The answer to the PANDAS mystery

[saidie10]

We discussed my youngest son with Dr. K during our phone consult with him and he said that only time would tell. I don't think he puts a lot of weight in the Cam K score and since he did not have elevated titers and no immune deficiency "yet" he would not recommend treating at this time. I was very frustrated to say the least because he had not seen the Dr. Jekyl and Mr. Hyde child I did during his last bout with strep. Motor tics of the hands, wrists, ankles and toes, separation anxiety and unfounded thoughts and fears. CLASSIC PANDAS presentation, but other than his Cam K and one elevated Neurotransmitter, Dr. K said no ABX at this time and that we would treat him if anything further developed. I don't think it is fair to my DS5 to just wait and see if anything further develops!

 

I am hoping the first Immunologist we saw will prescribe a steriod burst or ABX for a period of time to see if it helps with the still raging, angry, aggressive, and easily frustrated behavior we see. I know anti inflammatory's help because Motrin does give him some relief from his wild behavior. He actually calms down! Not sure where we will turn if no help from him. Maybe Dr. T or Dr. L?

[kimballot]

We discussed my youngest son with Dr. K during our phone consult with him and he said that only time would tell. I don't think he puts a lot of weight in the Cam K score and since he did not have elevated titers and no immune deficiency "yet" he would not recommend treating at this time. I was very frustrated to say the least because he had not seen the Dr. Jekyl and Mr. Hyde child I did during his last bout with strep. Motor tics of the hands, wrists, ankles and toes, separation anxiety and unfounded thoughts and fears. CLASSIC PANDAS presentation, but other than his Cam K and one elevated Neurotransmitter, Dr. K said no ABX at this time and that we would treat him if anything further developed. I don't think it is fair to my DS5 to just wait and see if anything further develops!

 

I am hoping the first Immunologist we saw will prescribe a steriod burst or ABX for a period of time to see if it helps with the still raging, angry, aggressive, and easily frustrated behavior we see. I know anti inflammatory's help because Motrin does give him some relief from his wild behavior. He actually calms down! Not sure where we will turn if no help from him. Maybe Dr. T or Dr. L?

 

Saidie - it is so hard with little ones - Please be sure to track his behaviors and make notes of any significant events, such as phone calls from day care or a babysitter if he hits another child, and be sure to make a note of all medicines you give him. This my be very valuable in the future.

 

Also, does your child have illnesses other than strep throat that could be triggering this? Sinus infections? Skin rashes? Respiratory infections?

 

My son had PANDAS very young and no one knew to diagnose it at the time. Recently, I was able to get his medical records and his day care records and put them together and the pattern of behavior problems and illness is very obvious. My son NOW has mild immune deficiencies but did not at age 2. However, I think the repeated pattern of behavior and illness would have helped a PANDAS doc to diagnose him if we would have seen a PANDAS doc.

 

Best wishes!

[airial95]

I'm the mom of a little guy, he's only 2 1/2. He was dx about 2 months after his second birthday. Our ped, who is pretty knowledgable, but by no means an expert, made the dx without running any of the blood work. His thought was at his age, the results would be in conclusive and unreliable, immune system still too young, etc... But he did start treatment (even with a neg throat culture, but we think it was impetigo that set us off) because he was such a classic presentation. When we saw dr Murphy last week she agreed with this opinion, although she ordered the labs anyway just to see.

 

So whole I agree that the absence of certain things in the labs in young kids doesn't mean much and you should still push for treatment

[norcalmom]

Interesting.

Has anyone started to test pandas blood for TLR activation?

So, CamK II activation in additon to a TLR test may be enough to verify pandas? (or this may jsut be furthur proof that camK II test is valid pandas test)

 

Any herbs or supplements that effect the TLR?