my heart breaks over and over.. i feel like having a child was a mistake.i am full of regrets even though i love him more than anything.. i'm just not feeling strong enough to take this much longer at this point.. i really dread feeding him.. when he can nap- i feel an hour or two of peace..i never want to wake him up because i know what's coming and it's pure misery..

i'm really upset with my other side of the family bc they just say things like"oh it will get better someday" and they minimize what we are going through- it's making me very angry and i feel like i don't even want to talk to them anymore..i just shut them all out..

hopefully i can gain some hope from you guys.. thank you for taking the time to respond..

[scarlet]

Zegrid IS prilosec just madewith a buffer in it so you can make it at home with that said very few are on it as most don't have a lot of luck with it cause of the taste and because the buffer increases vomitting in some kids.

Your best bet is to call or email Marci kids they are quite accomodating.

Prevacid is easiest to administer if you use solutabs if you use compound please get it swapped every 10-14 days. Since a new ppi will take 2 weeks it may be better to see if an increase helps first this only takes a couple of days. Good luck

[scarlet]

I just read your birth story I have a 9 week old c section baby and that senario sounds horriffic it sounds like your doctor has a lot of explaining to do, well the anethatist really sounds like the epidural wasn't placed correctly and he should of tested how good the block was when you felt pain procedure is to knock you out, it's always there as a maybe so with luck he was prepared but didn't sound quick enough

I know you aren't thinking of babies and who could blame you but they can do it with you completely under no epidural to stop this, they don't do it much but my sister did it this way

with the ppd I haven't been sufferring but I have really low iron and been so tiredwhich is abut depressing getting as much sleep as you can easier said thandone I know and getting out for a 30 min walk really does help even though it is hard to get motivated but worth it

baby can have up to 4 ml mylanta 4 times a day spaced 2 hours from the ppi, it may help

[Minnie]

Yeah Zegerid is just prilosec with buffer added so you can make suspension prilosec at home.
Eric was on it for almost a year
We had really good luck with it (same experience as prilosec), but UGH the mixing and dosing were such a head ache.

As far as timing with the meals I found that if I didn't time it like any other PPI should be timed it didn't work as well, and would make him very bloated.
I don't want to discourage you, but if it's this point and this point alone why you want to try zegerid it may not be worth the fight.

Not to say this isn't a good medicine. It IS. and I think I would opt for this over a compound/suspention if I had an infant again that couldn't swallow the capsule beads of prilosec, but I would only fight so hard for it, because to me it isn't superior over other PPIs just less trips to the pharm, and I would always know it was fresh and ready to work.

Now when you say the zantac, Pepcid, and Prevacid didn't work. Do you mean not at all? did you see any improvements?
Maybe something else is going on, more in the way of allergies. How long have you been using neocate? This may be just the ticket she needs to get better.