mom md Posted June 3, 2009 Author Report Posted June 3, 2009 We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this.
mom md Posted June 3, 2009 Author Report Posted June 3, 2009 We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this.
Suzan Posted June 3, 2009 Report Posted June 3, 2009 We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this. Hi Mommd, I am curious to know who your doctor is in Charlotte if you don't mind sharing that. I am curious about the cardiac link, if any. My daughter has a PVC and I was wondering if it might be related somehow. Susan
mom md Posted June 3, 2009 Author Report Posted June 3, 2009 James Nelson, MD at presbyterian neurology. He is well versed in his PANDAS knowledge. The docotr that diagnosed Carter' though and ordered the ECHO was Dr. James Lee at piedmont neuropsychiatry. The cardiologist we saw was Dr. Craig Greene at presbyterian cardiology. Hope this helps. We have an appointmant tomorrow with our pediatric neurologist here in Charlotte. It was supposed to be a 4 week follow-up to see how we were doing(he recommended Clonidine to control Cartre's movements which I never filled). Instead we went to DC to arrange IVIG or PEX. I was tired of antibiotics and messing around. I think if I had pushed him he would have ordered the IVIG but he wanted me to wait 4-6 months. I am going in tomorrow to fill him in on what we are doing and also to keep a relatinship with someone in Charlotte. When I am there I will try to get him to explain to me SC vs PANDAS etc and should these kids be getting cardiac work-ups. I admit, this whole thing is very confusing. My guess is if your child has just tics, anxiety, OCD you probably just need someone to listen for a murnur but if you have chorea you might want an ECHO. I will try to clarify this. Hi Mommd, I am curious to know who your doctor is in Charlotte if you don't mind sharing that. I am curious about the cardiac link, if any. My daughter has a PVC and I was wondering if it might be related somehow. Susan
EAMom Posted June 3, 2009 Report Posted June 3, 2009 If anyone has the full-text version of this article http://www.ncbi.nlm.nih.gov/pubmed/16875742 Figure 3a. is pretty interesting. Basically both SC and PANDAS have elevated CaM kinase II levels. SC elevations tend to be in the 190-250% (average 220%) range. PANDAS elevations (during an exacerbation--acute) tend to be lower overall than SC kids, in the 110-195% range (average 145%). Normal human sera looks like it is average 108% (roughly). PANDAS kids (convalescent--not in an exacerbation) tend to have values similar to normal human sera. On the other hand, kids with (non-PANDAS) tics and OCD tend to have lower CaM kinase II levels (even below that of Normal human sera). The (non-pandas) tic kids ranged from 50-108% (average was 87%). If you have your blood run through Dr. Cunningham she'll send you a copy of the article. I think I have a PDF version somewhere...but I just can't find it right now! Claire...I'll be very interested to know what your son's CaM kinase II levels are. Since he has chorea, I would guess that his levels would be pretty high, close to the SC kids.
michele Posted June 3, 2009 Report Posted June 3, 2009 I just got the box today from Cunningham. Did anyone here have any issue with getting the lab to draw the blood with no order? Did you have to pay or show insurance card? Also how many vials need done? She sent like four. That seems like a lot of blood. I was surprised there was no orders just the study info. So she actually shares with you the results? That is so cool. I can't wait to see the results. D If anyone has the full-text version of this article http://www.ncbi.nlm.nih.gov/pubmed/16875742 Figure 3a. is pretty interesting. Basically both SC and PANDAS have elevated CaM kinase II levels. SC elevations tend to be in the 190-250% (average 220%) range. PANDAS elevations (during an exacerbation--acute) tend to be lower overall than SC kids, in the 110-195% range (average 145%). Normal human sera looks like it is average 108% (roughly). PANDAS kids (convalescent--not in an exacerbation) tend to have values similar to normal human sera. On the other hand, kids with (non-PANDAS) tics and OCD tend to have lower CaM kinase II levels (even below that of Normal human sera). The (non-pandas) tic kids ranged from 50-108% (average was 87%). If you have your blood run through Dr. Cunningham she'll send you a copy of the article. I think I have a PDF version somewhere...but I just can't find it right now! Claire...I'll be very interested to know what your son's CaM kinase II levels are. Since he has chorea, I would guess that his levels would be pretty high, close to the SC kids.
EAMom Posted June 3, 2009 Report Posted June 3, 2009 Hi Michele, we didn't have a problem but we were working with our immunologist who was willing do IVIG based on Cunnigham's results. I don't think if we had just gone to the lab without the immunologist on board, that we would have had good luck. So, talk to your doctor. Also, we were dealing with Stanford Univ. Hospital (Lucile Packard Children's Hospital actually) which apparently is used to dealing with all this researchy stuff....shipping samples off to other places etc..
mom md Posted June 3, 2009 Author Report Posted June 3, 2009 I think any lab will probably draw the blood since it is for a study. I had no issue. I will be anxious to to see what our CAM kinase II levels are. Maybe it will solve the SC vs PANDAS question, or at least help. Claire
michele Posted June 3, 2009 Report Posted June 3, 2009 Ditto I would ike to see full text version of this article if anyone has the link. Thanks, Michele If anyone has the full-text version of this article http://www.ncbi.nlm.nih.gov/pubmed/16875742 Figure 3a. is pretty interesting. Basically both SC and PANDAS have elevated CaM kinase II levels. SC elevations tend to be in the 190-250% (average 220%) range. PANDAS elevations (during an exacerbation--acute) tend to be lower overall than SC kids, in the 110-195% range (average 145%). Normal human sera looks like it is average 108% (roughly). PANDAS kids (convalescent--not in an exacerbation) tend to have values similar to normal human sera. On the other hand, kids with (non-PANDAS) tics and OCD tend to have lower CaM kinase II levels (even below that of Normal human sera). The (non-pandas) tic kids ranged from 50-108% (average was 87%). If you have your blood run through Dr. Cunningham she'll send you a copy of the article. I think I have a PDF version somewhere...but I just can't find it right now! Claire...I'll be very interested to know what your son's CaM kinase II levels are. Since he has chorea, I would guess that his levels would be pretty high, close to the SC kids.
colleenrn Posted June 3, 2009 Report Posted June 3, 2009 I have the full article in pdf file, but I have no idea how to post it. I know how to email it as an attachment. Can anyone help b/c I would be glad to pass it along if I can figure out how. Colleen
P_Mom Posted June 3, 2009 Report Posted June 3, 2009 Thanks Mom MD! I appreciate the attempt to clear it up. I fully get that these conditions are similiar in that they are the same disease process....autoimmune reaction to strep, however to say they are the same disease? Don't get it...to me it is like saying all autoimmune diseases are the same (Lupus, diabetes, neuropathy, etc., etc). They clearly are not......they are just the same process, autoimmune. Susan, Your daughter's PVCs (premature ventricular contractions), very likely have nothing to do with PANDAS. A PVC or PAC is just an early, extra beat, it does not indicate damage, almost everyone has them from time to time. In fact, PVCs, and especially PACs, in a structurally normal heart, are almost always a harmless condition. Damage from RF involves the heart valves and can be very serious. But, like I mentioned in my earlier post, I guess I'll just add a cardiac check to my list. I agree it is better to be safe than sorry.
P_Mom Posted June 3, 2009 Report Posted June 3, 2009 Edit again. Things are moving really slowly and I think I am being impatient.
Kayanne Posted June 3, 2009 Report Posted June 3, 2009 I don't have the knowlege that you all seem to have about the particulars of PANDAS...since this is so new. However, I personally think that I will try to get a cardiac workup for my daughter because strep is nasty, and can do many things to the body...and one well know effect is heart issues. Just because she has PANDAS, doesn't mean I should preclude all other possible side effects of a step infection. My sister's daugher had a strep infection that shut her kidney's down when she was in the third grade. Six years later, she had to have laparoscopic surgery because she had tachycardia (rapid heart beat). Of course, there is no proof that the strep caused this; however now that my daughter's PANDAS has surfaced, my sister and I have been reading more about it, and it makes one think.... Another anecodotal line that my mind has been drawing recently is the higher incidences of mitral-valve prolapse among people who have anxiety and panic disease (The Anxiety Disease by David V. Sheeehan, MD, pg.82). I do not have a science/biology background, and if I can see a possible relationship...I'm sure that researchers are exploring the possibility of a link.
colleenrn Posted June 3, 2009 Report Posted June 3, 2009 Kayanne, I was wondering, if you don't mind, if your sister's children also have PANDAS. My children do and two of my sister's children do also. I have always wondered how many kids with PANDAS have 1st cousinsd with it also. Colleen
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