Heart racing and other odd symptoms

[Debbie1]

We have had many odd symptoms over the years that were eventually explained as part of PANDAS so I thought I would post our most recent one to see if there is any connection.

 

On Saturday night my daughter was trying to fall asleep when her heart started racing. She was uncomfortable and could not fall asleep so we paged the doctor before deciding whether or not to take her to the emergency room. Her pulse was faster than normal, but not dangerously high so the doctor said we did not have to the hospital yet - just keep an eye on her to make sure it returns to normal. The next day her pulse was fast the entire day. We went to the doctor and her blood pressure was normal. By yesterday evening, her pulse was back to normal. Has anyone experienced this?

 

One more unusual question - is keritosis pilaris an autoimmune condition? I googled it, but can't seem to find the answer. dd has the bumps on her cheeks that someone recently mentioned. The dermatologist we took her to a few months ago said it was keritosis pilaris and gave her skin creams to use. Everyone has told us it is an inherited skin condition, but no one else in the family has it. If it is a symptom of autoimmune issues, then I could understand why she has it.

[dcmom]

Debbie- Is she on steroids? I think they can cause heart racing...

 

My daughter has something (maybe keritosis pilaris) on her knees. She hasn't always had it. It looks like small white (skin colored) bumps. They are not noticeable from a small distance. My dh thinks they are nothing... Is this what your dd has?

 

Eileen

[Debbie1]

Eileen,

 

She is not currently on steroids. She finished the 1 month of steroids at the end of October and has not been on any since.

 

Yes, my daughter's bumps are skin colored and not noticeable from a small distance away, but are noticeable up close. I have not paid close enough attention to determine whether they correlate with her PANDAS symptoms...but I will now.

 

Debbie

[Megs_Mom]

Eileen,

 

She is not currently on steroids. She finished the 1 month of steroids at the end of October and has not been on any since.

 

Yes, my daughter's bumps are skin colored and not noticeable from a small distance away, but are noticeable up close. I have not paid close enough attention to determine whether they correlate with her PANDAS symptoms...but I will now.

 

Debbie

 

That is wierd. I never mention this because I did not know how to describe it. Meg has this a day or two before each of 2 major onsets. I'm not sure about the original one when she was little. It looked kind of like the really early signs of whiteheads, but she was only 6 and 7 - and they faded in a day or two without becoming anything. It was like a rash, but skincolored. It was just odd to me because she usually has perfect kid skin. I mentioned it a few times to docs and the did not even blink or comment, so I dropped asking about it.

[ajcire]

My ds gets the same thing on his cheeks... I have been trying to keep an eye to see if it is matching up with episodes or not. The ped didn't give it any thought.... it's weird how it just comes and goes and when it's there it's not like just a couple.. it's both his cheeks but it's like it blends right in so only if you are looking for it do you even see it yet they are definitely little bumps.

 

Eileen,

 

She is not currently on steroids. She finished the 1 month of steroids at the end of October and has not been on any since.

 

Yes, my daughter's bumps are skin colored and not noticeable from a small distance away, but are noticeable up close. I have not paid close enough attention to determine whether they correlate with her PANDAS symptoms...but I will now.

 

Debbie

 

That is wierd. I never mention this because I did not know how to describe it. Meg has this a day or two before each of 2 major onsets. I'm not sure about the original one when she was little. It looked kind of like the really early signs of whiteheads, but she was only 6 and 7 - and they faded in a day or two without becoming anything. It was like a rash, but skincolored. It was just odd to me because she usually has perfect kid skin. I mentioned it a few times to docs and the did not even blink or comment, so I dropped asking about it.

[nevergiveup]

Debbie,

 

My dd had two occurances of heart racing. Valium did not reduce it. We went to the ER and they couldn't get her heart rate down. She had several more attacks for several days after this. Then it disappeared. She was having horrible intrusive thoughts at the time. It was a hard time but short lived. Neurologist wanted to give her Haldrol in ER. Idiot. Later got steroids and she went into complete remission within 5 days. Stayed on steroids for a month.

[smartyjones]

That is wierd. I never mention this because I did not know how to describe it. Meg has this a day or two before each of 2 major onsets. I'm not sure about the original one when she was little. It looked kind of like the really early signs of whiteheads, but she was only 6 and 7 - and they faded in a day or two without becoming anything. It was like a rash, but skincolored. It was just odd to me because she usually has perfect kid skin. I mentioned it a few times to docs and the did not even blink or comment, so I dropped asking about it.

 

i definitely think it is strep related or at least bacterial. our first diagnonsed strep was March 2006 --my older7 year old(nonpandas - although shows very slight signs that would never be a problem except that has pandas brother and it just makes me think. . .) woke up one day with small whitehead-like acne bumps on both cheeks and chin. it faded during the day but didn't completely go away. next morning was same as first. i thought it was wierd and called dr - a friend said she'd known someone who had a bad face rash with strep. by the time we got to dr in early afternoon, very faded. they didn't think could be strep but had no other explainations so rapid tested anyway = positive. he had no other signs of any illness. i now wonder if it was a particular strain of strep and that's what got the ball rolling for pandas son.

 

he now often has small skin-colored bumps around his mouth that seems to come and go - seems usually if we are more or less diligent with fish oil. i believe it's thought fish oil can help with keritosis pilaris. he's had a red, small bump rash for a couple of weeks that appeared with a cold that hasn't gone away. last night, i put an homeopathic antibiotic that we use for pandas son on it and it seems to have helped.

 

pandas son has always seemed to have very fast heartbeat when he has a fever.

 

with first exacerbation, pandas son had horrible mouth rash - drs wrote off as b/c he was sucking on shirts and was chapped. it wasn't chapped it was a rash - i believe in and of itself. slight variations of this rash seem to appear with exacerbations. he is in mild exacerbation now and has small rash on cheeks that you wouldn't even notice w/o looking hard.

 

i hate that medical saying, 'true, true and unrelated'! i think it's all related!!!

[Debbie1]

Thanks for the replies. It is so interesting to see all of the common threads between our kids. Over the years, we have had so many different specialists look at so many different symptoms and they were all missing the bigger picture. When I meet with Dr. B. later this week, I am going to ask him whether keratosis pilaris is an immune system issue.

[Debbie1]

Debbie,

 

My dd had two occurances of heart racing. Valium did not reduce it. We went to the ER and they couldn't get her heart rate down. She had several more attacks for several days after this. Then it disappeared. She was having horrible intrusive thoughts at the time. It was a hard time but short lived. Neurologist wanted to give her Haldrol in ER. Idiot. Later got steroids and she went into complete remission within 5 days. Stayed on steroids for a month.

 

Did they ever figure out the cause of the heart racing? Was she still having the heart racing when she started steroids?

[Iowadawn]

Thanks for the replies. It is so interesting to see all of the common threads between our kids. Over the years, we have had so many different specialists look at so many different symptoms and they were all missing the bigger picture. When I meet with Dr. B. later this week, I am going to ask him whether keratosis pilaris is an immune system issue.

 

These whitehead-looking bumps--our son gets them, too. In fact, they are pretty prominent right now and his behavior is pretty bumpy. (9weeks post-IVIG). I have wondered about these as they get more, or less prominent. Hmmm. Makes me want to see what they are made up of!! Dawn

[P_Mom]

Besides the typical sinus tachycardia everyone gets with an adrenaline rush (fear, exercise, etc.)...another arrhythmia that tends to occur in younger people, even children, is called PSVT. It causes sudden onset rapid heart rate...that just ends.

 

Just a thought.

 

Also, my son gets those little bumps on his cheeks!

[smartyjones]

When I meet with Dr. B. later this week, I am going to ask him whether keratosis pilaris is an immune system issue.

 

please be sure to post what you find out - i'd be very interested.

[PANDAS_Denmark]

We have had many odd symptoms over the years that were eventually explained as part of PANDAS so I thought I would post our most recent one to see if there is any connection.

 

On Saturday night my daughter was trying to fall asleep when her heart started racing. She was uncomfortable and could not fall asleep so we paged the doctor before deciding whether or not to take her to the emergency room. Her pulse was faster than normal, but not dangerously high so the doctor said we did not have to the hospital yet - just keep an eye on her to make sure it returns to normal. The next day her pulse was fast the entire day. We went to the doctor and her blood pressure was normal. By yesterday evening, her pulse was back to normal. Has anyone experienced this?

 

One more unusual question - is keritosis pilaris an autoimmune condition? I googled it, but can't seem to find the answer. dd has the bumps on her cheeks that someone recently mentioned. The dermatologist we took her to a few months ago said it was keritosis pilaris and gave her skin creams to use. Everyone has told us it is an inherited skin condition, but no one else in the family has it. If it is a symptom of autoimmune issues, then I could understand why she has it.

 

 

Hi Debbie1 -

 

My son too has had many odd symptoms over the years, including his heart racing just as you describe it.

 

As 99% of the symptoms has allready been explained as part of PANDAS, I wondered if this heart racing could too ... and found this article : http://www.medicalnewstoday.com/articles/141710.php among others pointing that there might be a connection between CaM kinase II and heart beat :

 

""By examining single cells, we were able to see very basic mechanisms", Wu said. "The sinoatrial cells taken from mice with inhibited CaM kinase II were not able to facilitate calcium function, and thus, each cell's ability to beat slowed down. Since people with arrhythmias have a heart beat that is too fast, the opposite problem may be true -- there is too much CaM kinase II function, resulting in calcium overload."

 

The team will continue to study pathways by which CaM kinase II functions and affects the heart."

 

Best wishes -

[nevergiveup]

Debbie,

No after steroids no more heart racing. She was very sick with pandas at the time of heart racing. Her heart raced for over 4 hours and we couldn't get her heart rate down. I think in the end she had several different kinds of sedatives. I know the first sedatives didn't work at all, I believe ativan, valium and who knows what else. She was suffering from "compounding viruses", it was March and that winter she had 7 viruses in a row. At the time we swiched her to zithromax for the first time and it was her third dose and sometimes it can cause heart racing. Rare but it is one of the side effects. But later after the steroids everything cleared up. I remember it being very scary. If you go to the ER, after they rule out physical causes they will assume psych, so watch out for the ER psych consult. My daughter was so little and they asked her if she wanted to harm herself, or others. Also if she wanted to start fires. That was the end of the psych consult for me. I left the ER disgusted. My daughter then spent the next week asking me if she wanted to harm herself. She wasn't sure after the psych consult. Nothing like putting scary thoughts into a child's head that has OCD. The next time my daughter had a serious pandas attack we went straight to Dr. L's office, not the ER. I think I would agree with Denmark, it is caused by elevated Cam Kinase. Have you had the Cunningham tests?

 

 

 

 

 

 

 

 

Debbie,

 

My dd had two occurances of heart racing. Valium did not reduce it. We went to the ER and they couldn't get her heart rate down. She had several more attacks for several days after this. Then it disappeared. She was having horrible intrusive thoughts at the time. It was a hard time but short lived. Neurologist wanted to give her Haldrol in ER. Idiot. Later got steroids and she went into complete remission within 5 days. Stayed on steroids for a month.

 

Did they ever figure out the cause of the heart racing? Was she still having the heart racing when she started steroids?

[Debbie1]

PANDAS Denmark - that was a fascinating article! Thanks for posting.