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Apr 18, 2009
mommato3
Tamaraann1978 update
I moved this to a new post. I thought some other mommies might want to hear the update and not see it on the old post.
Apr 18, 2009
mommato3
It's been interesting....he's started really doing well on just the Axid. Then they wanted to put him back on the Prilosec (not sure if i mentioned that before, but it's been back & forth on that...take him off, put him on, take him off, etc)....anyway, he did so badly w/ Prilosec last week I begged them to take him off it for good. Have become close w/ nurse there & she didn't think pedi was being aggressive enough either SO she's pushed for the neuro appt. Had that Thurs. EEG was NORMAL. Neuro guy said it sounds like Sandifers, which is what I asked Pedi if it could be TWO MONTHS ago! Am P*SSED b/c he said it absolutely could not be-i realize people make mistakes, but I wish he'd ordered these tests back then. He's known what's been going on & seen the tapes, etc. SO neuro said nothing to be done for Sandifers. Nurse then pushed for GI...pedi called one who wanted to do all these tests but she knows our $$ situation so pushed for a 2nd opinion from one a lot of her mommies love....HE said to start on Regalid (?) & see how Hunter does for a week. If no improvement, move on to GI test (b/c if he does have sandifers, they'd start him on this med anyway)....started last night & i think it's working! No big episodes last night...yay. Sleep. :) For both of us. :) BUT...am switching pediatricians next wk. THere's 3 others in the practice who nurse said are AMAZING. Pedi FINALLY got on the ball this week & started pushing for tests, but I've felt for awhile he wasn't aggressive enough & I was pushing for tests & asking if it was certain things & he just didn't want to go there. But I think we're on our way to improvement.
Apr 18, 2009
mommato3
Oh! I forgot....the pedi REALLY made me mad b/c he has NEVER ONCE changed Hunter's dosages OR changed his medication. He was on prilosec for like 2 wks & when i said it wasn't working..."i still think it's just reflux & give it more time"....then, staying on same doseage, add axid. No improvement....just give it more time. Prilosec isn't working...stay on axid but let's add Zegarid, which I was told is basically Prilosec! WTH!?!?! But now he's off prilosec which has also really helped. I really think the prilosec was triggering something 'cause he went downhill right away when we put him back on it after just the axid. But no more prilosec. :)
Apr 18, 2009
mommato3
I'm glad action was taken by your pedi. I know seeing the neuro. was a relief to you! If you need to have some GI tests, they can be very useful. Did you mean Reglan as the new med?
Apr 18, 2009
mommato3
Tamaraann-Also, I have some alimentum ready to feed and powder-about 1 month supply if not more. My son needs elecare now. I know we suggested trying it to see if it helps and we talked about the$$. Well I don't know where you live or how much it would cost to send it to you but if you want to try this formula I would be happy to give you what I have. If it doesn't help then you would know-You will need to try it for at lest 2-4weeks to make sure. If it does help, you will have a month's worth and it will be worth its weight in gold if it makes a big difference. Just let me know. If you don't want it, then it is up for grabs to any other mommies who need it!
Apr 18, 2009
tamaraann1978
update
totally fine you moved it to a new post...thanks. yeah, i think it is reglan. it doesn't say that on the bottle, but that sounds familiar. and the GI guy said that a lot of times it wont show anything on the tests except if he has a twisted intestine?!?!? I didn't even know that existed...but am not sure why everyone is talking about a GI but then the GI guy says it prob wouldn't show anything...am soooo confused.
Apr 18, 2009
mommato3
Your GI is right. The upper GI will just rule out structual abnormalities. Some kids don't even reflux on it. A probe is useful though to show how much they reflux and how acidic it is. A scope is also useful to show damage, inflammation, structural issues, etc. The new med-does it say meto.. something? That is generic for Reg;an. My son takes that as well.
Apr 18, 2009
tamaraann1978
yes, it says metro-something very long :)
Check with your
doctor first!