confused about PANDAS

[michiganmom]

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

 

 

I thought the only symptom was tics, but after reading what other people had to say about behavior changes...I'm wondering. Sometimes it seems like my son will be great (behavior) and then the next day or two....quite challenging......I just figure it's normal kid behavior??

[michiganmom]

So everyone has been giving me a lot to look into. Thank you.

 

So it seems that almost anything can set the tics off. I thought it was only strep....a lot to think about...where to begin....

 

What type of doctor is recommended?

[Fixit]

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

 

 

I thought the only symptom was tics, but after reading what other people had to say about behavior changes...I'm wondering. Sometimes it seems like my son will be great (behavior) and then the next day or two....quite challenging......I just figure it's normal kid behavior??

 

 

for us it's just ts...but i will note that he may have had sensory issues when younger,,,but nothing crazy...mostly walls and curtains when walking and chewing on anything.....but couldn't that just be normal

his handwriting was ok but gets illegible...but again if he's sick or tics are his problem wouldn't that be a motor sKill...

Ps as per the other notes i posted about our new little journey...his handwriting yesterday was the best we can remember in a long time..we'll see..

One more but...he used to love to draw...but stopped, he said i just can't seem to do it that good anymore...(and i don't even know if i should mention them because they seem so trivial, because he still does very well in school)

 

but these things pail(so minor) in conparrion to his ticcing every 10 seconds(really)...i might say we are down to 1 every 30 seconds or minute..sometines it can be a couple of minutes but then he'll do a cluster or just one...no pattern

i'm just concerned, like lauren's mom, if i got this right...she saw some benefit while trying abx, but i guess wanted to nip it the bud...

and as they get older it might not be impossible to recover, just longer and harder..and it still what are we chasing...the current illness we know of or the messed up t-cells and as everyone has a different story...

ie...first onset.

.how quick were you able to address it correctly, that and every other time

childs age

how many prior episodes

what illness are you addressing .......and an illness that effects you alot, might only effect somone else a little, even w/in a pandas subgroup..

for me..i will keep fighting till he is in remission or i see him into adulthood leading a full, active, social, educational, careered, life based on his decisions, not this diseases limitations it wants to put on him(because i am upset that no one has listed to me or wrote in his notes how many times i said/asked about pandas...and i gave up asking as long as i got the abx because i knew it would fix him ,( until this last time))

[thereishope]

I have a feeling if you look more into it, you may find some OCD too. Here is a link to some OCD tendencies that parents on this forum have seen. Sometimes a parent becomes so used to the habits they don't realize they are not within the norm or they od not realize what OCD can really look like.

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

I don't know if anyone has suggested this, but some PANDAS kids will have an easing up of symptoms with Ibuprofen. Something to try.

[michiganmom]

I have a feeling if you look more into it, you may find some OCD too. Here is a link to some OCD tendencies that parents on this forum have seen. Sometimes a parent becomes so used to the habits they don't realize they are not within the norm or they od not realize what OCD can really look like.

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

I don't know if anyone has suggested this, but some PANDAS kids will have an easing up of symptoms with Ibuprofen. Something to try.

 

 

 

I've wondered a bit about OCD. Sometimes he'll say, "one more time" and then repeat the action", he'll usually do it a few times in a row. I was thinking it was part of the tic.....

 

There was also a period, somewhat brief, where he was washing his hands everytime he got something on them....could have been three times with in a few minutes and I was thinking OCD but again, that lasted less then a week.

[airial95]

If you're not sure what other beh symptoms he might be having, Buster created a "charting" system, where he tracked several common beh issues with a numerical grade 0-9 based on how severe it was that day. (I'd post a link to it, but I'm relatively new here myself and not quite sure how to do it, if I figure it out I'll post - if not, can someone help?)

 

My son is only 2 1/2, so we went 6 months with his complete personality change before getting help because we just thought it was those terrible twos! 7 1/2 weeks on antibiotics and he's closer to the sweet, mild mannered little boy he was a year ago. Our challenge has really been trying to differentiate between the OCD/ADHD/ODD and "normal" 2 year old behavior.

 

We've personalized Buster's system for more age appropriate issues (can't really judge a 2 year olds handwriting!) and have been using it for about 5 weeks now. It's really helped us narrow in on what his issues really are. Once we get enough data we're hoping to try to focus it further and try to identify some of his common OCD/ODD triggers.

 

You don't have to go into as much detail as all of that, but even journaling daily on his ups and downs can help you identify patterns you may not have even noticed were there.

[thereishope]

Hm. The "one more time" is something my son would do. For him, that wasn't a tic. They have that "just right" feeling. You've probably had that before. You just feel like you need to do something, then the anxiety builds and you may feel like you'll explode if you don't do it. But, for them, it's 100 fold. With a tic, I don't think he'd be able to say he needed to do it "one more time". With a tic, I that's involuntary.

 

As for hand washing and it not staying around. OCD can morph. Perhaps he replaced it with a different OCD tendency. That happens as well.Or, there is a chance it was sensory and feeling something on his hands made him feel awful. With that one, I'd ask what his reaction was to something being on his hands, what the anxiety was like, etc. My son had hand washing as OCD. The severity of the hand washing did vary and I was able to help him overcome it. But then he also graduated to just wiping hands on his pants after touching everything, just avoiding touching things, walking with closed fists. He also, even at 5 years old, learned to lie in order to wash his hands. He just said he needed to go to the bathroom to justify washing his hands.

 

I've wondered a bit about OCD. Sometimes he'll say, "one more time" and then repeat the action", he'll usually do it a few times in a row. I was thinking it was part of the tic.....

 

There was also a period, somewhat brief, where he was washing his hands everytime he got something on them....could have been three times with in a few minutes and I was thinking OCD but again, that lasted less then a week.