I am going to Burst!

[Anonymous]

Ok so yeah…
As of Aug 24, we saw the GI, she took Owen off Prevacid and started Prilosec 10mg once a day – can go to twice if needed. For two weeks I saw my happy baby, that I hadn’t seen in weeks. I had all the info regarding adding flavoring and spoke at length with my pharmacist and he assured me, the ora sweet and ora plus would not effect the drug, I called 3 more times after our consult and ask other pharmacists on, and they told me the same story, claiming it wasn’t flavoring – they were needed to suspend the Prilosec. I am not a pharmacist, I am a Mummy – Owen was doing well, I thought the world was good.

5 days ago Owen started getting a top side tooth, he was fussy, not into eating much – didn’t think anything of this… he was teething. 3 days later I started counting the days since we began the Prilosec, it had been about 2 weeks…

I called the pharm on Sunday again and explained Owen was acting as he did before we went to the GI and got the Prilosec, I told him our med wasn’t working. He laughed at me and said he had plenty of kids taking this compound for years and are doing well. I said, well my kid isn’t plenty of kids. I called the GI, told the nurse what was happening – I told her of my info from Marci-kids and here. She said to take the directions to the pharm and have then do it again – correctly. She explained that the script didn’t say add ora ANYTHING and it shouldn’t have been added. She said, had it said it – we would have had to get a new bottle ever 10 days so it wouldn’t become unstable. SIGH SIGH SIGH.

I called the pharm today, explained the situation again – he said bring in your info and I’ll do it. So DH brought it all down, he again said not using the ora plus would make it just a liquid and not a suspension. I told him to do it exactly as it was written – with 16.8% bicarb – he agreed to.

He calls me back about 4 hours later, tell me he doesn’t have 16.8% bicarb and that he could make it but it would be alot of work and be created in sterile conditions. Then he said, but I think we should try Zegerid. (Yeah me too) He said he would call my GI and explain the situation, and get back to me. Naturally, the docs were gone for the day. I called amn left a message too.

This whole time my son has been screaming, crying, not eating, not sleeping. Miserable AND teething. Is it supposed to be like this? I thought babyhood was supposed to be a happy time for them – a time of learning and discovery and bliss. Not pain and hurt constantly. i am so at a loss. I am mad and sad, and overwhelmed, and disappointed. I am a Mummy, I want to be a Mummy – not his doctor, nurse, and pharmacist.

Yeah, regardless tomorrow we will have a different med – either the Prilosec without Ora anything – but in only 10% bicarb OR Zegerid – depending on what the GI says. Why would she say no – it’s practically the same thing. But, its all so not fair to my son. He looks at me crying, his eyes say, Mummy why aren’t you fixing this? I am trying sweetie, I am really trying.

Thanks for listening,
Zoe

[Anonymous]

I’m so sorry Zoe. I know how frustrating it is to have to do the run around with all the doctors,pharmacists, etc. just to get medicine that works. It’s heartbreaking to see your little baby suffering too.

I wish you the best, and hope you’ll be able to get the correct meds very soon. Good luck.

[Anonymous]

I hope that the pharmacist can convince the GI to go with zegerid. It would make life so much easier.

I worried all of the time about the fact that Kaelyn screamed and was miserable for a huge chunk of her infancy. I worked hard to enjoy and treasure the few peaceful, happy moments that she had (because they truly were few and far between). She has grown into a thoroughly enjoyable, happy and well-adjusted toddler. In the end, this awful stage will pass and he’ll have no memory of it.

[Anonymous]

Oh Zoey – I’m so sorry to hear this – I had so hoped you and Owen were still

doing well. It sounds like your GI doctor is pretty good – maybe she will let

you try the Zegerid? And I would definitely do at least 2xday dosing instead

of just one regardless.

The top side teeth can really hurt and remember, teething really aggravates

reflux – Benadryl can be of help in that situation – have you tried a dose of

that? Dosing by weight for infants can be found on Dr. Sears – and if you do

a search here you may even find it that way. Maybe give Owen Motrin and/or

Benadryl to at least help with the teething aspect in the meantime?

Big hugs to you. Definitely keep me posted – either here or you can ALWAYS

email me.

[Anonymous]

Hugs to you and I know how you feel.

I am currently sitting here listening to my daughter cry in pain even though i have been giving her 20mg of omeprazole capsules since Monday. She has been on Omeprazole for 1 month in different forms.

She seems no better and the suspension worked really well for her but it tastes so bad I can’t get her to drink it and she spits it out.

I just don’t know what to do either i keep giving it more time hoping something will get better!!

Waiting for Dr P to send me some caracream and it can’t get here soon enough

It’s horrid to see our babies suffer while the drs and pharmacists are no help and we are having to tell them what to do!

Hope you get the zegerid, i wish i could

kkmum2006-9-14 4:48:57

[Anonymous]

Zoey, I’m so sorry that you are going through this. We went through a similar situation with my daughter for almost 9 months, even after we’d found this site. In fact, my pharmacist said the exact same thing to me… took me into a special room, sat me down, and told me that Hailey must have a more severe problem than just reflux because they have been prescribing this drug to kids for so long, and so many have been helped by it. I also brought in the marci-kids recommendations for how to make it, and they told me that I would be getting an unflavoured suspension. I found out months later- when Hailey was well into her feeding aversion- that they were adding something called stevia powder to make it taste sweet and that was degrading the meds. I know how awful you feel, as I’ve been there. In the end, I decided not to deal with the pharmacy anymore on this issue. The unfortunate fact is that they’ve done tests to see how to keep the drug stable from a pH point of view in the refrigerator, but unlike marci-kids, they have not done testing to see how much buffer needs to be added, and what effect these added ingredients have on the drugs themselves. So in the end, I believe that no matter how good the pharmacy, they don’t know what they’re talking about when it comes to reflux meds, which is very sad, I know.

I think your best bet is probably to try and get the zegerid prescribed. If not, then could you find a pharmacy that uses flavourX and see if they can get you CaraCream. I personally would not use the prilosec compound with less than the right amount of buffer, as it won’t work properly. I would also try to go for the higher dose of prilosec. Ten mg is very low, and 20 is even on the low side (depending on his age and weight). We weren’t dosed properly for a long time, and ended up with a whole series of other problems as a result.

You can email/call Dr. Phillips and have him call your doctor to get the script for zegerid, and to talk to your doc about a higher dose. I’ve heard that he’s done that for several people on this forum. If your interested, maybe others can tell you how to go about doing that.

I really hope that you can get things sorted out. I know how awful it is. Good luck. HUGS.

[Anonymous]

Oh, how I feel your pain. My poor son and I endured five, long, horrible months before we finally got his meds right. We narrowly avoided a feeding aversion….he was to the point of only sleep feeding and getting by on next to nothing. He was in pain and NO ONE WOULD LISTEN TO ME. It really was marci-kids that saved the day for me. I faxed their information on PPI dosing and Joel’s posts to my doctor and she finally gave in and gave Myles a proper dose. Things finally turned around and Myles did very, very well on the correct dose of Prevacid.

I didn’t have to deal with the compounding issue…I can only imagine how aggravating that must be in an already stressful situation. I agree with Lori….I’d try to push for Zegerid. So many moms here have seen it work miracles for their babies….it can be given any time/with or without food….it was created for children. Have you shared the marci-kids info with your son’s doctor? Like Lori said, some moms have had success by calling Dr.Phillips and asking him to call their child’s doctor.

Good luck.

[Anonymous]

Thank you all so very much. I needed each and every word! The GI gave the go ahead for Zegerid. I hope this ends our med search and flux troubles for a while. I hope it works really soon, he has lost his voice again from the acid in his throat My poor baby.

Thank you gang. If anyone has any words of wisdom regarding Zegerid, please feel free to share!

Love
Zoey

[Anonymous]

Great news about the Zegerid!!! I hope it works as well for your little guy as it has for so many other babies. I didn’t use Zegerid, so I don’t have any words of wisdom except to make sure his dose is adequate by checking at http://www.marci-kids.com

Good luck, and please keep us posted.

[Anonymous]

Yippee!!! Good luck. I hope it works out for you.

[Anonymous]

Zoey, I already told you this and more by email, but I’m SO glad you got the

go ahead for Zegerid and so much help from Dr. Phillips and Craig. I hope

sweet Owen feels all better soon. Huge hugs.

[Author]

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