Hi everyone.  There's a little girl at my school who is I believe 6 now.  When she was 4 months old (same age as my son now!  ), she had an ischemic stroke.  I spoke to her mom the other day and asked her if they'd ever been told about moyamoya.  The doctors never did determine what caused the stroke.  I recommended she look into it and mentioned Dr. Steinberg's name.  The child was seen at Stanford, but I don't believe Dr. Steinberg was ever involved.

Anyway, the girl's mom told me that if I knew anyone suffering the effects of a stroke, especially children, she highly recommends something called hyperbaric oxygen therapy.  Apparently it's what is used to treat divers who get the "bends" from ascending too quickly.  She sings its praises because the doctors saw such an improvement in her child and in another child being treated for "saggy baby" syndrome . . . I think that is what she called it.

Okay, my question: has anyone ever heard of this treatment?  I would imagine that since so many people here have dealt with strokes, especially in kids, maybe someone here has heard of it.  I never had.

Diane

I hardly ever get to watch any TV these days, but I did see that episode, and the young British intern who had to be in the chamber with the child as he was treated was claustrophobic.  Was it a child being treated?  I don't remember.  Anyway, I had not thought of it for stroke and, consequently, possibly moyamoya.  I thought I would just be referring the mom to this site and the possibility of consulting with Dr. Steinberg (since we're pretty close to Stanford).  She obviously knows a lot about the treatment of stroke in kids from her experience.

Diane

Way to go, Peak, Lisa and Janice-------maybe this website will assist in finding a cure or alternative forms of treatment  for those suffering with moyamoya...especially the children.........you never know.........P

Mary Grace,

What Denise's mom told me was that her daughter's hand was basically permanently closed up, but after the therapy, she can open and use it.  I don't know the child very well, but she did take soccer classes with my husband for part of last school year when she was in kindergarten, so maybe I can ask him what he noticed.

Diane

Diane and Janice, I would love to hear moe about this.It brings tears to my eyes just thinking that there is hope.It has been feeling hopeless lately only becuase I am realising how long it has been since her last stroke.I try not to think about it and be positive.All that I have heard so far about this therapy is possitive. the biggest stumbling block is that insurances most often won't pay for this.....Thanks.....I appreciate the help.
Mary and Kahtleen

Well, she wasn't on a team with him, just in a class.  She was in kindergarten then and she is in first grade now (about to finish for the year).

She is in a regular class at our school, does P.E. with her classmates, etc.  So, from that point of view, she has been able to lead a normal life.  Her mom mentioned to me when we spoke that she does not get as tired as she used to when they go for walks.

Gotta run!
Diane
P.S. Pat, people here don't know who Peak is.  Call me Diane!

this therapy sounds very interesting i would love to hear jake talk again and be able to open his hand what should i do? ask dr. scott? or his regular ped dr. i will continue to follow the post. thanks for the info.