videotaping symptoms

[pmoreno]

I have heard that a lot of doctors never actually see the symptoms we're talking about - if the kids happen to be in the doctor's office and are not having tics at that time, or OCD type behavior, then it's hard sometimes to describe it. I did do a videotape of my daughter when she was at the worst of this 2nd episode (in August) and there is a doctor at Yale that is interested to see it. I did show it to Dr. K prior to IVIG who felt it was a very classic presentation of PANDAS symptoms. I'm wondering if anyone else out there would be interested in doing this - it would document what they are going through and make for a stronger case. Pat

[EAMom]

Hi Pat,

We have some short videos too...of some our dd's "movements"...not sure if they are tics, compulsions, or what. A child psychiatrist (friend of a friend from out of state) thought they could be choreoform (sp?) movements.

We also have part of a tantrum from before dd was in hosp. in March. It's on the cell phone however...don't know if dh figured out how to get it into a computer!

[peglem]

What I really need them to see is the rages. Unfortunately, I'm too busy dealing with them to film them or get someone to film them. She also strips off her clothing so, I really don't want that on film! But, once she had a rage in the doctors office he really understood what I meant. She'd had lesser behaviors (not so severe to me) before that and he kept asking, "Is this what you mean? Does she do this alot?" and I'd answer that this is not bad and we get way worse. It really took 1st hand observation for him to get it. So, I think filming is a great idea, if you can get it.

[dut]

Peglem - does your dd strip off during rages or anytime? My dd does this a lot during episodes, the minute we get in the house off come her clothes all due to the sensory defensiveness stuff. This, amongst others, seems a good barometer for us as to where we're at in an episode.

[peglem]

Peglem - does your dd strip off during rages or anytime? My dd does this a lot during episodes, the minute we get in the house off come her clothes all due to the sensory defensiveness stuff. This, amongst others, seems a good barometer for us as to where we're at in an episode.

 

When she's in strip mode (and it doesn't happen all the time) she strips her clothes off frequently and anytime. It doesn't seem to be related to the weather or temperature, maybe its sensory (although I hate to assume, I've been wrong too often). She'll keep clothes on for about 5 minutes when she's in strip mode and after 5 or 6 times of redressing her, we usually give up and let her go nude...so no pics if she melts down nude. You got me thinking though- is this part of her PANDAS? It was much worse before her strep was under control. Guess it could be an OCD thing.

[Darla]

I definately believe there are some sensory issues going on here with my son. I am in the begining stages of researching this topic, but maybe some of you guys could share some of your thoughts or experiences with your children with regards to this topic. Sensory Integration Dysfunction : SID is not necessarily related to autism or autism spectrum disorders (ASD). SID is its own diagnosis, but it can also be linked to other neurological conditions, including ASDs, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others.

 

My son was a colicky baby arched his back hard to comfort. Did not like tags in his clothes as a toddler. He's a very intelligent 7 yr old. (too smart for me! ) I know that every night at five o'clock he has a "witching hour". Hyper active is an understatement, hes off the wall. It's literally lasts for about a half an hour then hes fine. I looked a little bit into it so far, and it seems like he has some behaviors that resemble someone who has a hard time processing his daily events and stresses. Hes a very moody little guy, easily irritated. Low tolerance for pain, hot, cold, doesn't like to go on swings or rides. He is not ADHD or any of that. He can focus on things no problem. He just seems to fit some of these things.. any thoughts/experience on this?? All his neurological issues seem to always somehow be connected. which comes first? If hes got PANDAS and as a result has ocd, anxiety, tics, rages etc...and I do know that hes been a sensitive being since birth in regards to the sensory issues... I don't know it's all just so puzzling.

[dut]

Some time after age 3, our dd started being hassled by sock seams but nothing else seemed to bother her, maybe some rare tags. During her 1st episode it got so bad she would only wear maybe 2 tops and 2 trousers and no socks at all, just sandals. She also got to hating the sound of flushing toilets and complained they were too loud especially public ones. This episode (which we are finally coming out of and all tantrums/rages etc have finally gone,as has most of the ocd, certainly down to subclinical level any :-) hurrah) she would wear most of her clothes but stripped off the moment we got home.

 

I'd forgotten, it just came back to me now, but during the 1st episode she wouldn't let me brush her hair and she also complained that baths made her itchy. I think both were down to the sensory defensiveness issue.

[EAMom]

Sensory defensiveness can be a symptom of PANDAS. I would say that my PANDAS dd's "baseline" has some mild sensory defensiveness, with clothing types etc. When her PANDAS was bad her sensory defensiveness got much much worse, with resulting tantrums.

[dut]

Yeh , I absolutely feel that our dd's sensory stuff is caused by the PANDAS. I even wonder if her early sock issues were PROBABLY her 1st super minor PANDAS episodes.. who knows?

[amy s]

My dd also has sensory issues since her 1st pandas episode. Her's is hair/head related (suddenly she can't stand to have her hair brushed) and also loud noises bother her also very sensitive to smells. These things have not really went away after IVIg like some of the other symptoms did.

[pmoreno]

I remember with Gaby's first episode last year when she was in her worst week, she stripped off all her clothes, pulled the sheets off her bed and was jumping up and down on her bed, laughing hysterically - when I tried to grab her she jumped from bed to bed (her twin's bed is in there too). That was the only time I had any experience with this. About the sensory stuff, I do remember that when she was young (maybe up until 3 years old) she was very concerned about removing tags from her clothes and absolutely did not like seeing any cobwebs in corners of the house - no matter how small. I don't know if the stripping of her clothes was really a sensory thing - I think it was just part of the erratic behavior that went along with that whole period of time. Pat

[peglem]

I remember with Gaby's first episode last year when she was in her worst week, she stripped off all her clothes, pulled the sheets off her bed and was jumping up and down on her bed, laughing hysterically

 

This and so many things you guys say about your children's PANDAS behaviors is so similar to my daughter. It really makes me wonder how much of her behaviors can be attributed to autism and how much to PANDAS? I think her strep went untreated for about 6 years...and all that time, as she got worse and worse, it was all chalked up to autism. I suppose it could be possible that the autism is caused entirely by strep/PANDAS.

[Indigo]

My dd would also take her clothes off a lot and also wouldn't wear turtlenecks or let me brush her hair. It was sensory and helped a lot by the body brushing regime. When her PANDAS episodes are flaring, the sensory stuff bothers her a lot more again and I recently tried the body brushing again during one episode. I think that yeast issues can make the sensory stuff more accute to her, as well. However, the supplements that I mentioned in the other thread have helped with everything all the way around, including sensory.

[EAMom]

Ditto those thoughts...PANDAS dd went through phases when I had to cut out all the tags in her shirts also where her socks bothered her (I buy"no-line" socks now). I wonder now if they were low grade PANDAS episodes.

 

It'd sure be nice to know how much is PANDAS and how much is "normal" sensitive kid stuff!

[amy s]

My dd would also take her clothes off a lot and also wouldn't wear turtlenecks or let me brush her hair. It was sensory and helped a lot by the body brushing regime. When her PANDAS episodes are flaring, the sensory stuff bothers her a lot more again and I recently tried the body brushing again during one episode. I think that yeast issues can make the sensory stuff more accute to her, as well. However, the supplements that I mentioned in the other thread have helped with everything all the way around, including sensory.

 

 

Indigo--

Do you mind...I've never heard of a body brushing regime. What is it? I did try to google it and sounds like a dry body buffing type thing to get rid of dead skin cells? How do you do it and when?

When my dd gets really (pandas) sick I often would give her regular massages with lotion to help her relax. There has been several in my dd's world who have brought up sensory issues and the school even put in her iep to have an OT eval for sensory issues. But it hasn't been done and so I don't have any direction as far as that goes. What's been your child's experience with it? Thanks!

regards,

amy s