Do PANDAS kids have more sensitive heads?

[momtocole1]

This may seem like a strange question, but my son cannot handle any type of touching on his head. He does not want us to touch his hair. Practically melts into the chair when getting a haircut. He does not cry or anything, he just looks like he is in pain. I don't think it is just from having sensory issues, because he really has those too, like no seams in socks or tags in shirts. etc. etc....

 

What I am talking about is an extreme sensitivity with his head. If he ever hits his head or gets hit in the head he lets out the most blood curdling scream you have ever heard. It is absolutely deafening. It really scares me so much. I have another son with Down syndrome, he is 7 and really little for his age (the size of a 3 year old). He loves to tackle his big brother and jump on his head, which we are trying really hard to deter him form doing. I just can't stress enough how much my son screams in pain if he hits his head. His reaction to the pain just does not match up to what has happened usually. He has an extreme overreaction.

 

Do you think that it could be from swelling in his brain? I have read that the basal ganglia is far inside the brain and that it is a grouping of nerves????

 

I just wanted to see if anyone else has seen this. I so hope that this is a PANDAS thing and that it will improve when we get him IVIG and continue on his healing process because my nerves are totally shot.

 

Thanks for letting me vent....

 

Happy Halloween, Judy...

[michele]

My son won't comb his hair or brush his teeth without my forcing the issue. He has lots of sensory issues.

This may seem like a strange question, but my son cannot handle any type of touching on his head. He does not want us to touch his hair. Practically melts into the chair when getting a haircut. He does not cry or anything, he just looks like he is in pain. I don't think it is just from having sensory issues, because he really has those too, like no seams in socks or tags in shirts. etc. etc....

 

What I am talking about is an extreme sensitivity with his head. If he ever hits his head or gets hit in the head he lets out the most blood curdling scream you have ever heard. It is absolutely deafening. It really scares me so much. I have another son with Down syndrome, he is 7 and really little for his age (the size of a 3 year old). He loves to tackle his big brother and jump on his head, which we are trying really hard to deter him form doing. I just can't stress enough how much my son screams in pain if he hits his head. His reaction to the pain just does not match up to what has happened usually. He has an extreme overreaction.

 

Do you think that it could be from swelling in his brain? I have read that the basal ganglia is far inside the brain and that it is a grouping of nerves????

 

I just wanted to see if anyone else has seen this. I so hope that this is a PANDAS thing and that it will improve when we get him IVIG and continue on his healing process because my nerves are totally shot.

 

Thanks for letting me vent....

 

Happy Halloween, Judy...

[peglem]

It has taken us years to get my daughter to tolerate having her hair washed and brushed and combed...but she hits her own head VERY hard.

[thereishope]

I think it's sensory. During an exacerbation, it is pretty extreme for my son. If you touch his head, he must wipe it away and that leads to himself hitting his head a few times. When he takes off hat or hood, he must "flatten" and smooth his hair and fix it until it feels right. this can be his "flattening" his hair over 10 times until it feels right. He will do htis in public too with others around. He doesn't care.You cannot kiss his head either. Nor can you brush it..

 

btw...he has a crew cut so his hair doesn't even get messed up or pulled when brushing.

 

He also went a very long time w/o a hair cut. Again, becasue it was a crew cut, it looked really bad for awhile.

 

Luckily, right now, he can tolerate touching his head and he no longer has issues with removing a baseball hat. I do know when he changes his clothes he still smooth his hair out a couple times afterwards. But I "let" him. I know sometimes things just don't "feel right" with me. He only does it like once or twice. As long as it doesn't stop him from accomplishig anything else or makes him late, I think it is acceptable. I can also see the extreme positive change in him. So I currently have no concern about it.

 

Oh, I can kiss his head now too. Sometimes I just need to do that to remind myslef he is okay now.

[faith]

I can say that its a biotch to comb my son's hair, when I would try to brush it in the past, he would so over react like I was hurting him, I have to use a soft brush and soft touch. he has a longer style now and its a bit unruly so the morning routine is a little tedious for me to watch, I gotta stay out of it and let him do it or they'll be ###### to pay, lol. .... but that's interesting about it possibly being from inflammation in their brain, its something to think about. he does however like me to softly rub or scratch his head (if he asks me to).

 

 

Faith

[Worried_Dad]

Yeah, our son had severe sensory defensiveness when he first got sick. Could not stand to be touched, could not tolerate smells, strong tastes, major sensitivity to light or loud noise. Tried sensory integration therapy with an OT for a few months but it never seemed to help.

[momtocole1]

You know what I like about this post. You are speaking in the past tense! Can you send another update about your son. It gives me and I'm sure others so much hope. Thanks...

 

 

Yeah, our son had severe sensory defensiveness when he first got sick. Could not stand to be touched, could not tolerate smells, strong tastes, major sensitivity to light or loud noise. Tried sensory integration therapy with an OT for a few months but it never seemed to help.

[Worried_Dad]

I know it sounds silly... but I really am in a "pinch me, I'm dreaming" mindset, and I'm scared to death that I'm gonna wake up! Sorry I haven't updated lately.

 

So, okay, here's the big breakthrough for today. Since his one-day symptom explosion on 3/29/09, we have not been able to get our son outside for more than a few seconds (mostly to run to the car and into and out of doctor appts). Terror of contamination: dirt, bugs, etc., (and aversion to sunlight).

 

This afternoon his younger brother and I were going outside to play soccer. Our PANDAS son said, "Can I come too?" I tried not to let my shock show and said "sure, that would be fun."

 

We all three kicked the ball around for about 45 minutes. PANDAS son ran around, laughed and wrestled with his brother for the ball, fell down and rolled around in the grass (!), and just had fun like in the old days. OMG, I was trying to act cool but was so thrilled!

 

Don't want to make it sound like all the OCD magically disappeared. We still have a ways to go - sent Dr. K an update today that estimated we're just past 50% to baseline. But I am totally treasuring all of these little victories along the way!!!

 

 

You know what I like about this post. You are speaking in the past tense! Can you send another update about your son. It gives me and I'm sure others so much hope. Thanks...

 

 

Yeah, our son had severe sensory defensiveness when he first got sick. Could not stand to be touched, could not tolerate smells, strong tastes, major sensitivity to light or loud noise. Tried sensory integration therapy with an OT for a few months but it never seemed to help.

[peglem]

Worried Dad

 

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I know it sounds silly... but I really am in a "pinch me, I'm dreaming" mindset, and I'm scared to death that I'm gonna wake up! Sorry I haven't updated lately.

 

So, okay, here's the big breakthrough for today. Since his one-day symptom explosion on 3/29/09, we have not been able to get our son outside for more than a few seconds (mostly to run to the car and into and out of doctor appts). Terror of contamination: dirt, bugs, etc., (and aversion to sunlight).

 

This afternoon his younger brother and I were going outside to play soccer. Our PANDAS son said, "Can I come too?" I tried not to let my shock show and said "sure, that would be fun."

 

We all three kicked the ball around for about 45 minutes. PANDAS son ran around, laughed and wrestled with his brother for the ball, fell down and rolled around in the grass (!), and just had fun like in the old days. OMG, I was trying to act cool but was so thrilled!

 

Don't want to make it sound like all the OCD magically disappeared. We still have a ways to go - sent Dr. K an update today that estimated we're just past 50% to baseline. But I am totally treasuring all of these little victories along the way!!!

 

Sucking in my breath in awe. OMG, what a wonderful, wonderful day for you and your family! If its only a dream...DO NOT WAKE UP!

[mom md]

My son too had a complete aversion to being touched, especially on his face. Even wiping his mouth would cause his to jerk back. A very interesting finding.

Worried Dad-

I am so excited for you and your family. I understand seeing those small events that seem small to other people but mean the world to you and your family. I also think seeing your child act normal is very comforting too. Despite all the crazy stuff it lets you know that no damage has been done long-term and that your child is still in there. Hooray!!

[Suzan]

Both my girls have been very sensory throughout their lives. My younger dd very much so about her head, no water, hair brushing, etc.

 

DD8 went through periods where you could not touch her at all. We went through 2 years of OT before we learned about pandas, that helped a lot. DD8 has no trouble with hair brushing now but she is selective about who touches her. DD7 still has a sensitive head but can tolerate it and has learned coping skills as far as water in her face.

 

Susan

[thereishope]

You're not the only one worried about jinxing things. You have no idea how often I actually look aroud the room for a table or something so I can "knock on wood".

 

 

I also feel very guilty when I forget to to thank God at night for giving me my son back or if I forget to say a very quick prayer for health and happiness for my family.

 

 

I know it sounds silly... but I really am in a "pinch me, I'm dreaming" mindset, and I'm scared to death that I'm gonna wake up!