Date: Saturday, September 17, 2011
Hello Dr. T,
Here is some information about Caroline's behaviors and most significant issues.
She has always had some degree of "OCD" such as wanting to watch the same shows over and over and other traditional
autistic traits, but the sudden onset that occured at the end of July into August involved much more.
Tapping on things and moving them in a very specific way. Today, she was filling a toy piggy bank and tapped each coin and
then made it move very robotically, the same way each time to the bank. If someone interfered, she'd become extremely upset
and had to redo the coin.
When something drops, she has to pick it up, drop it again (to undo the drop) and then put it back, precisely where it is.
Almost constantly picking at skin on lips and thumb nails. Both are in terrible shape because of the compulsive picking.
She wants a certain kitchen drawer open (it has her dvd's in it), if someone closes it, she calmly goes to reopen it... if we don't
let her, she can't regain composure until it's open again. She also has to have the dvd's arranged exactly in certain way, not
even 1 inch out of order.
If anything falls off a seat in the car, she needs to have it put back exactly where it was. If I have something on my lap and I put
it elsewhere, it needs to go back on my lap.
Her language has become much more garbled/muffled when reading or answering questions -- this one's hard to describe.
Throat Clearing Tic... all day long. Sometimes more than once a minute, sometimes she'll go 30 minutes without doing it.
Her handwriting has gone from average to very very poor. She's putting letters on top of letters.
She completely breaks down if a drop of water gets on anything. Must dry it off immediately.
At this same timeframe (end of july and on) she decided I was to be the only one to read books to her at night (not alternating
every other night with her Dad) She wanted no one but me. Much more clingy / afraid I'm going to leave the house... generally
only in the evening. This has gotten slightly better (she will go to a different room).
Bedwetting began - same time frame.
She will only watch shows in a certain order -- And must start at exact right place.... also, title on the TiVo must be in same place
as last time (eg top of screen). If I turn off a show before she watches all in a set, she'll think about it for hours, insisting it be
put on in the same place. She can't get past it or do anything else. Sometimes, if the order isn't right, we need to start over on
the contents screen and scroll in the right order.
She also has a global lack of interest in playing games, looking at toys or reading books (things she used to enjoy). If we can
get her to play something, she just sets it up and then leaves.... probably because she can't control things after that point.
I'm sure that's more examples than you need -- I could go on of course!
Some things surrounding the timeline of the onset (not sure if any of them are related):
Stopped MB-12 shots July 4th.
Homeopathic remedy, Belladonna July 7th, stopped diflucan (per homeopath's request)
Very, very good behavior (best in a long time) July 1-18.
July 18, slight increase in OCD tics, increased picking on fingers and teeth grinding. I suspect this is yeast and restarted
Diflucan on July 23.
July 26-Aug 10, very good. still underlying OCD, but some very nice behaviors -- playing, looking at books etc...
August 10th - blood draw at Hospital
August 11th - OCD increased (that's all I wrote in my notes)
August 13th - 38th round of Andy cutler chelation with ALA and DMSA (which can lower neutrophils)
August 15, sick with a cold. This is when the raging, very troubling OCD was defintiely present and has not left.
Sept 5th, another cold.. this time the cough has lasted until now (still with her as a tic)
Sept 9-15 awake the majority of every night (12-6:00 am; the shortest was 1-4am) and sleeping until late in the day.
Sept 12th & 15th, started Neurofeedback sessions -- could be a coincidence, but the OCD has increased since.
Sept 16th, New hand stimming started, OCD is worse... compulsively touching and tapping. more teeth grinding. Handwriting is
THINGS TO NOTE: Last summer she was like this (not quite as bad) and the behaviors went away when we treated her gut with
Vancomycin and Flagyl.
In the past, all Immune Modulators or Boosters that we tried resulted in a few days of amazing behavior and then a crashing
(into what I assumed was a yeast flare)
When we used Low Dose Naltrexone, she was miraculously social for a day, but that disappeared and she was wide awake most
of the night for two weeks straight... it took us weeks to get her back to the point she was at prior to the LDN.
That's all I can think of! Overall, mother's intuition tells me something is really wrong. Her brain is incredibly stuck on these
OCD thoughts and it's getting in the way of everything.
Cognitively, she's still fine and her eye contact / engagement is average (not great).
She's been spacy, but that's typical for her.
Her main autistic issues are: language - apraxia, often needs a cue before she can form the answer to a questions, spacy,
disconnected, always on the go, lots of scripting and wandering, difficulty focusing and completing tasks. Very little spontaneous
language and significant social deficits... will play alongside peers, but generally remains in her own world.
Her best features are: very kind, loving and generally happy. No angry behaviors. Very cognitively gifted, can read etc...
Always aims to please people... which is how I know that when she truly can't do something it's because of OCD -not behavioral.
I hope some of this helps a little and I look forward to speaking with you tomorrow.
Thank you so very much for taking time on the weekend for us!
Note to readers..... In retrospect, Caroline had a lot of OCD in her past, but I didn't label it as such in my mind. I thought of it as
sensory processing disorder or autism. For example, much of this blog post: A Girl and Her Duck centered around compulsions
(water not getting on anything, extreme irrational seeming rigidity about routines) rather than sensory issues.