Just got our Cam K's in - yikes!

[momto2pandas]

I just got our Cam Kinase tests from Cunningham's lab:

 

me: 182

ds6: 187

ds3: 199

 

Yikes!!!

 

Kind of shocked to see that we are at the very top of the PANDAS range. In fact, ds3 ties with the very top PANDAS point in the Cunningham paper. We match up almost better with the SC group.

 

Also got the Strep results. DH's anti-dnase B is 170, twice the upper limit of normal! Glad we found that out. Ds6 is 680, 4 times the ULN. Haven't gotten mine yet.

 

And their immune tests were repeated and seem to be getting worse...good thing we're headed for IVIG next week, though I'm not sure if we can do it given that we seem to have Strep running around currently and aren't even on antibiotics at this point.

[chodnett]

do you all have pandas symptoms?

I am asking because my d12 with pandas. Got Cam Kinase today also.

Pandas range. Have done family titers.

Me(mom) and twin to PANDAS d12 high titers.

What made you do cunningham for all of you?

[smartyjones]

mom - remind me -- you had pandas as a child, see much controlled with fish oil, high epa? you didn't believe your children's symptoms were "that bad"? is that correct?

[momto2pandas]

Yes, I have PANDAS. It was VERY bad as a kid (2 years in hospitals - anorexia nervosa/OCD, bipolar, bad tics, etc.) but it doesn't amount to that much these days. I still feel it when I have an infection, but mostly I feel wiped out and brain foggy when that happens now, with some mild general anxiety/depression. My children's symptoms are also not that bad. In fact, the main reason I got the Cam's was that I wasn't even sure about ds3's diagnosis since his symptoms are so mild and seem to be mostly speech-related.

 

I know that there probably isn't an exact correlation between symptoms and Cam, but it's still disturbing to me that both of my kids have Cam's that are worse than mine given how bad I got by the time I was in my early teens. Luckily, there are now ways to help them that weren't available to me.

 

I'm guessing it may be our supplements that help so much, most likely the fish oil. I removed everything before we got the tests done to get a real baseline and the kids really crashed when I did so.

 

 

mom - remind me -- you had pandas as a child, see much controlled with fish oil, high epa? you didn't believe your children's symptoms were "that bad"? is that correct?

[justinekno]

Is it necessary to remove everything prior to getting the Cunningham test done? Also, just curious, what is the range from Cunningham for PANDAS? I see people post their results but I'm not sure how they play out in terms of range. We are still contemplating having the test done.

 

 

I'm guessing it may be our supplements that help so much, most likely the fish oil. I removed everything before we got the tests done to get a real baseline and the kids really crashed when I did so.

Edited April 17, 2010 by justinekno

[sf_mom]

WOW and Yikes.... I'll be curious how your anti-neuronal antibody titers relate to symptom presentation.

 

Our twins are almost 3 and the one twin who's CaM Kinase is 148 and is on the ULN for Anti-Lysoganglioside is the most symptomatic (he had Kawasakis). The other twins CaM Kinase is 157 but all anti-neuronal antibody titers were normal and she has four major symptoms: speech delay, velcro syndrome 'wants to be held non-stop', Livedo reticularis over her entire body warm/cold, sandpapery rash on cheeks....

 

The majority of the twins symptoms are starting to resolve on antibiotics, high dose probiotics, bentonite clay, high dose B-12, fish oil. I'll be testing them again soon to see if anything has changed. We will treat them eventually with IVIG if low IGGs do not resolve.

 

Wishing you all the best and I'll be interested to see what resolves post IVIG for them.

 

-Wendy

[momto2pandas]

I don't think it's generally necessary to remove everything to get the Cunningham test done, but I suspected that we were getting a ton of benefit from our regime (just based on my experience with/without it), so I removed it to get a better sense for what we were "really" like in the absence of it. I have to admit, though, that letting the kids "crash" in this way, even for a few days, was kind of nighmarish and I almost bailed on it. I cannot imagine life if we really had to live with all 3 of us in that state.

 

In the paper that Cunningham's lab showed me, the very highest PANDAS child had a CamK of nearly 200 - so about a tie with my ds3. Above that threshold, everyone else had Sydenham's Chorea. So both of my boys and I are in the upper limit PANDAS/low-mid SC range.

 

 

Is it necessary to remove everything prior to getting the Cunningham test done? Also, just curious, what is the range from Cunningham for PANDAS? I see people post their results but I'm not sure how they play out in terms of range. We are still contemplating having the test done.

 

 

I'm guessing it may be our supplements that help so much, most likely the fish oil. I removed everything before we got the tests done to get a real baseline and the kids really crashed when I did so.

[Stephanie2]

Momto2pandas and SFmom, are you saying that your younger children's speech delay is due to pandas????!!!! And how do you know that? You really caught my attention b/c my 2 year old has pandas and quite a speech delay (barely any words at all, and the words he has are incomprehensible to most people). I am doing all I can for the little guy, stopped vaccines, working our way through the DAN protocol, weekly speech therapy, constantly talking to him, etc but the speech just won't come. I never considered that maybe pandas could be affecting his speech.

 

Just wondering...

Stephanie

[sf_mom]

Because we have twins, its easy to tell when one is developmentally behind!!! I was really worried about her speech. She was very non-verbal, pointed and grunted a lot for things and only a select few words or linked only a couple of things. NOW, that she is feeling better those things are resolving. She was the last to be tested and the last to have had a serious illness in our house 'we think Rubella' (rapid eye blinking for 3 days during this illness)...... Iggs in the low 300's and has highest CaM Kinase. Since Jan. she has been on antibiotics and she has had one cold. The velcro syndrome was only present when she had a cold, her skin coloring has changed drastically, appears to be going through a growth spurt, the hitting, biting and screaming have gotten a lot better, she is happier and her language has taken off. I do think a lot more is related to PANDAS than we know.

 

-Wendy

[dcmom]

Can you discuss your regimen for the kids, again? Thanks!!

 

 

 

 

 

 

 

 

quote name='momto2pandas' date='Apr 17 2010, 12:12 PM' post='63775']

I don't think it's generally necessary to remove everything to get the Cunningham test done, but I suspected that we were getting a ton of benefit from our regime (just based on my experience with/without it), so I removed it to get a better sense for what we were "really" like in the absenc

e of it. I have to admit, though, that letting the kids "crash" in this way, even for a few days, was kind of nighmarish and I almost bailed on it. I cKannot imagine life if we really had to live with all 3 of us in that state.

 

In the paper that Cunningham's lab showed me, the very highest PANDAS child had a CamK of nearly 200 - so about a tie with my ds3. Above that threshold, everyone else had Sydenham's Chorea. So both of my boys and I are in the upper limit PANDAS/low-mid SC range.

 

 

Is it necessary to remove everything prior to getting the Cunningham test done? Also, just curious, what is the range from Cunningham for PANDAS? I see people post their results but I'm not sure how they play out in terms of range. We are still contemplating having the test done.

 

 

I'm guessing it may be our supplements that help so much, most likely the fish oil. I removed everything before we got the tests done to get a real baseline and the kids really crashed when I did so.

[Stephanie2]

She sounds a lot like my son with the pointing and grunting, hitting, screaming, velcro syndrome. You are probably right that there is more than we know about the effects of pandas. I started him on a steroid today for the first time and WOW he came out with SO MANY words and AFFECTION, which is rare for him!!! He was stroking my arm and my hair while I rocked him tonight!! So darn sweet! I really think there is a lot of inflammation in his poor little brain!

 

Stephanie

 

Because we have twins, its easy to tell when one is developmentally behind!!! I was really worried about her speech. She was very non-verbal, pointed and grunted a lot for things and only a select few words or linked only a couple of things. NOW, that she is feeling better those things are resolving. She was the last to be tested and the last to have had a serious illness in our house 'we think Rubella' (rapid eye blinking for 3 days during this illness)...... Iggs in the low 300's and has highest CaM Kinase. Since Jan. she has been on antibiotics and she has had one cold. The velcro syndrome was only present when she had a cold, her skin coloring has changed drastically, appears to be going through a growth spurt, the hitting, biting and screaming have gotten a lot better, she is happier and her language has taken off. I do think a lot more is related to PANDAS than we know.

 

-Wendy