CCSVI and children..

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI and children..

Postby Flashover81 » Wed Apr 21, 2010 10:09 am

I have a 14 year old son, diagnosed with ADEM (acute disseminated encephalomyelitis). I was wondering if this procedure has been performed on children? His attack was a month ago symptoms were nystagmus and ataxia. Was on sol-u-medrol for 5 days. He returned to normal after 7 days. Waiting for 2 months for another MRI.. Any info would be greatly appreciated...I as many hope for a cure for this disease...
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Advertisement

Re: CCSVI and children..

Postby frodo » Wed Apr 21, 2010 12:58 pm

Flashover81 wrote:I have a 14 year old son, diagnosed with ADEM (acute disseminated encephalomyelitis). I was wondering if this procedure has been performed on children? His attack was a month ago symptoms were nystagmus and ataxia. Was on sol-u-medrol for 5 days. He returned to normal after 7 days. Waiting for 2 months for another MRI.. Any info would be greatly appreciated...I as many hope for a cure for this disease...


ADEM is a different disease from MS. ADEM is probably autoimmune. Nobody can know really for sure if there is an ADEM - CCSVI connection, but Zamboni tested people with non-MS neurological problems and all controls had negative in the test.
User avatar
frodo
Family Elder
 
Posts: 610
Joined: Wed Dec 02, 2009 4:00 pm

Postby Flashover81 » Wed Apr 21, 2010 1:45 pm

I know ADEM is different from MS.. The Neuro said there were certain things in the MRI that threw up flags for possible MS.. I was just wondering if the procrdure had been done on any children. Just doing as much resaerch as I can if the outcome is different.. I'm sure I'll know more with the 2nd MRI...

Thank You..
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Postby LR1234 » Wed Apr 21, 2010 1:52 pm

Maybe its worth checking looking into LDN if it is autoimmune.
I had antibodies to my thyroid gland which the LDN got rid of.
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby bluesky63 » Wed Apr 21, 2010 2:46 pm

Wow, this must be so hard to wait for the next MRI! I have a 14-year-old child (as well as two other children) and I can imagine what you're going through. Have you seen the thread by Dr. Sclafani? There has been a little discussion about children, and it might be useful for you to read that thread and maybe ask your question there. Or contact his office directly! Best wishes to you and your child. :-)
User avatar
bluesky63
Family Elder
 
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby prairiegirl » Wed Apr 21, 2010 4:26 pm

ADEM is one of the differential diagnoses for MS, and at only one attack a diagnosis can't be clearly determined. My daughter (at 17) was slammed out of the blue by a brainstem lesion which affected everything (vision, mobility, speech-- you name it). 1250 mg prednisone, 10 days. Very scary time as you well know. Eventual very good recovery, but took ~ 2 years. Diagnosis: probable ADEM. 9 years later, wham, another attack, this time presenting like a right-sided stroke. High dose steroids again, and also very good recovery (and much faster). Is it RRMS, Recurring ADEM (yes, there is such a thing), or CCSVI? She has had many MRIs over the years, but after this latest event, seems to fit the "diagnostic criteria" for MS. I am researching this big time, and hoping that local testing/treatment is available before too long. It was our experience that the neuros and radiologists took the "long view"(serial MRIs over time) before giving any answers, and I still don't think they know as her presentation (lesion load etc.) is atypical. I am sure your son will also be monitored closely over time. I do hope that you know that ADEM is very often a one-time occurrence, and I hope that will be the case for your son. In any event, all of this research is very encouraging and I believe that it may prove to be of huge benefit before too long for our children. It is great that your son recovered so well. Had I known that my daughter would recover so nicely I would have saved myself huge stress and worry. I certainly commiserate with what you have been going through-- hang in there; better days ahead!
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Re: CCSVI and children..

Postby Flashover81 » Tue Mar 06, 2012 10:00 am

Just got my sons MRI report. He had 2 previous MRI's that were stable in the last year and a half. The current MRI shows 2 new leisions Predominately right frontal,not actively enhancing and not hyperacute. Have a appt. with Nuero at U.S.F. in Tampa on Thursday. He has not had any relapses that I have seen since his first episode. I ask him all the time and also watch him for weakness and anything out of the ordinary. I am just worried about the possibility of Nuero recomending putting him on one of the CRAB's. We try to make the best choices when we cook and eat, but it's not 100%. He has been on Vit D 5,000 units for the last year and a half. Have looked at all the options CCSVI and also stem cells. If it were me that had this dreaded disease it would be easy to risk the different major procedures (CCSVI and STEM CELLS)but it is hard trying to make a decision for your CHILD. I hate to put him on the injectables if they are mainly for relapses (he hasn't had any) and not progression. I went to one of the forums on CCSVI in Tampa. Also our Nuero is Dr. Krolszyck, super nice guy, thinks outside the box. Help me with any questions I should ask. We go up on 3/8. I'm also a Firefighter with some medical knowledge. But my mind is not thinking straight these last few days, pretty stressed,worried and upset. Any thoughts would be greatly appreciated. Thanks Jimmy.
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Re: CCSVI and children..

Postby DougL » Tue Mar 06, 2012 10:32 am

Flashover81 wrote:Just got my sons MRI report. He had 2 previous MRI's that were stable in the last year and a half. The current MRI shows 2 new leisions Predominately right frontal,not actively enhancing and not hyperacute. Have a appt. with Nuero at U.S.F. in Tampa on Thursday. He has not had any relapses that I have seen since his first episode. I ask him all the time and also watch him for weakness and anything out of the ordinary. I am just worried about the possibility of Nuero recomending putting him on one of the CRAB's. We try to make the best choices when we cook and eat, but it's not 100%. He has been on Vit D 5,000 units for the last year and a half. Have looked at all the options CCSVI and also stem cells. If it were me that had this dreaded disease it would be easy to risk the different major procedures (CCSVI and STEM CELLS)but it is hard trying to make a decision for your CHILD. I hate to put him on the injectables if they are mainly for relapses (he hasn't had any) and not progression. I went to one of the forums on CCSVI in Tampa. Also our Nuero is Dr. Krolszyck, super nice guy, thinks outside the box. Help me with any questions I should ask. We go up on 3/8. I'm also a Firefighter with some medical knowledge. But my mind is not thinking straight these last few days, pretty stressed,worried and upset. Any thoughts would be greatly appreciated. Thanks Jimmy.


Jimmy - send a message to Dr. Sclafani (he is a member here). he can tell you about age restrictions regarding CCSVI. I can tell you if this my child, I would get him tested/treated.
User avatar
DougL
Family Elder
 
Posts: 365
Joined: Mon Jul 11, 2011 3:00 pm

Re: CCSVI and children..

Postby Cece » Tue Mar 06, 2012 11:04 am

I'd consider getting him tested for CCSVI. No harm in testing, and maybe he does not have ccsvi and the decision to treat or not treat would never need to be made. Or maybe the testing shows severe ccsvi and that makes the decision easier as well.

I've heard of a clinic treating a child, but I think the child was 16 or so. This was reported on a different facebook site a year ago. Both dad a nd son were treated.

Really sorry to hear about the new lesions.

edited to add: In Dr. Sullivan's presentation on integrating CCSVI into an ambulatory care center, he raised these questions
Determine if you're prepared to treat children. Can you handle complications and problems if you treat children in an outpatient ambulatory setting, without the back-up specialists at a hospital?
http://www.youtube.com/user/RadiologySU ... ature=mhee
So it is something the interventionalists are thinking about too.
Cece
Family Elder
 
Posts: 8990
Joined: Mon Jan 04, 2010 4:00 pm

Re: CCSVI and children..

Postby magoo » Wed Mar 07, 2012 4:41 pm

So sorry for what you are going through. My son had dizzy spells for two years and had MRIs, which were normal. I often think about CCSVI and my children. If there were any inclination that they were progressing or in trouble, CCSVI diagnosis would be first on my list. My heart goes out to you. Choose what feels right for you and your child.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Re: CCSVI and children..

Postby Flashover81 » Sat Mar 10, 2012 4:42 pm

The Radiology facility in Ft. Myers didn't send the cd of the MRI just the written report (very upset) to Tampa. So don't know like you Rhonda if they are old or new. He was positive about CCSVI but wouldn't elobarate. We talked about the DMD's and I told him we would like to try a strict diet and supplemts for 6 months and see how that works. He then told us about a patient he had that was moveing to Australia but couldn't be on any kind of therapy. He said he stuck to a strict diet and made improvements so before his move he was able to write the Goverment and honestly say he was not on any kind therapy. we are going to try it and see. I am not in denial just wanting to buy as much time as possible for all the research to come in. Jimmy.
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Re: CCSVI and children..

Postby magoo » Sat Mar 10, 2012 4:59 pm

There is more benefit in focusing on diet and supplements than we really realize. I think it is VERY important. Best of luck.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users