Infantreflux.org | Self Dosing and other questions

This topic has 12 replies, 1 voice, and was last updated 14 years, 9 months ago by hellbennt.

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November 30, 2011 at 1:42 pm #69483

Anonymous
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I have several questions:

1) how many of you are self dosing your gerlings? I feel like from all the info I have found here, that I could do this on my own and not mess with the hassle of insurance refusals and hesitant dr’s. I realize that no one could “recommend” that I do it on my own because of liability, but how many of you are doing it and is it working ok?

2) if you are self dosing, why? Is it because of insurance? Is it because you can’t find a cooperative dr? Is it cost?

3) My plan, based on what I’ve gleaned from several posts on the “Medicines” forum, is to mix 20mg capsule zegrid, 20mg capsule prilosec, one childrens TUMS ground up and 19mL water. Does that sound right and that should give me 2.11mg medicine per mL, right???? Can I increase the concentration by reducing the amt of water? I would use MCS but I cannot find Mylanta anywhere around here. I’ve looked in multiple stores. Then I’ll use the dosing recommendations posted on this site taken from MARCI kids to determine how much to give.

4) does MARCI kids still exist? Everytime I try to follow a link, even from posts in the past few days, I get a “page cannot be displayed” error.

THANKS!!

Karen

~Ian- 9 yr old, past GERD, sandifers, eating aversions, swollowing disfunctions, delayed growth, not medicated – out grew at one year.

~Brendan – 7 yr old, past GERD, sandifers, eating aversions, swollowing disfunctions, had prilosec which helped some – out grew at one year.

~Jude – 2 months old, current GERD, sandifers, swollowing disfunctions, on 7.5mg prevacid per day….not helping enough but dr. won’t change dose.

November 30, 2011 at 8:57 pm #69485

hellbennt
Keymaster

I can’t answer currently how many are dosing themselves…I can say it’s been going on since prevacid and prilosec and then zegerid became OTC…

why? because oftentimes doctors are what we would consider ‘behind the times’ and won’t prescribe the marci-kids doses. Marci-kids doesn’t exist anymore, or at least right now. they’re working on it! the TEAM, the actual medical professionals, still exist and still work at the U of Missouri. I can really just speak for the ‘head’ of the team, Dr. Phillips (you might have seen him referred to as Dr. P). He certainly exists and I’ve been in touch w/ him as recently as this week…He is still at the U of Missouri.

I think all the factors you mention are taken into account when parents decide to try things on their own- doctors’ cooperation (or lack thereof), cost of meds and insurance. I think the main 2 reasons are: (1) that there is nothing out there that you can get, aside from a RX of zegerid 40mg packets, where you can give an infant a RELIABLE liquid (compound) at any time & not have to time around meals to be effective and (2) getting a doctor on board to RX the above mentioned zegerid 40mg packets…

I think that taking matters into one’s own hands is extremely useful and yes I think it can be ‘dangerous.’ I, personally, wouldn’t go this route w/o having gone to a ped GI first. In your case, your dr won’t rx any higher. In your case, if it were me (& it’s not me! disclaimer here!), I’d TRY a higher dose for two or three weeks, note the results, back down a bit, note the results, etc & try to find the lowest dose possible that is effective. how do you know it’s effective? believe me, you’ll KNOW!

I also believe that if there’s no improvement after 2 or 3 weeks at the marci-kids dose then I’d look to find OTHER answers- perhaps diet needs to be addressed, too, perhaps it’s then time for an endoscopy to ‘see’ what’s going on in the esophogus, etc…

in your case: you mention ‘swallowing disfunctions’-have you had a swallow study? is a SLP working with you?

anyway- your math looks right but you I don’t know enought to tell you it’s ok to use less liquid- don’t ask me the scientific reasons, lol!

I think on the link to zegerid mixing instructions, I’ve quoted from a link at babycenter and in that quote there are different equivalents to the mylanta cherry supreme. you can order from cvs.com their store brand equivalent, but using a tums is ok, too.

zegerid mixing:

https://www.infantreflux.org/forum/forum_posts.asp?TID=14587&PN=1

here’s cvs brand Antacid Liquid Cherry Supreme:

http://www.cvs.com/CVSApp/catalog/shop_product_detail.jsp?filterBy=&skuId=191659&productId=191659&navAction=jump&navCount=3#Prodtabdetail

Ingredients:

Per Teaspoon (5mL): Calcium Carbonate 400 mg; Magnesium Hydroxide 135 mg

· ¼ tsp. of CC powder = ~750mg of calcium carbonate

· 1 extra strength TUMS or 1 TUMS QuikPac = 1000mg of calcium carbonate

· 1 TUMS Kids Smoothies (contains wheat & dairy) = 750mg of calcium carbonate but often have a better flavor for LOs.

hellbennt2011-11-30 21:23:13

November 30, 2011 at 10:35 pm #69487

Anonymous
Inactive

Laura,

Why would you go to a ped GI first? What is it they will do that you would want done before you’d decide to do it yourself? Is it just to see what they’d prescribe first or is it because they’d do tests to rule out other problems? Or is it to clear the self dosing with them? I can’t imagine any dr. would approve self dosing.

I have been to a ped GI nurse practitioner and she is the one who put him on the 7.5mg per day of prevacid. However, his regular ped had originally put him on 15mg per day and that worked better, but GI nurse is insisting that that is an overdose for a baby his age, which really doesn’t make sense as far as I’ve been able to tell.

We have not had a swollow study. I say they have swollowing disfunctions based on an article I read abt why GERD leads to babies choking and it sounded exactly like what I have to deal with. It is like they forget how to coordinate their breathing with sucking and swollowing and they try to breathe and swollow at the same time…then quit breathing! It is very scary.

Anyway, when he was on the higher dose, it seemed to do him more good. I’ve compromised and I’m giving him 1/3 of a solutab twice a day instead of 1/2 once a day. So, he is getting a little more. Still I think he needs the whole thing. I’m also giving him some zantac in between because I had some of that left from when they had prescribed that for him. Anyway, that combo is doing him much better than the 1/2 solutab a day alone, but still I think we need to do a little more. He is better, but still has episodes where he cries at the breast and presents Sandifer’s symptoms.

December 1, 2011 at 7:56 am #69488

hellbennt
Keymaster

I only say ped gi because this is their specialty- I’d say to give the ped GI a chance- in your case, you did. But I’d like to know from a ped GI if there’s something else going on- like pyloric stenosis or something- just in case- that’s ME.

ME- I’d up the dose all the way to marci-kids! then when sandifer’s goes away you’ll KNOW. then I’d try cutting back little by little. If you can, ok. If you can’t, o.k. then I’d try in a month or two.

Not that I don’t think the dosing is safe! but ME, I like my los on as little meds as possible. for MY son he needed maximum dose of PPI AND max of zantac at times…

I’d ask ped GI about swallowing. I’d TELL I’d want swallow study to make sure baby is aspirating…again, that’s ME…

December 13, 2011 at 9:40 pm #69555

Anonymous
Inactive

I would agree with Laura. We have essentially been “DIY” for the past 9 months. What happened was that I went to see a first pedi GI who was horrible and unsympathetic. It took me weeks to get into another GI. By that time, I had done all my research here and started him on a dose. I basically cleared that with the GI – who was not really happy with it, but begrudgingly said I could dose at that high “but no higher.” Had I not already started doing it, and done the research myself, he would have suggested I’m sure a lower dosage and my son would have continued to be uncomfortable (had I followed his recommendations). Because the GI said it was ok, the pedi went along with it. In the meantime, my son had done a swallow study, he had been examined by two GI’s, I had gotten “clearance” from one – so I felt like I had covered my bases – although my husband, friends, etc. thought I was kind of nutty to just “follow something I found online”.

We are just today switching to prilosec. Did I call the GI? No. Because I just don’t feel like arguing with someone at this point. I plan to put him on the equivalent dose of prilosec/zegerid, so to have to get an appointment, have the conversation, have the follow up – at this point, I feel like I know what he needs and I’m fairly confident there are not other issues going on. As long as he is medicated, he is happy and energetic. If he misses a dose, he is crabby and spitting up everywhere.

Also, I think I lost a little confidence when the GI told me that he needed to be off the ppi’s entirely by 1 year and the pedi told me I needn’t bother to even try to wean him down until he was over a year.

So, I ramble, but I guess *for now* and for the past probably 6 months, I have felt comfortable doing things on my own because I did not adjust the dosage up from what I cleared with the GI, the GI (reluctantly) cleared that dosage, and I have seen no indication that there is any other health issue than reflux. BUT, I do feel it’s important to at least establish yourself with a GI (if your pedi is not going to want to delve into this issue with you – and mine, who I adore, was basically like, if it’s other than zantac, it’s a GI specialist issue), so that if after 1, 2, 3 months there still seem to be unresolved issues of discomfort, etc., you have someone you can talk to to see where to go from there. If we have issues with the prilosec, I’m going to be able to get in with the GI in a relatively short amount of time as an established patient and look for another option – although, then I will have to have the conversation as to why I haven’t gotten him off the medication as he will be a year by then! As if I enjoy having him on medication and having to dose him 3 times a day and mix up the solution every week, and carry the bottles on ice everywhere, etc. etc. etc!

December 15, 2011 at 1:55 pm #69563

hellbennt
Keymaster

Vestamama:

Have you posted your doctor in the Looking for a ped GI thread? If not, please do – you can copy & paste what you’ve written here- it’s helpful

December 18, 2011 at 11:43 pm #69573

Anonymous
Inactive

So, I’ve gotten the Nurse Practitioner at the GI office to up Jude’s Prevacid dose to 3/4 of a tablet a day instead of 1/2. I’m still giving him the whole thing (1/2 in morning and 1/2 in evening) without their premission. And she has now prescribed for me to give him 1.9ml zantac a day too, which I was already doing also. Anyway, it this regimine was helping him quite a bit, but the past week he has seemed to get progressively worse again. I don’t know if he is out growing the dose again or if the zantc is losing it’s effectiveness.

I was wondering about giving him prevacid AND zegrid instead of prevacid and zantac (I’m giving them 4 hours apart). Do prevacid and zegrid work ok together or are the bad together. The prevacid he is on now seems to give him many really loose stools a day. Does zegrid have the same side effect? I certainly don’t want to make that worse, but I’m thinking he needs more meds of some sort and the nurse practitioner won’t perscribe more.

December 19, 2011 at 7:57 am #69575

Anonymous
Inactive

From what i read here, and experienced, zantac loses effectiveness for a lot of kids with severe gerd in 1-2 weeks, so that may be what you exoerienced. I havent heard of mixing zeg w prev, i will let others speak to that, but have you considered going the prilosec/zeg/mcs or calcium carb route that is being heavily discussed as we run out of ccmax, etc? I made the switch this week, dosing per marci, and haven’t yet had problems.

December 19, 2011 at 9:36 am #69576

Anonymous
Inactive

Vestamama, I have thought of doing that, but with my insurance I’m able to get the prevacid solutabs for $1 a month at the dose the GI nurse is prescribing. So, since I’m getting that so cheap and it does help, I’d rather not give it up altogether. That is why I was wondering if I could do the zegrid/prilosec/calcium carb thing inbetween his prevacid dose and if so, how much? I know there is the recommended doses from MARCI kids on here that I have looked at, but would that dose be the same if he’s already on a different PPI?

N-E-Way! Anyone know?

December 21, 2011 at 12:46 pm #69585

hellbennt
Keymaster

limited time here- gotta dash- but I’d stick w/ one med? or calculate for each med & dose accordingly

December 22, 2011 at 8:47 pm #69588

Anonymous
Inactive

What do you mean calculate for each med and dose accordingly? Do you mean give the recommended dose of prevacid and the recommended dose of zegrid? or do you mean have them both equal together the recommended dose for one PPI?

January 6, 2012 at 11:09 am #69661

Anonymous
Inactive

Ok, according to the MARCI kids recommendations, he should be getting between 18.7 and 22.5mg of prevacid a day OR 18.7mg of prilosec. I am currently giving him 15 mg of prevacid and 1.9mg of zantac. What if I continued to give him the 15mg of prevacid and 3 – 4 mg of prilosec/zegrid in the MCS mixture, for a total of 18 to 19 mg of PPI’s total. I realize that prilosec and prevacid of different drugs, but both are PPI’s and have similar dosing recommendations from MARCI kids.

Would this make sense? Or am I doing something potentially stupid here?

Karen

January 6, 2012 at 9:01 pm #69664

hellbennt
Keymaster

hmm..not sure…can you just increase the prevacid? you have 15mg solutabs? so give 1.5 solutabs a day? I do realize that you’d run out of solutabs this way…solutabs are given on an empty stomach, follwed by a ‘meal’ 30 minutes later. since you’re doing this, then you could get otc prevacid capsule and give on an empty stomach- administer the beads from the capsule in a tsp of apple sauce/babyfood apples- then follow w/ a ‘meal’ 30 minutes later

hellbennt2012-01-06 21:05:44
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