Upon recommendation, I have informed all of my daughter's teachers as well as daycare folks as to the signs of stroke just in case my daughter should experience one before we get to the bottem of all of this. (She goes for angiogram on Monday.)

We also live across the street from National Institutes of Health (NIH) and they have a stroke center. So I let the Director of the ER know what was going on so that there would be a record of possible MM for her and they would have a plan of action should God forbid she have a stroke before we get her the surgery if diagnosed. She has TIAs now.

He was perplexed about the course of action for treating a 7 year old with a stroke and was going to meet with the stroke team to discuss.

1)Are stroke symptoms any different for kids than they are for adults? I used the adult version to educate folks.
2)What is the treatment for adolescent stroke? On adults they have to use TPA (a thrombolytic) withing 3 hours to break up the clot. The ER director wasn't sure about kids.

I am just trying to be proactive so as to be prepared for the worst. The stakes are too high.

Thanks!
Stephanie

Jia_Li wrote on Feb 1^st, 2006 at 4:46am:


Just one comment about this (and I'm not a doctor, just giving my  ....).  In MM patients, it's not a clot that they have to "break up."  It's really just narrowed blood vessels.  If a patient is on aspirin or another blood thinner already, giving TPA could cause major problems as the patient's blood is already thin to begin with.  I worry that a MM patient given TPA could risk hemmorage.  

Perhaps others can comment about this....I'm going to do some research...

-Shari

According to webmd -

Wow guys...thanks for the input. Some very good points. Jia Li did just start aspirin 81 mg once daily. So I will ask Dr Scott about his advice on what to do should God forbid we have to treat for a stroke.
Thanks also for the hydration and hyperventalating advice. I have withdrawn her from all activities for now just in case.
I do worry sometimes because she can get very frustrated at little things and become EXTREMELY aggitated and shake in an eruptive crying frenzy. Not sure if this has anything to do with MM.I'm trying my best to keep her calm, but it's not always easy.
Question...when Kathleen had her strokes...other than hydration...what did they do to stop them from progressing?
Another question Shari...I thought this was Ischemic stroke from a clot thrown off by the unstable collaterals. Could you clarify a little more?!?
Mary Grace...I got your phone # written down to call you and right after that my mom was hospitalized for what they thought was a heart atack last week. I was working in the cath lab in DC when I got the call and rushed to Lacaster, PA to be with her to help. I literally had the clothes on my back and was with her through the week until we got answers. She will be Ok...but had esophogitis and other stuff which mimicked a heart attack, and was just diagnosed with emphysema..which explains the shortness of breath (yuk). Things are just starting to get back to normal...whatever that is....and I will look forward to cathching up to you live.
As always...thanks so much for your words of wisdom and concern.
Stephanie

  Stephanie, Kathleen's strokes seemed to be because she was dehydrated or had been off the asprin.So once hysdrated and on the asprin she just got better on her own we usually had a week long stay in the hospital and a repeat MRI before we left to go home.Her first stroke she was dehydrated,it was before we knew she had MM and she had had a sinus infection.When her first symptoms apeared we thought that maybe it had gone into her ears and she was just off balance becuase of that.One stroke was about a week after her Angio. she had been back on the asprin(she was off for 2 weeks for the angio) but only for a few days at that point.Her stroke on the way to Boston for her surgery she had been off asprin for 11 days.she then had 2 more strokes in between surgeries.they had decided to go ahead with the surgeries even though she was very unstable becuase they felt that if they waited and put her back on asprin, and then take her off again she would just stroke again,and it may be even more severe.She recovered quickly from the first couple strokes the last ones were quite severe and she's still recovering.The good news is, and this is what we try to focus on is NO NEW STROKES! since the surgery.This definatly saved her life.I look forward to chatting with you feel free to call anytime.I hope I can help with any questions you might have.Sometimes it's just nice to chat about all that your going through right now.I didn't ahve that when Kathleen was diagnosed  but I know how important it is to not feel alone and to just "talk" it all out.Take Care,
Mary Grace
P.S. If you don't still have my # let me know I'll send it again.

Wow Shan....how can you handle the Aggrenox. My doctor put me on it, 1 pill per day the first week and was planning on buming it upto to 2 pills per day. After the 4th day, I was having all kinds of nasty side effects, by the 6th day they took me off of aggrenox. I've been back on asprin theroy for three days...and tonight, I start taking Plavix (without the asprin of course).

With all of the side effects that I had with aggrenox, all that I can say is that you are one strong person....as my side effects kicked my butt....

Greg

You are wise to inform anyone caring for her about the signs of stroke!  One very simple test is to have her smile!  If it's lop-sided (only turned up on one side), get to ER !  Our son's face was droopy, he had involuntary twitching in his face and right wrist and he was very lethargic.  In weeks prior, he had sensitivity to bright light and had had two episodes of migranes (3 1/2 yr old).  Two weeks before the stroke, he had an ear infection and was very tired and would drink very little.
  As with many meds, what I have read is that TPA is not approved for use in children (no formal testing).  If it eases your worries, children do have a much better recovery from stroke than adults, but not to have one at all is MUCH better!
  My son recovered his speech,but his did not fully regain use of his right hand/wrist.  So, now he's left-handed.  And there were definitely intellectual set-backs, though not debilitating.
  If her neurologist has her on aspirin, I think that is good (Kyle takes only 1/2 children's per day) and hydrate, hydrate, hydrate!!!
  I wish you all the best - that she gets the surgical intervention before the blood/oxygen levels are too low!   If Dr. Scott is doing the surgery, I think you are in very good hands!

Sue