Infantreflux.org | Novo-Ranitidine (Zantac) and Domperidone

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October 8, 2008 at 6:23 pm #57533

Anonymous
Inactive

Has anyone every used this combination? I think I’ve heard that Domperidone isn’t available in the US but is in Canada…

We’ve just been prescribed 1m of the Novo-R and 4ml of the Dom x2 per day and I’m a little concerned as she’s already on Phenobarb for seizure but at least we’re working on weaning her off of that.

She’s on alot of meds and I can’t help but wonder if the Pheno is making her GERD symptoms worse

October 8, 2008 at 8:54 pm #57537

Anonymous
Inactive

I don’t know much in this area, but if I were you I would pm Sheri (MFPIX2) she is a pharmacist and in Canada so she will be a great resource for you with the meds for your little girl. She may see this, but she has been busy lately so I don’t know how often she is getting on lately. HTH.

October 9, 2008 at 4:11 pm #57565

Anonymous
Inactive

We tried zantac, then did losec, then losec 2x/day + domperidone 4x/day, then prevacid. In the end, a GOOD dose of prevacid worked for my daughter. My understanding is that it’s typically best practice to move up to a PPI before adding a motility drug. You might want to ask your GI about that. About the phenobarb, I’d speak to your child’s neurologist if your concerned. From what I’ve read, I haven’t come across GERD as side effects for any of the seizure meds, even in my travels in the epilepsy boards. You might want to ask there though. I like epilepsyfoundation.org . The parents there would be willing to help you. Good luck.

October 9, 2008 at 5:50 pm #57566

Anonymous
Inactive

s&h’s mum wrote: My understanding is that it’s typically best practice to move up to a PPI before adding a motility drug. You might want to ask your GI about that.

That’s my understanding as well. We’re still waiting to see the GI, the meds were prescribed by our pediatrician.

I’ve started her on the Zantac and have chosen to hold off on the dom until we hear back from our neurologist about a GI referral.

The H2 seems to be helping a bit, she’s no longer writhing in pain as much but she still does not sleep very long.

October 9, 2008 at 7:28 pm #57568

hellbennt
Keymaster

I’m sure you’ve had this checked, but I can’t help but ask,

any chance the seizure are from Sandifer’s Syndrome?

from: https://www.infantreflux.org/Forum/forum_posts.asp?TID=627&PN=1

sandifer threads:https://www.infantreflux.org/Forum/forum_posts.asp?TID=195&KW=sandifer

https://www.infantreflux.org/Forum/forum_posts.asp?TID=417&KW=sandifer

it’s symptoms like back arching, stiffening a leg, twisting the head in one direction, & can also include seizure type episodes…

i always use the symptoms as a barometer- as we got the meds figured out, the symptoms pretty much disappeared…

~laura

tic dance search results: https://www.infantreflux.org/forum/search.asp?KW=tic+dance+trance&SM=1&SI=PT&FM=0&OB=2

October 9, 2008 at 8:06 pm #57569

Anonymous
Inactive

Yeah I’ve considered that. I’ve never seen a seizure but our Ped (incidentally the on call ped at L&D) Witnessed what she called a quite intense seizure 12 hours after birth.

My daughter was maxed out on meds to try and stop the seizure and we were helilifted to children’s hospital and in NICU for two weeks. She was comatose from the meds (3x Pheno and 1X Dylantin) for 4 days.

She was clear of seizures for the two weeks were were in NICU but they want to keep her on the Pheno just in case for the next month after which we have an EEG scheduled and we’ll see where we go from there.

She had three MRI’s (we enrolled her in a medical study as it gave us access to some of the best Neurologists in the province) and they did find she has had damage to her brain due to an apoxic event that occurred during L&D. We still have not found out what caused the lack of oxygen.

So yeah I’ve considered Sandifers and will discuss this with her neurologist however seizures are common where there has been brain trauma so taking her off the pheno before the next EEG is a bit of a difficult call.

Jsquared2008-10-09 20:10:56

October 9, 2008 at 9:43 pm #57570

Anonymous
Inactive

I answered the other post, but also have to tell you we were warned that a side effect of the lack of O2 episode with C was siezures. Some start them right away, some start at 2 and three years old and some never start, but seizures are very common with the lack of oxygen episodes….

Can not believe how much you have been through, Jennifer!!!!

October 10, 2008 at 7:55 am #57578

hellbennt
Keymaster

poor baby!

I agree w/ Ann Marie: you (all!) have been through so much!

Here’s to finding some answers (holding my imaginary cup up in hte air…)

October 10, 2008 at 12:30 pm #57584

Anonymous
Inactive

I’m sorry to hear about all that you’ve been through with your daughter. Are you guys in TO?

Hopefully your daughter’s EEG gives you some answers. If she has damage shown on the MRI, then hopefully the EEG will clear things up further. But I agree… wouldn’t try off the meds until you speak to your neuro after the EEG.

My older daughter has tonic clonic seizures that were predominantly febrile until she had one without cause in April of last year. My younger daughter has had BAD Sandifer’s when her reflux was at it’s worst. They didn’t look at all alike. Though I have heard of some docs mistaking Sandifer’s for seizures, usually myoclonic, I believe.

I hope that all goes well for your daughter.

October 10, 2008 at 12:43 pm #57585

Anonymous
Inactive

We’re out west in BC.

The other kicker is that when we left BCCH neurology told us we could start weaning Janna off the Pheno at the discretion of our ped. Our ped is reluctant to do, she’s the one who observed the seizure in the hospital nursery 12 hrs after birth and maxed Janna out on Seizure meds.

October 11, 2008 at 9:02 am #57593

Anonymous
Inactive

You need to get a good neuro and have the ped and the neuro consult together. Did you dd come out of her seizure on her own, or was it a status seizure (i.e. needing meds to get it to stop)? What type of seizure was it. I’m a big believer in second opinions. We just got a second neuro opinion for my daughter, just to be sure, even though I’m happy with our current neuro. I’d highly recommend the book “seizures and epilepsy in childhood” or something like that- by Freeman. It’s the best seizure resource I’ve ever come across. It answers a lot of questions about meds. If you haven’t already, I would ask about the side effects of phenobarbitol at high doses as there are typically various different seizure meds to choose from, we’ve been told. It’s a hard decision to make which is why you need a good neuro on your side. HUGS.

October 11, 2008 at 11:38 am #57594

Anonymous
Inactive

We actually had our pick of a team of Neurologists. In the end we choose the Neuro who is doing the MRI research study on Infants and Brain trauma. So we’re incredibly lucky there.

Reportedly, the seizure needed meds to stop – however I’m wondering if the eye rolling and cycling that was observed was Sandifers and not Seizure as the amount of meds to stop the activity put her into a drug induced 4 day coma. 3X the regular Pheno dose and a dose of Dylantin on a 12 hour old if I remember correctly.

I’ve asked the Neuro to refer a GI – he works out of a clinic at our children’s hospital so he has a host of colleages at his disposal. I’m hoping to hear from him next week.

She hasn’t seized since that first and only reported seizure.

October 12, 2008 at 8:52 am #57617

Anonymous
Inactive

What is cycling? Is her pain/reflux well controlled now? If not- If the event the ped saw was Sandifer’s, you’d likely still be seeing the same behaviour that the ped saw, I’d guess. If her reflux was bad enough to cause Sandifer’s, then she’d probably not see relief unless she was on a good dose of PPI or the pain was well controlled. The seizure meds would not control Sandifer’s but would control seizures, so the fact that you haven’t seen any more could be due to the meds itself. Also, the fact that they saw an area of damage on the MRI makes the likelihood of seizures higher from what I’ve been told.

Does your current neuro have his own opinion about med weaning? If he hasn’t expressed it yet, then I’d try to corner him on one and would probably go with that if you trust his opinion. Or I’d get another opinion (but as I said, I find the more opinions to be the better.)

All that being said, I have come across some people in cyberspace who have had their kiddos misdiagnosed with seizures when it was Sandifer’s. Maybe you can do a search and see what you come across? If you think that’s the case then can you talk to the neuro about what he thinks again? Also, see if you can get wait listed for the GI on the cancellation list to get in faster.

I’m so sorry for all you’re going through. Keep us posted.

s&h’s mum2008-10-12 08:55:10

October 12, 2008 at 8:57 am #57618

Anonymous
Inactive

Just one more thing, can you ask your neuro what “type” of seizure he thought your dd had? That information might help you better figure out if it was Sandifer’s or seizures. My refluxer had eye rolling and trunk extension with her Sandifer’s. She had an EEG to rule out myoclonic seizures. It was normal and then they said maybe Sandifer’s.

October 12, 2008 at 12:19 pm #57621

Anonymous
Inactive

Cycling is moving arms and or legs in a cycling motion – this and eye rolling was the observation made by the ped that diagnosed seizure.

No her pain is not well managed. I think the edge is off but she’s still not comfortable throughout the day unless she’s sleeping – but she is sleeping better. I think that’s due to both the Zantac and the 30 deg sleeping position.

The Neurology team are the ones that said keep her on the pheno for one month at home then start weaning.

The ped that saw the seizure isn’t so sure that’s the best idea and she prefers to keep her on but we’ve compromised at keeping her dose the same and as she gains weight (which has been a slow process – 10 weeks old and still not 9lbs.) she should gradually come off. Their is a concern about withdrawl as her original doses (again by our ped – she does double duty as hospital nursery ped in L&D) were incredibly high and she’s pretty much been on the medication since birth.

She definately has Sandifers. I’m sure if it. The arching and the head turning and clamping down on the nipple initially when it gets into her mouth.

I was told at the NICU to watch for two things with seizure.
1. Stiff limbs – muscle tone – I wouldn’t be able to bend her leg or coax her to bend.
2. sleepiness after an eppisode.

I’ve seen lots of arching, head turning, mouth clamping and a bit of eye rolling but none of the two items above have ever occurred.

Her head turning is quite pronounced. She’ll be feeding and all of a sudden turn her head right into me and stay that way for half a second to a few seconds and then slowly turn back.

She sometimes does this when not feeding as well it will happen after alot of arching and groaning and spit-up/gas and silent reflux and it sometimes seems like she’s overwhelmed and needs a break when she turns into me. She completely relaxes for that second to half a second.

But her tone is good when she’s not straining and she doesn’t fall suddenly into a deep sleep. She rarely slept deeply from 6 weeks on until we started the H2.
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