Psychiatrist recommendations for VERY complex case

[Anonymous]

DS 15 has Tourette's and chronic Lyme, which both came into "full bloom" about a year ago. As far as Lyme symptoms, there were none aside from motor tics, which we're not sure if it's from Lyme or TS or both.

Before a month ago, DS was mostly a happy-go-lucky kid, no behavioral issues, loved by all of his teachers and peers, and just an all around sweet, well-mannered child. Thankfully, none of that has changed, but what he is now on his second episode in the past month where he is almost non-functional and is falling over, falling into walls, and "nodding off" constantly.

Had him to a neurologist at Children's outpatient yesterday and he is admitting him for overnight testing to rule out any possible neurological causes. However, he feels strongly that these episodes are being caused by a severe anxiety disorder where he's internalizing his anxiety and it eventually manifests in physical form and becomes very debilitating.

Now if DS didn't have Lyme in the picture, I'd say that the doctor could be right on the money with his theory, but Lyme can cause SO many different symptoms, including anxiety/psychiatric.

We need to get to the bottom of this asap and get DS stabilized to a point where he's semi-functional, so aside from the testing at Children's I need to find a HIGHLY COMPETENT psychiatrist asap who is willing and able to think outside the box and doesn't think that chronic Lyme is non-exsitent like some doctors do.

TIA!

[Anonymous]

Wow, OP! I'm sorry you are dealing with this.

Are you sure a psychiatrist is who you need, thoough, and not a second opinion from a different neurologist or even other type of doctor? Immunologist or something maybe?

"Falling over, falling into walls, and nodding off" don't sound like anxiety symptoms to me.

[Anonymous]

17:29, I know, it didn't seem like the falling over could be caused by anxiety to me either, but there is no question that he has severe anxiety/worry during both of these episodes. It's very hard to describe, but although he's totally out of it 90% of the time, when he does talk or become semi-alert he talks about how severe his anxiety is, he's extremely sensitive to lights, sounds, any tiny little thing completely stresses him out and scares him.

I have heard of severe anxiety manifesting physically like panic attacks, however he's not having panic attacks, it's more like a continuous thing around the clock.

I'm definitely coming at this from every angle, and plan to also get him to an endocrinolgist to check things hormonally and also plan to find another Lyme specialist to get a second opinion on that as well.

I definitely don't want to put all of my eggs in one basket with the psychiatry angle, but for right now we have to get him stabilized so he's semi-functional and I suspect that meds may unfortunately be the only way to do that.

[Anonymous]

a friend recomends CT Gordon in Rockville. Supposed to be wonderful and very capable. Highly recomended.

[Anonymous]

Could it be related to PANDAS? Oh OP, I'm so sorry you're going through this.

[Anonymous]

You might want to post on the special needs board.

[Anonymous]

I would actually try to get an appointment with the infections disease team at childrens. They are GREAT and they see TONS and TONS of kids with lyme. If your kiddo is staying overnight for the testing, ask your admitting doc if they can have ID come and see you as an inpatient consult. It should be no problem, and will be faster that waiting for an office appt.

Sounds like you still need a good psychiatrist, but I think this would help put some more pieces of the puzzle together. Good luck!

[Anonymous]

that should say "infectious disease". Sorry!

[Anonymous]

OP,
What about Hopkins? How are things going?

[Anonymous]

http://www.ohpmd.com/ourpractice.html

Not sure where you are located but this is the best practice in Montgomery County that deals with Lyme Disease and other related issues. Dr. Fishman is excellent.


B. Robert Mozayeni is another doctor well known in MoCo for working with lyme related issues. He is in Rockville.

A good neurologist is Dr. Rashila Rajasingham. To say she is thorough is an understatement. Your first appt will be 2 hours minimum.


We were not at all happy with our experience at Children's. Wait times for appts were ridiculous and the doctor's were very hard to get to for follow ups. There are excellent specialists is MoCo we really helped us solve our issues.

[Anonymous]

Oh OP, no advice, but huge hugs and well wishes for you and your son. I'm sorry you guys are dealing with this. How scary.

[Anonymous]

Lyme can have significant neurological effects. My friend had to go on long term antibiotics to combat it, but many insurance companies now won't cover it as the standard of care. She had a good experience with Dr. Kane of Kane and Davis now in Bethesda. GL, OP.

[Anonymous]

OP, you should get a second neurologist eval. Psychiatrists are of no use for now if you want to rule out sx related to Lyme dz.