Debbie1 Posted December 2, 2009 Author Report Posted December 2, 2009 Thanks for the warning about the ER. Luckily we have a friend who is a pediatric cardiologist who said the next time it happens we should just call him and he will check her out right away. We did have the Cunningham tests done. CamK was 137.
PANDAMOMMN Posted December 2, 2009 Report Posted December 2, 2009 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. Debbie, Have you looked into Sydenham's Chorea? There are both heart-related symptoms and the skin bumps as part of that condition (and it is very PANDAS-like). Here is a link to a Sydenham's symptom article: http://www.mdvu.org/library/disease/sydenhams/syd_sym.asp Just a thought.
kim Posted December 2, 2009 Report Posted December 2, 2009 some info on CamK and heart here too http://www.latitudes.org/forums/index.php?...;hl=cam+kinases
llmusicmom Posted December 2, 2009 Report Posted December 2, 2009 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. Debbie, Have you looked into Sydenham's Chorea? There are both heart-related symptoms and the skin bumps as part of that condition (and it is very PANDAS-like). Here is a link to a Sydenham's symptom article: http://www.mdvu.org/library/disease/sydenhams/syd_sym.asp Just a thought. I'm brand new here....and just when I thought I could breathe a sigh of relief, I'm reading your posts and worried all over again. My daughter started with the eye blinking and occasional facial tics in January 09, then full blown tics and chorea with 2nd diagnosed strep in June. 3rd strep in August and got her tonsils out in Sept. Facial tics all but gone, but still the arm/leg movements, which seem to have gotten worse over the last 2 weeks. And she has on occasion, tho I haven't kept track of it, complained of a racing heart. She had a terribly high fever for about 36 hours on 11/1-2 (104.5), tested neg for strep and flu, so given Zithromax for a presumed sinus infection. 3 days later, tested positive for Type A Flu and took the Tamiflu. Unfortunately pediatrician won't order the Titers as neurologist won't acknowledge PANDAS. Husband is reluctantly on board with the whole PANDAS concept, but refuses to let me get the CamKinaise done, and completely balks at steroids/prophylactic antibiotics. Now I am terrified about the heart racing and don't know what to do if/when it happens again. We are unemployed, just switched insurance and facing huge deductible to start the whole new round of tests....if the Sydenham's Chorea is a different diagnosis than PANDAS, how and when should I try to get that checked out? Oh, and yes, she has bumps, too-mostly around her mouth. Both times, the doc just called it impetigo and says the antibiotics will take care of it. she has also been diagnosed with keritosis pilaris by the dermatologist for the bumps on her arms - which I have also, and they say is incredibly common....
Debbie1 Posted December 7, 2009 Author Report Posted December 7, 2009 I met with Dr. B. last week - he does not think keratosis pilaris is an immune system issue. He said the heart racing could be related to PANDAS, although I am the first parent to report it to him.
smartyjones Posted December 8, 2009 Report Posted December 8, 2009 I met with Dr. B. last week - he does not think keratosis pilaris is an immune system issue. He said the heart racing could be related to PANDAS, although I am the first parent to report it to him. did he have any explanation for what it is and why it occurs?
careair Posted December 8, 2009 Report Posted December 8, 2009 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. My daughter has asthma and thus has had slight trouble with excema (maybe it's KP?). Typically summer sun and chlorine exposure helps, but this past summer she had a big patch of it around one side of her chest/under her arm . . . and the PANDAS appeared Aug. 28.
Worried_Dad Posted December 8, 2009 Report Posted December 8, 2009 Hi, Debbie: Our son also experienced this when he first got sick in Summer of 2007. At the time, he was diagnosed with acute rheumatic fever / Sydenham's chorea instead of PANDAS, so the fear was heart damage / rheumatic heart disease. Thank goodness, an echocardiogram showed no sign of that! From what I understand, the PANDAS kids rarely suffer heart damage (unlike the ARF kids). I'm wondering if the racing heart for PANDAS children is just another flavor of extreme anxiety / panic attack? Kind of surprised Dr. B has never had this symptom reported before.... I met with Dr. B. last week - he does not think keratosis pilaris is an immune system issue. He said the heart racing could be related to PANDAS, although I am the first parent to report it to him.
kim Posted December 8, 2009 Report Posted December 8, 2009 I'm thinking that it's another manifestation of elevated Camkinase. There is some info here. If anyone else sees what I think I'm seeing, would luv to hear it. http://www.latitudes.org/forums/index.php?...p;hl=Cam+kinase I've been trying to find a good supplement with cabbage and garlic!
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