Tuesday, July 28, 2009


This is the 7 day weather forecast where we live!
It's definitely not typical summer weather for
the state of Oregon.

It got me to thinking though about the issue of
overheating. Of course, overheating is a concern
for anyone in these excessive temperatures that
we're having outside now.

Many times when a child has Agenesis of the Corpus
Callosum they can have difficulty with overheating
and regulating their body temperature when it's
warm outside or hot.

My own child, Matthew, who has complete ACC
overheats easily when it is warm and not just
on hot summer days.

I can remember clear back to when he was a baby in
my arms around 9 months old he would get listless
if he got too warm and he needed to be cooled off
immediately by stripping him down to his diaper and
getting out of the heat and sun and into a much
cooler temperature.

He rarely ever wore long sleeved shirts all year long.
In fact, you will almost always still see Matthew in
a short-sleeved shirt year round.

Even in the winter time if a room is kept too warm
he will begin to overheat, get red cheeks, sweaty
and I need to get him undressed and help him cool
himself off.

I have also always had a difficult time being sure if
Matthew has a fever because sometimes he won't
even be warm or hot on his skin.

When he was little he had a few febrile seizures
that were very scary and I never knew he even had a
fever until after the seizure was over. It wasn't
until then that his body would get hot and show
outward signs of fever.

I learned when he was younger to be alert for any
signs of Matthew being maybe a little bit tired or
slower and even though he didn't feel warm or seem
really sick I would take his temperature rectally
and this is the only way it would show a very high
temperature. Taking his temperature rectally was
my only way to know for sure if Matthew had a fever
when he was sick.

Matthew's fevers are not controlled with Tylenol
alone. It takes using Tylenol and Motrin on a rotating
schedule (per doctor's instructions) to keep his
fever under control when he is sick. Even using this
method of rectal temperature taking and double
dosing with fever reducing medicines, he still
had a febrile seizure a few times when he was

I have seen some other parents who have a child
with ACC in an e-mail support group I belong to
also mention that their child overheats easily
when they get too warm.

It definitely doesn't take much for Matthew to
wilt in the heat of the sun or in a room that is
too warm in any season of the year.

Needless to say, today we're inside the house
with the air conditioner going and Matthew is
happily playing his Casio keyboard in his room
where I just heard a few giggly laughs bounce
off his walls and warm my heart.


  1. I am speechless. My 11 year old son was just diagnosed in June with hypoplasia of the corpus callosum. He has so many different diagnosis and issues that it would take forever to list them all. When we learned he has this the doctor told us not to worry because nothing has changed. He said it may be the reason he is hyper. Well after I read up on ACC I was shocked. Almost every issue he has was explained by hypoplasia of the corpus callosum. His high pain threshold, delays, social issues, enuresis. The list goes on and on. We just met with our psychologist and told him we have answers to so many of our questions. The only things left unanswered were headaches, spontanteous vomiting and overheating. I hadn't read that overheating was a common characteristic of ACC. I can't thank you enough for this blog. It is wonderful. We are waiting to hear from our second opinion if in fact he has hypoplasia. I guess it is a subjective diagnosis. I would be shocked if he doesn't have it. Thanks for posting :)

  2. Dakotah,

    Thank you very much for taking the time to leave your comment. I'm glad that you have found the blog helpful. Thank you for your kind comments about the blog.

    I hope that you will receive your son's second opinion soon with respect to whether or not he has the diagnosis of hypoplasia of the corpus callosum. My own son, Matthew, also has a high pain threshold and I have seen many other parents report this about their own child with ACC.

    I wouldn't say that overheating is a "common characteristic of ACC" but it has definitely been mentioned many times by parents who have a child with ACC. Not all kids with ACC have trouble with overheating.

    While not all people with ACC have headaches or migraines, there are some people with ACC who do report headaches and migraines. Of course, you have mentioned that your son also has many other medical issues and diagnoses but I do want to inform you about the headaches and ACC. Often times, that is the reason why an adult with ACC finds out for the first time that they have ACC...due to having severe headaches or migraines or depression with headaches.

    There is a very good e-mail support group that can put you in touch with other parents from all over the world who have a child with ACC and adults who have ACC...the ACC Listserv. You can find the link by going to the bottom of this blog.

    Please feel free to e-mail me anytime. :)


    Thank you again.


  3. I wonder about Joels ability to control his body temperature, he's often sweaty around his head mostly at naptime (in an a.c cooled room) he doesn't seem overly happy outside when it's warm and muggy. His body temp when taken with an underarm thermometer often reads below normal, the few times he has had fever it's been hard to tell. Hmmmmm interesting.

  4. I am a health care worker. Not intimately associated with this condition. Still, consider the website and the info it provides great.

  5. I am so glad that you find the information here about Agenesis of the Corpus Callosum helpful.

    Thank you VERY much for taking the time to comment and for your kind words.


  6. My son, 6yo, with ACC gets overheated very easy, too; his pillow is soaked with sweat every morning, even though the temperature in his room is rather cool. Usually he is very active and happy guy. When it's hot outside, he reminds me of a jellyfish---always tired, lounging around... By the way he has trouble keeping warm when it's frosty, either. Thanks for your article.

  7. Dakotah,

    My 7yo daughter has HCC as well. I'd love to exchange contact information with you--every other person I know whose child has HCC has a much younger child than mine. That allows me to share my experiences, but I don't have anyone to compare notes with past the preschool years.

    She has struggled with MAJOR sleeping issues since infancy (still....). We've also dealt with the random vomiting and she's currently complaining of headaches on pretty much an all-day-every-day basis. Always in the sinus/forehead area...MRI shows her sinuses are fine and brain is stable.

    We have a group for HCC going on Facebook too if you'd like to join us!


  8. Carrie,

    I will do my best to get in touch with Dakotah for you so that you can exchange e-mails with one another. In case she doesn't look at this blog again and see your note, Dakota belongs to the ACCAA Message Board and she has posted a few times on that forum (though not for awhile). I will send her a private message on that ACC board and will send her the link to your HCC Facebook group. I plan to send her a note today. If you e-mail me and let me know your e-mail I will be happy to pass it on to Dakotah in my note. If interested you can view the ACC Message Board:




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