Are these behaviors PANDAS or not?

[sptcmom]

DS8 had an acute onset textbook PANDAS in March. We have been treating him with abx and are 10 weeks post IVIG with DR K. DS has the following behaviors (on top of everything else)

1) repeats catch phrases from books he reads (aloud) or TV shows (Suite Life, Zeke and Luther etc)

2) Has imaginary conversations pretend play like with characters of the show- makes up his own little show and talks to himself on the toilet, sitting down anywhere he feels hes alone and can do this

3) Reads the book or whatches the episodes over and over again

4) He's able to snap out of it instantly when spoken to or when he's finished his business on the potty etc.

5) he does it everywhere he can carry a book with him, back seat of the car, restaurant...

6) memorizes entire episodes of shows and repeats that often- plays all the characters himself- I mean enthusiastically, with gusto full on stage performance even on the potty

7) perseverates on catch phrases and laughs after each repetition- " thump, sock! " hee, hee and so on.

8) Even without a book or TV on, he recalls and repeats on and on and on.........

Its very scary to watch him go into this world so effortlessly. He would rather just lay down and do that with a book in hand. I am constantly hearing him chit chat, repeat phrases, read over and over and over again. Its driving me nuts! bonkers! I simply don't know how to stop this. Nothing that I say seem to make a difference.

he has also age regressed last two weeks- so very immature and childish , 8 going on 4 about understanding explanations. Almost like he doesn't even hear why I don't want him to not go to camp for a week ( we were exposed to strep at camp last week). he simply carries on about missing the show prep, swim practice blah blah.

Is this part of PANDAS do you guys find ?

Should I expect improvement with IVIG and full strength abx?

Anything else I can try to help him?

Do any of your children have similar issues?

Its seriously weird behavior and his friends look at him like he's from Mars when they're watching a show together on a playdate.Any information will point me in the right direction.

Thanks so very much

Jodie

[sf_mom]

Jodie,

 

How long has he been doing the symptoms listed? Has it been getting worse each day? Was this something he did prior to IVIG or new symptom? If so, was he doing it as frequently prior to IVIG? Have you seen any improvement with the change in antibiotic and how many days has he been on the higher dose?

[sptcmom]

Jodie,

 

How long has he been doing the symptoms listed? Has it been getting worse each day? Was this something he did prior to IVIG or new symptom? If so, was he doing it as frequently prior to IVIG? Have you seen any improvement with the change in antibiotic and how many days has he been on the higher dose?

[/quote

 

Wendy, he's had these since he was 4 years old, off and on. He has a few months of age appropriate behavior and then back to this stuff. yes, he was doing it prior to IVIG. Its not getting worse but seems to have ramped up last few days since the exposure on Monday. He has been on the higher dose since wednesday pm after I spoke with you. Yesterday was a good day relatively, today its worse.Infact he's in the tub right now "reading" his Diary of a Wimpy Kid book and repeating the catch phrases over and over and giggling like a two year old.He's also become more masochistic so to speak- if he knows he hit me and made me sad/teary eyed, he tries to hit himself just to "make it fair". This is new behavior last few weeks, never before seen. Im just so scared.

Edited July 26, 2010 by sptcmom

[sf_mom]

Jodie.... I am sorry its been rough lately. I still think you need to wait it out to see which direction this will go with the recent exposure. You are doing everything 'right' at the moment. You might want to up bentonite clay or add Motrin when needed. In two weeks pursue the Igenex testing. I think you'll have a much better sense of how he is doing by then.

 

Hang in there.

 

-Wendy

[Phasmid]

My boy did a lot of repeating stuff, but yours sounds more "on purpose" for lack of better description. My boy was in a near trance with no emotion when he repeated phrases and words that he heard. I might ask a developmental psychologist about this. It may be normal for age, but sounds a bit younger than his age. When my boy was about 3 and 4 (time this all started) he had an imaginary friend whom he had to consult before using the toilet. He had to repeat a whole script before he could go. We thought it was really funny (had no idea what was building in him) because it involved riding a jet ski, and meeting a new friend! Hilarious, but now I look back and realize it was that he had some OCD. My son had SEVERE echolalia during his very worst episode following untreated pharyngitis that was certainly strep.

[sptcmom]

My boy did a lot of repeating stuff, but yours sounds more "on purpose" for lack of better description. My boy was in a near trance with no emotion when he repeated phrases and words that he heard. I might ask a developmental psychologist about this. It may be normal for age, but sounds a bit younger than his age. When my boy was about 3 and 4 (time this all started) he had an imaginary friend whom he had to consult before using the toilet. He had to repeat a whole script before he could go. We thought it was really funny (had no idea what was building in him) because it involved riding a jet ski, and meeting a new friend! Hilarious, but now I look back and realize it was that he had some OCD. My son had SEVERE echolalia during his very worst episode following untreated pharyngitis that was certainly strep.

Thanks so much Wendy, Phasmid. I do plan on Igenex in 2 weeks and all titers too. I want to check on strep titers and myco especially.

Phasmid- have you ever seen age regressed behavior? We've had that since forever, tantrums, can't resolve conflicts in school without crying etc.

The immature child seems to be a part of PANDAS from what I understand. So does the child ever get age appropriate?

Edited July 26, 2010 by sptcmom