Xlnt MD recommendation needed ASAP!

[Anonymous]

We have a VERY complicated situation on our hands with 15 year old DS and need to find a highly competent MD/pediatrician in NOVA area immediately.

We've been working with a holistic MD who I think is very competent with various issues, but not with what we're currently dealing with.

Backgrounder: DS started rapidly progressing onset of Tourette's syndrome a year ago with motor and some vocal tics that got to the point of looking like seizures. Tics have waxed and waned since and surfaced in a wide variety of motor and vocal tics. DS was also diagnosed with chronic Lyme. Not a strong positive, but a positive nonetheless.

Never had any typical Lyme symptoms other than the motor/vocal tics progressing so rapidly. We now know in retrospect that he has likely had Tourette's since age 2, but it was never diagnosed until last year because he only had an intermittent eye-blinking tic. Doctor thinks onset of puberty enabled Lyme to surface, which in turn excacerbated the pre-existing Tourette's/tics.

Fast-forward to a month ago. DS went to camp in NC for 10 days, same one he went to last year (pre-tics) and LOVED it. Had to come home after day 5 on emergency to due over-exhaustion. This is an academic camp, so it's NOT a high activity camp, but we think the stimulation and excitement of it all was sensory overload for him.

Picked him up at the airport and he literally collapsed on the floor, had to get a wheelchair to take him to car. Got home and he kept falling into walls and laying on floor "sleeping." Okay, this is hard to explain, but he was doing this (not sure if he could control or not) because he said his body felt like it needed to sleep but his mind kept racing. This went on for nearly a week. Took him to dr., had tons of bloodwork, found nothing other than dehydration, so he got IV fluids at drs. and went home.

During this time, one of the biggest issue was his MAJOR anxiety about not sleeping. Even though he was sleeping through the night pretty well, during the day he would constantly be doing this falling into walls and falling on floor or falling over while sitting because he kept saying he "needed to sleep." He wouldn't actually fall asleep, but he would close his eyes and you could see his eyelids fluttering so you know he wasn't totally out.

After a week, he snapped out of it and was back to normal, however he did have a residual TIC that resembled narcolepsy, where he'd flop his head down for 10-15 seconds, close his eyes and make a snoring sound. This is what typically happens with him, where something makes an impression on his brain (like the camp/sleeping episode) and it will eventually become a tic.

This first sleeping/anxiety episode happened about a month ago. This past week, it started up again, but this time he was not away at camp, he was here at home and having very little activity. The only thing he did was go to a VERY low-key photography "camp" for 3 hours per day at the community center. It was basically a class and they would go right outside the center to shoot some photos, so certainly nothing physically active or stressful.

Anyway, we're not sure if it was that that set this episode off, but this time it's even worse than the last as far as his anxiety level and the falling over into walls, floors, etc. Took him to the doctor again, doctor said he can't find anything apparent and thinks it might be sort of a PTSD thing from the previous camp.

This time, he was barely eating anything for the past 3 days and all he will do is lay on the couch or in his bed. You can barely hold a conversation with him because he keeps closing his eyes and "nodding off" every few minutes. When he is able to talk and we ask him what's going on he keeps saying it's because he needs to sleep but he can't. So his mind is racing, but his body wants to sleep.

Also, this time he did not sleep for an entire night 2 nights ago and last night didn't fall asleep until after 2am. Last time he was sleeping through the night.

We would have hospitalized him by now, but the reason we haven't is because he is SOOOOOOOO petrified that something is seriously wrong with him and afraid of going to the hospital that we're concerned it would send him totally off the deep end.

However, at this point we may not have a choice because we need to get to the bottom of what's going on. We don't know if this is possibly a deep depression manifesting in this fashion (he's never had depression before and is a mostly happy kid); or if it's part that and something else, or if it's from the Tourette's or Lyme or something all together different.

So......if anyone can recommend a VERY competent pediatrician who we can get him into asap. Ideally a doctor who has privileges at Children's Hospital in case we need to admit him. TIA!

[Anonymous]

I am sorry--this sounds so stressful. Our pediatrician is fabulous but I am don't think she has privileges at Children's. Your story reminded me of this: http://thestradtnerfamily.com/findingournewnormal/?p=44

[Anonymous]

Have you tried to get in to a neurologist? I just wonder a out whether he may be having partial seizures.

[Anonymous]

Dr. Lavenstein at Children's is a neurologist with a specialty in movement disorders. I would make an appointment there and with whomever else you find.