I need help……I feel helpless and terrified

[Anonymous]

You could try Dr. Mark Glassman in Norwalk, CT. I didn’t like him (I know so why am I recommending him) but he is very willing to do high doses of PPI, Neocate, etc…. He is very busy so sometimes you see the nurse practicioner but he will give you what you need……

Hang in there!!!

[hellbennt]

Oh My GOD!!!! THIS is why I cannot leave this board!!

Ok look for a family practitioner & also look in the Specialist thread- it’s right at the top of groupie intro https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

also please look into babywearing! there is also a link close to the top from the link above to find more about it

you can also try try emailing lmujicaparodi @ gmail. com/ (without the spaces) and put

‘babywearing/long island/help’ in the subject- tell her that hellbennt from TBW sent ya!

how much does he weigh? we can help you figure out the max amount of zantac for weight

[Anonymous]

Thank you so much. This board is awesome. I would really be out of my mind w/o you. You all are so knowlegable and even though I don’t know any of you, I trust you because your moms just like me trying to do what’s best for your baby. The doctor’s are so frustrating. The dr. today just didn’t want to be bothered and the fact that my son turned blue didn’t affect him at all, he told me to get an apnea monitor. He’s on an apnea monitor but guess what…is the monitor going to save my kid from choking? What’s happens after the monitor goes off? then what? Is the monitor going to preform CPR????I could have 10 monitors it still doesn’t change the fact that he choked and that I need to get this under control. I can never go through that again, nor should my poor little baby. This whole turning blue choking episode is what got him trouble and no one seems to think it’s a big deal. I could go on and on……

He weighs about 8lbs 9oz. The dosage my ped said to use was .04ml every 8 hours

Thank you Thank you

[Anonymous]

i am so incredibly sorry that you are going through this! it is completely horrifying. you are going to find a dr. to help you… please look through laura’s list of ped. gis.
in the meantime, yes– try the mylanta cherry supreme, an increased dose of zantac, babywearing, etc
can you get neocate on ebay?
any chance you can take a trip to Mexico? I’m kidding, but half-serious. I happen to live by the border and just increased the PPI dose on my own and bought the stuff in mexico. I’m not advising this….just sharing
what about prilosec OTC? I think there are posts about this(?) can that be used by an infant? Or does it just come in tablets?
BUT…of course you need doctors that are on your team and that support you and advise you on medications.
Do you have anyone helping you? any family/friends around to give you a break?
xxoo . you are going to make it through this. just keep telling yourself that.

[hellbennt]

ok zantac dose (please don’t just take my word on this!) read here:

Zantac dosing- my/other’s question (has axid & pepcid dose, too): https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

ok for a 8lb 9 oz baby here’s where I got kilos: http://www.sfca.co.uk/match/kilolbs.htm

(you take lbs & divide by 2.2 to get weight in kilos)

3.9 kilos x 10 = 39 mgs

I multiplied by 10 bcse the highest dose of zantac for weight is 10mgs per kilo- see above link

your bottle should say 15mgs/ml

this means for every 1ml of liquid there is 15mgs of zantac

39 divided by 15 = 2.6

this means that your baby can have 2.6mls total, for the day of zantac!!

your current dose is 0.4 x 3 = 1.2mls!!!

you can increase that zantac (& I would! again, I am not a medical professional- please read how I came to this conclusion by reading the info from the link above)

you can divide this dose into 2 doses- try 2

they don’t have to be ‘equal’ – you can give more at night to see if it helps…

1ml + 1.6mls

.5ml + 2.1mls

1.3mls + 1.3mls

[Anonymous]

and b/c we all love to help so much….here is also info on pepcid complete…laura also has an imbedded link on pepcid liquid:

https://www.infantreflux.org/forum/forum_posts.asp?TID=10717

[Anonymous]

I wont dare give you any advice as I’m still floundering a bit myself but I WISH I could just give you a hug:( I KNOW how hard this is and how terribly FRUSTRATING and INFURIATING it is to have doctors that make you feel like you’re nuts(even though you know deep down, you’re not). I went to a childrens hospital on LI, NY and like you, left with my head spinning, it was so outrageous(reflux doesnt cause pain, etc). It’s very scary when you feel like there’s no where else to turn and like you’ve exhausted all possiblities. I was SO afraid to go to yet ANOTHER doctor. It’s all so very overwhelming. After 2 GI specialists and a ped whom I left, I finally found a new ped who was willing to follow Marci-kids info. And she still supports it to this day, despite being challenged every time we turn around(by GI spec!!). I hope you will find someone like that…you’re in my thoughts. I know it’s so very difficuly but try to hang in there…

[hellbennt]

OT (Off Topic): kate525 if you haven’t already posted in the

Looking for a GI thread, would you please? https://www.infantreflux.org/forum/forum_posts.asp?TID=660

Feel free to post the good, the bad, etc. The drs who did NOT help and then the dr who IS helping! Thank you so much!

Kate525 wrote: I went to a childrens hospital on LI, NY and like you, left with my head spinning, it was so outrageous(reflux doesnt cause pain, etc). It’s very scary when you feel like there’s no where else to turn and like you’ve exhausted all possiblities. I was SO afraid to go to yet ANOTHER doctor. It’s all so very overwhelming. After 2 GI specialists and a ped whom I left, I finally found a new ped who was willing to follow Marci-kids info. And she still supports it to this day, despite being challenged every time we turn around(by GI spec!!). I hope you will find someone like that…you’re in my thoughts. I know it’s so very difficuly but try to hang in there…

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