We just got additional CaM Kinase results for our daughter

[sf_mom]

I thought I'd post this information to reemphasize how important it is to check everyone in the family. Rapid, Culture, ASO, Anti-DNAse-B

 

- Our 5 1/2 year old son: CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst which probably lowered the score)

 

- Our 2 1/2 year old son: CaM Kinase 148, Immune Deficiencies in addition to other abnormal labs

 

- Our 2 1/2 year old daughter: CaM Kinase 157, Immune Deficiencies in addition to other abnormal labs

 

We are currently checking ASO and Anti-DNAse-B on my husband and myself and should have those results within the week. If you remember our story, our kids attended a playdate in 2007 with two other little boys who we now know had active strep infections at the time, one boy ended up with confirmed RF and now PANDAS, we believe the other little boy also has PANDAS but has not been tested yet. This particular boy is showing all the emotional and physical symptoms of PANDAS. Our older son is only half related to his brother and sister.

 

 

-Wendy

[Kayanne]

I thought I'd post this information to reemphasize how important it is to check everyone in the family. Rapid, Culture, ASO, Anti-DNAse-B

 

- Our 5 1/2 year old son: CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst which probably lowered the score)

 

- Our 2 1/2 year old son: CaM Kinase 148, Immune Deficiencies in addition to other abnormal labs

 

- Our 2 1/2 year old daughter: CaM Kinase 157, Immune Deficiencies in addition to other abnormal labs

 

We are currently checking ASO and Anti-DNAse-B on my husband and myself and should have those results within the week. If you remember our story, our kids attended a playdate in 2007 with two other little boys who we now know had active strep infections at the time, one boy ended up with confirmed RF and now PANDAS, we believe the other little boy also has PANDAS but has not been tested yet. This particular boy is showing all the emotional and physical symptoms of PANDAS. Our older son is only half related to his brother and sister.

 

 

-Wendy

 

I've been wanting to tell you for a while, that I am really astounded at what has been happening with your family and friends...you guys really got a nasty strain....I'm really sorry! It must have felt like another kick in gut to get her CaM K results...even if you were expecting it.

 

I truly appreciate all of the great info that you continue to post on this forum...it is very informative.

 

Is there any way to determine what particular strain it is?

 

You may have alreadly posted this, and I missed it.....if so, sorry....sometimes this board move so fast...it's hard to keep up.

 

~Karen

[Megs_Mom]

Just wanted to add my heartfelt sympathy. I follow your story closely, and was afraid this would be the result. I admire your determination to get to the bottom of this, but I know how hard it must be to find that all three kids are testing high. Thinking of you.

[thereishope]

I'm sorry you got bad news again.Has your daughter been showing any signs of PANDAS or are you catching it really fast?

[dut]

SFMom - sorry but would you remind me what symptoms you are seeing in your 21/2 year old please. Your dd's cam score is similar to my 2 nearly 1/2 year old ds's score of 151%.. thanks..

[ajcire]

I wish it wasn't so expensive to test. I at this point would not be one bit surprised to find my 5 year old dd and my 2 1/2 year old son with high scores either... my 7 year olds was 141.. I so hope that one day in a not so distant future this becomes easy and cost effective to test... and of course hope that the test does conclusively show what it is supposed to be showing.

 

Hugs to you as you try to manage your way through all this.

[laurenjohnsonsmom]

Wendy,

 

I'm sorry that you have the "trifecta effect" going on. There's some crazy step strains out where you guys live. We just got the cam scores for our younger dauther (10 yrs.), yesterday. 127! She has moderate seperation anxiety, weather fears, OCD, body imaging. Her number correlates perfectly with her manifustation. We knew it would be low positive. I thought we got hit with a "super" strep strain since our entire family had positive aso/anti results but Dr. Latimer thinks it was a weaker strain that creeps in undetected (non-syptomatic) and brews in the body. Whatever the case Lauren had possible contributing factors (two back-to-back vaccines, lower IgG levels, which more than likely contributed to her BBB breach.

 

I try to not focus so much on the cause (we are to late to get a culture to identify a specific strain), bur focus on treating the current manifestation and to try to limit re-exposure by practicing all the good ideas other parents have contributed here (ie: toothbrush care, probiotics, etc), but it's in my thoughts all the time!

 

I hope you find and keep the strength to conquer this, you have my continued support.

 

Lynn

 

 

 

 

I thought I'd post this information to reemphasize how important it is to check everyone in the family. Rapid, Culture, ASO, Anti-DNAse-B

 

- Our 5 1/2 year old son: CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst which probably lowered the score)

 

- Our 2 1/2 year old son: CaM Kinase 148, Immune Deficiencies in addition to other abnormal labs

 

- Our 2 1/2 year old daughter: CaM Kinase 157, Immune Deficiencies in addition to other abnormal labs

 

We are currently checking ASO and Anti-DNAse-B on my husband and myself and should have those results within the week. If you remember our story, our kids attended a playdate in 2007 with two other little boys who we now know had active strep infections at the time, one boy ended up with confirmed RF and now PANDAS, we believe the other little boy also has PANDAS but has not been tested yet. This particular boy is showing all the emotional and physical symptoms of PANDAS. Our older son is only half related to his brother and sister.

 

 

-Wendy

[bmom]

If a child tests positive on Cam Kinase, but are showing very little signs of PANDAS, do you treat it and if so how?

[sf_mom]

Wow, thanks everyone for your heart felt thoughts. It is hard to hear all your children are affected but with some sleep I am determined to get them help. When I have a little more time I will list all their current symptoms with associated CaM Kinase results so you can get some perspective. We will treat our twins just based on current immune deficiencies.... not necessarily CaM results, behaviorally its so hard to tell at 2 1/2. We are still trying to figure where and who will treat them. We have an appointment with all three kids at Stanford Children's Hospital this Thursday, Dr. K will treat if necessary, etc. We do have a lot of Dr.'s following our case in hopes to glean some information.

 

Your support has been invaluable and I don't know if we would have been able to figure this all out if it had not been for everyone else's experiences posted. And, gosh, everyone knows I've had my days of basically lashing out in my exhaustion, fear, anger and frustration. BUT, with sleep I do bounce back and able to put things into perspective.

 

Grateful and thankful to everyone!!

[faith]

Wendy,

don't know if this helps at all, but really your children will be fine, if you don't mind my saying, their symptoms are not so bad. I know when they are little, we worry incessantly about them and what will be. Lord knows I did. What I think has saved me is that the years have gone by, (and you know I've been dealing with symptoms of everything for many years), but I've at least seen that whatever symptoms he's had, we've gotten thru it and things are not as horrible as I feared in the beginning. We've certainly had our low times, but they bounce back and things never got to the horrible place I thought. my son is generally happy, has friends, is healthy in other ways, is functional in school, does fairly well with his grades, can participate in sports if he wants, etc.......sure my heart is heavy for the times when things arent' faring aswell and I just wish and pray it would all go away, but we take one day at a time, and we manage it.

 

You're gonna be okay. Just as you feel that I should be less fearful of forging ahead on some things, I suppose I kind of wish you would try to relax a little more. between the both of us, there's gotta be a happy medium........... ...(and I know just zee place.......... .)..cheers!

 

Faith

[Buster]

If a child tests positive on Cam Kinase, but are showing very little signs of PANDAS, do you treat it and if so how?

 

Frankly, I'd say no. Elevated Cam Kinase II is correlated with PANDAS and SC but is not shown to be definitive for PANDAS. There 's just not enough data yet to say whether there are other things that can cause elevated Cam Kinase II (hence the research trial) -- or how repeatable the tests are -- or that just because you have the potential in the blood serum that it will cross the BBB.

 

CaM Kinase II should still be treated as just another piece of the puzzle. I liked Dr. K's comment on the AutismOne podcast where he said that antibodies to strep exotoxins count for him about 5-10%, clinical signs count a lot, response to prednisone burst is confirmatory for him. So he puts most of his weight on the clinical signs.

 

Regards,

 

Buster

[sf_mom]

Faith, I truly believe my inability to relax will provide my kids the best opportunity for success with their over-all health in life. Originally, when Corsa first got sick we were referred to a TS specialist and during one of my conversations on the phone with him he basically said that he was associated with one of the BEST mental health facilities in the country. He also said, there would never be a cure of TS in my son's lifetime and that they were developing better and better drugs to help with the condition (never once did he mention PANDAS). AND, what he was really saying was...... when your son becomes mentally ill and is riddled with OCD, depression and potentially bi-polar disorder down the road we can help!!!!!!!

 

My son isn't even 6 months post sudden-on set and we are fairly close to being 100%. That is pretty dynamic for an issue that was consider not curable in my son's lifetime. I do look at all my children with a heavy heart and again this is not some party I wanted to be invited too. BUT, I do know because of the co-morbid related illnesses I can not just sit back and relax. Additionally, children who have died from N1H1, didn't die from the flu they died because they were immune compromised or had a secondary infections. Believe me, if my twins only had high CaM Kinase, with no emotional and physical symptoms I would be hesitant to treat. BUT, they are immune compromised and we know they were exposed to something very resilient. We have tested their IgG subclasses more than once to confirm it wasn't just a lab error or virus that impacted their results. Dr. K has been very cautious in this regard because they are 2 1/2. So, it is with measured caution we move forward with regard to their treatment.

 

I do know my kids will be fine and it won't be without a lot of effort on our part. I post our experience, in hopes others who are scared or worried might have the courage to now move forward in a similar fashion knowing they can have success. Unfortunately, our kids are paving the way for millions. My new motto 'expect nothing less than 100% recovery' and keep the faith that its working (no pun intended).

 

-Wendy

 

 

 

Wendy,

don't know if this helps at all, but really your children will be fine, if you don't mind my saying, their symptoms are not so bad. I know when they are little, we worry incessantly about them and what will be. Lord knows I did. What I think has saved me is that the years have gone by, (and you know I've been dealing with symptoms of everything for many years), but I've at least seen that whatever symptoms he's had, we've gotten thru it and things are not as horrible as I feared in the beginning. We've certainly had our low times, but they bounce back and things never got to the horrible place I thought. my son is generally happy, has friends, is healthy in other ways, is functional in school, does fairly well with his grades, can participate in sports if he wants, etc.......sure my heart is heavy for the times when things arent' faring aswell and I just wish and pray it would all go away, but we take one day at a time, and we manage it.

 

You're gonna be okay. Just as you feel that I should be less fearful of forging ahead on some things, I suppose I kind of wish you would try to relax a little more. between the both of us, there's gotta be a happy medium........... ...(and I know just zee place.......... .)..cheers!

 

Faith

[sf_mom]

I agree with Buster. Clinical presentation, lab work and CaM Kinase as a confirmatory test to everything you may already know.

 

-Wendy

 

If a child tests positive on Cam Kinase, but are showing very little signs of PANDAS, do you treat it and if so how?

 

Frankly, I'd say no. Elevated Cam Kinase II is correlated with PANDAS and SC but is not shown to be definitive for PANDAS. There 's just not enough data yet to say whether there are other things that can cause elevated Cam Kinase II (hence the research trial) -- or how repeatable the tests are -- or that just because you have the potential in the blood serum that it will cross the BBB.

 

CaM Kinase II should still be treated as just another piece of the puzzle. I liked Dr. K's comment on the AutismOne podcast where he said that antibodies to strep exotoxins count for him about 5-10%, clinical signs count a lot, response to prednisone burst is confirmatory for him. So he puts most of his weight on the clinical signs.

 

Regards,

 

Buster

[faith]

I agree with Buster. Clinical presentation, lab work and CaM Kinase as a confirmatory test to everything you may already know.

-Wendy

 

 

 

wendy,

I could be reading it wrong, but I don't think that's exactly what he said.. You are very confident in the cam k test, but I do think you hve to be careful of stating to others that it is a 'confirmation'.....

 

 

Also....what is the situation for your children is not the case for everyone else, all cases are unique in their own way and there are alot of variables and circumstances to consider for each of our kids. I appreciate your dedication and sharing of your experience, truly I do, but somehow feel compelled to say that 100% symptomless may not be possible for all our kids, and if that be the case, we may have to, yes, "relax", just a bit and thank God for the beautiful and wonderful creatures that they are, JUST the way they are, and not spend every waking moment worrying about the worst case scenerio. your child is no where near that. I hope everyone gains as much knowledge as they can in order to help their child, but remember, and we've said this before, there is no 'one size fits all'... that's it. sorry, I'm just speaking for myself here, I'm doing the best I can.

 

Faith

[sf_mom]

I am not sure what is up... just confirming his perspective to reemphasize Dr. K's position on clinical presentation for those trying to figure this out for themselves. So, yes, exactly what Buster was saying.

 

AND, I just happen to believe my children are sick 'just sick' and I'm not worried about the worst case scenerio anymore because there is way to make them better that is working. I am focused on making them better in the best possible way I know how right now. If I can share what is working and it works for others that is great. I will be forever grateful to those Dr.'s that have helped my family.

 

And, you are right, one size does not fit all. BUT, please grant me the opportunity to say 100% is achievable..... Saving Sammy is great example and we should be focusing on those successes.

 

-Wendy

 

 

 

I agree with Buster. Clinical presentation, lab work and CaM Kinase as a confirmatory test to everything you may already know.

-Wendy

 

 

 

wendy,

I could be reading it wrong, but I don't think that's exactly what he said.. You are very confident in the cam k test, but I do think you hve to be careful of stating to others that it is a 'confirmation'.....

 

 

Also....what is the situation for your children is not the case for everyone else, all cases are unique in their own way and there are alot of variables and circumstances to consider for each of our kids. I appreciate your dedication and sharing of your experience, truly I do, but somehow feel compelled to say that 100% symptomless may not be possible for all our kids, and if that be the case, we may have to, yes, "relax", just a bit and thank God for the beautiful and wonderful creatures that they are, JUST the way they are, and not spend every waking moment worrying about the worst case scenerio. your child is no where near that. I hope everyone gains as much knowledge as they can in order to help their child, but remember, and we've said this before, there is no 'one size fits all'... that's it. sorry, I'm just speaking for myself here, I'm doing the best I can.

 

Faith