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May 15, 2009
mommy2k
Jeddsmommy-Jessica
I just wanted to ask you since Jedd was on eryth. so long do you remember how long it took before the medicine evened itself out in his system? I finally called the gi yesterday because Kody kept almost throwing up finally and he was so miserable on that dose. The gi switched it to .5ml 3 x's a day. He also said that it could take up to 2 weeks for this to work itself out in his system. I didn't know what that meant. If it meant that we wouldn't notice a big improvement for 2 weeks or if he would be just miserable on for that long. The gi is excited because he said that the med is probably working great for him we just now have to find the right dosing for him. We're giving this new dose a couple days to see how it goes. He's less uncomfortable with the lesser dose. He seems to be like hyper on it though like he can't go to sleep or just won't. Do you think that's a side effect of it? Any experiences with that? Sorry so many questions. You sound so knowledgeable about all of this stuff and not very many people are using this. Thanks for any info!!
May 16, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I know alot of kiddos who use it for years even. It's pretty safe. the only concern with long term use would be that prolonged use of an ABX can and will kill off ALL the good and bad bacteria in the GI tract. You can balance that out with a good probiotic.

I wouldn't worry about adding in a probiotic yet though. Jedd never took one while he was on EES (e-mycin) and had no issues.

I would say just a couple of days to up to a week to see lessening of GI issues with the EES on a lower dose. Some meds stay in longer. We did Reglan for 16weeks with Jedd and it took a while for us to see him get back to himself. About 2 months or so. He was on a really high dose though and Reglan is a whole different ball game than EES is.

Jedd didn't get hyper on it BUT he was on the OLD formula of EES. The makers/manufacturers of EES are producing it differently now then when he was taking it.

They used to make it in a liquid form. Now that is discontinued and it only comes in pill form.

Yes, your bottle is probably liquid but that's because the pharmacies are crushing and suspending the pills for use for children. As far as I've heard, it's still as effective.

Not sure why the co. decided to stop making the liquid form, but they did. It's a very OLD medicine. Been used for a long long time. At least kids can still get it because motility meds are few and far between here in the states.

So, the hyperness could be due to the new way it has to be suspended or the coloring/flavoring it in. KWIM?

For us personally, I really wish we had been able to stay on Reglan. It was WAY more effective at moving Jedd's food along through his system. Since he has the G tube I can measure his belly contents and he did soooo much better on Reglan.

Yes, it's a scary drug but we used it with success. Everyone has to make their own decision on what motility med to use.

Let me know if you have any other questions. :-)

May 16, 2009
mommato3
I hope you don't mind me jumping in, but my son was put on eryth about a month ago. He is 5 months old-16.8 lbs and took .75ml 3 times a day. My GI said that when given for motility it is such a small dose I shouldn't see any side effects other than better motility but for us I didn't even see that so we went back to RReglan which also works for us. It is a scary drug but we feel right now the benefits outweigh the risks. We know my son has DGE as it showed up on his emptying scan and these things are unreliable but it still showed some delay. It is unfortunate we don't have any more options than we do here in the US for motility drugs. I have heard though of eryth. working great on many kids. i haven't heard of the hyper thing but I guess it could. My son's bottle says EryPed on it. I think this is the new drug that replaced EES. Same thing pretty much though I hear.
May 16, 2009
mommy2k
My son is 5 months old too-15.8 lbs. I wish that we had more options as well with the motility drugs. I'm not sure what to think about this working for him. He seems to be coughing and choking a little more today on this lower dose. It still gives him tummy aches too. Hopefully that will work itself out in the next few days. He's not as irritable on it though but now I wish it would work a little better. We've had some scary choking and coughing today. I'm sorry that it didn't work for your son. We haven't had any stomach emptyiing tests yet. Just from Kody's symptoms the doctor wanted to try this to see if it would help. But he went from being so happy to becoming fussy again. Frustrating trying things that seem to make something a little worse before it gets better.
Check with your
doctor first!