Jump to content
ACN Latitudes Forums

blood pressure crash /heat intolerance


Recommended Posts

Hi all,

 

I posted on PANDAS forum, got no reply, thought I'd try here.

 

We had a bizarre thing happen the last several weeks. When we went to my son's PANDAS doc for a check-up, his BP readings were extremely low, they got down to 120/20. He also had a 100 degree fever. They packed him in ice, and his BP went up slowly, temp went down slowly. He seems to have lost the ability to regulate his temperature. He can't go out if it's over 70 degrees or he gets overheated. This seems to have started since he's been on prednisone. Anyone else have this experience?

 

He is describing that he can't really feel if he is getting too hot, like his nerves aren't working right, also experiencing some numbness. Could this be MS?

 

We are going to get him tested for lyme, but need to wait till it gets cooler so I can take him out w/o worrying his BP will drop. He has been so ill the last months he cannot attend school, there seems to be more going on here than just PANDAS I'm disappointed as we had an apt with Dr B in last August but we will have to cancel as he is not well enough to travel. So discouraged right now.

 

Should I try taking him to a neuro to get an MRI?

0

 

+

-

Link to comment
Share on other sites

Hello! I am so very sorry this is happening!

 

I do know heat intolerance is a symptom of lyme and also that many people with lyme can't tolorate prednisone. Are you able to take him off the prednisone to see if it helps his symptoms?

 

I have seen another rare condition (on extreme home makeover) about body temperature regulation so I would just explore all avenues but with a pandas diagnosis, looking seriously into lyme is a very good idea. I imagine others will have more specific info to relate than I do.

 

HUGS!

 

Susan

Link to comment
Share on other sites

Hi all,

 

I posted on PANDAS forum, got no reply, thought I'd try here.

 

We had a bizarre thing happen the last several weeks. When we went to my son's PANDAS doc for a check-up, his BP readings were extremely low, they got down to 120/20. He also had a 100 degree fever. They packed him in ice, and his BP went up slowly, temp went down slowly. He seems to have lost the ability to regulate his temperature. He can't go out if it's over 70 degrees or he gets overheated. This seems to have started since he's been on prednisone. Anyone else have this experience?

 

He is describing that he can't really feel if he is getting too hot, like his nerves aren't working right, also experiencing some numbness. Could this be MS?

 

We are going to get him tested for lyme, but need to wait till it gets cooler so I can take him out w/o worrying his BP will drop. He has been so ill the last months he cannot attend school, there seems to be more going on here than just PANDAS I'm disappointed as we had an apt with Dr B in last August but we will have to cancel as he is not well enough to travel. So discouraged right now.

 

Should I try taking him to a neuro to get an MRI?

0

 

+

-

 

Acute adrenal crisis can cause these types of symptoms which may be related to Prednisone?? How much is he taking, has there been any change in dosage and how long has he been on it?

Link to comment
Share on other sites

Sorry, I don't have any advice, and your situation sounds overwhelming. But I would definitely pursue lyme testing. We have not dealt with anything as extreme as you are describing, but DS7 (PANDAS & lyme) has always had trouble regulating his body temp. He always says he is too hot, even when the temperature around him is very cold. He wears shorts all winter, and we live in Canada! He doesn't tolerate the summer heat very well at all, and we have to be so careful to keep him hydrated. The only time he is ever cold is when he has a fever and gets the chills. His body temp runs low, so if it's up to normal he will complain that he feels sick and has a fever. He also has chronically low blood pressure, reading around 105/60 most of the time. He craves salt, which I assume is linked to the low blood pressure.

 

I don't know what all this means. He was called a poster boy for PANDAS by one of the big name PANDAS docs, but he did not respond to PANDAS treatment the way we expected. We started high dose antibiotics and he became wildly aggressive and raged nearly non-stop. So we tested for lyme and he is positive, both IgM and IgG. My other 2 boys (not PANDAS) also tested positive. We are treating for lyme, bartonella and babesia, based on symptoms. Just starting treatment, so we will see how this all goes.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...