Need guidance -child with multiple scierosis

[peanut1967]

Has anyone got a child with MS?

We are foster carers and may be having a child with MS, I would be grateful for any input.
Thanks
Angie

 

[Dizznee Freak]

Has anyone got a child with MS?

We are foster carers and may be having a child with MS, I would be grateful for any input.
Thanks
Angie

I will try my best to help. First my wife is the one with MS. She is basically in a wheelchair for any outings. I suppose the one thing I can tell you from my experience with my wife as well as others with MS we have befriended in the past is this. Extreme Heat is very hard on my wife.In fact if she is in temps above 75 degrees she will be in very bad shape. I would also suggest a modest pace of touring.It was my wife having MS that broke me of the Commando attitude. Those are the two I would be concerned with heat and easy pace.

 

[SueM in MN]

The MS Society has good information in general and does have a page about MS in children:
http://www.nationalmssociety.org/about-multiple-sclerosis/pediatric-ms/index.aspx

I can tell you that MS in children is rare, and 'child' goes up to 18 years. My son in law was diagnosed with MS at 16 and even in a pretty big MS practice at the University of Minnesota, he was considered young for MS.

As far as symptoms, they are extremely variable, so you will really need to know about the individual child to be able to know what care he will need. Some people have frequent MS episodes, some are infrequent.
Some don't have any problems between episodes and don't need to do anything special (for example, my SIL has some balance issues that are not readily visible).
As the other poster mentioned, people with MS tend to have a hard time with the heat. But, that's not universal, so it's possible an individual may not have problems or would have problems only with heat combined with humidity. And, some are fine with the 80s, while others feel temperatures less than that.

 

[peanut1967]

thankyou so much for the replies, any little info is great, I have searched the net, but was hoping to find a parent who could have a chat with.

angie

 

[Dizznee Freak]

I can tell you that MS in children is rare, and 'child' goes up to 18 years. My son in law was diagnosed with MS at 16 and even in a pretty big MS practice at the University of Minnesota, he was considered young for MS.

As far as symptoms, they are extremely variable, so you will really need to know about the individual child to be able to know what care he will need. Some people have frequent MS episodes, some are infrequent.
Some don't have any problems between episodes and don't need to do anything special (for example, my SIL has some balance issues that are not readily visible).
As the other poster mentioned, people with MS tend to have a hard time with the heat. But, that's not universal, so it's possible an individual may not have problems or would have problems only with heat combined with humidity. And, some are fine with the 80s, while others feel temperatures less than that.

I agree the biggest frustration with MS is the widespread variety of symptoms. My wife has primary progressive so she does not have relapses she has more a steady decline in mobility.In 9 years she has gone from walking with a cane to need ing a wheelchair. I agree it seems like no two patients have the same symptoms.