Hi all. My name is Susan Gould and I was lucky enough to meet many of you at the FMDSA conference. I generally post at the yahoo support group but came here looking for some old friends that I hadn’t heard from in a long time. I was once a member of careplace in the beginning but somehow got lost in the shuffle and I’m now finding my way back. I just wanted to say hello. For those I haven’t met, I’m a Mom with a 12 year old daughter who has FMD. Fortunatly, she’s in great condition and I learn from all of you so that I can help keep her that way.
HI Susan - good to meet you at the conference. This is Karen - I had the Baby with me. Nice to meet you and your husband.
Of course I remember you Karen. How’s baby Luke and your wonderful husband? I’m sorry, his name escapes me. How are you doing?
Susan
All is well - I Have great BP since recovering from angioplasty to my renals - my BP medicine Losartan - has really conqured my BP problems - it is used in other vascular connective tissue disorders - Nazli McDonnel recommended it in my case and Dr. Olin also prescribed it. I feel well -taken care of - not just by them but the new community of FMDers I met at the conference.
I feel I have dodged a bullet with the support and knowlege I got from FMDSA - thank you and Pam for all you do.
Tony my husband, is well - He appreciated meeting my friends from what we call “the chat room” Now that he met you -all, he can rest assured I am not having an internet affair!
I am resisting the impulse to diagnose my son Luke but he does have 3 hernias which were operated on, a few hemangiomas, and he has blue sclerae so I am keeping a close eye on him. but trying not to be a nut. Just in case which pediatric specialist do you know of or recommend?
Hello, I’m new to group and trying to find someone in ohio who has FMD. Thanks. Anise
Welcome to the group. I have a child with FMD and I live in the Akron area. There are several people from Ohio on this site and on the yahoo support group site as well. I know of several from the Cleveland/Akron area. Where do you live?
Susan G.
Karen: I know its tough not to jump the gun over Luke. Even though Alayna is the one with FMD, every time our son has some complaint we go running to the doctor in a frenzy. He’s had things like heart palpitations, headaches and now he has numbness in his hands. We’ve had it all checked out and none of it seems to be FMD related. It’s so hard, I know. What does your peditrician say about Luke? Does he/she think there could be any connection? You asked about a Ped. who specializes in FMD and I do know one in Phili but I don’t think I’d recommend that route unless your ped. feels there might be some cause for concern. Just take a deep breath and remind yourself that kids, especially the littlest ones, seem to have all sorts of things wrong with them. That first year or two the body is working so hard to grow and there are going to lots of visits to this doctor and that. Hang in there and if you do decide you want to see the doc. in Phili let me know.
Susan G.
p.s. I laughed about the Internet affair. I guess I’ve been married too long now because Rich never considered that about me . . . not once! At what point is it o.k. for them to stop being jealous.
Hello Susan,
I live in Twinsburg.? I’m not too computer savvy so it may be some time before I get back to where I found you.? Sorry to here of your child.? Thanks for responding.?
-----Original Message-----
From: susan g fmd-cpt9675@lists.careplace.com
To: adreaadams@aol.com
Sent: Wed, 3 Sep 2008 10:36 am
Subject: Re: [fmd] New to Group
Anise: I live in Hudson. Any chance your the lady I’ve already met from Twinsburg? I don’t want to name names if I’m wrong but I had the pleasure of sitting down at Yours Truly with a lady from Twinsburg a few years back. Either way, if you want to meet or talk let me know and I’ll get you a number where you can reach me.
Susan
? Hello Susan,
No, I’m not that person.? But if you are the lady heading up an FMD Foundation in Hudson, then I did speak with you before my '05 surgery in California.? I believe at that time your daughter was 9.? Nonetheless, sure, I’d like to meet with you.? You’re close to me.? My number is (330) 963-0068.? I don’t work and am free most days.? Just let me know when/where you’d like to meet.? The Twinsburg library has nice meeting rooms.? Thank you.
-----Original Message-----
From: susan g fmd-cpt9675@lists.careplace.com
To: adreaadams@aol.com
Sent: Wed, 3 Sep 2008 12:07 pm
Subject: Re: [fmd] New to Group
thanks Susan - my pediatrician does not see the scoliosis or joint laxity or think any of the symptoms are problems - but neither pediatrician knew about FMD - and neither diagnosed his hernias either - it seems impossible they could miss those given his symptoms and problems. Thanks to my husband - we found it and an excellent surgeon. It is amazing how persistant you have to be for simple things.
I like your advice you gave- and I really have to watch out so I dont go huinting for FMD and miss something else. I have decided to just be most vigilent for cardiac and renal issues- so now I have a nephrologist who is his pediatrician. I also know of some local MD"s who treat kids with marphans and Ehlers Danlos so I can go see them if I feel he needs a closer look. right now - just a deep breath. thanks again for the great advice.