Hospitalization AFTER endoscopy

[Anonymous]

Tracy – I’m glad to ehar he’s eating – but sorry to hear the reflux
seems to be aggravated. I hope the compounded Prilosec seems to kick in
soon and if are concerned will Dr. Moon prescribe Zegerid instead –
which is the same medicine but more stable?

Thais – I’m also sorry that Matthew’s eating is down again. I know how
hard it’s been for you guys and hope you had a nice weekend anyway with
Dave.

Even Marisa’s reflux has been acting up lately – hard to tell if it’s
just being triggered by bad teething or new solids or both. But it’s
nothing at all compared to what you ladies and your poor boys have been
through.

Hope everyone feels better soon.

Tracy – any decision on the SAHM issue?

[Anonymous]

Thanks everyone. Definitely will ask about Zegerid (planned to) but waiting a couple of days before I start questioning her again. He’s crying non stop today and woke up a ton last night (NEVER does that). Thought about asking for 2 week doses-and we did ask for no flavor but it does have a slight cherry smell and the pharmacy said that’s the least flavored one they have. It may take a couple of weeks to kick in, right?

This is so incredibly frustrating. I NEVER saw him refluxing on Prevacid and I truly believe it was the viruses he kept getting that aggravated it (not to mention 2 month teething hell). I think he was great on it otherwise. Wouldn’t prilosec do the same thing?? Wouldn’t he still have it aggravated if he caught a virus?

THAT BEING SAID-He is EATING!!! Granted, TONS of breaks and whines, but he does take it in. Although-I do suspect that’s because his virus is better. HUMPH!

[Anonymous]

Tracy

So glad ian is better. I am glad that they know that there is something that may be causing his refusal to eat, because it seems that there is a med for it and he soon will be OK!!!

We used Cherry´s. At the very beginning, we started with the prilosec compound. We had something at 4mg/ml and in a calcium carbonate solution.

I remember exchanging emails with Joel about the 4mg concentration and him telling me that it was no good BUT since then, you will see in his guidelines that 4mg/ml is actually OK! So don´t worry if that is the concentration…

I don´t know if yours is calcium carbonate OR sodium bicarbonate… i used to think that the calcium was no good but remember doing a lot of research and finding out that some people questioned the sodium bicarbonate too… and i know that the guys at Cherrys are really really good and tehy really believe that the calcium is good. You just have to give it 30min before etc etc whether as if it is done with sodium bicarbonate i think it is essentially like zegerid so can be given at any time. in any case, if you have the calcium and are not happy they will switch to the sodium one because i asked them a while back.

On the tube — i am telling you so that you know, but i am praying Ian will be OK. The NG tube is permanently there (or is supposed to… because matthew takes it out all of the time). It is thin, so should not bother him too much (he is pretty happy all of the time, with or without it). We try to feed him orally, and whatever he does not take, we feed through the tube. Because it is so thin, you can only really get formula through it, so no solids at all… i have even tried some watered down yogurt, but does not go through.

No, he does not get fussy… only issue is sometimes at night, because we are on continous feeds, if he is very fussy, he may throw up some because it is so thin (ie only formula in there) and he will not sleep at an angle anymore!!

[Anonymous]

I hope the compound works well for you. Our pharmacy also swore up and down that it was okay for a month. They also said it was unflavoured, but then I found out they used sweet syrup and stevia powder. When I contacted Dr. Phillips, he said that his research showed that with flavouring, it would cause the drug to degrade in less than a week. Not to stress you out more. I really hope that yours is being prepared properly and that Ian gets some relief soon. Maybe when you ask your GI she’ll agree to try Zegerid.

[Anonymous]

Hey Tracy – just emailed you. Marisa is sending Ian big hugs and raspberries right now.

[Anonymous]

Don’t know if it helps or not but our Columbus Children’s Hospital Pharmacy told us that our compounded medications were only stable for 14 or 15 days after they are mixed as did the Central Ohio Compounding Pharmacy which only fills compounds. Hope this helps!

[Anonymous]

I have been using a compound for a long time now and get it filled once a month. We have never had a problem and it never has lost its effectiveness. Our experience was that it did take 2 weeks to kick in after switching from prevacid. I hope that this really works for you!

[Anonymous]

Tracey, I have posted info on Laryngomalacia and Tracheomalacia under the “respitory” topic on this forum. This may be part of the reason that he is sick so often. Kids/babies with ‘malacias’ can’t cough up mucus beacuse their airways are soft and underdeleloped (normal airways are hard and rigid and vibrate when you cough to dislodge mucus). The malacias stiffen up on their own by the time the child is two (most of the time). Also, laryngomalacia can actually CAUSE reflux by restricting the airways, so the lungs don’t deflate completely. The malacias also produce a very distinctive “bronchitis/croup-type” cough even when they only have a little cold. People look in terror when they heard my son cough when I would be at the grocery store with him at 6 months old. The malacias are MUCH better now with my son – he barely has any signs of it at all anymore.

Another thing I wanted to say was that PH levels seem to be pretty important in these kids. If the PH level is too high one way or the other (7 is nutural=water, 0 will burn and 14 will burn) it will kill all the good bacteria that protects your immune system (having anti-biotics will just add to this making it much worse). My son is almost three and he’s been drinking ACIDOPHILUS (PRO-biotic) milk since he was 1.5 yrs old and I think it helps his reflux as well as helping his digestive system/immunity levels.

Lactic acid-producing microorganisms, such as L. acidophilus, have been called a “second immune system” because they put the brakes on growth of disease-causing bacteria, such as salmonella and shigella-caused dysentery, various types of diarrhea, and even virus-caused flu. Yogurt with acidophilus culture and acidophilus on its own has been shown to clear up yeast infections and vaginitis in children and adults. However, L. acidophilus is not present in all brands of yogurt (check the labels).

http://www.healthscout.com/ency/68/7/main.html#QuestionsToAs kYourDoctorAboutAcidophilus

lansima2006-3-13 11:52:35

[Anonymous]

I would not go with a calcium carbonate buffer, as it does not buffer nearly as well as sodium bicarbonate. As far as the concentration goes, 4mg/mL is fine as long as you are giving a minimum of 3.5 mL per dose and the compound contains 16.8% sodium bicarbonate. Zegerid would definitely be a much better option. Now that it is available, pharmacies aren’t even supposed to make their own omeprazole suspensions.

[Anonymous]

Tracy

If you are unsure about it, the guys at Cherrys (there are 2 of them but cannot remember their names, but if you tell me i can tell you which one, as i have spoken to them both..), will switch from calcium to sodium (although i have tasted both and the sodium is disgusting!!) but then you could mix it with food.

Also, i have spoken to them extensively about Zegerid and they even ordered some for me at the pharmacy because i told them i was going to ask for it at the doctor´s… but then my doctor said to try prevacid instead (we were using prilosec)… but those guys are SO helpful.

Seriously… i was there everyday for about 2 weeks and they were just amazing… if you have any doubt, they are just SO helpful.

[Anonymous]

Thanks Thais-I’m not really worried right now. I’ll have to stop by and talk with them but I agree that I think they know what they’re doing. My doctor’s patients have all had success. But the waiting for it to kick in is killing me.

Ian’s doing really horribly. Up all night last night crying in pain-actually more of a whimper. Won’t eat much this morning, wants to, but keeps turning away after a few sucks. Also, he had some weird outbursts of screaming and grunting yesterday-never does that.

We are on ANOTHER med-amoxocillin for the ear infection (ped thought it got a little worse). Do you think it’s all the meds and antibiotics causing belly pain? But he was waking during the night before the amoxocillin… Prilosec maybe hasn’t kicked in? SO confusing!

We’re bummed-when I brought my baby for the endoscopy, he wasn’t eating, but he was the happiest baby ever-slept well and really showed no pain. Just that he couldn’t handle eating comfortably (not even real reflux symptoms). But now, he’s crying, not sleeping, screaming, way congested (particularily after eating) and showing CLASSIC reflux symptoms and he still doesn’t want to eat. He’s so miserable. Thoughts??

Hate this! Feel like we made him worse. I can’t help but wonder if I just pulled him out of daycare and kept him healthy that he would start eating again. Still pretty sure the ulcers in esophogus were from viruses and croup aggravate reflux. Sigh.

Tracy (Ian’s mom 9-26-05)

[Anonymous]

I am sorry to hear that he is in so much pain. It is so tough to see them suffer, isn´t it? Are you giving him something like Mylanta in the meantime? Also, don´t know if it was you who was giving Carafate?? That should really help in the meantime i think.

Don´t know why the antibiotic would be producing any of those symptoms. We have had matthew on 2 courses of the same one and never noticed anything like that. Maybe the antibiotic has not yet kicked in and the ear infection is bothering him?? Also, you are not giving Augmentin, are you? I think Augmentin is Amoxixillin but cannot remember. If so, then it can produce diarrhea (the component that is not the antibiotic itself) adn then you just have to switch to reg antibiotic on its own.

I hope he feels better soon.

[Anonymous]

We have had belly problems on amoxocillan. He always gets really gassy and uncomfortable and cries alot. My ped said the only thing that will help is mylicon but i think we all know that rarely does that work!

I hope that ppi kicks in soon! Maybe you could get someone to watch him so you can go out? That temporarily help me out!

[Anonymous]

Tracy, I’m so sorry to hear that Ian is not feeling any better. Hopefully once the PPI kicks in he’ll be more comfortable. Hailey always does the whimpering at night when her reflux is really bothering her. It’s very sad to listen to them suffer. As for “making him worse”, you certainly didn’t do that, and shouldn’t blame yourself. Sending HUGS.

[Anonymous]

I also emailed you Tracy – can you use Pepcid or Zantac while you wait
for the Prilosec to kick in? Pepcid would be better since it tastes
better and is more concentrated (so you need to use less) but Cherry’s
should also be able to compound the Zantac without the alcohol for you
so it doesn’t further irritate Ian’s esophagus.

You totally did not make him worse. You needed to get to the bottom of
this and it’s a good thing you found out about the ulcers, etc.
Hopefully once the Prilosec kicks in and the ulcers heal Ian will feel
100% again.

What happened with his GG levels?

More hugs and kisses from Marisa and I…

[Author]

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