Things I've noticed.

[Shari]

Last Monday, at Wee's riding lesson, I noticed how dramatically he struggled with motor planning while riding a lesson horse. For a boy who was so ahead of the game in gross motor skills at 3, he's drastically behind it now.

I left him home for an hour wth husband while I went to a meeting Thursday. He went to bed at 6pm because he was afraid he'd do something to make husband angry at him (wasn't afraid of husband, just afraid he wouldn't be good enuf for husband while I was gone).

His anxiety has been very high lately.

We took this little trip, and even tho he's taken short trips, every time we said we were "going to our hotel" he would flip out, til we figured out he thought "our hotel" was the one we left hours ago in another city (he kept thinking after driving 3 or 4 hours that we were going to turn around and drive back to the hotel we stayed in the previous night).

He repeatedly said "toe-hell" instead of hotel, and other words were flipped around, tho I'm not recalling them off the top of my head...

He can no longer tie his own shoes.

Letter/sound relationships are very foggy, at best. Even correctly identifying letters was off, at times.

I'm gonna be calling his docs.

 

[gcvmom]

Those observations are concerning.

Has he ever had a brain MRI or similar study?

 

[Shari]

Those observations are concerning.

Has he ever had a brain MRI or similar study?

Yeah, a ton of them, but its been a while.

He's also been very afraid of the dark lately. Always is to some degree, but its getting crazy now. Won't go to the bathroom alone, even in the hotel room. "Wait outside the door, mom!". And I went to the campere at home before we left and he stood outside the door and watched me...when I got in, he said "I kept telling myself "you're a big boy, you're ok" over and over while you were gone, mom!" and was proud of it.

 

[gcvmom]

FWIW, my BiPolar (BP) kid is still very anxious about the dark, and he's 13. He won't even go out to our car parked in our driveway at night (where there's a bright streetlight right next to our driveway), or to our trash cans on the side of the house (where there's a motion light that comes on the second you go around the corner -- and it's less than 10 feet from the corner where our well-lit porch light is located) without someone accompanying him. And he still insists most nights that he has a rather bright nightlight on.

Do you have any theories of your own for why you're seeing some of these "regressions" in him?

 

[susiestar]

I am sorry. This is scary. I hope the docs can help.

Hugs.

 

[Shari]

No theories unless its just anxiety-based. Was hoping someone else did, tho!

 

[gcvmom]

Is he having more seizures?

 

[Shari]

Not that I'm aware of. Did make a comment the other day something along the lines that he remembered the whole day, but it was something I chalked up to him just being a dramatic oddball. But odd enuf I remember it.

 

[gcvmom]

Well, I'd definitely write down what you see, dates, circumstances, and keep a journal or log of it so that when you're back at the psychiatrist, neuro or whomever, you can lay it all out there. Does he go back to see anyone soon?

 

[Shari]

No, but I'm going to call.

I'd like the OK doctor to see him "off", too, so will probably call him.

 

[LittleDudesMom]

I agree, write down all this stuff and make an appointment. Anxiety is one thing, but regression is totally another!

Sharon

 

[SRL]

While in periods of stress, it's not uncommon for kids with Autism or Autistic traits to take backward steps in areas they'd previously made forward progress, or for new related issues to appear (speech, sensory, social, etc).

I'd be calling his prescribing doctor immediately. Has he ever been on medications that specifically target anxiety?

 

[JJJ]

It could be the Depakote. Tigger went from being advanced across the board to behind in school and physically awkward. We are weaning him off the Depakote and saw improvement within two weeks of cutting his dose (and he will be off completely in 3 days). I never would have thought it was the Depakote if our school psychiatric hadn't told me about a new study that showed decreased IQ on Depakote.

 

[crazymama30]

I was wondering about the Depakote too. Not sure if that may be it, but it may be worth bringing it up to the doctor. Hugs, and hope there is an easy fix.

 

[DammitJanet]

If it is not medication related, there is a disorder that is regression based and is in the autism spectrum. I cant for the life of me remember the name but I believe my uncle suffers from it. Kids get to a certain age and level and then regress backwards.

I know these are the symptoms my uncle had but I doubt that he was labeled with this disorder all those years ago. (1942) He was eventually placed in an institution which is where he has been for as long as I can remember. I know it has been since before I was born and I am sure it will be until he dies. I do know the place he is in is fairly nice. I visited him several times and he had one set of classic savant abilities. He knew all of our names/birthdays/days we were born on just by seeing us. It was odd.

 

[DaisyFace]

Shari--

I have no guesses as to what this could be....but it's certainly very worrying.

Let us know what the docs think...

--DaisyFace

 

[SRL]

If it is not medication related, there is a disorder that is regression based and is in the autism spectrum. I cant for the life of me remember the name but I believe my uncle suffers from it. Kids get to a certain age and level and then regress backwards.

The regression and placement on the the spectrum sounds like it might be Rett Syndrome, but there are several other disorders whose symptoms lead to a misdiagnosis of Autism. I believe with each there can be a range from mild to severe in symptoms.

Rett Syndrome
http://en.wikipedia.org/wiki/Rett_syndrome

Fragile X Syndrome
http://en.wikipedia.org/wiki/Fragile_X_syndrome

William's Syndrome
http://en.wikipedia.org/wiki/Williams_syndrome

 

[smallworld]

Some of these syndromes can be diagnosed with genetic testing. Has wee undergone any genetic testing?

 

[Shari]

No genetic testing. I have requested it, but its never been done.

I'm glad I took him to that riding lesson last Monday, you just get so used to things being out of the ordinary that you sometimes don't notice how out of the ordinary they are.

Thanks for the input.

 

[SRL]

No, but I'm going to call.

I'd like the OK doctor to see him "off", too, so will probably call him.

Video also might be helpful here.