I dont know what to do

[Anonymous]

Im very new here, in fact, new to computers but I have been reading lots of posts and need help. My doctor wont prescribe Zegerid because she has never heard of it. My little one didn’t respond well to the solotabs at all and I suspect a MSPI. My older son had that, and now I realize he had a bad case of reflux, but in small town and in my inexperience I had no idea about reflux. Now my little boy Tanson has some signs of silent reflux and doesnt want to eat. I have been on a rollercoaster of emotions while trying to continue to nurse him from worried about not having enough milk to having too much milk because of the way he would scream when I tried to feed him. Now I am convinced of the silent reflux but the prevacid made him fussy all day. I read about having prevacid compounded but there seems to be some confusion on how long its potency and effectiveness lasts in this form. The doctor suggested the powder packets but I read that alot of babies dont react well to the flavoring. I dont know what to do, we have spent so much on prescriptions and doctor visits with a counterful of medication and herbal remedies that havent worked to help him. Mylanta seemed to help last night but I dont want to give that to him everyday if its not safe. Has anyone used the compounded prevacid and had better results? I dont want to have them make it if its not going to work? I wish my doctor would let me try Zegerid. I really was feeling like I had found something that might help and now I feel totally like it would help if I could get the right medication. The solotabs just made him fussy except for when he was eating. It was so great- he just sat there in my lap and ate instead of squirming and arching his back, and latching on and off, but instead he was fussy the entire rest of the time which is not a good trade off. Oh, well. Hopefully someone has had a good result with the compounded prevacid.

[Anonymous]

hi there
the solutabs contain lactose and aspartame which upset some babies.
our ped . never head of zegerid either, in fact, she has never prescribed a PPI to a baby. but i armed myself withpiles and piles of my research that i printed off from marci-kids.com and contacted Dr phillips (creator of zegerid)
he actually called out ped. and explained to her about zegerid and she prescribed it. my son has been doing so well on it!
also, there are other forms of prevacid like capsules you break open over appelsauce or packets. if you are getting it compounded you have to make sure its done a certain way, this will explain:

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&a mp;KW=ppi

also,
have you read the info on marci-kids.com?

[hellbennt]

there’s ‘prevacid 101’

it’s the purple post from the link that is ‘stickied’ (that’s made to stay the first post) of the Medicine Forum-look for ‘treating GERD w/ PPI’s’

from there, look for the purple post

and there, you’ll read about how to get Caracream…this may be a possibility for you…(might not but it’s worth a try!)

[Anonymous]

Hi and welcome,
I’m sorry to hear about your struggles with Tanson. I know how frustrating it can be trying to find the right medicine. My son has been using the compounded prevacid for 6 months now, and we have never had a problem with it. It did wonders for him, actually. If you do get the compounded, try to just get two weeks worth at a time so there’s less risk of it going unstable (ours never has, but some ppl have had this happen). I think it would definitely be worth a try.

But if you’d rather try the zegerid, could you go to a different doctor?? I know you said you live in a small town, so this might not be an option. It might be a good idea to schedule an appointment with a Pediatric GI doctor too. It sometimes takes awhile to get in.

Good luck! I hope you can find something to help your little boy. Keep us posted.

[Anonymous]

Hi and welcome

Sorry that you are having so many issues. Couple of things:

– Zegerid is compounded prilosec really – will your doctor prescribe prilosec? Then all you have to do is have it compounded at the pharmacy. In Laura’s intro (which is in a sticky under introduce forum), there is an explanation as to how the medicine needs to be compounded to be effective (and in essence to have zegerid). If you do it with sodium bicarbonate (If i remember correctly it is at least 18%), no flavoring, the potency should be fine and you can give it with meals. I don’t know about compounded prevacid since we did not use it – but we did do the prilosec for a while and it did not help, so prevacid was the answer for us

– when you say that your baby reacted to the solutabs, what do you mean? Matthew had horrible gas and cramps that lasted around 2 weeks, so yes, he was fussy. Unfortunately, sometimes it takes time. What reaction are you seeing other than fussiness? the packets are similar but they were harder for us to administer than the solutabs. Yes, i believe the solutabs contain lactose (but nothing to do with MSPI) and i believe that someone at Marci-kids said that not enough to cause reaction, but maybe he si having a reaction or maybe it is the flavoring?

– Mylanta is pretty safe – we were told we could give Matthew, when he was around 12pounds or so, 2.5ml, up to 6 times a day

– if you think that your baby is MSPI, are you on the elimination diet? I am no expert in this… i never breastfed but others that did will prob help. When changes in the diet do not help, switching to a hypoallergenic formula can make a huge difference

– do you have a ped GI???

[Anonymous]

matthewmama wrote:

(If i remember correctly it is at least 18%),

16.8%
nataliachick72006-10-18 14:36:51

[Anonymous]

Wow, I cant believe how fast you have responded. Im so glad to here someone has had luck with compounded prevacid. I did read Prevacid 101 but I didnt know I could still get the caracream. I really think if I could get information for my doctor she would prescribe it after the Prevacid works. We have moved now to a much much bigger place but I dont know many doctors and sometimes doctors can be hard to work with. I think I just need a little hope that this might work and then maybe I will get the courage to get my doctor to give me zegerid. I know there are allot worse cases than my baby has, like my sister, her little one isnt doing so well, but at least now they know why. I just need to have light at the end of the tunnel. Thanks, everyone.

[Anonymous]

I am on an elimination diet. I havent had dairy for 10 weeks now, which is killer because I love cheese!! But its worth it. For awhile I was eating almost nothing but meat and bread because one doctor said I should try eliminating all the common allergies. I felt like I was starving and so I added a few things back in. It has been crazy but anything is worth it if it helps him be in less pain. Really he is doing better I think he just doesnt like to eat. Awhile ago things were really bad, I would tell myself take one day at a time. I have four other kids so things just get crazy when hes fussy. When we tried the solotabs, he pretty much was just uncomfortable all day, and then his normal nighttime episoded got much worse. Maybe, then his body just needs to adjust? Was there anything you could do to help the cramps?

[Anonymous]

Hey there!

First:

Second: I don’t know where you live but try checking out the board that has pediatrician and GI recommendations. Maybe you can find one that is close enough for you to go to?

Third: How long has your son been on the Prevacid? Do you know about the dosing rules? Give it on an empty stomach (at least 2 hours after a meal) and follow it up with a meal 30 minutes later. I’m just now understanding the doses and all but it seems as though this timing and the amount of the dose can make a big difference.

How long has he been on the Prevacid? It can easily take up to 2 weeks to have a full effect. He also might not be getting a high enough dose.

[hellbennt]

from my welcome/intro (groupie intro that’s stickied in the Introduce Yourself Forum) there’s a section about breastfeeding your refluxer

& there’s also a link to MSPI information, where there’s info about breastfeeding, too

and there’s a link to babywearing info

edited to add; oh yeah the link for Finding a GI is there too

hellbennt2006-10-18 16:16:5

[Anonymous]

Hello and welcome.

You’ve already gotten lots of good advice, so I won’t repeat everything, but I wanted to welcome you and encourage you to keep trying…..the right meds (and dose) can really turn things around.

Myles did have some pretty severe cramping from the Solutabs, but it passed in about two weeks and then he did fine with them.

Good luck and glad you found us.

[Anonymous]

Just wanted to add that sometimes a family doctor will prescribe zegerid. I know that several mom’s on here including myself had to get our family doctor to prescribe medications for our little ones.

[Anonymous]

Like Thais said, IF you get the prilosec compounded as per the marci-kids recommendations then it is like zegerid. BUT, that’s a big if. We thought that we were doing that for months, only to find out that they were putting some “extra” ingredients in it that were causing it to be unstable. But if you can find a good pharmacy that will listen to you on how to prepare it then that might be an option for you.

Alternately, you can email Dr. Phillips, the creator of Zegerid, and ask him to talk directly to your doctor for you. Many moms have had success doing that.

If your doc won’t help you, then you might want to look into finding another doctor (if that’s an option). In Laura’s intro there’s a section called finding a Ped GI and people on this site have compiled recommendations for doctors. Whereabouts are you?

Good luck. I hope that you can find something that will help your son soon.

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