CAM Kinase score...just above normal

[faith]

paula,

thanks, I do find it interesting (and comforting, if that's the right word) that his symptoms are mild and so does correlate with a low cam number. He's just probably and obviously not an extreme case, so, and I'm only guessing, that treatment would also not have to be so aggressive at this time. I think the advic about the yeast issue maybe having a hand in this and by getting that under control, may help alot.

 

Faith

[peagreen]

That's so interesting! We tried Enhansa, but had the opposite result. For us, it seemed to stir up our yeast issues for both my kids. Our DAN doctor said that he's starting to see this in some of the kids. My son is on Nizoral and Amphotericin, and this help keep his yeast down, but he still has yeasty behavior. Our DAN doctor said that he doesn't usually see yeast this bad. SCD seemed to help for the first three months, but the second three months have been no better than prior to SCD, and I'm starting to lose motivation to do all the cooking it requires.

 

Paula

 

 

Just wanted to comment on the yeast issues. We are in the same boat. We have yeast overgrowth that we have been dealing with for years now. Cannot get it under control. We have been gf/cf, dye free, SCD (that was hard on my son!) and used digestive enzymes. I have not ever been able to do a low sugar diet which I know would be helpful... but my ds is 4. It has been hard enough to work with the other stuff.

 

ANYWAY, we had no success with fluconazole so we stopped using that. We finally tried a product called Enhansa. It is a curcumin supplement that is supposed to be good for yeast. We re-ran an Organic Acid test after he had been on it for about four months (well a fraction of the dose) and his yeast markers had come way down. They are still not in range but they were significantly down. His doctor didn't think this could be from the Enhansa because we are only at about 1/8 of the dosage... but we have not changed anything else.

 

We just started an antibiotic with Dr. Latimer so I am worried about the yeast. I am trying to increase the supplement but I am not sure what is going to happen. The die-off reactions can be bad as I am sure you know. Just another piece of the puzzle!

[peagreen]

I haven't rec'd any other results yet. I think they should be coming soon, and I will let you know. I also just sent blood in for my daughter, who may have had a PANDAS event as well, and now has choreaform hand/wrist movements ("milkmaid" grip"), as well as yeasty behavior and mild sensory issues. Her blood just went in yesterday, so we'll have to wait on her results a bit.

 

Paula

 

 

Peagreen,

Like the others say, you need to also look at your child's history/symptoms including response to illnesses and response to antibiotics (good ones at appropriate doses), not just the CaM kinase ll number. BTW, my child also developed lots of defiance and temperment issues with PANDAS (in addtion to other issues).

 

I am curious...what were your child's other results (anti-neuronal anti-bodies)?

 

I ask b/c my dd9's CaM kinase 7 weeks post IVIG was 119. (She had been up as high as 253 after an excerbation due to H1N1.) She is doing well post IVIG but all her anti-neural anti-bodies are still really high. So what does this mean? (Geesh...I'm sure Dr. Cunningham is being bombarded with questions now that everyone is getting results.) So, it looks like dd still has the anti-bodies, but maybe her blood brain barrier is now closed so they aren't affecting her? Anyway, we do plan to repeat the Cunningham test in several months, maybe longer (not sure exactly when) since it could be that 7 weeks post IVIG is too early to get an accurate picture of what is going on (our immunologist thinks 4+ mo. would be more appropriate).

 

Our younger dd6 (non-pandas we presumed) had a CaM kinase ll of 125. She had had episodes of POSSIBLE mild pandas symptoms (sensory issues, anxiety, concerns about locking doors/handwashing, sensory issues, emotional stuff)...it was hard for us to tell if this was low grade pandas or just her (hungry, tired, her temperment). But...her anti-neural anti-bodies were all in the normal range. So, right now I think perhaps she isn't pandas but we'll keep an eye on her and certainly re-test if things change.

[sww817]

Let me clarify my experience with Enhansa, especially since you have tried it. My doctor told me to start VERY slow... VERY. And we did. We started with about 1/4 of the small white scoop. Right now, we still only take one white scoop in the morning and I have just added about 1/3 in the evening. We stayed at that one scoop for months. We see die-off and yeasty behaviors. On top of getting sick and other flares. It can be overwhelming at times. I cannot say that I have seen a lot of difference in behavior or anything else. But his OAT numbers came down. We just got those results and I was SHOCKED. I have never had an OAT test, or any test for that matter, that was relatively positive. And like I said, the doctor says the dose is too small to say it is the enhansa... but we did nothing else different. SO...

 

We originally were going to stop everything when we had our last episode. But then we started exploring PANDAS, saw Dr. L and got that OAT. So now we are on antibiotics... ready for more yeast... and trying to up the Enhansa to see if it will keep it at bay. The yeast really adds a whole other layer to our issues!

 

And as for SCD... it was really hard to do all of the cooking. And my ds was on it at daycare while all of the other children were eating normal foods. It was too hard on him. I would have definitely kept it up if I had seen results. But we did not so we stopped. And we actually had some improvements after we stopped. But in hindsight, I am not sure what is illness / antibiotic / yeast / allergy related anymore! We have lots of issues!

[michele]

I was curious did Dr. Latimer order the IVIG with a CaM score of 124? What else did she try before ordering it? Did she order the burst? My son scored 129 (low PANDAS range)and had OCD and tics and moods and anxiety and she ordered the steroids but that was all. How did she determine how to treat your child? Did you have to convince her to go for IVIG or was it her suggestion? How many times did you see her prior to IVIG? I was left hanging after our appointment and the burst. I wonder if my son would respond well to IVIG. He did get angry on the steroids and irritable. She never sent the report yet. I am left to rely on psychiatrists who will treat the symptoms with Risperdal and Tenex. I wonder if I should schedule a six month follow up? We are six hours from her.

 

Michele

Our son's CaM Score was 124.... he was 11 days post 5 day steroid burst and it might have lowered his score. At 124 he presented with TICs and mild OCD. We did IVIG about 5 weeks ago and now is 98% better. You are heading down the right path for your child.

[faith]

michele,

I don't think Dr. Lattimer was the doc,, I think Dr. K.

 

So you just did the steroid and nothing else? I'm guessing she needs an update on how he did? did she schedule a follow up appt.?

 

 

 

Faith

[michele]

She did a phone call follow up and just suggested anxiety meds like prozac or a clonidine patch. then suggested we do an OCD study at NIMH for rizuole. Does his mean she thinks some kids just do better on meds? She seemed to think because of the family history of anxiety and depression he would do good because his dad does with prozac. We have no other follow up appointments with her. My husband was like why did we spend the money to come here I thought you said she was going to do something? I responded with the steroid burst was something we couldn't get elsewhere. But now what? We are back to meds and will this be forever?

michele,

I don't think Dr. Lattimer was the doc,, I think Dr. K.

 

So you just did the steroid and nothing else? I'm guessing she needs an update on how he did? did she schedule a follow up appt.?

 

 

 

Faith

[EAMom]

Hey MIchele, how about a Saving Sammy dose of Augmentin if you can't get Azith.

[faith]

michele,

Did she say she thought there were other issues that may not fall under the PANDAS umbrella? maybe because the steroid did not seem to help him, that may have been a clue for her. I think from what I understand, the steroid burst should help in some way. if it didn't, I don't know what the next step would be. maybe you could try again with another doc? how is he faring on the meds he's on now? are things improving? I remember all you went thru.

 

Faith

[michele]

She felt anxiety was the main issue for him. I am getting worn out on Dr's. New psychiatrist this month, new psychologist this week. Too many opinions complicates things. Risperdal is improving rage. Tenex is not doing much yet. Still seeing vocal and motor tics and compulsions. Maybe the dose needs adjusted. We go back next week. He has started cussing which is wonderful! He even slips in the f word in. He does it in the right context (anger)so I don' know if that is a tic or trying to tick me off?

michele,

Did she say she thought there were other issues that may not fall under the PANDAS umbrella? maybe because the steroid did not seem to help him, that may have been a clue for her. I think from what I understand, the steroid burst should help in some way. if it didn't, I don't know what the next step would be. maybe you could try again with another doc? how is he faring on the meds he's on now? are things improving? I remember all you went thru.

 

Faith

[Char]

Michele,

Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?

[faith]

Char,

you said your local doctor agreed to do the pred? did you start yet? how are thing going?

 

 

Faith

[Char]

My local doctor agreed to prescribe the months steroids. My son has been on the steroids for 4 days now. He seems more focused when talking to him. What I mean by that is, he answers questions faster without taking a long time to answer. His eye tics are about 30% better. He is not doing the eye tics as much. So those are small improvements but, I know I have to be patient. Because it can take time for the brain to heal. Also my son has a bad cold and cough. So that is not helping him to heal any faster right now. Char...

[michele]

No she never brought up IVIG after the steroids. My son got really agitated on the steroids. Did that happen to anyone else. But before the steroids he was already being very difficult mood wise. During that trip to DC he was so terrible. He hrew his shoes in the Memorial fountain and screamed and refused to walk and had to be carried aroung DC. He was having licking and smelling tics and tantrums. However during and after the steroids he got even more angry. Throwing things and kicking things. I could follow up with her and request she try the IVIG. She really wanted him in the study for Dr. Grant to really check him over and get to the bottom of the anxiety. However all our PANDAS kids have anxiety so I am not sure why Andrew's was different? Has anyone here done the OCD study with Dr. Grant?

Michele,

Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?

[Megs_Mom]

No she never brought up IVIG after the steroids. My son got really agitated on the steroids. Did that happen to anyone else. But before the steroids he was already being very difficult mood wise. During that trip to DC he was so terrible. He hrew his shoes in the Memorial fountain and screamed and refused to walk and had to be carried aroung DC. He was having licking and smelling tics and tantrums. However during and after the steroids he got even more angry. Throwing things and kicking things. I could follow up with her and request she try the IVIG. She really wanted him in the study for Dr. Grant to really check him over and get to the bottom of the anxiety. However all our PANDAS kids have anxiety so I am not sure why Andrew's was different? Has anyone here done the OCD study with Dr. Grant?

Michele,

Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?

I am guessing - but maybe because of the lack of response to the Prednisone? We saw (as an example) a dramatic decrease in OCD and anxiety on Pred. I really don't know if this test is definitive or not - but I usually hear about this as a part of the clinical picture. Maybe also due to the fact that Pred increased the anxiety for your son (which would be a more normal response). If a child has an increase of anxiety related behavior on Prednisone, then perhaps that starts to build a different picture.

 

Maybe start a new thread that asks about "did your child's symptoms reduce on Prednisone" and see if anyone has a firm PANDAS diagnosis, and also a bad response to Pred instead of a positive one? Good luck with all this - it sounds like a real puzzle.

 

I would also call NIMH & ask if you can speak to Dr. Grant - I have heard from others that he is pretty accessible.