CaM Kinase 142

[Betty04]

Hi,

 

I have not posted in a while but have been following the forum. Our rollercoaster ride with my son's tics have continued and after sharing an update with Diana she suggested I have a CaM Kinase level done. Well we got the results this morning and he is at 142. The labs were taken while on 250mg daily of Azithromycin that has seemed to stop being effective. If you read my previous post you will see that my son is young (now almost 5 years old) and not a typical PANDAS story (if there is one!).

 

We have been unsuccessful with diet restrictions anmd supplements but antibiotics have always seemed the most helpful. My son's tics first appeared as blinking in the car at 20 months after a sinus/ear infection that lasted several weeks. I had the same infection for which my ENT was ready to send me to the hospital so it was a "super bug!" My son's tics exploded after a flu shot before his 3rd birthday. He responded to clindamycin and we prophalatically removed his tonsils. The tics returned 2 months after removal and that is when we went to a DAN doc for diet and supplements. My DAN doc has thought my son has a PANDAS component and I will be forwarding her the results of his CaM Kinase.

 

Do other's on this board think my son fits the PANDAS profile. He was doing okay this summer (nobody but me would notice any tics), fine the first week of school, and then strep hit his class. He starting blinking constantly and some other motor tics. The Azithromycin he was on weekly 500mg was increased to 250mg daily. It seemed to help some and when we went back to weekly he got worse again. We started a trial of Augmentin 500 daily and he had a dramatic improvement after the first dose but then backslide after catching some virus from school. He began to improvement again on day 8 of the 10 day course, but now has a bad cold. However he is still doing better (50-60%) better on the Augmentin despite being sick. Today is day 10 of his Augmentin and I am afraid to stop it. I will discuss this with my DAN doc of whether to consider keeping him on Augmentin for a longer trial, considering steriods, and I think we need to revisit IVIG as my son does have overall low IGG, and subclasses 1 and 3 are low too.

 

I just wanted to share my story to see what others think of the 142 number with his history and maybe help someone like us who has been on the fence about PANDAS. I have to say Dr Cunningham's lab is amazing. Kathy worked on my son's numbers over the weekend just because she knew how much I wanted them!

 

Thanks!

[EAMom]

Hi Betty04,

 

I'm glad you ran Cunningham's tests. 142 is mid-range PANDAS. So, I would say your son (esp. with his history of tics with illness/strep exposure) is definitely PANDAS.

 

Non-pandas tics in Cunnigham's JNI paper ran 40-110 (average 90)...see figure 3b ...so http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf he's not in that range at all.

 

Is he at the max. dose of Augmentin for his weight? Are you doing 250mg/2x daily?

 

Does your son have any OCD? You might consult with Dr. Latimer...it is my feeling that tic only PANDAS is more resistant to IVIG. Perhaps for your son, PEX then IVIG would be appropriate (give his low IgG)?

[sf_mom]

I concur with everything EAMom said.... Our son who is 5 1/2 is 3 weeks post IVIG and we have seen a huge improvement in all categories. His CaM Kinase score was 124 but blood draw was 11 days post 5 day steroid burst which might have lowered his scores. His only remaining symptoms are currently TICs. We had a couple of TIC free days but they seemed to have ramped back up a little over this past weekend with humming 'a little' while eating, occasionally blowing on the back of his hand or eye blinking. We are monitoring very closely to see if it subsides.... or just part of saw tooth recovery.

[Betty04]

Hi Betty04,

 

I'm glad you ran Cunningham's tests. 142 is mid-range PANDAS. So, I would say your son (esp. with his history of tics with illness/strep exposure) is definitely PANDAS.

 

Non-pandas tics in Cunnigham's JNI paper ran 40-110 (average 90)...see figure 3b ...so http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf he's not in that range at all.

 

Is he at the max. dose of Augmentin for his weight? Are you doing 250mg/2x daily?

 

Does your son have any OCD? You might consult with Dr. Latimer...it is my feeling that tic only PANDAS is more resistant to IVIG. Perhaps for your son, PEX then IVIG would be appropriate (give his low IgG)?

 

Thanks for your response EAMom. Yes my son is on Augmentin 250mg twice daily... the max dose. My son only has tics no OCD. In this latest episode, he started to appear more PANDAS by having separation anxiety and hysterical crying at school drop off... never had this happen before? I need to re-read Sweedo study because I know the results appear to be more favorable for tics with PEX but I think the sample may have been biased in favor of those results over IVIG (I think I remember the tic severity between IVIG and PEX pre treatment groups were very different?). We need to really do our homework with IVIG because my son has low IgA. We consulted with Dr Gupta at Irvine who told us as long as he has some IgA it was not a problem, but that has not been the general opinion of other doctors we have asked. I also need to get my son's full lab results from Cunningham. I only received the CaMKinase today because they were being nice to rush those results for me. I question if PEX would be appropriate because in the past he has never had elevated titers... not even a positive strep test. I have always just guessed that the strep was in his sinuses? But maybe PEX would be helpful for other antibodies?

 

Thanks again for your feedback!

[Betty04]

I concur with everything EAMom said.... Our son who is 5 1/2 is 3 weeks post IVIG and we have seen a huge improvement in all categories. His CaM Kinase score was 124 but blood draw was 11 days post 5 day steroid burst which might have lowered his scores. His only remaining symptoms are currently TICs. We had a couple of TIC free days but they seemed to have ramped back up a little over this past weekend with humming 'a little' while eating, occasionally blowing on the back of his hand or eye blinking. We are monitoring very closely to see if it subsides.... or just part of saw tooth recovery.

 

The saw tooth recovery seems so hard to tease apart from reacting to exposures and illness... especially this time of year! I hope things subside quickly for your son and thank you for your response.

[bmom]

This is definately my question of the year: "For the kids that are tics mainly with PANDAS, what treatment is the best option?????" We did IVIG, and that helped some, but at almost one year post, it does not seem to be a cure. Of course my son is older, 10 at IVIG. Who would know the answer to this? Dr. Latimer?

[P_Mom]

BMom,

 

I honestly don't think anyone can give you a DEFINITE answer at this piont......our kids are the "test subjects."

[bmom]

OK, as you probably noticed- I over analyze EVERYTHING! People hate to shop for clothes with me!

[P_Mom]

[powerofprayer]

Well I hope you don't mind me "piggybacking" on your topic, Betty04 but it is the perfect heading for me and caught my eye. I just got the CamKinase results back on my dd (6yo) and myself (38yo F w/ what I always have assumed is TS though never Dx'd) DD started with tics and NO OTHER Pandas behaviours when she was 4. At the time i had her ASO done when i first hear about Pandas but they were very low. I know now that really means nothing. BUt b/c it was low AND the fact there was no OCD, rages, etc i assumed she would be just like me, though i prayed very hard these would be transient. Sooooo back to present day, i expected our CamKinase to be relatively the same.....boy was i wrong!

DDs is 175 and mine is 100. I am still awaiting the rest of the results. Ok i have to admit I don't know/understand exactly what these tests measured, I was just curious and had them run. I've TRIED to read the JNI paper but it's way above my head. Soooo, am I to assume dd has Pandas and start pursuing treatment for that? I am hesitant to b/c even the tics are VERY mild right now and like i said she has NO associated Pandas behaviours. even when they are waxing, they are not terribly bad at this point. I worry though, if i remain complacent that once she hits the puberty age, things will explode.

She is the most easy going, well rounded 6 yo........though i'm probably slightly biased

A little background: she has never been dx'd with strep.....we've had a couple swabs done over the last couple years when friends would turn up with strep. She once took Bactrim as a prophylaxis for 1 year, against UTIs b/c she had VUR (urine reflux) but that condition cleared on its own. It was about 5 months after that that her tics started. for the longest time her tics were just eye blinking. this past spring she started clearing her throat and doing a strange breathing tic. but, like i said, all tics are very mild right now.

What would some of you advise in this case? Again i am REALLLY stunned that her level was a 175, i totally expected the two of us to be low. What happens if Pandas is not treated? Is that why I still have tics as an adult......could it have started as Pandas and just kept going and now it's "permanent" so to speak? I've always wondered my own tics never diminished as I got older, they actually seem to be at their worst IMO.

Thanks for ANY insight you can provide! There seems to be alot of knowledge regarding Cunningham's study here. I usually post on the tics/ts board though, so i did this in a shorter version over there too.

[faith]

hi powerofprayer,

Is there any possible way yours and your daughters samples could have been mixed up? did you send them together? did you see the person who drew the blood immediately label the tube with your names? I'm just brainstorming here.

 

Since you say your daugher is 6 and no other symptoms, I guess I am kind of surprised too. But I know nothing of all this, so am not giving any advice. I am also awaiting results of cam kinase for my son. my son is 10, and if your dd is 175 than comparing symptoms, then what's mine gonna be?, lol. really, don't know. Has your daughter been sick recently? I wish I had done mine too, but didn't want to confuse the issue. I myself have minor tics, but no other symptoms, so I'm kind of like you. I guess if it were me, I'd have a consult with someone and I'm guessing its a wait and see. If you think her symptoms worsen at any time, then you decide if you want to persue abx. Has she ever been on abx at all? maybe if she was, you got it early and her symptoms remain low? really don't know, just speculating.

 

 

Faith

[EAMom]

What happens if Pandas is not treated? Is that why I still have tics as an adult......could it have started as Pandas and just kept going and now it's "permanent" so to speak? I've always wondered my own tics never diminished as I got older, they actually seem to be at their worst IMO.

 

If your dd is only 6, untreated PANDAS could definitely get much worse with time (and future strep infections). OCD, other symptoms may develop with time. At the very least, I would be very vigalent about getting her cultured/treated for strep with any illness or exposure.

 

It would be also be interesting to try a 2 mo. trial of Azith or Augmentin (at fairly high treatment strength doses) and see what happens to the tics.

 

In my experience, tics are more resistant to treatment (can take longer to go away, sometimes persist depsite IVIG etc).

 

It is unknown whether untreated PANDAS tics as a child will result in a chronically tic-ky adult, but I think that is a very reasonable theory.

 

I think kids that "are never diagnosed with strep" are just as likely to develop PANDAS b/c IMO it is untreated or inadequately treated strep that is a big problem in PANDAS.

 

I don't believe Bactrim is that good against strep. (?)

 

Your dd could have low levels of strep hiding out in her body (intracellular) that is not easily cultured...but enough to result in PANDAS symptoms.

[dcmom]

Hi power of prayer- My daughter has no tics, but ocd- so I can't help there. I think there may be another family or two that present with mostly tics.

 

If your dd has high cam kinase and tics- I would, of course agree, pandas. I think it certainly couldn't hurt to do the following: a month of daily antibiotics along with a month of steroids. If you get a response, then you really know you are dealing with pandas, which would help you with further treatment. It definately seems to be somewhat of a spectrum- some kids get lots of symptoms and are totally debilitated, others present mildly.

 

Some other symptoms of pandas that can be more subtle: urinary frequency, excessive wiping after urinating, difficulty with academics (math, writing, reading), bad dreams, difficulty sleeping, picky eating, sensory issues (socks, clothes, sunlight, noise, etc), avoidance of personal hygeine (bathing, brushing teeth, hair brushing), particular with place ment of belongings, short fuse, separation anxiety (can be mild). I am sure others will add more.

 

Hoping you find answers...

[EAMom]

I would do just the antibiotics to start however, since some kids react badly to the steroids. You might get enough of an answer just on antibiotics.

[T_Mom]

I would do just the antibiotics to start however, since some kids react badly to the steroids. You might get enough of an answer just on antibiotics.

 

 

Absolutely this is what I would do as a test if it was our family--we decided a month of antibiotics was relatively benign to see if our d's mild facial tics and OCD would be affected and thankfully it was! (Thank you EAMom!! again--)

We continue on FULL strength now for 10 months and she is doing very well, but recovery took months. We could see very obvious progress though week to week, and after 3 months of antibiotics did a steroid burst which brought her back 110%

 

I do think that OCD can "set in"...my own experience as a child with multiple strep infections etc.

I believe more and more that the end result of untreated strep for these kids is lasting and possibly permanent --

Our d took months to recover from the last exacerbation--and I mean recover her academic skills, her kind personality, and her smile. She was gone for months.

 

I believe it is a serious illness with potential long range implications. If your d is ticcing and has a high Cam Kinase II -- if it was me I'd be seeking treatment asap to test it out --