Hi!
I have a question that has been on my mind for some time.
My daughter Louise, 7 years old had surgery one year ago and is doing fine now. She just had a follow-up with MR and her doctor says it looks so good that she won´t have to go through angiography right now.
Before the surgery when she was having headaches, numbness and TIAs we gave her extra oxygen to breathe from a tube with 100% oxygen and it helped her some. Did any of you or your kids have that?
The only symptoms I recognize with her nowadays is that if she gets very (too) tired she gets headaches and aching legs , sometimes really bad, and when that happens the extra oxygen helps her.
Any reaction on that?
She also takes bloodthinner-injections daily but apart from that she´s just like before the MM started.
Take care evrybody!
From Annica and a "snowy" Stockholm

Kathy,
       Are you going to have surgery? Annica does your daughters neourologist say she needs the injections still because my daughter was taking injections of Lovenox and it kind of got forgotten about and when we were out to Dr. Steinberg for a check up we mentioned it and he said she didn't need them anymore she took them while waiting a month to 6 weeks for surgery after having several strokes. She now takes 325 ml. tabs of ecotrin that she'll take for ever.
                              Nancy ;

Hi Nancy!

In Sweden the doctors know very little about MM and I think that is why they still keep my daughter on injections of bloodthinner, because it has been good for her for more than a year now and why change a "winning concept". Perhaps its also because my daughter has a caogulationdefect called APC-resistance and it adds more risk of having a stroke apart from her having Mm. So she has two reasons to risk stroke.
However she is feeling as great now as any 8 year old girl could do and for that I am very thankful. She is tired of taking her injections daily but as long as she can do it herself it´s OK. Not for one moment would she let anyone else, not even the doctor or nurse, do it now that she learned how. Stubborn little lady!

See you soon and excuse my "limping language" .

Annica

Hi Nancy:

Yes I am gong to have surgery.  I will go to Miami 3/8/04 and meet with Dr. Roberto Heros and set it up.  The referral has taken so long.  Thank you for asking.

Kathy