? for a friend. High CamKinase in her kids with Autism Spectrum Disor

[dabel]

Hi -

 

My son has recently been diagnosed with PANDAS and we are less than a week out from IVIG. I am pretty new to the PANDAS world so I would like to ask you more experienced here for your opinion.

 

When I heard about Dr. Cunningham's study I wanted to send my child's sample in to get these levels on him. We are still waiting for his Cam results. My best friend has two boys with issues. A 16 yo with Aspergers and an 11 yo with PDD. The 11 yo completed 3 yrs of chemo etc for leukemia in this last year. The 16 yo cycles - depression, suicidal thoughts, ADHD, brain fog, extreme irritability, etc He had issues as a little boy but I saw a big change in him at 5. The 11 yo is like high functioning autistic but cycles with symptoms. Both kids have had health issues for a long time. They battled one ear infection after another starting at age 3 months and both ended up with tubes at about one year. Croup was an issue etc. There have been documented strep infections also.

 

I suggested that she send her kids in for the study too. I just thought it would be interesting to see. Well, she got the results and does not know what to think. The 16 yo Cam Kinase II is 186 and the 11 yo is 169. I know the numbers indicate PANDAS but she wants to know how much weight you put on these tests. She thinks, after looking into this disorder, that it is quite possible that her kids have it. She is not sure what to do as this is such a different direction than they have taken. These kids have had every kind of test done known to man! Adrenal function, chromosome, sleep analysis, etc. If they do have PANDAS these tests results may be interesting to all of us.

 

Should she take these tests pretty seriously as in - yes both your kids have PANDAS and get to a GOOD doctor ASAP? She lives in NW Wisconsin. Are their any good doctors in the Twin Cities (Mpls/St Paul) area? She has talked about going down to see Dr K. This is a possibility but if there was another doctor closer - I couldn't find one listed on that thread.

 

Thanks for your input on this - it will help my friend greatly!

[coco]

I would strongly suggest to your friend to make the trip to see Dr. K. In the meantime you can consult with him via phone and decide the next steps. If there is even a chance that these kids have pandas, (which the cunningham tests certainly indicate) they get can treated and can get better. It can change the course of their lives and your family. My dd was diagnosed with pddnos (not really meeting criteria, but had to put something down in order for her to receive services at school) at age 5 she is now 9 and this spring we were on the pandas trail...FINALLY! She has received steroids, abx and ivig treatment and is doing much better...rough road, but I will take that versus the other diagnosis. (PM me if you like and I would be happy to speak with you or your friend.) GOOD LUCK!

[kim]

dabel,

 

You mentioned "chromosome". If there has been genetic testing, do you know if the boys were positive for Jak2 or the Philadelphia chromosome? Just curious with the leukemia connection. I know of someone with this mutation and we have discussed some of the overlaps. She is currently undergoing weekly IVIG to keep leukemia at bay.

[faith]

hi dabel,

...a "friend" huh?... ............. just kidding.

 

Are there any tics or ocd in these boys' symtoms? I'm wondering if this cam kinase is basicall showing that this is autoimune? asbergers and pdd are on the autism spectrum and I think that DAN docs beleive that autism is somewhat autoimune, I only heard my DAN doctor say that once (my son is not autistic, but I went to one to get the kind of tests and treatments that DAN docs do, hoping it would help with my son's tics). so I'm wondering if most on the autism spectrum would show hi cam k......just a thought.

 

I think you friend should go by the clinical picture of her children's symptoms, and of course, how far she wants to go in the way of treatment., in other words, she would want to gauge the severity of her boys' symtoms to how and what she'd be open to as far as treatment goes. I have asked Dr. Cunningham and her assistant directly if these tests were a definitive test for PANDAS. They both told me it is not, it is still in the research stages, and it was not supposed to be a diagnostic tool to test for PANDAS. I mean, maybe it will be, but right now it is not, so I do think we have to be careful of saying tht it is a test for PANDAS. Right now they are compiling the data, and our kids are contributing to the research and results. They are basically testing for the cam kinase and the antiodies that the kids have, they are not exactly sure exactly what it indicates. They have a hypothesis, I'm sure, and know what they are looking for, but they are still studying the results. I have asked Dr. Latimer what the antibody numbers mean, and she said "they don't know yet". For me, I think it is certainly part of the picture, but only a part, you still have to go by the 'clinical picture'. That's why I like to ask the parent if they feel the number seems to correlate with their child's symptoms, just to kind of do our own little research amongst ourselves and get an idea if this all kind of fits. Do you or your friend think these numbers correlate to the severity of her boys' symptoms? with those numbers, it would seem they'd be in the upper moderate category?

 

don't know if any of this helps, but its just my own offering of opinion.

 

Faith

[dabel]

dabel,

 

You mentioned "chromosome". If there has been genetic testing, do you know if the boys were positive for Jak2 or the Philadelphia chromosome? Just curious with the leukemia connection. I know of someone with this mutation and we have discussed some of the overlaps. She is currently undergoing weekly IVIG to keep leukemia at bay.

 

 

Kim,

 

I will ask what the abnormality that was found is called. I do know that the doctor said it was rare and that they think it is associated with blood cancers. Did the person you know end up with leukemia too? Or is the IVIG to not get it?

 

DeAnn

[kim]

DeAnn,

 

I think I mispoke. I think she is getting PEX with some type of light/photo therapy involved (not IVIG). My understanding is that she has sort of a preleukemia condition now. I know there is significant inflammation involved with her symptoms. Last I heard the treatments seemed to be working well.

[peglem]

I think insofar as PANDAS interferes with normal development, it can cause autism. However, the thing I have been thinking about with the CamK scores is that they don't know if or what other things might also cause increased activity. This is as far as I know...hope somebody will correct me if that's wrong. Especially with the 11yo, who has some other health issues- I'd wonder if those are related, or if they stem from the same cause or what...It definitely complicates the clinical presentation. How did the boys do with the antibody tests (anti-lyso, anti-tubulin, D1, D2?)

[dabel]

I think insofar as PANDAS interferes with normal development, it can cause autism. However, the thing I have been thinking about with the CamK scores is that they don't know if or what other things might also cause increased activity. This is as far as I know...hope somebody will correct me if that's wrong. Especially with the 11yo, who has some other health issues- I'd wonder if those are related, or if they stem from the same cause or what...It definitely complicates the clinical presentation. How did the boys do with the antibody tests (anti-lyso, anti-tubulin, D1, D2?)

 

 

Peglem,

 

Here are the other test results. Thank you so much for your input on this. I was kind of thinking like you in that how do we know that other things don't raise those levels as well. Maybe this has been researched - like I said I am new to this world and am just learning. This thing with Bonnie's kids perplexes me. What are the chances of us both having PANDAS kids? Just seems crazy.

 

16yo 11yo

 

anti - Lysoganglioside 640 320

 

anti tubulin 1000 500

 

anti dopamine 1 2000 2000

 

anti dopamine 2 4000 2000

 

Let me know if this sheds more light on this.

 

DeAnn

[dabel]

I think insofar as PANDAS interferes with normal development, it can cause autism. However, the thing I have been thinking about with the CamK scores is that they don't know if or what other things might also cause increased activity. This is as far as I know...hope somebody will correct me if that's wrong. Especially with the 11yo, who has some other health issues- I'd wonder if those are related, or if they stem from the same cause or what...It definitely complicates the clinical presentation. How did the boys do with the antibody tests (anti-lyso, anti-tubulin, D1, D2?)

 

 

Peglem,

 

Here are the other test results. Thank you so much for your input on this. I was kind of thinking like you in that how do we know that other things don't raise those levels as well. Maybe this has been researched - like I said I am new to this world and am just learning. This thing with Bonnie's kids perplexes me. What are the chances of us both having PANDAS kids? Just seems crazy.

 

16yo 11yo

 

anti - Lysoganglioside 640 320

 

anti tubulin 1000 500

 

anti dopamine 1 2000 2000

 

anti dopamine 2 4000 2000

 

Let me know if this sheds more light on this.

 

DeAnn

 

That list looks different before and after posting. The first number is the 16 yo and the second number for each is the 11 yo.

[peglem]

Well, what I was thinking is that if any of those numbers were rather elevated, that might skew things more towards PANDAS. But, these scores look pretty tame. Given the history with illness- it might be a goods idea to have the immune systems checked, but doesn't chemo reduce immune function?

Well, my daughter is severely autistic-her dr. and I think because of PANDAS. What I expect after treatment for PANDAS (if that ever happens!) is that she will still be severely autistic, but perhaps regain some of the things that have been lost (like speech function, and some motor skills). But also, I think she will be able to benefit from therapy and with time become more functional. Also, I expect the aggression and self injury that we see so much in exacerbations to be greatly reduced. It has been hard to sort out what is lack of development and what is PANDAS based (and in a way, its all PANDAS based), but I would think the "streppy" behaviors (markers to get her checked for strep) would diminish with PANDAS treatment, and in the final analysis- those are the very things that are interfering with her learning and functioning. I guess I went through all that so you can see the thought process i went through to decide whether to pursue the PANDAS angle or not. I think your friend will need to try to sort things out as far as deciding what to do.

[thereishope]

In regards to chemo, that greatly compromises your immune system. I don't know how long it takes for the immune system to "heal itself" after chemo is completed. When a child gets vaccine like chicken pox, it is specifically said that a child should not be living in the same house as an immune compromised individual (like one receiving chemo), but I can't remember the time frame. Maybe 6 months? That is soley a guess.

 

Like others have said it is hard to know what else can make certian numbers rise. This is still in a research phase. She can try calling/emailing Cunningham's office and perhaps they can explain things better. When she sent in the kids' samples, did she supply them with a health history of the kids?

 

She can do hings liek take the kdis in for strep tests to make sure they are in the clear. I would alos think it would be beneficial to either see a PANDAS expert in person or via the phone. Both Latimer and Dr K will be speaking at the Autism One conference in May. For that reason, I would pick one of them to seak to. Perhaps they have more info than what we are aware of.

 

What I would be curious is the start a thread for people with a diagnsois of autism and PANDAS to list their symptoms and test results and compare yoursleves as a subgroup. That may provide insight as well.

[EAMom]

I agree with Vickie about getting strep tests (throat cultures)...I also think a workup by a good immunologist is in order (like Dr. B.).

 

The 16 yo cycles - depression, suicidal thoughts, ADHD, brain fog, extreme irritability, etc He had issues as a little boy but I saw a big change in him at 5. The 11 yo is like high functioning autistic but cycles with symptoms. Both kids have had health issues for a long time. They battled one ear infection after another starting at age 3 months and both ended up with tubes at about one year. Croup was an issue etc. There have been documented strep infections also.

.

 

I am very suspicous of PANDAS with the combination of history/symptoms and CaM scores.