Cam Kinase II numbers

[dcmom]

I have been anxiously awaiting the results from Dr Cunningham's test. Now I have them, and my mind cannot wrap around this. As I posted before, Julia's anti neural antibodies were elevated, and her cam kinase is 161%, just above the mid range of the pandas group.

 

Now the question is what to do with this?

 

Those numbers were before the steroid burst that we did. She is ok, now. She had three rough days last week, but her BF had strep. Now she is doing well, except some irritability and difficulty getting to sleep. We are still tapering off the steroids, so I am hoping they could be the cause- will know in a couple of weeks.

 

If she is well, I guess we won't do anything other than antibiotics for now. Daily, or twice weekly?

 

But what is my long term plan? Pex, IVIG, or try the high dose antibiotics approach of the "saving sammy" author? Does anyone have more details of what they did? I am thinking, if she is well, to try that- and if things go south, then move on to ivig and pex...

 

Can anyone give me insight at to your long term plans? I guess since IVIG and PEX are really not proven to be a "cure", there is no point doing them if she is doing well now?

[sf_mom]

You may see an increase in symptoms after steroid burst. I know with our Son we have seen a slight increase in his symptoms and were very concerned. We were only on a 5 day burst as a diagnostic test with Dr. K to see how he would respond to IVIG. So, he is 90% better but not completely. My concern is that he is still having low-grade response and damage to his 'brain' is ongoing. My perspective with our Son is why wait?

 

BUT, because our younger son had Kawasaki's and treated with IVIG and I've had IVIG as part of fertility treatments the thought of it is not at scary for us.

[EAMom]

You are an IVIG family!!

[dcmom]

SF Mom- thank you for your reply. I totally agree with you. During her first exacerbation (we are in the second one), I said- if it happens again, we will do IVIG or PEX. But now that it is here, and hopefully gone, I am wavering.

 

Are you convinced IVIG will really help, even if they are at 90%? Is there a reason you favor that over PEX?

 

I am considering both procedures together. I will talk to our neurologist next week. I have read somewhere, and heard from another neurologist, that sometimes pex is performed, and then the patient receives a dose of IVIG (maybe not as much?). It seems to make sense, and I kind of feel if we are going to go through this- lets make sure we knock this thing out of the park.

 

E

[EAMom]

I have been anxiously awaiting the results from Dr Cunningham's test. Now I have them, and my mind cannot wrap around this. As I posted before, Julia's anti neural antibodies were elevated, and her cam kinase is 161%, just above the mid range of the pandas group.

 

Now the question is what to do with this?

 

Those numbers were before the steroid burst that we did. She is ok, now. She had three rough days last week, but her BF had strep. Now she is doing well, except some irritability and difficulty getting to sleep. We are still tapering off the steroids, so I am hoping they could be the cause- will know in a couple of weeks.

 

If she is well, I guess we won't do anything other than antibiotics for now. Daily, or twice weekly?

 

But what is my long term plan? Pex, IVIG, or try the high dose antibiotics approach of the "saving sammy" author? Does anyone have more details of what they did? I am thinking, if she is well, to try that- and if things go south, then move on to ivig and pex...

 

Can anyone give me insight at to your long term plans? I guess since IVIG and PEX are really not proven to be a "cure", there is no point doing them if she is doing well now?

 

What dose of abs is Julia on now, and how old is she? Unfortunately, there are no easy answers...and even the experts (Swedo, Dr. K., Latimer) all have different approaches to PANDAS treatment.

 

I think most people would agree that 250mg/day of Azith. (for a 54# kid) is pretty high dose antibiotics, and that didn't work for us.

 

This is how we decided on IVIG: Our dd and family was incapcitated by severe PANDAS (OCD, anorexia nervosa, anxiety, depression, emotional lability/rages, eventually mild tics) Spring 08. When we "discovered" Azith. (+ advil) in the summer of 08, we finally achieved a decent remission of symptoms, she was back to being a pretty normal kid. We have maintained her on 250mg/day of Azith. (now 54#) since that time (1+ year). We were nervous about IVIG and wanted to see how things went with the Azith. alone. Unfortunately, Dr. K.'s predictions came true. With time the antibiotics alone became less and less effective. Our dd would react (although nothing near the full blown ###### of spring 08) when family members cultured positive for strep or when she herself became sick with a virus (fifth's and later the flu). Over last year we were also able to see a "baseline" change in symptoms and (like SFmom) had concerns about ongoing brain damage. Our dd was also suffering from (possibly PANDAS related) academic issues (including handwriting and math difficulties), despite an IQ in the gifted range, which further added to her stress and anxiety.

 

It's been 1 mo. since had IVIG (2gm/kg). She handled the procedure well althought she did have flu-like symptoms for the 2 days afterwards. We didn't see a big improvement immediately. In fact, the first week seemed like a setback...lots of tantrums and irritability. With each subsequent week, week she's been doing better. She is enjoying school more, has less anxiety, is more social, her mood is good. We're starting to see a brand new kid and it is wonderful. Things aren't 100%, we still see flashes of PANDAS (anxiety etc.) which quickly pass, but so far so good.

 

At this point it is too early to tell if IVIG was a cure. I also wonder if dd will need another treatment mainly b/c of the severity of her symptoms (and also her extremely high Cunningham results). We're also not rushing to decrease her Azith. dose at this point. But, at this point I can say that IVIG was the right choice and something we needed to do.

[sf_mom]

By the way, we think this is also the second exacerbation for our son and it was MUCH worse than the first. We are anxiously awaiting CaM results to see where he falls.

 

There are many reasons we are going for IVIG over PEX..... familiar with procedure, understand how powerful the response can be, Son's immune system is taxed/weak, more cost effective if not covered by insurance, will be less likely to get sick over next year (don't know if that is true for PEX), less downside for procedure 'only'.... I understand from my Father-in-law who is a Urologist infection is more likely with PEX and not sure why, Chicago is closer to CA, etc.

 

After IVIG, I hope to follow his CaM numbers at 6 months post, one year post and re-evaluate his levels and perhaps consider another IVIG treatment or PEX, results dependent. We are in the process of getting our Pediatrician on board or a new one if required and an immunologist who understands PANDAS so we can know what it means to have a weak immune system (test IgG subclasses too). We have been fortunate to be seeing a Neuropsychiatrist who is currently treating around 14 PANDAS patient.

 

-Wendy

[EAMom]

PEX first, then IVIG makes sense to me. Frankly, if we lived in DC and had Dr. Latimer as a doctor, we would have considered this an an option. Being in Northern CA, we had to jump through hoops to get LPCH (Stanford) to agree to just IVIG. (Our next plan was to fly to Dr. K. for treatment if Stanford wasn't going to cave in.)

 

The other thing I wonder about is doing a slightly higher/longer dose of pred, knocking down the immune system, (we did a 6 day burst 1 mo. prior) and then doing IVIG.

[dcmom]

Thank you both for your replies, it is helpful to be able to bounce ideas off of others who understand (even more than I do).

 

I will see what Dr L thinks next week.

 

I guess when I got her #s from Dr. Cunningham, I came to the complete realization that pandas is here and it is not going away I guess I am mentally preparing to DO something.

 

Will def get her tested by an immunologist first. I guess I really think pex, with ongoing ivig over a period of a couple of years, could be the answer. The tough part is, we won't know in time for our kids. Hopefully more will be known before they have children.

 

E

[smartyjones]

does anyone have info on what dr. latimer has to say about on-going brain damage?

thanks

[colleenrn]

Just got my Cam Kinase results. i posted the other lab results a few days ago. Any interpretations??

 

My 6 yo 119%

My 8 yo 135%

My 13 yo 143%

 

Keep in mind, if it affects the labs, they have all been on Zithromax 250mg/day for over 10 months and are not in a flareup now. I absolutely know they are all PANDAS- no question in my mind, just wanted to do the labs.

 

Any interpretation of the results would be so appreciated!!!

 

Colleen

[EAMom]

colleen...did your kids with the higher CaM kinase ll levels also have the higher anti-neural antibody levels?

 

Our dd (also on azith. 250mg/day) jumped from the high PANDAS range (180's) to the high SC range (mid 250's) during an exacerbation. So, being in an excerbation does seem to make a difference.

[Megs_Mom]

I don't have a good reason for posting - I have been unable to work all day since DCMOM posted that she had her CamKas results this morning. I am so cranky that I still don't have! Terrible attitude on my part & I know they are all working so hard but I am whiny!!! I do not usually get that stressed out - and we have had some stress - but I am off the charts today! I know, nothing will change when I get them, at least not right away. It's just been so long of having nothing conclusive. Today may be the same, but I just want to know!!! Ok, I am done. I'll go back to work. Not likely!

[bronxmom2]

Yeah, I'm anxiously waiting for mine too.

 

I actually went away from my computer all day, hoping the results would be in my email when I finally checked it.

 

None yet, oh well.

[bronxmom2]

Oh, and my the way dcmom, I would definitely, aggressively pursue treatment.

[KeithandElizabeth]

This is where I also become confused between Dr. K and Dr. Latimer. We have consulted with Dr. K who told us that he felt that IVIG was superior to PEX for children who have not reached puberty and that IVIG had an 80% cure rate. He felt that steroids should only be used as a test and was not curative. Based on these posts, it seems that Dr. Latimer uses steroids as more of a treatment option as well as longer term antibiotics. She also seems to favor PEX.

 

I would love to sit with the two of them and discuss their findings. Does anyone know what Dr. Latimer says in terms of a cure rate with steroids alone?

 

elizabeth