CAM Kinase score...just above normal

[peagreen]

We also just got our CAM Kinase score from Dr. Cunningham. My son's score was 118%, which is not much above normal. My son was not in an exacerbation at the time the blood was taken, though. What does this mean in terms of a PANDAS diagosis? Is there anyone who has gotten a low score like this, followed by a higher score during an exacerbation? Or are we just barking up the wrong tree?

 

Paula

[P_Mom]

You are not barking up the wrong tree...my older son had cam score of 112....still considered PANDAS...although it does overlap with the normal range. If he were 112 with no tics/adhd/strep...well, he'd be considered "normal." 118 is in PANDAS range....go by clinical symptoms.

[faith]

Paula,

do you feel this correlates with the scale of his symptoms? in other words, where do you feel your child fits in symptomwise, would you say his presentation is on the milder side. what are his symptoms during exacerbation? and are they only in exacerbation? for instance, my son is 10 now and maybe 4 years ago I would say mild, but this past year I have to admit things are just going downhill, not getting better. so our score of 179 I think fits, if you look at it on a scale. we deal with vocal tics, some ocd, sep anxiety not appropriate for his age, sensory issues, irritability which presents at least once a day., .... how old is your child again?

 

 

Faith

[Ellen]

Paula, I agree with P. Mom to go by the clinical symptoms. Your son's results may be lower because he was not in an exacerbation when the test was done. I looked at one of your older posts and you had a question about low IGA and IVIG. This has been an issue for us as well because my son has low IGA in addition to low IGG, low IGM and other immune deficiencies. He had PEX at Georgetown a few weeks ago, and if we do not see enough improvements in the next few months, we are considering following with monthy IVIG with Dr. Denis Bouboulis, our immunologist in Connecticut. You may want to talk to him. He is very helpful and good about returning phone calls. If your son's IGA is low, an immunologist can do a test to fractionate that number into two numbers, IGA1 and IGA2. If either of those numbers is too low, then it is considered to be a Selective IGA deficiency. My son's IGA2 came out very low, and so Dr. Bouboulis told us that he has a Selective IGA2 deficiency and his chances of an allergic anaphylactic reaction to IVIG would be high (close to 40 percent) unless he gives him IVIG without IGA in it. According to Dr. Bouboulis, IVIG is still effective that way and there would be no worry of allergic reaction if he had IVIG without IGA. So if we proceed with IVIG, it will be with this immunologist and there will be no IGA in it. We have known about my son's low IGA for a long time, and Dr. Bouboulis has been the first doctor who has been able to offer IVIG in a way that would not be risky too my son, and so I feel lucky to have found him. Feel free to send me a pm if you would like his contact info.

 

Ellen

 

We also just got our CAM Kinase score from Dr. Cunningham. My son's score was 118%, which is not much above normal. My son was not in an exacerbation at the time the blood was taken, though. What does this mean in terms of a PANDAS diagosis? Is there anyone who has gotten a low score like this, followed by a higher score during an exacerbation? Or are we just barking up the wrong tree?

 

Paula

[sf_mom]

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.

[peagreen]

Hi Faith,

 

My son is 7 YO. I haven't been totally convinced he ha PANDAS because his symptoms are different from classic PANDAS. He doesn't have anxiety, or many tics, and though he is obsessive, I'm not sure I would call it OCD. He starated out with an PDD (NOS) diagnosis which was later (after much biomedical intervention) changed to ADHD. When he has an exacerbation, which comes whn his immune system is activated by ANYTHING (viruses, bacteria, even barometric pressure changes), he becomes both loopy/drunken and ridged-thinking/defiant/temperamental. The other thing that's different between classic PANDAS and my son is that his behavior can very so much from day to day, or even hour to hour. A couple days ago, he had a fabulous day right in the middle of two terrible days.

 

Yes, I think the day his blood was taken was a good day, so I might expect not to see a really high number, I guess. But the next day was terrible as I recall. I'm not sure this fits with the classic PANDAS picture. What do you think?

 

Paula

 

Paula,

do you feel this correlates with the scale of his symptoms? in other words, where do you feel your child fits in symptomwise, would you say his presentation is on the milder side. what are his symptoms during exacerbation? and are they only in exacerbation? for instance, my son is 10 now and maybe 4 years ago I would say mild, but this past year I have to admit things are just going downhill, not getting better. so our score of 179 I think fits, if you look at it on a scale. we deal with vocal tics, some ocd, sep anxiety not appropriate for his age, sensory issues, irritability which presents at least once a day., .... how old is your child again?

 

 

Faith

[peagreen]

Thanks, Ellen. That is very good information. I looked back at some old immune testing that was done, and noticed he had an IgG1 subclass deficiency, but I don't remember seeing the IgA broken down (I will look again today). Have you noticd any improvements since PEX? Can you tell my why you chose PEX over IVIG to begin with?

 

Paula, I agree with P. Mom to go by the clinical symptoms. Your son's results may be lower because he was not in an exacerbation when the test was done. I looked at one of your older posts and you had a question about low IGA and IVIG. This has been an issue for us as well because my son has low IGA in addition to low IGG, low IGM and other immune deficiencies. He had PEX at Georgetown a few weeks ago, and if we do not see enough improvements in the next few months, we are considering following with monthy IVIG with Dr. Denis Bouboulis, our immunologist in Connecticut. You may want to talk to him. He is very helpful and good about returning phone calls. If your son's IGA is low, an immunologist can do a test to fractionate that number into two numbers, IGA1 and IGA2. If either of those numbers is too low, then it is considered to be a Selective IGA deficiency. My son's IGA2 came out very low, and so Dr. Bouboulis told us that he has a Selective IGA2 deficiency and his chances of an allergic anaphylactic reaction to IVIG would be high (close to 40 percent) unless he gives him IVIG without IGA in it. According to Dr. Bouboulis, IVIG is still effective that way and there would be no worry of allergic reaction if he had IVIG without IGA. So if we proceed with IVIG, it will be with this immunologist and there will be no IGA in it. We have known about my son's low IGA for a long time, and Dr. Bouboulis has been the first doctor who has been able to offer IVIG in a way that would not be risky too my son, and so I feel lucky to have found him. Feel free to send me a pm if you would like his contact info.

 

Ellen

 

We also just got our CAM Kinase score from Dr. Cunningham. My son's score was 118%, which is not much above normal. My son was not in an exacerbation at the time the blood was taken, though. What does this mean in terms of a PANDAS diagosis? Is there anyone who has gotten a low score like this, followed by a higher score during an exacerbation? Or are we just barking up the wrong tree?

 

Paula

[Megs_Mom]

Hi Paula - I apologize if I am asking questions you have already answered, I am not as familiar with your story. Has your son been tested for allergies - and especially the blood tests for Celiac Disease? (based on your biomedical interventions, I bet you have been here already!) Sometimes wheat allergies (and Celiac, which is an autoimmune disorder where gluten can be literally turned into alcohol by their bodies, among other icky end results) can cause behavior such as you described. If you ask for Celiac testing, insist on both the Ttg and Endomysial tests to be run (endomysial is expensive, but very specific). Have you also tried removing processed sugars and dyes from his diet for a few weeks?

 

We thought that perhaps Meg had Celiac for a few months - turned out negative, but I did a lot of reading during that time, and Celiac had a presentation that could be similar to PANDAS - a lot of people think you have to have stomach issues if you are Celiac, but that is not accurate. In a lot of ways, the behaviors are all on the same spectrum, but you kind of have to explore a lot of options and go with your mom instinct. Sounds like you have a good one, so you will figure it out. Susan

 

Hi Faith,

 

My son is 7 YO. I haven't been totally convinced he ha PANDAS because his symptoms are different from classic PANDAS. He doesn't have anxiety, or many tics, and though he is obsessive, I'm not sure I would call it OCD. He starated out with an PDD (NOS) diagnosis which was later (after much biomedical intervention) changed to ADHD. When he has an exacerbation, which comes whn his immune system is activated by ANYTHING (viruses, bacteria, even barometric pressure changes), he becomes both loopy/drunken and ridged-thinking/defiant/temperamental. The other thing that's different between classic PANDAS and my son is that his behavior can very so much from day to day, or even hour to hour. A couple days ago, he had a fabulous day right in the middle of two terrible days.

 

Yes, I think the day his blood was taken was a good day, so I might expect not to see a really high number, I guess. But the next day was terrible as I recall. I'm not sure this fits with the classic PANDAS picture. What do you think?

 

Paula

 

Paula,

do you feel this correlates with the scale of his symptoms? in other words, where do you feel your child fits in symptomwise, would you say his presentation is on the milder side. what are his symptoms during exacerbation? and are they only in exacerbation? for instance, my son is 10 now and maybe 4 years ago I would say mild, but this past year I have to admit things are just going downhill, not getting better. so our score of 179 I think fits, if you look at it on a scale. we deal with vocal tics, some ocd, sep anxiety not appropriate for his age, sensory issues, irritability which presents at least once a day., .... how old is your child again?

 

 

Faith

[peagreen]

Hi Susan,

 

These are good comments. My son was tested for Celiac, but he had already been gluten free for a few months, so the test was inconclusive. He has been on a gluten/dairy/soy/allergen/yeast/artificial ingredient free diet since he was diagnosed at 14 months. He is now on the Specific Carbohydrate diet, which also takes out most starches. My son's major issue seems to be yeast, which we just haven't been able to lick in 6 1/2 years of all out efforts. I think it may be because of his immune defecits, but I don't understand why he seems to get more "yeasty" with immune system activation. Is he having autoimmune responses to yeast? Or is his immune system so distracted by the virus, or whatever it is at that particular time, that it's totally taking its hand of the wheel when it comes to fighting down the yeast? Or perhaps, it's not really yeast at all, but something that triggers yeast-like behaviors. I'm totally at my wits end!

 

Paula

 

 

Hi Paula - I apologize if I am asking questions you have already answered, I am not as familiar with your story. Has your son been tested for allergies - and especially the blood tests for Celiac Disease? (based on your biomedical interventions, I bet you have been here already!) Sometimes wheat allergies (and Celiac, which is an autoimmune disorder where gluten can be literally turned into alcohol by their bodies, among other icky end results) can cause behavior such as you described. If you ask for Celiac testing, insist on both the Ttg and Endomysial tests to be run (endomysial is expensive, but very specific). Have you also tried removing processed sugars and dyes from his diet for a few weeks?

 

We thought that perhaps Meg had Celiac for a few months - turned out negative, but I did a lot of reading during that time, and Celiac had a presentation that could be similar to PANDAS - a lot of people think you have to have stomach issues if you are Celiac, but that is not accurate. In a lot of ways, the behaviors are all on the same spectrum, but you kind of have to explore a lot of options and go with your mom instinct. Sounds like you have a good one, so you will figure it out. Susan

 

Hi Faith,

 

My son is 7 YO. I haven't been totally convinced he ha PANDAS because his symptoms are different from classic PANDAS. He doesn't have anxiety, or many tics, and though he is obsessive, I'm not sure I would call it OCD. He starated out with an PDD (NOS) diagnosis which was later (after much biomedical intervention) changed to ADHD. When he has an exacerbation, which comes whn his immune system is activated by ANYTHING (viruses, bacteria, even barometric pressure changes), he becomes both loopy/drunken and ridged-thinking/defiant/temperamental. The other thing that's different between classic PANDAS and my son is that his behavior can very so much from day to day, or even hour to hour. A couple days ago, he had a fabulous day right in the middle of two terrible days.

 

Yes, I think the day his blood was taken was a good day, so I might expect not to see a really high number, I guess. But the next day was terrible as I recall. I'm not sure this fits with the classic PANDAS picture. What do you think?

 

Paula

 

Paula,

do you feel this correlates with the scale of his symptoms? in other words, where do you feel your child fits in symptomwise, would you say his presentation is on the milder side. what are his symptoms during exacerbation? and are they only in exacerbation? for instance, my son is 10 now and maybe 4 years ago I would say mild, but this past year I have to admit things are just going downhill, not getting better. so our score of 179 I think fits, if you look at it on a scale. we deal with vocal tics, some ocd, sep anxiety not appropriate for his age, sensory issues, irritability which presents at least once a day., .... how old is your child again?

 

 

Faith

[Megs_Mom]

So, just brainstorming here - maybe go for an Endoscope & see if he has damaged villi at this time? If so, then you know you have gluten contributing to the issue? It does sound like a yeast issue, so since it needs sugar to survive, can you "starve him of sugar" - or have you already tried this diet? I know how restrictive it is to eliminate all sugars including fruits, and also wheat (but sounds like you are already a master of "Autism diets"), but I understand that this does work miracles if yeast is the issue. I don't envy you this - dietary "reseach" seem to be the most complex to understand and implement. Hopefully someone else here will understand the connection between yeasty behavior & illness.

 

What are his immune deficits? Do they qualify him for IVIG?

 

Hi Susan,

 

These are good comments. My son was tested for Celiac, but he had already been gluten free for a few months, so the test was inconclusive. He has been on a gluten/dairy/soy/allergen/yeast/artificial ingredient free diet since he was diagnosed at 14 months. He is now on the Specific Carbohydrate diet, which also takes out most starches. My son's major issue seems to be yeast, which we just haven't been able to lick in 6 1/2 years of all out efforts. I think it may be because of his immune defecits, but I don't understand why he seems to get more "yeasty" with immune system activation. Is he having autoimmune responses to yeast? Or is his immune system so distracted by the virus, or whatever it is at that particular time, that it's totally taking its hand of the wheel when it comes to fighting down the yeast? Or perhaps, it's not really yeast at all, but something that triggers yeast-like behaviors. I'm totally at my wits end!

 

Paula

[Megs_Mom]

I thought I remembered a post recently about yeast - maybe something in this will help: http://www.latitudes.org/forums/index.php?showtopic=5695

[Suzan]

Hi, I have not had time yet to read all the responses, but I wanted to mention that my younger dd's cunningham result was also 118%. She is most definately PANDAS and she responded really well to antibiotics. She was in an episode during the blood draw. She is also gluten intolerant, possible celiac and has improved very much on a gluten free diet.

 

Susan

[Ellen]

We first considered IVIG back in April of 2008, but we were getting mixed opinions from doctors about the safety of IVIG for people with low IGA, and at the time nobody told us that it could be done without IGA. He was also 12 at the time and his case was extreme so we thought that PEX was a better option. He actually has had PEX twice. The first time was with Dr. Elia at Children's Hospital of Philadelphia in the summer of 2008. It was done through a peripheral line, and we had to stop after it was onlly 70 percent completed because of problems with his veins. We saw some very good improvements after this, but it took a couple of months before they became obvious. Also, because he still had some major OCD and focusing issues, we decided to see Dr. Latimer in August of this year, and she told us that PEX would probably be a lot more efficient and effective if it is done through a central line. She also suggested we see an immunologist to test for the Selective IGA deficiency, so we saw Dr. Bouboulis after that and that is when he did the testing and told us about the option of giving IVIG without IGA. Because of his age (13) and the fact that PANDAS has been going on for so long with him (almost 3 years), we decided to do PEX in Georgetown first and possibly follow up with monthly IVIG to address the immune deficiencies. So far, three weeks after PEX, we are seeing some positive changes but nothing dramatic yet. One very encouraging sign is that he seems to be much quicker to respond to questions and directions, and this is great to see because on of his biggest problems is spacing out episodes. I hope I have more good news to report soon.

 

Ellen

 

Thanks, Ellen. That is very good information. I looked back at some old immune testing that was done, and noticed he had an IgG1 subclass deficiency, but I don't remember seeing the IgA broken down (I will look again today). Have you noticd any improvements since PEX? Can you tell my why you chose PEX over IVIG to begin with?

 

Paula, I agree with P. Mom to go by the clinical symptoms. Your son's results may be lower because he was not in an exacerbation when the test was done. I looked at one of your older posts and you had a question about low IGA and IVIG. This has been an issue for us as well because my son has low IGA in addition to low IGG, low IGM and other immune deficiencies. He had PEX at Georgetown a few weeks ago, and if we do not see enough improvements in the next few months, we are considering following with monthy IVIG with Dr. Denis Bouboulis, our immunologist in Connecticut. You may want to talk to him. He is very helpful and good about returning phone calls. If your son's IGA is low, an immunologist can do a test to fractionate that number into two numbers, IGA1 and IGA2. If either of those numbers is too low, then it is considered to be a Selective IGA deficiency. My son's IGA2 came out very low, and so Dr. Bouboulis told us that he has a Selective IGA2 deficiency and his chances of an allergic anaphylactic reaction to IVIG would be high (close to 40 percent) unless he gives him IVIG without IGA in it. According to Dr. Bouboulis, IVIG is still effective that way and there would be no worry of allergic reaction if he had IVIG without IGA. So if we proceed with IVIG, it will be with this immunologist and there will be no IGA in it. We have known about my son's low IGA for a long time, and Dr. Bouboulis has been the first doctor who has been able to offer IVIG in a way that would not be risky too my son, and so I feel lucky to have found him. Feel free to send me a pm if you would like his contact info.

 

Ellen

 

We also just got our CAM Kinase score from Dr. Cunningham. My son's score was 118%, which is not much above normal. My son was not in an exacerbation at the time the blood was taken, though. What does this mean in terms of a PANDAS diagosis? Is there anyone who has gotten a low score like this, followed by a higher score during an exacerbation? Or are we just barking up the wrong tree?

 

Paula

[sww817]

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!

[EAMom]

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.