Wondering for my Son, do any activities make you feel different?

Just curious.. My son has a lot of motor problems and we are careful about not letting him do things that we think may cause him discomfort. Okay fine.. We are too overprotective. For instance, he has slid down a small slide and said his head hurt. His PT spins him around on a lily pad (in the water) to help with balance and vestibular stimulation. Ashton is still a little to young to understand all of this, but just curious from those of you that can express how this stuff feels. Does it make your head feel different at all? His vascular specialist says no restrictions, but it makes me nervous. Thanks for any input!

Betsy

Hi Betsy. I don't know if avms effect kids differently than they do adults. I can only share with you how mine effects me. But, I am a little surprised that he has no restrictions. My avm is in my basal ganglia as well and I was given many restrictions. Then again, it was a good size when they found it. I think that makes a difference too. I had it treated a few yrs ago and now it's much smaller.

For me; I get light headed, a constant headache, a stiff neck, I get tremors - mostly in my left arm and left leg (sometimes a seizure) that comes and goes, I get a 'fullness' feeling in my head, vertigo - that comes and goes. Sometimes I have problems concentrating and comprehending simple things. I tire easy as well. When these problems get the best of me, I have to lie down for a while, sometimes for a couple of hours. And then I feel better.

My doctors told me, to be very carefull not to do anything that raises the blood pressure or the heart rate. Don't do anything that puts the head below the heart for any length of time. Not even to go swimming. The only exercise I was aloud to do was walking (which I didn't listen). Like I said, mine was a good size when they found it.

For me, my biggest enemy is hot summer days. That makes me feel a lot worst and brings on more symptoms for me. I've learned to pace myself and take a lot of breaks, if I have to be outside.

I think you have every right to be protective of your son (((wink))). This is just my thought...Since everyone is different, I think he will learn on his own, what his limits might be. And he will know when he needs to rest or not.



Ben Morrell said:

Hi Betsy. I don't know if avms effect kids differently than they do adults. I can only share with you how mine effects me. But, I am a little surprised that he has no restrictions. My avm is in my basal ganglia as well and I was given many restrictions. Then again, it was a good size when they found it. I think that makes a difference too. I had it treated a few yrs ago and now it's much smaller.

For me; I get light headed, a constant headache, a stiff neck, I get tremors - mostly in my left arm and left leg (sometimes a seizure) that comes and goes, I get a 'fullness' feeling in my head, vertigo - that comes and goes. Sometimes I have problems concentrating and comprehending simple things. I tire easy as well. When these problems get the best of me, I have to lie down for a while, sometimes for a couple of hours. And then I feel better.

My doctors told me, to be very carefull not to do anything that raises the blood pressure or the heart rate. Don't do anything that puts the head below the heart for any length of time. Not even to go swimming. The only exercise I was aloud to do was walking (which I didn't listen). Like I said, mine was a good size when they found it.

For me, my biggest enemy is hot summer days. That makes me feel a lot worst and brings on more symptoms for me. I've learned to pace myself and take a lot of breaks, if I have to be outside.

I think you have every right to be protective of your son (((wink))). This is just my thought...Since everyone is different, I think he will learn on his own, what his limits might be. And he will know when he needs to rest or not.

Thank you so much fo all of that information! Sounds so much like my son. He has lots of tremors, has seizures, difficulty with concentation/comprehension, tires easily and summer is definetly rough for him. He also has trouble regulating his body temperature. Possibly because of AVM in Thalamus?? So he shivers soo bad when he is cold, after a bath, or even when getting out of the pool in the summer. I think it is because he has so much blood flow centrally located (head to heart and heart to head) that the blood flow does not go to his extremities to warm him up. He does not persay "swim", just get in a pool and play while I am holding him. Interesting that he has no restrictions (of course as I said, we really think ahead before letting him do anything) but you do. Guess it is just difference in Dr.'s. We definetly do always err on the side of caution though. His pediatrician said not to let him cry too long and I totally get that. His face gets red and his veins on his face get even larger:( We always have m & m on hand to help calm him if he falls or gets hurt. Thanks again for the info!

Betsy

M & M's...What a clever idea. Can I have some too. LOL

You are very welcome, I'm glad I could be of some help for you and your family.

There's something else I do when I get overheated from being out in the sun to long, or just from over doing it..... I wear or put an ice-pack on the back of my neck and that will pull me out of the state that I'm in fairly quickly. I have to use real ice. The gel-packs don't seem to get cold enough and they don't last very long. It usually takes about 6 to10 minutes and I'll start to feel better. The longer I have it on, the better I feel of course. I had a doctor tell me once that he thinks the reason it helps me, is because it slows the blood flow down to the brain. It makes sense to me. :) All I know is, it works. I thought I would pass this on to you.

Feel free to ask me anything you would like. I will do my best to help, the best that I can.

HI BETSY, MY AVM IS IN MY RT FRONTAL LOBE WASN’T GIVEN ANY RESTRICTIONS BUT HAVE LEARNED I DO HAVE RESTRICTIONS THAT I HAVE FOUND OUT ON MY OWN. THE MOST RECENT I HAVE LEARNED IT NOT TO LIFT THINGS OVER MY HEAD IT MAKES ME EXTREMELY DIZZY N ABOUT PUTS ME ON BUTT. I CANT DO EXCESSIVE BENDING OVER. AND NOTHING THAT RAISES MY HEART RATE I WIND UP WITH A VERY BAD HEAD ACHE AND THEN I’M EXTREMELY TIRED AND HAVE TO LAY DOWN FOR SEVERAL HOURS. BASICALLY IF YOUR SON SAYS IT HURTS JUST DON’T LET HIM DO. JUST PAY ATTENTION TO HIM AND IF SEEMS TO STRENOUS THEN HE PROBABLY SHOULN’T BE DOING IT. i HOPE HTIS HELPS SOME WHAT AND I’LL KEEP YOUR SON IN MY PRAYERS. I HAVE CHILDREN OF MY OWN SO I WOULD BE OVER PROTECTIVE IF IT WAS MY CHILD. TONNA

Thank you so very much and prayers for you as well!



Tonna Wenger said:

HI BETSY, MY AVM IS IN MY RT FRONTAL LOBE WASN'T GIVEN ANY RESTRICTIONS BUT HAVE LEARNED I DO HAVE RESTRICTIONS THAT I HAVE FOUND OUT ON MY OWN. THE MOST RECENT I HAVE LEARNED IT NOT TO LIFT THINGS OVER MY HEAD IT MAKES ME EXTREMELY DIZZY N ABOUT PUTS ME ON BUTT. I CANT DO EXCESSIVE BENDING OVER. AND NOTHING THAT RAISES MY HEART RATE I WIND UP WITH A VERY BAD HEAD ACHE AND THEN I'M EXTREMELY TIRED AND HAVE TO LAY DOWN FOR SEVERAL HOURS. BASICALLY IF YOUR SON SAYS IT HURTS JUST DON'T LET HIM DO. JUST PAY ATTENTION TO HIM AND IF SEEMS TO STRENOUS THEN HE PROBABLY SHOULN'T BE DOING IT. i HOPE HTIS HELPS SOME WHAT AND I'LL KEEP YOUR SON IN MY PRAYERS. I HAVE CHILDREN OF MY OWN SO I WOULD BE OVER PROTECTIVE IF IT WAS MY CHILD. TONNA