MS Discuss: Children under 8 with MS? Where do I go p

Author

Message

amlaboy
Newbie
Newbie

Joined: 16 May 2008
Location: United States
Online Status: Offline
Posts: 1

Topic: Children under 8 with MS? Where do I go p
Posted: 16 May 2008 at 4:56pm

My daughter, who is almost 7 had her first episode 2 years ago. At that time, she lost her vision and had severe headaches. She was diagnosed with ADEM (Acute Disseminated Encephalomyelitis.) Then last year, again, with the bad headaches, she experienced ataxia (dizziness & unsteady gait.)

This year (it's early (May, as opposed to yrs previous which was June/July)) she is experiencing the headaches, ataxia, fatigue, sore legs and arms & tingling. We've been told that it is most likely MS but they are hesitant to diagnose her with it because of her young age. Previous MRI's have shown plaques, each MRI those plaques were located in different places.

Frankly, I'm wondering a few things. Is there a place for parents of younger children with MS to go (as in forum?)

Anyone else out there with a very young child with MS???

IP Logged

Siberian Husky
Admin Group

Joined: 25 Jul 2006
Location: Canada
Online Status: Offline
Posts: 80

Posted: 21 May 2008 at 4:31pm

Young Persons with MS: A Network for Families with a Child or Teen With MS is a support network that provides multiple program options for families living with a child or teen who has been diagnosed with multiple sclerosis.

In Canada, please visit http://www.mssociety.ca/en/help/YoungPersonsMS.htm#contact

In the U.S., please visit http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-support-group/index.aspx

Edited by Siberian Husky - 21 May 2008 at 4:32pm

IP Logged

kimmi
Senior Member

Joined: 15 Dec 2006
Location: Canada
Online Status: Offline
Posts: 255

Posted: 21 May 2008 at 7:56pm

Just to let you know, I'm thinking of you and hope all goes well for you & your family. This forum is an excellent place to talk and share . . . anything, there are good people in here. Please let us know how it goes.

kimmi
~ Be kind to everyone :D

IP Logged

Siberian Husky
Admin Group

Joined: 25 Jul 2006
Location: Canada
Online Status: Offline
Posts: 80

Posted: 23 May 2008 at 3:04pm

Hi amalaboy

After reading your message, we are pleased to add a new forum to MS Discuss called For Parents Whose Child or Teen have MS.

Edited by Siberian Husky - 23 May 2008 at 3:04pm

IP Logged

slporpora111
Newbie
Newbie

Joined: 04 Jul 2008
Location: United States
Online Status: Offline
Posts: 1

Posted: 04 Jul 2008 at 6:50pm

When my son was 9 he developed a cold that didnt seem to go away. It was followed by slurred speech, unsteady gait. By that evening he had no speech, movement,bladder functions etc. MRI showed lesions on brain and spinal cord. They said it was ADEM.After steroids and therapy and a relapse a few weeks later, he was back to his old self. A year and a half later,he started with burning in his eyes,numbness on his right side and slurred speech. A new MRI showed new lesions. The diagnosis was made last month that he had MS.He will start his injections next month. Anyone have children that get injections? This is all new to me.

IP Logged

sammee
Senior Member

Joined: 27 Jul 2007
Location: Canada
Online Status: Offline
Posts: 385

Posted: 21 Oct 2008 at 5:09pm

hi slporpora111. I was reading your post and wanted to say that I am an adult taking weekly injections of Avonex and although it takes a few times, they get easier. If you have the right person doing them, your son will be fine. It is rough I know. Hang in there, for your Son. Be strong.

worry about tomorrow when it is today, and forget it when it is yesterday

IP Logged

mamamia
Newbie
Newbie

Joined: 24 Feb 2009
Location: Germany
Online Status: Offline
Posts: 1

Posted: 24 Feb 2009 at 9:44am

Hi!

I am new here and would like to find out more about children who have been diagnosed with ADEM (Acute Disseminated Encephalomyelitis) - who may have been later diagnosed with MS.

Our son is in a similiar situation as posted below. Last year in Feb. 2008, he had a severe, persisting headache, fever and was totally knocked-out from the pain and fever. He was hospitalized to rule out meningitis - which was ruled out. Other than that no other tests were done, and we were released from the hospital...

In Dec. 2008, it started all over again. Of course, the hospital here (Germany) was sparely staffed(Christmas holidays), and we were sent home b/c my son just had this excruciating headache w/ the same symptoms as in Feb - w/o fever.

We went to ER again, and I persisted that we get admitted. (Boys headache still persisting over 10 days - sleeping 16-18 hrs. from 24.) Docs agreed to do EEG and check eyes. Eyes ok - EEG showed diffuse slowing bifrontal - where he felt the headache pain. Control EEG brought the same results. OK for MRI w/constrast. MRI was abnormal. We were admitted again - lumbar puncture (no signs of any infections,etc.) MRI spinal cord (was ok), EEGs kept getting worse, child had neurological problems....

Finally, docs gave ok for 3-day IV cortisone therapy. It really did wonders.

The docs here are all certain that the headache pain had nothing to w/the disease. Of course, they ignore the incidence in Feb. 2008 b/c there were no (documented) occurrences of neuological abnormalities.

Has anyone had a similar experience?

Originally posted by amlaboy

My daughter, who is almost 7 had her first episode 2 years ago. At that time, she lost her vision and had severe headaches. She was diagnosed with ADEM (Acute Disseminated Encephalomyelitis.) Then last year, again, with the bad headaches, she experienced ataxia (dizziness & unsteady gait.)

This year (it's early (May, as opposed to yrs previous which was June/July)) she is experiencing the headaches, ataxia, fatigue, sore legs and arms & tingling. We've been told that it is most likely MS but they are hesitant to diagnose her with it because of her young age. Previous MRI's have shown plaques, each MRI those plaques were located in different places.

Frankly, I'm wondering a few things. Is there a place for parents of younger children with MS to go (as in forum?)

Anyone else out there with a very young child with MS???

IP Logged

sandyb
Newbie
Newbie

Joined: 17 Mar 2010
Location: United Kingdom
Online Status: Offline
Posts: 1

Posted: 17 Mar 2010 at 5:43am

HI MY SON WHO IS 6 YEARS OLD WAS DIAGNOSED WITH MS LAST AUGUST WHEN HE WAS 5,HE WAS FIRST DIAGNOSED WITH ADEM LAST MARCH AFTER WEEKS OF HEADACHES/SICKNESS/TRIPPING THEN CAMETHE LOSS OF VISION IN HIS RIGHT EYE,HE WAS GIVEN STERIODS AND DID GET BETTER BUT ALL THE SAME SYMPTOMS APPEARED LAST JULY,ANOTHER MRI AND LUMBAR PUNCTURE PROVED IT TO BE MS..ITS LONELY BEING A PARENT WITH A CHILD WITH MS AS NO-ONE IS THERE TO TALK TO.

S BLYTH

IP Logged

	Active Topics Memberlist Search Help Links Contact
	Register Login Privacy & Policies

For Parents Whose Child or Teen have MS
MS Discuss :Multiple Sclerosis Discussion Forum :For Parents Whose Child or Teen have MS

Author	Message
amlaboy Newbie Joined: 16 May 2008 Location: United States Online Status: Offline Posts: 1	Topic: Children under 8 with MS? Where do I go p Posted: 16 May 2008 at 4:56pm
	My daughter, who is almost 7 had her first episode 2 years ago. At that time, she lost her vision and had severe headaches. She was diagnosed with ADEM (Acute Disseminated Encephalomyelitis.) Then last year, again, with the bad headaches, she experienced ataxia (dizziness & unsteady gait.) This year (it's early (May, as opposed to yrs previous which was June/July)) she is experiencing the headaches, ataxia, fatigue, sore legs and arms & tingling. We've been told that it is most likely MS but they are hesitant to diagnose her with it because of her young age. Previous MRI's have shown plaques, each MRI those plaques were located in different places. Frankly, I'm wondering a few things. Is there a place for parents of younger children with MS to go (as in forum?) Anyone else out there with a very young child with MS???
	IP Logged

Siberian Husky Admin Group Joined: 25 Jul 2006 Location: Canada Online Status: Offline Posts: 80	Posted: 21 May 2008 at 4:31pm
	Young Persons with MS: A Network for Families with a Child or Teen With MS is a support network that provides multiple program options for families living with a child or teen who has been diagnosed with multiple sclerosis. In Canada, please visit http://www.mssociety.ca/en/help/YoungPersonsMS.htm#contact In the U.S., please visit http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-support-group/index.aspx Edited by Siberian Husky - 21 May 2008 at 4:32pm
	IP Logged

kimmi Senior Member Joined: 15 Dec 2006 Location: Canada Online Status: Offline Posts: 255	Posted: 21 May 2008 at 7:56pm
	Just to let you know, I'm thinking of you and hope all goes well for you & your family. This forum is an excellent place to talk and share . . . anything, there are good people in here. Please let us know how it goes.
	kimmi ~ Be kind to everyone :D
	IP Logged

Siberian Husky Admin Group Joined: 25 Jul 2006 Location: Canada Online Status: Offline Posts: 80	Posted: 23 May 2008 at 3:04pm
	Hi amalaboy After reading your message, we are pleased to add a new forum to MS Discuss called For Parents Whose Child or Teen have MS. Edited by Siberian Husky - 23 May 2008 at 3:04pm
	IP Logged

slporpora111 Newbie Joined: 04 Jul 2008 Location: United States Online Status: Offline Posts: 1	Posted: 04 Jul 2008 at 6:50pm
	When my son was 9 he developed a cold that didnt seem to go away. It was followed by slurred speech, unsteady gait. By that evening he had no speech, movement,bladder functions etc. MRI showed lesions on brain and spinal cord. They said it was ADEM.After steroids and therapy and a relapse a few weeks later, he was back to his old self. A year and a half later,he started with burning in his eyes,numbness on his right side and slurred speech. A new MRI showed new lesions. The diagnosis was made last month that he had MS.He will start his injections next month. Anyone have children that get injections? This is all new to me.
	IP Logged

sammee Senior Member Joined: 27 Jul 2007 Location: Canada Online Status: Offline Posts: 385	Posted: 21 Oct 2008 at 5:09pm
	hi slporpora111. I was reading your post and wanted to say that I am an adult taking weekly injections of Avonex and although it takes a few times, they get easier. If you have the right person doing them, your son will be fine. It is rough I know. Hang in there, for your Son. Be strong.
	worry about tomorrow when it is today, and forget it when it is yesterday
	IP Logged

mamamia Newbie Joined: 24 Feb 2009 Location: Germany Online Status: Offline Posts: 1	Posted: 24 Feb 2009 at 9:44am
	Hi! I am new here and would like to find out more about children who have been diagnosed with ADEM (Acute Disseminated Encephalomyelitis) - who may have been later diagnosed with MS. Our son is in a similiar situation as posted below. Last year in Feb. 2008, he had a severe, persisting headache, fever and was totally knocked-out from the pain and fever. He was hospitalized to rule out meningitis - which was ruled out. Other than that no other tests were done, and we were released from the hospital... In Dec. 2008, it started all over again. Of course, the hospital here (Germany) was sparely staffed(Christmas holidays), and we were sent home b/c my son just had this excruciating headache w/ the same symptoms as in Feb - w/o fever. We went to ER again, and I persisted that we get admitted. (Boys headache still persisting over 10 days - sleeping 16-18 hrs. from 24.) Docs agreed to do EEG and check eyes. Eyes ok - EEG showed diffuse slowing bifrontal - where he felt the headache pain. Control EEG brought the same results. OK for MRI w/constrast. MRI was abnormal. We were admitted again - lumbar puncture (no signs of any infections,etc.) MRI spinal cord (was ok), EEGs kept getting worse, child had neurological problems.... Finally, docs gave ok for 3-day IV cortisone therapy. It really did wonders. The docs here are all certain that the headache pain had nothing to w/the disease. Of course, they ignore the incidence in Feb. 2008 b/c there were no (documented) occurrences of neuological abnormalities. Has anyone had a similar experience? *Originally posted by amlaboy* My daughter, who is almost 7 had her first episode 2 years ago. At that time, she lost her vision and had severe headaches. She was diagnosed with ADEM (Acute Disseminated Encephalomyelitis.) Then last year, again, with the bad headaches, she experienced ataxia (dizziness & unsteady gait.) This year (it's early (May, as opposed to yrs previous which was June/July)) she is experiencing the headaches, ataxia, fatigue, sore legs and arms & tingling. We've been told that it is most likely MS but they are hesitant to diagnose her with it because of her young age. Previous MRI's have shown plaques, each MRI those plaques were located in different places. Frankly, I'm wondering a few things. Is there a place for parents of younger children with MS to go (as in forum?) Anyone else out there with a very young child with MS???
	IP Logged

sandyb Newbie Joined: 17 Mar 2010 Location: United Kingdom Online Status: Offline Posts: 1	Posted: 17 Mar 2010 at 5:43am
	HI MY SON WHO IS 6 YEARS OLD WAS DIAGNOSED WITH MS LAST AUGUST WHEN HE WAS 5,HE WAS FIRST DIAGNOSED WITH ADEM LAST MARCH AFTER WEEKS OF HEADACHES/SICKNESS/TRIPPING THEN CAMETHE LOSS OF VISION IN HIS RIGHT EYE,HE WAS GIVEN STERIODS AND DID GET BETTER BUT ALL THE SAME SYMPTOMS APPEARED LAST JULY,ANOTHER MRI AND LUMBAR PUNCTURE PROVED IT TO BE MS..ITS LONELY BEING A PARENT WITH A CHILD WITH MS AS NO-ONE IS THERE TO TALK TO.
	S BLYTH
	IP Logged