Non Pandas Daughter has high Cam kimaise

[KeithandElizabeth]

Hello:

 

I just got our blood results for both my kids from Cunningham and I really need advice.

 

Our Pandas son Quinn was 140.

 

Our non-Pandas 10 year old daughter was 170.

 

I had our daughters blood drawn as well because she was in the hospital for unexplained GI issues (severe rectal bleeding) and she has been very tired. She does not show typical signs of PANDAS. What do I do with this information from Cunningham about her high bloodwork?????

 

Elizabeth

[momofgirls]

Elizabeth

Iam new so I don't know how helpful I can be but you are saying that your daughter tested for pandas but does not have symptoms? Is there a genetic link to pandas? How strange that both of your children have tested high. I am sorry I cannot be more of help. I guess I would email that dr k and ask his oppinion. Good luck kim

 

 

Hello:

 

I just got our blood results for both my kids from Cunningham and I really need advice.

 

Our Pandas son Quinn was 140.

 

Our non-Pandas 10 year old daughter was 170.

 

I had our daughters blood drawn as well because she was in the hospital for unexplained GI issues (severe rectal bleeding) and she has been very tired. She does not show typical signs of PANDAS. What do I do with this information from Cunningham about her high bloodwork?????

 

Elizabeth

[FallingApart]

No help here, just chiming in support. I, too, would be freaking out!!! Do you have a good ped? Or are you seeing Dr. K or Latimer? I would get the next consult available if it were my child. But I am a worrier. I will be interested to see what others say.

[dcmom]

Wow, I am speechless and freaked out with you. I have another daughter, age 9. She also had strep (without the normal symptoms) when pandas dd did. Since then, she has had daily anxiety causing stomach aches, and moodiness (short temper, depressed, tears, etc). Many times I have thought to myself (after she has a mood swing) "I should have her tested for pandas". But, I calmed myself down by saying she has no ocd or tics. We have done the whole GI route, and they have found nothing. I have kind of attributed it to her sister having pandas, which has been a huge stress on the entire family (they are buddies). But, in the last few days I have looked on Dr. K's website, webpediatrics, and saw his description of adolescent onset pandas. Have you read that?

 

I am sorry you are going through this. Please let us know what you find out. Dr Cunningham is very responsive, maybe she can give you some insight. Were both of your daughter's other numbers (anti neural antibodies) elevated? What made you have her tested? Sadly, there are many families that have more than one child that has pandas, there must be/ there is a genetic link here.

[KeithandElizabeth]

I had her tested just because of her unexplained GI issues and she has seem so tired lately!! And then I read Dr. K's adolescent form of PANDAS with GI issues being a symptom and I had her Cam Kinaise done along with my sons. My daughter seems so normal otherwise. She doesn't have any tics (she did have an eye tick for a few months when she was 2 years old.) SHe is almost 11 years old now. She doesn't seem to have any OCD. She does great in school, etc...SHe does seem more emotional, but I have been attributing this to a new school year. And she has lately been standing up during dinner. Of course, I am hyper sensitive to all this since we have been going through so much with our son.

 

I have emailed Dr. K and Dr. Lechman as well as Madeleine Cunningham. I want to prevent a later onset PANDAS situation. And I want to understand what other situations/illnesses can cause a high Cam Kinaise.

 

Now, for your non-Pandas daughter, maybe you should just get her Cam Kinaise done as well - just to be safe?? I will let you know what Dr. K has to say.

 

Oh, and I didn't get the other numbers from the CUnningham tests - just the Cam Kinaise.

 

I don't know what I would do without this network support group right now. Thank you!!!

 

Elizabeth

[monarchcat]

And I want to understand what other situations/illnesses can cause a high Cam Kinaise.

 

I would love to know the answer to this as well! If you find out anything, please post!

[sf_mom]

Also taken from my son's health/behavior log:

 

• Novemember 2007 (IMPORTANT HISTORY): In mid Novemember 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Several days later (approximately a week) our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Within 24 hours of him getting better our 5 ½ month old baby boy started showing signs of a similar illness. However, his symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 48 hours of getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. At the time, I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s a week prior. Adrian was eventually diagnosed with a resilient strep and treated with several courses of antibiotics, weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. Our sons were playmates and continued to be in contact throughout 2007 - 2008. Our sons friend, seems to have gotten much better but still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, chapped lips with cold sores and is repeating Kindergarden. Our son often complained of joint pain and has had chronic chapped lips ever since illness.

 

Adrian is now being tested for PANDAS. When he was at the Dr.'s office yesterday Adrian had a complete meltdown for an hour and twenty minutes because they were attempting to check his heart beat and leg joints.

 

Sometimes I wonder if it is actually the strain of strep with 'some' genetic component/disposition. How can it be that my son and one of his best friends both have PANDAS?

 

Based on your NON-PANDAS daughter's numbers and her age, I too will be interested as to what Dr. K says.

[dcmom]

Wendy-

 

I definately believe it is certain strains of strep that cause pandas (along with a genetic succeptability). My pandas dd had a "normal" occurance of strep throat one year prior- high fever, sore throat, etc.

 

Upon discovery of pandas in younger daughter, I cultured her older sister. It was negative. Two weeks later she had general tiredness, in a panic, I cultured and she was positive. With whatever strain they had- neither had typical symptoms.

 

I also believe some researchers have noted that pandas causing strep did not cause typical pharyngitis in many of their patients.

 

Eileen

[sf_mom]

Its scary....... I'm not only worried for his friend Adrian. I can't wait for Dr. Cunningham's results to confirm the non-genetic link but susceptibility to a STRAIN of strep and PANDAS.

[ShaesMom]

I also think it is likely the strain rather than a genetic component. My older son is 9 and has often exhibited some minor symptoms of Pandas but never has had a full blown episode. He also has had a history of recurrent strep infections. At this point, I am too scared to have him tested.

[KeithandElizabeth]

I understand how you are too scared to get him tested. I felt that way as well before I tested Keira.

 

So, what can this mean??? Can some people have PANDAS with elevated Cam Kinase II and never show full blown symptoms? What other situations cause an elevated Cam Kinase II?

 

Would I do IVIG on her just to prevent a full blown PANDAS case?

 

I am waiting on a response from Dr. K., Cunningham and Dr. Leckman.

 

Has anyone had siblings tested that had a low Cam Kinase II result??

 

elizabeth

[Megs_Mom]

Hi - while in the hospital, did you have a full endoscope done, for both gastrointestinal system (stomach, large & small intestines, etc) and rectum, etc? They should do multiple biopsies, looking for ulcers. I only suggest this as we found Peptic Ulcers in our 8 year old. I am very convinced that they start at the same time as the OCD (for a long time, chalked up to anxiety) - and are related to CamII. If we had not suspected Celiac, we would never have done the Endoscope.

 

Also, have you seen this note on Dr. K's website, under teens? I know your daughter is 10, but she might fall on the scale closer to teens? There are more signs, but here are 2:

 

Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.

 

Chronic fatigue commonly present.

 

There is a study that Kim provided to me under the post "Peptic Ulcer" from a week ago.

 

Obviously, you need a good curious doctor to help you. The above is just an idea from our experience.

 

Susan (Meg's Mom)

 

Hello:

 

I just got our blood results for both my kids from Cunningham and I really need advice.

 

Our Pandas son Quinn was 140.

 

Our non-Pandas 10 year old daughter was 170.

 

I had our daughters blood drawn as well because she was in the hospital for unexplained GI issues (severe rectal bleeding) and she has been very tired. She does not show typical signs of PANDAS. What do I do with this information from Cunningham about her high bloodwork?????

 

Elizabeth

[momofgirls]

Elizabeth I am curious what the doctors say as well. If I can get a consult with him I will pose the question as to any other possible causes of high cam kinaise.

Kim

 

 

 

 

 

 

 

I understand how you are too scared to get him tested. I felt that way as well before I tested Keira.

 

So, what can this mean??? Can some people have PANDAS with elevated Cam Kinase II and never show full blown symptoms? What other situations cause an elevated Cam Kinase II?

 

Would I do IVIG on her just to prevent a full blown PANDAS case?

 

I am waiting on a response from Dr. K., Cunningham and Dr. Leckman.

 

Has anyone had siblings tested that had a low Cam Kinase II result??

 

elizabeth

[EAMom]

Wow...too bad nobody bothered to get an M type on this strep (figure out more about the strain). I definitely believe that certain strains of strep are more likely to trigger pandas (just as there are strains that are more likely to cause RF.)

[EAMom]

I think it is the strain, the age, and a genetic component all together. If it was just the strain you would have larger groups of kids (eg many in a classroom) all develop pandas. Not just a case here or there.