Boston area GI specialist reccs?

[Anonymous]

I am in need of some advice/help finding a specialist for a second opinion. I apologize for this being so long.

I have posted here before. My daughter is almost 6 months and is on EleCare and 7.5 prevacid 2 times/day. Initially we saw some improvement– the first 3 weeks on prevacid.

Over the weekend the prevacid seems to have stopped working. All of the old symptoms are back and now we have added in waking up 5-6 times/night.

I called the specialist from Childrens in Boston yesterday and got a call back today. The nurse told me that Leah is on the ‘maximal dose’ of prevacid for her age/weight. I mentioned MARCI and was met with ‘that is very controversial’.

Her response was 1. given that Leah is on such a ‘high dose’ of prevacid, it is likely that there is something else wrong.
2. She suggested that I take her to the pediatrician to see if she has an ear infection.
3. She said that since Leah is not losing weight– this is not serious. This is when I lost it and started to cry which did not help my case. I asked why we had to get to complete failure before she could get any help. I work so hard to make sure Leah eats. It is a full time job. I have another full time job that I have to go back to in September.
4. Mylicon drops. I was speechless.

I am actually taking Leah in tomorrow to see the specialist but I do not have high hopes. I am feeling really frustrated and would like to take her for a second opinoin.

I have looked through the archives and seen some boston reccs but they are dated. Does anyone have any suggestions for a doc who is amenable to the MARCI guidelines? I want to research the next doc before I go and waste our time.

Thanks for letting me vent. Sorry this is so long- I just needed to get out my frustration. Any help would be appreciated.

[hellbennt]

ugh! ok I would just contact marci-kids themselves

Office Phone: (573) 884-0672

and see who they ‘work’ with in your area!

another tactic is to find a family doctor who is sympathetic to your poor baby!

that office is #*($^Q(#%^ bcse ear infections & congestion are CAUSED by the reflux, duh!!! not mad at you.

if you are not happy with your ped Gi after this next visit, please please post here to help anyone else who might later on down the road come across this site!:

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

[Anonymous]

This morning was a disaster culminating with the doctor suggesting that I might be having personal problems and her referring the social worker. Ughh I was so mad.

I did contact MARCI and no word on a ped GI. There was one recommended to me but he has no new patient openings until September. I am am not interested in randomly picking a new doc so ANY suggestions would be helpful.

We are back for Leah’s well baby next week so hopefully we can talk to the pediatircian again.

What an awful day.

[hellbennt]

I would fax the one that was recommended to you requesting an earlier appt; request to please be contacted in case there are any cancellations

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: can you please come in as soon as there is an opening? THANK YOU

also: if you have any zantac, axid, pepcid or tagament from before you can give that as well, making sure to give the dose spaced 4 hrs from the prevacid

Zantac dosing- my/other’s question (has axid & pepcid dose, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

conversion chart: http://www.sfca.co.uk/match/kilolbs.htm

[Anonymous]

You have one of the BEST pediatric gastroenterologists in the country at the Massachusetts General Hospital right in Boston – Dr. Timothy Buie. Here’s his info:

http://www.massgeneral.org/doctors/doctor.aspx?ID=17260

I’m sure there might be a bit of a wait time to see him, but I would recommend contacting his office to see. I’m from Canada and we travelled down to Austin Texas to see one of the best ped GI’s in the world (but I might be a little biased ), but undoubtedly, Dr. Buie in Boston would have been my second choice.

[hellbennt]

I was posting at the same time as Sheri (above post) so I’d do what she says, LOL!

~~~~~~~~~~~~~~~~~~~~~~

another thought: call each ‘dated’ one and ask if they will dose whatever mgs/kilo (gotten from marci-kids site) it is you’re looking for- it’s ‘just’ a phone call so you could tell a white lie like you moved from another state and your first baby was dosed at ___mgs per kilo and you’re finding it hard to find someone in the area who follows this up to date protocol

something like that?

there are some drs listed here:

http://www.geocities.com/HotSprings/Villa/2193/ped.htm

and here: http://www.naspghan.org

and from the looking for a GI thread here’s:

Dr. Rachel Rosen

Division of Pediatric Gastroenterology

Children’s Hospital Boston

hellbennt2009-07-09 16:58:24

[Anonymous]

Thanks. I appreciate it. I am going to take some more action now that i have had a chance to cool down.

I have never been so angry in my life. I am considering contacting patient relations at the hospital but unsure.

[Author]

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