Do you find episodes to vary greatly?

[tantrums]

My 6 year old son is only in his second episode. His first presented with major mood liability, tics, seperation anxiety and uncontrollable rages. He was diagnosed very quickly once I realized something was seriously wrong and took him to the doctor. He was on Amoxicillin for 8 weeks and while it took a while, just about everything went away.

 

Within 2-3 weeks of being off of the amoxi, everyone in the house caught a cold that has been lingering. Nothing major for any of us - that is my PANDAS son, husband and myself, no other children. But of course, just knowing there was some sort of cold bug in the house had me nervous. He started with compulsive hand washing, which he has NEVER done before. It comes and goes - some days he will wash constantly, other days not at all out of the norm. He will not pick things up with the palms of his hands, but makes fists to try and pick things up. He says it is because of germs. The seperation anxiety appears to be returning, but not as severely (however we are early in this as last time, I think it was months before I realized what was happening). I can be out of the room without a problem (last time it escalated to me needing to be in the bathroom with him), but when we are near each other, he has to be physically touching me again. He also is very insecure and asking for approval and/or apologetic a lot of the time. This is the polar opposite of what we saw months ago.

 

Only one tic is showing at this time, yet it is different than the ones in the past. He is screaming! Out of the blue - at any moment he will just scream for one second and then he is done. His teacher told me he is now doing this at school, but with his mouth closed.

 

So my question is - is it "typical" for kids to present differently with each episode?

 

We have our appointment with the pediatric neurologist next week (which was made 2 months ago) so I am waiting until then. I would like the neuro to see some of this rather than bring in a child presenting with nothing.

[P_Mom]

quickly...yes, symptoms can change with every episode.

[colleenrn]

Yes, episodes can differ greatly.

 

I wonder though, if he could have strep right now. My daughter was on several courses of Amoxicillin when she first started with PANDAS and we would still get positive strep tests with a day or two of her being off Amoxicillin. Given his improvement on antibiotics, and given his decline when off antibiotics, I would be suspicious.

 

I don't want to sound like I am always bashing the use of Amoxicillin, BUT... I kind of am b/c of personal experience. While amoxicillin works for some people with strep throat, it is useless for others (my children). I think it is far safer, if you know your child is already dealing with PANDAS, to bypass amoxicillin and penicillin completely and jump right to a cephalosporin or a macrolide. If amoxicillin works, that is great, but if it doesn't, that is just one more day the child has strep. Just my opinion.

Colleen

[LaraM]

My son is five. During his first episode in late Nov./early Dec., he had extreme crying jags, hiding under tables, confessing that he did bad, bad things. Within days, he started obsessive hand washing, even waking in the middle of the night to wash his hands, and had extreme separation anxiety, wanting to go to Heaven, frequent urination, as well as nightmares (I think that was all--yikes it was a lot!!). When he was placed on Omnicef, the symptoms went away pretty quickly, but came back somewhat when he was given a lower dose. He started getting hit with Strep exposure from classmates (I can count three instances since mid-Jan.), and now his symptoms involve turning his food over and over asking "why does it look like this" (3-5 x's per bite), he just randomly inserts the sentence "Mom can I swallow something I don't know (or drool)"--even when counting. He also paces a lot at school in particular, but I notice it at home too--he also frequently urinates, but I keep forgetting about that one because when you compare it to everything else, it is easy to forget.

 

Last night he started talking about Heaven again and he has had two minor meltdowns (crying and flailing his arms when something minor occurred, but calmed pretty quickly afterwards). He isn't currently on antibiotics because our local pediatrician, who first mentioned PANDAS, said he didn't think it is what he has when his titer levels came back "within normal range". He goes to Dr. Murphy in St. Petersburg tomorrow as part of a clinical trial. If he gets placed in the placebo group, I am going to be terribly disappointed, but her research assistant said she would treat him if he doesn't appear to get better by the 3rd visit. We'll see...this is scary.

 

To make a truly long story short, yep, it appears that my son's symptoms change with each episode as well.

[thereishope]

Yes, with each exacerbation the symptoms varied. There were many overlapping, but the severity of each changed.

 

My son was like your with close back to back exacerbations. The second one did hit him harder. I think he wasn't done recovering from the first and that just made things worse. If it all came crashing back, my call is to go for a strep test. The cold you referred to could be the culprit, but you need to rule out strep. Are you giving him Ibuprofen right now in attempt to alleviate some inflammation and ease symtpoms? If not, start doing that. it may help. Also, you and your husband should rule out strep as well.

 

Also, my son's OCD main issue during the first exacerbation was contamination/germs/dirt. He washed his hands until they bled. I did show him to trade off the handwashing with wiping his hands on his shirt. Some may not agree to teach him a different compulsion but the hand washing had to stop. And it did ease up after that.He did also use the excuse of having to go to the bathroom knwoing he would be required to wash hands afterwards. At a young age, kids learn to lie to complete their OCD habits. Like your son, he also walked around with closed fists, wouldn't use his hands to pick things up. he wouldn't touch toys if he thought his sister touched them (she was 'contaminated"), he would ask if we touched heer and tell us to wash our hands if we did, if he thought he saw you touch your face, he'd melt down screaming, we couldn't hold his hand when we were even in the parking lot (he was 5). we had to hold his wrist. We could handle his food, get his utensils, get his cup, pour his drink, etc.Thank God he's over that and none of those problems remain.

[Kayanne]

We have our appointment with the pediatric neurologist next week (which was made 2 months ago) so I am waiting until then. I would like the neuro to see some of this rather than bring in a child presenting with nothing.

 

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device.

[tantrums]

We have our appointment with the pediatric neurologist next week (which was made 2 months ago) so I am waiting until then. I would like the neuro to see some of this rather than bring in a child presenting with nothing.

 

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device.

 

That's a good idea! We only have a High 8 recorder though. Although, I guess I could bring the whole camera to the doctor to show them. I'm not crazy about waiting another week, but it would be nearly as long anyway with the Ped by the time we got the strep test result. She has been WONDERFUL but is obviously not comfortable treating this on an on-going basis alone - hence the neuro. I'm just glad we have that appointment next week!

[ajcire]

Tantrums, I know what you mean about the timeline but I think that it might be beneficial for you to know if indeed it is strep that is acting as a trigger right now just as future reference.

 

 

We have our appointment with the pediatric neurologist next week (which was made 2 months ago) so I am waiting until then. I would like the neuro to see some of this rather than bring in a child presenting with nothing.

 

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device.

 

That's a good idea! We only have a High 8 recorder though. Although, I guess I could bring the whole camera to the doctor to show them. I'm not crazy about waiting another week, but it would be nearly as long anyway with the Ped by the time we got the strep test result. She has been WONDERFUL but is obviously not comfortable treating this on an on-going basis alone - hence the neuro. I'm just glad we have that appointment next week!

[Kayanne]

We have our appointment with the pediatric neurologist next week (which was made 2 months ago) so I am waiting until then. I would like the neuro to see some of this rather than bring in a child presenting with nothing.

 

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device.

 

That's a good idea! We only have a High 8 recorder though. Although, I guess I could bring the whole camera to the doctor to show them. I'm not crazy about waiting another week, but it would be nearly as long anyway with the Ped by the time we got the strep test result. She has been WONDERFUL but is obviously not comfortable treating this on an on-going basis alone - hence the neuro. I'm just glad we have that appointment next week!

 

We only have a high 8 too, but if you have a digital camera, a lot of times they will take video clips...just change the mode to video and hit the button that you use to take the picture as an on/off toggle...then you only need to bring the camera with you.

 

Once I learned how to do this, I have barely pulled out the video recorder.

 

~Karen