High CamKinase in non PANDAS child

[dut]

Hello

 

I'm just looking for thoughts/opinions....

 

We had our ds2 do the Cunningham test (dd6 came back 165% out of exacerbation). We ran his test 'cos I'd seen a few possible hints at PANDAS but not much. Anyway, we got his CamKinase back tonight and it's 151%.

 

Not our ped but another at the same practice, offered to put ds2 on proph abx... she's a true PANDAS believer and 'cos I'd seen those few small signs she was willing to do the abx for him. On the back of the small signs alone, I wasn't ready for proph abx for him. That was mainly why we did the Cunningham test.

 

But now?

 

I think the ped may be willing to do a course of steroids... I would like to do this 'cos I'm now not sure what his normal behaviour baseline is 'cos he's only just 2. He is very lively, VERY lively, happy but wilful, quick to anger and tantrum when things don't go his way but smiles and loving when they do. Awful sleeper... quick to go to sleep but wakes maybe 6-8 times an night. Doesn't like, or maybe just, notices loud noises. PANDAS or just a 2 year old???

 

Is steroids for a couple of weeks over the top in this situation? Should we just go straight for abx? The 151% puts him just above the median line for PANDAS. We haven't had any other results back yet.

 

Any ideas would be welcome. Thanks.

[dut]

Sorry.... my topic should have read "High CamKInase in our supposedly non PANDAS child"

[peglem]

Maybe I'm overly fearful of what MAY happen because our situation started very early and disrupted early childhood and subsequent development...but, knowing what I know now about this, I think I'd go for the steroids and see if some of those issues resolve. And I'd do the antibiotics, too. I've peeked a bit into research on sleep issues and just lack of proper sleep is pretty bad for development and learning. Your son is at a critical age still in his development...and an age at which it is more difficult to gauge "normal" because there is so much variety. I understand wanting to be careful about medications....its a tough call for sure, ....but that's my take, based on my extreme experience with PANDAS...it scares me more than the medications do.

[Iowamom]

Maybe I'm overly fearful of what MAY happen because our situation started very early and disrupted early childhood and subsequent development...but, knowing what I know now about this, I think I'd go for the steroids and see if some of those issues resolve. And I'd do the antibiotics, too. I've peeked a bit into research on sleep issues and just lack of proper sleep is pretty bad for development and learning. Your son is at a critical age still in his development...and an age at which it is more difficult to gauge "normal" because there is so much variety. I understand wanting to be careful about medications....its a tough call for sure, ....but that's my take, based on my extreme experience with PANDAS...it scares me more than the medications do.

 

Ditto to Peglem's response. We now believe our issues started before the age of 2. Nobody knew much better 9 years ago. We always said that something was "different" but no one could put a finger on it. "More consistent parenting" was the initial bunny trail we went down. My favorite line from a nursery rhyme that has been my son. and sounds like your son: "And when he was good he was very, very good. And when he was bad he was horrid!!" I'm with Peglem. I think the benefit outweighs the risk. I also remember saying: "Terrible two's??!! Ha, the four's were 2x2!!" Did Dr. C make any comment about the relationship of age and CaM results-- if there is any. Best Wishes and prayers. Dawn

[KeithandElizabeth]

My non-PANDAS daughter had very high Cunningham numbers. I still feel that our hospital mixed my children's blood work. But even if they did mix it up, her CAM Kinase II would be 141% instead of 175% like it said. But then her other Cunningham numbers would have been in the normal range. What are your son's other Cunningham numbers?

 

She does not show PANDA symptoms so Dr. Cunningham, Dr. Leckman and Dr. K said not to do anything at this point. I plan to retest her in January. You seem to feel that your son shows some symptoms. To my limited knowledge, I do not think the steroid treatment has any adverse long term consequences. It is used for Asthma as a treatment. Maybe you can consult with Dr. K or Dr. Latimer on this matter. Dr. K will probably respond to your email, even if you are not a patient.

 

Elizabeth

[sf_mom]

You may know our story, our younger son who is 2 1/2 was diagnosed with Kawasaki's at 5 1/2 months old. At that time he was exposed to what the Dr.s now believe to be RF in November 2007 by our older son's friend. At time of play date, the child had a swollen gland the size of a golf ball and tested positive for strep the following day (we were not told about him being positive for strep until recently). He is now considered PANDAS as well as my older son who also took ill after play date too.

 

We are testing our 2 1/2 year old this morning. He did not have all the traditional signs of Kawasaki's but was diagnosed due to attack on heart ventricles. He was also treated with IVIG 5 days into high fever at hospital.... We believe if it was RF there is potentially still an underlying bacterial infection that may wipe out his immune system if not treated very aggressively.

 

I have worries about his current behavior. I think the most worrisome symptoms is his puffy eyes and dark circles because I remember that symptom so clearly with our older son! BUT, you are right its hard to tell at 2. 1/2.

[dut]

Thank you for the responses.... I have shot out e-mails to Dr. Cunningham's office via Kathy Alvarez ( I can't say enough good things about her and her staff, they have been so great with us), to Dr. Leckman, Dr.K and may also try Dr. Latimer.

 

Elizabeth - we are still waiting on the neuronal antibodies, just the CamK came back last night. It'll be interesting to see what they are like.

 

This morning I keep looking at our son and thinking 'stop freaking, he's just your usual lively, 2 year old boy' and wonder if having been there with our daughter I am seeing demons when there are none.

 

Anyone else have an opinion, please chime in....

 

Thanks, Danuta.

[dabel]

Thank you for the responses.... I have shot out e-mails to Dr. Cunningham's office via Kathy Alvarez ( I can't say enough good things about her and her staff, they have been so great with us), to Dr. Leckman, Dr.K and may also try Dr. Latimer.

 

Elizabeth - we are still waiting on the neuronal antibodies, just the CamK came back last night. It'll be interesting to see what they are like.

 

This morning I keep looking at our son and thinking 'stop freaking, he's just your usual lively, 2 year old boy' and wonder if having been there with our daughter I am seeing demons when there are none.

 

Anyone else have an opinion, please chime in....

 

Thanks, Danuta.

 

I agree with the others here. My child has gone 10 years with this. I wish I would have caught it earlier! I just received my test kit today. After reading these posts i think I am going to have one of my other chilren tested also. Do a lot of parents go ahead and test other siblings?

 

DeAnn