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Our son, Jelte, is 3 years old and is diagnosed with AlxD in jan 2008. We have had a few warmer days in the Netherlands now. The disease seems to get a bit "worse" at those days. He has more problems with his motor skills and has problems to cool down on his own. Is there anyone else that also has experienced some kind of connection between outside-temperature and the disease?
greetings Monique
Leukodystrophies Epilepsy Stroke Multiple sclerosis Hypotension Leukodystrophy
Oh, yes. Hailey is 8 years old now, (we met you at the Dekalb meeting) she has a terrible time with the heat. Anything over 80 degrees farenheit and she gets weak. we have to stay in the house a lot in summer and we swim a lot to keep cool. My Mom has multiple sclerosis and has trouble with heat too. It has been 97 degrees here for the last 12 days!! Hailey also doesn't want to eat much in the summer and is gettting thin. She goes to her neurologist on Tuesday, I'll report to you anything new. Take care,
Dawn Knecht
My son is still in the beginning stages of being diagnosed for leukodystrophy. Which one? I have no clue. This is very overwhelming for me. I can't seem to function right. I am terrifed of losing my baby boy. I am hoping and wishing the doctors are wrong, but I have to prepare myself for the worse.
I too have seen how weaker my son gets in the heat. He says he feels light-headed and his legs become weaker. He does NOT want to eat anything. I am worried about the lack of nutrition, so I buy him vitamins and the Pedia-Sure milks with DHA. I am convincing myself that these will work for his nutrition. I hope God hears my cries. Please keep us posted on the doc. visit.
My son just turned 5 and he also has significant difficulty tolerating the heat. Our neurologist has said this is to be expected with Alexander's and we should use caution when playing outside and such if it's about 80F (26C). We recently went to Florida for a vacation and it was extremly hot, we didn't realize it at the time but Sean lost 6 pounds because he wasn't eating like he normally does. Fortunately, he gained it all back within a week of being back home.
Carin
Hello, thank you all for your reply!! Jelte went for his check up last monday. His doctor said Alexander's was indeed a possibility for Jelte's reaction to heat. He also knew a girl with Alexander's who was doing better when it was warm. It could also be a reaction of his epilepsy (English??). Could that be another explanation for your children? We go to Jelte's neurologist in september (prof vd Knaap) and I will ask her too. Wishing you all the best,
Monique
Kelly has always had abnormally low blood pressure which is worsened by heat. As such we keep her out of the sun as much as reasonable which is difficult since we live on a lake and do a lot of boating. When outside we try to keep her bathed in sun tan lotion and either wearing a hat or under some kind of umbrella. You might want to consider a blood pressure check because hypotension can also be a fairly serious problem.
Good morning to all,
I was at the meeting in Illinois as well. After the Doctors were finished speaking, I asked if heat was an issue with Alexander's & he told me they were just starting to research that.
My son is almost 18 years old, very high fuctioning, and suffers in the heat. He gets light headed, sick to his stomache & usually gets a head ache. My son does not have a loose of appitite.
I have been checking into cooling vest for my son. It will help allow us not to be prisoners to an air conditioner. My son loves to play sports, but is limited beacuse of the heat.
I am sorry for all of us, but if is nice to know that others seem to have the same symptom. Until reading this, nobody else I've spoken with has had heat issues.
Love & Prayers to all,
Amy
My daughter has CACH another form of Leukodystrophy, and she too has a terrible time with hot days. Her breathing is worse at times plus motor skills are weaker. Anytime there is a climate change, her day changes. I just do what I can to make her comfortable and if it is really hot that usually means staying inside. Good Luck!
Hi Monique,
I also was in DeKalb at the AxD meeting and we actually sat together. I'm one of the rare adults with AxD and since my symptoms started at 43, I look back and realize that my summers were difficult for quite awhile. I don't sweat and when I went to Mayo clinic, they ran a test called a Sweat test and found that I don't sweat. They said it was a neurological disorder and I was more prone to Heat Stroke because I don't
realize how hot I get. Please take extra care with Jelte and be sure to keep him hydrated. My best to you...
Patti
My son Dylan had Alexanders... we lived in Florida & the heat was awful..I noticed when we took a trip to Pigeon Forge Tenn. in the Smokey Mountains he did extremely well, ate so much more & didn't seem as tired...I hope to one day be able to meet other families with children with Alexanders, Dylan was 1 of the first diagnosed & lost his battle when he was 7 in 2004. God Bless all of you, you are all in my prayers.
Hailey's doctor says that they are working on a cure , but nothing yet. She lost about 5 lbs. in this heat wave. She also has been talking in that funny high pitched voice that comes and goes. Do your kids legs shake when they stretch? Have numbing in their feet?
Hailey was tested for 22 leukodystrophies, the 22 was Alexander disease. It took us 5 very long years to get an answer. I also got the news over the phone and , yes, you never forget that !! Her disease was so mild at first the doctors thought I was overreacting to her symptoms. I have a blog on all this at :
www.caringbridge.org/visit/haileyknecht
God Bless you,
Dawn
I was told over the phone also....1 of the worst days of my life. When we were first told that it could be Alexanders the Dr. said he didn't know much about it, so we need to go home & look it up online...not telling us it was fatal & children usually don't live past 6 yrs of age. I will never forget it January 17th 2001. But my Dylan did beat the odds he was 7 when he past away.
Thank you for sharing your info. I am so truly , deeply sorry you lost your son to this horrible disease. Our doctor also told us what yours did...I was crying so hard at the computer that night i couldn't read it. The truth is the doctors seem to know less than the parents. It will be up to us to find a cure. God Bless you.
Dawn Knecht
It will be up to the parents & I haven't stopped...it gives me more reasons to help whenever & however I can.
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