Infantreflux.org | what would you do?

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October 4, 2006 at 10:27 pm #14970

Anonymous
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Okay here I go again. Trying to figure things out. I know I shold probably wait until the eeg to figure all this out, but I just can’t. I mean I’m up all night anyway so why not try to figure it out.

Okay so here goes. I taped Justice sleeping today. He looks like he is waking in pain. I know you all told me it was probably reflux, but it seemed under control during the day well except for naps. The problem is his sleeping. So, here is the question. Would you go ahead and increase the meds for a couple days to see if it all gets better? He is on 5 ml 3 x a day right now. I asked Dr. Phillips about it and he said to give 5 more ml. I think that basically means 7 ml 2x a day and 6 ml once a day. What would you do? Would you try it just to see what happens? Also how long do you think it would take to see a difference? I think it’s just a couple of days right? Another question is how do you find out how much mylanta to give?

If reflux has been the problem all this time I am going to be so happy and so mad at myself. Not getting my hopes up yet, but it is always possible the night wakings are reflux and the tremours are sandifers. PLEASE anyone. What do you think?

October 4, 2006 at 10:39 pm #14973

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OH MY GOSH!!!!!!!!!!!!!! I just found one of my old posts about Justice before his reflux was under control. He was doing exactly what he is doing now. OH MY GOSH!!!!!!!!!!! I don’t even remeber that. OH MY GOSH!!!!!!!!!!!! Okay getting it under control now. Not getting my hopes up, but getting my hopes up. I am totally going to increase his meds and see what happens. Please keep fingers crossed for me.

October 4, 2006 at 10:50 pm #14976

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how many mg would he be on?

October 5, 2006 at 8:04 am #14987

Anonymous
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14 mg 3 x a day. It says it would be 42 mg. I’m a little confused at the mixing instructions though. I’m going to have to e-mail Dr. Phillips about it. I was giving 5 ml 3x a day not sure how many mg that is, but I will be giving 7 ml.

I gave Justice 6 ml last night. Also when he woke up I gave him mylanta. He actually slept pretty well last night. YEAH!!!!!!!!!!

October 5, 2006 at 8:26 am #14989

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I would be a little hesitant to change the meds with out your drs approval, but you should do what you think is best. As for the Mylanta I think it would be best to give it more often. I am not sure a larger amount at one time would make a difference, but maybe try giving it to him every time he wakes up and right before he eats a night. That way if it helps you will be pretty sure it is the reflux and can talk to the ped or GI about it. I always gave Sebastian about 1 mil or 1/4 teaspoon at a time.

I hope it is the reflux and not a more serious issue and that you are able to get him back on track. The two of you both need a good nights sleep. Good luck and keep us posted.

October 5, 2006 at 9:30 am #14991

Anonymous
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Shelby,

I already gave you my opinion on things so I won’t bombard you with it again. But my gut really says that it’s reflux and Sandifer’s, but I’m a firm believer in testing to find out for sure, since these things can be hard to distinguish. You can do some research on infantile spasms, and you’ll probably see that he doesn’t fit the symptoms.

I understand desperation, and I also once tried upping the meds, so I’m not one to talk. But my new approach on things, is that if you can, ask Dr. Phillips to contact your doctor about his dose. I really do think it’s best if you can do it openly.

Even if the sleep doesn’t consistently improve with higher meds, that doesn’t mean that it’s seizures. Even if the pain is controlled, night wakings can persist because they’re used to waking up. Also, just the act of refluxing itself can disturb their sleep even if it’s not causing pain, and if they’re not used to going back to sleep on their own, then they’ll wake you up to help them. Also, it could be other digestive issues related to allergies and intolerances.

In any case, I do think that trying him out on a higher dose (hopefully with your doc behind you) is probably the best bed. Mylanta is also a good idea.

Good luck. Hang in there.

October 5, 2006 at 9:56 am #14995

Anonymous
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I hope that’s the answer! I’d check with Dr. Phillips and Justice’s doctor first. Good luck and keep us posted.

October 5, 2006 at 6:12 pm #15031

Anonymous
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Dosing question. Now I’m confused. I went to the dosing cal. to figure out for sure how much Justice should be getting. The cal says that I should be adding 16.5 ml water with each pckt of medicine. The directions I had from before were to add 6.5 ml of water to one pckt of medicne. I tryed to e-mail Dr. Phillips the question, but haven’t heard back from him. Does anyone know what I’m supposed to do. I am assuming that it should just be the regular 6.5 ml since I am increasing it 2 ml. Of course, you know what they say about assuming.

October 5, 2006 at 6:25 pm #15032

Anonymous
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i mix 6.5 ml of water with a 40 mg pack. (this makes 4mg/ML)

i give 3.5 ml of this 3 times a day and that is 42 mg.

that was dr phillips instructions.

he told me not to do the way the site describes it.

nataliachick72006-10-5 18:27:8

October 6, 2006 at 3:36 pm #15075

Anonymous
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I wonder why we’re not supposed to do it the way the site says. I only increase his dose 1 ml instead of 2 so now he is on 6 ml instead of the 5 ml he was on. He has slept so well the past 2 nights and is actually taking naps. Let me tell you being tired can really mess you up. I truely didn’t think it was the reflux because he is so happy during the day. Still not sure about the tremours, but also haven’t seen one of those in the last two days either. It doesn’t sound like classic sandifers, but who knows. I am still going to post the video of Justice and have you guys look at it and see what you think.

Thanks to you all. Now that I am getting sleep maybe I can be on here helping others.

October 6, 2006 at 4:27 pm #15085

Anonymous
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Justice’smom wrote:

I wonder why we’re not supposed to do it the way the site says. I only increase his dose 1 ml instead of 2 so now he is on 6 ml instead of the 5 ml he was on. He has slept so well the past 2 nights and is actually taking naps. Let me tell you being tired can really mess you up. I truely didn’t think it was the reflux because he is so happy during the day. Still not sure about the tremours, but also haven’t seen one of those in the last two days either. It doesn’t sound like classic sandifers, but who knows. I am still going to post the video of Justice and have you guys look at it and see what you think.

Thanks to you all. Now that I am getting sleep maybe I can be on here helping others.

i believe its because if you were to do it that way you would make a 2mg/ML concentration and you would need more ML to make your total mg dose, and thats more medicine the baby needs to get down which can be diffilcult.
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