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Our Cam Kinase Score results...


faith
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My son's cam kinase number is.............179................ :P

 

(SFmom, you were only off by 9 pts!, lol!)

 

So I guess I'm officially in the club? Where's the tiki bar?............. ^_^

 

 

To refresh, my son is 10 1/2 years old and has had tics since 3 1/2. I have learned from this board that he has pretty much all of the symtoms you describe in your kids. OCD, some mild, but had a bout of repetitive erasing tht sent us to seek therapy. but I see he's had it all, separation anxiety (still a big one), high irritability, tantrumy when irritated or does not get his way, big time management problems, sensory issues with clothes, hair, etc....its all there, I just never knew it was all related. So all in all, I feel like this score puts him pretty much in sync with what his symptoms are in comparison to what I've learned about some of your kids. I feel the number correlates with his symptoms. he is in the upper range of PANDAS it seems?

 

wondering tho if this has anything to do with how long they've had this problem? I do have our appt. set with Dr. Lattimer next week. I am very nervous about what his course of treatment will be. he needs some intervention, I cannot let him go with this vocal. I am scared it is too late for him to be helped if he has been dealing with this for 7 years now. I've only had one documented case of strep at 7 yrs. old. He is low titers and negative for strep after that. He has however had several 24 hour virus (fever, vomiting, achy) once or twice a year..... Mostly I have been looking at the tourettes symptoms, and employing natural treatments, i.e. dietary restriction, supplements, igg testing, naturopath, Dan doc, NAET, chiropractic, I've done it all. Tic wise, this is his worst year. I never felt like anything I did, except for possibly keeping dietary junk out of his diet, has helped in the long term.

 

Currently he is on Augmentin 500 mgs. twice a day as I got our ped to prescribe it for what I thought looked like strep in his throat. swab and culture were negative. I also had a sore throat and wet cough the past week and took abx, my swab and culture were also negative. He just finished the 10 day course and I am going to renew it today and contine until I see Dr. L...at least I will be able to give feedback on it. He is still however ticcing. I don't think I notice anything dramatic (as they say) happening...maybe a little less, but neverthless still there..

 

Thanks to all of you that helped me get this in motion.

 

Faith

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Faith, I think you should expect nothing less than symptomless for your son!!!!!!!!!!!! He deserves that after all these years of being misdiagnosed. I would proceed with PEX or IVIG immediately and continued high does of antibiotics of Augmentin or Azthromycin. It may take as long as two years to see full recovery but it is now your job to keep his immune system as quite as possible. Those TICS will go away.

 

 

-Wendy

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Wow, Faith. A chill ran down my spine when I read your post. I didn't expect it to to be as high as it was...179? My younger son was 162 and Dr. L considered that to be very high. That does put him upper, upper half PANDAS. As Dr. K said....the longer the child has PANDAS....it can "turn into" TS. (but with a different cause)

 

 

However...so glad you got on the right track!!!! That is why I encourage everyone who is dealing with a straight TS diagnosis to get tested....your children may be misdiagnosed...and then helped with the right treatments.

 

Faith...it is not too late....he will improve, it may take longer, but, he'll get there!! Dr. L will help you....I can almost guarantee she will try a round of steroids first....however, given his high Cam scores...she may go straight for IVIG. Please let us know.

 

Welcome to the club! :P

 

Kelly

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Faith,

 

I'm beginning to think that it was not a good idea to separate the TS and PANDAS forum. Personally, i think "subsets" of both disorders will still be identified, but a lot to be learned from the autoimmune standpoint for people who think TS and PANDAS don't have a lot in common in some (many?) instances. I'm glad you have at least a partial answer. Don't know if you saw the thread where I posted the info from one of Cunningham's studies about "epitopes" from strep and enteroviruses? I suspect as time goes on there may well be antibodies involved in viral infection identified in "PANDAS" kids as well. We already have posts where viral infections cause exacerbations.

 

bolding mine

http://www.pnas.org/content/89/4/1320.abstract

 

The development of autoimmunity in certain instances is related to infectious agents. In this report, cytotoxic monoclonal antibodies (mAbs) that recognize epitopes on both enteroviruses and the bacterium Streptococcus pyogenes are described. Murine anti-streptococcal mAbs that were crossreactive with streptococcal M protein, human cardiac myosin, and other alpha-helical coiled-coil molecules were found to neutralize coxsackieviruses B3 and B4 or poliovirus type 1.

 

 

Kelly

 

Do you have any more info on this remark?

 

As Dr. K said....the longer the child has PANDAS....it can "turn into" TS. (but with a different cause)
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You know I have to say I'm a little PIST this morning. This is NOT some club I choose to be a member of willingly. I'm angry AT all the Dr.'s who pooh, poohed Faith son's symptoms. I'm angry at all the individuals that have treated Faith and her son with disrespect because they thought it was a behavior that was controllable or disruptive. I'm angry that we are told to believe that there is an acceptable baseline line of symptoms that some are told is fine. I angry at all the Dr.s that are not helping currently. I angry at the MEDICAL COMMUNITY for not paying attention for the last twelve years. I am angry, that this disease has changed my focus and I can hardly get work done or do the things we enjoy as a family. I am angry about all the misinformation out about PANDAS. I am angry that some are not able to afford or have access to proper treatment.

 

NEED I go on. THIS IS NO JOKE and there are millions that continued to be afflicted. SOMETHING like 11,000,000 with Tourette's and OCD in the US. WHO KNOWS HOW far reaching this is but I am not so sure it doesn't reach into most of our Autistic Children. MY FRIENDS SON LOOKS like an Asperger child... he is slowly deteriorating into a child I don't know.

 

I am so ANGRY that even posting this on the forum hasn't helped.

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You were right, Faith, our kids are certainly pretty similar! Sean's score was 193 and I was shocked, but I think he's had this for years as well.

 

I'm glad you are seeing Dr. Latimer. She may or may not recommend PEX. She didn't in my son's case because even with his high CamK score, he is functioning pretty well so we are doing steroids for a month to see where that takes us.

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Kim...sorry, I don't. I just know he mentioned it to us....several times. (but, like I said, different causes)

 

He will answer e-mail questions....just send him one inquiring about that and I am sure you will get a response ASAP.

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Faith, I am glad you have something concrete to work with now!

 

I have to say that I am now almost more nervous to do this. I don't know what I will do if it is confirmed, where I will go with that. Do they give you something that clearly explains it all that if I needed to show to a dr. not familiar with the test that they would understand what the results mean?

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You know I have to say I'm a little PIST this morning. This is NOT some club I choose to be a member of willingly. I'm angry AT all the Dr.'s who pooh, poohed Faith son's symptoms. I'm angry at all the individuals that have treated Faith and her son with disrespect because they thought it was a behavior that was controllable or disruptive. I'm angry that we are told to believe that there is an acceptable baseline line of symptoms that some are told is fine. I angry at all the Dr.s that are not helping currently. I angry at the MEDICAL COMMUNITY for not paying attention for the last twelve years. I am angry, that this disease has changed my focus and I can hardly get work done or do the things we enjoy as a family. I am angry about all the misinformation out about PANDAS. I am angry that some are not able to afford and have access to proper treatment.

 

NEED I go on. THIS IS NO JOKE and there are millions that continued to be afflicted. SOMETHING like 11,000,000 with Tourette's and OCD in the US. WHO KNOWS HOW far reaching this is but I am not so sure it doesn't reach into most of our Autistic Children. MY FRIENDS SON LOOKS like an Asperger child... he is slowing deteriorating into a child I don't know.

 

I am so ANGRY that even posting this on the forum hasn't helped.

 

I have sooo, been there with all of that anger, and more. But, I think the "welcome to the club" statements were offered in support and recognition of the feelings we share with Faith...knowing that the CamK results give her affirmation that she is on the right track for her child, especially when she has encountered so many professionals that have disagreed. I know those professionals sometimes made me doubt what I knew was happening to my child, made things less clear and more hopeless. Getting the evidence was bittersweet for me...So good to know that I am not crazy, that I have been right, but a kind of sick feeling that my child has been suffering so much for so long that I just couldn't get people to see. Believe me, nobody on this forum is yucking it up over PANDAS or celebrating the disorder. But, at least we feel a kinship and recognition of each other's feelings that we seldom find elsewhere.

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Faith:

 

I just wanted to say that Dr. K told us during our phone consult that the healing process did not depend on how long our child had PANDAS, but more on whether or not he/she had gone through puberty yet. He said that didn't matter if the child had symptoms for 5 years versus 5 months in terms of healing from IVIG. He also said that he suspected that many children with sudden onset later on (past the age of 7) probably had milder symptoms that went unnoticed in the past.

 

I hope this eases your mind!

 

Elizabeth

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Yes...I meant "congratulations" in a "ha ha those doubting docs were wrong and you were right" kind of way...and "now that you finally know what is going on with your child we can finally start to take some concrete action to address the problem correctly"...which are both good things. ;)

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I know what you all are saying. we all have a mix of anger, frustration, and now and again we throw in a little humor to break it all up. we have to. its not all bad, its not all good. maybe we are all just moving the crowd in the right direction. I am as floored as anyone about where my son fits in. I had long ago figured this was not my son's problem, but am disappointed in myself for not finding out more about it. I can't believe all the symptoms are there and always have been. really its taken me a while to see all the things as a 'whole' as opposed to just a bunch of frustrating 'separate issues' that my son has. sometimes when I see him not doing well, or just not 'succeeding' and I compare him to the next 'neuro-typical' kid, I get so down, thinking, gosh, why is everything so hard here, this whole thing has really affected what my son can do, some joys that I should have are really not there. but then there is so much good that my son has, and that so many kids with worse afflictions don't. ...... so much to be grateful for, but so much worry about anyway.

 

well, like someone here mentioned before, (you know who you are), the tide is changing. I think it will take a while for this whole PANDAS as an autoimmune issue to be mainstreamed and accepted. there's alot of variables here, its really not so black and white. we're talking about neurological and mentally based disorders now being exposed as a metabolical or biomedical problem. that's going to be hard for alot of people in the medical/mental health profession to grasp. we gotta be patient, but yea, some don't have to be downright "disbelievers". ;) In the meantime, we are finding help, and all you guys here are helping alot of parents, wether you know it or not. I think SFmom was the first to give me a little nudge, one of her posts got my attention, like it was meant to be, because I was not looking in this direction. I don't know what will happen now, but I pray that this was the answer to my prayer that I always pray..I ask, "God, please show me the way, show me how to help my son, please just tell me what to do."........... ;)

 

 

Faith

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