21yr old DD with sudden onset OCD/severe anxiety

[afanofosc]

My dd is developmentally delayed due to seizure disorder and hypoxia at birth. She has happy and well-adjusted, basically normal aside from her developmental delays until February 2014 when all of a sudden she became severely anxious, constantly worried about whether she was going to die or get arrested, hyper-sensitive to sounds or things she saw, worrying about shadows, tip-toeing around the house in case she stepped on something bad, standing up then sitting down repeatedly. Her neurologist has done EEGs and MRIs which are all "normal" for her situation with a seizure disorder. She is currently on topiramate (generic topamax) for seizure control.

 

Recently we lost a Psychiatrist that we started to see last September. She got mad at me when I told her I thought it was PANS/PANDAS and she refused to see my daughter any more. She had prescribed cetalopram which as far as I could tell had no positive effect. Right around the time our dd started on that she started to experience leg spasms which we thought might be caused by the medicine so since it did not seem to be lessening her OCD we weaned her off of it and she still has leg spasms. For a while we were also giving her clonazepam when she seemed extremely anxious and couldn't sleep but we weaned her off that as well because it didn't seem to do much either and we read some bad stuff about it on the web.

 

We have been using fish oil, turmeric/curcumin, Vitamin D, CALM (a magnesium supplement), Tranquilix, and ibuprofen to try to help relieve the symptoms but can't really say that we see any real improvement. Maybe it is helping keep worse stuff at bay, I don't know. But I don't really know what kind of doses people find effective, if at all. I just ordered some oil of oregano in capsule form which I thought we would try.

 

Last week she seemed to be coming down with a bug of some kind so we got her in to see her GP. Her neurologist was willing to consider PANS/PANDAS as the diagnosis so she said ask her GP for a strep test the next time she saw her. So we did. The throat culture came back positive for strep. It sounded like good news to me. They gave her a shot of antibiotics that I'm told is the equivalent to a 10 day course. My wife says she thinks it was penicillin. This was last Wednesday. I was really really hoping for signs of improvement but mostly things have been worse than ever. She has had several of the typical PANS/PANDAS symptoms since last February but never problems with bed-wetting or food restriction but since the shot she has wet the bed twice and plays around with food on her plate until we tell her which bits to eat.

 

From the PANS parent symptom scale part 2:

1. separation anxiety (5), general anxiety (5), unfounded irrational fears (5), panic episodes (3)

2. emotional lability (3)

3. Increased irritability (0)

4. behavioral regression (3)

5. difficulties in attention, concentration or learning (5), loss of academic skills (3 - though she was already developmentally delayed)

6a. Sensory symptoms (5)

6b. Hallucinations (3)

6c. Motor symptoms (4 - she sits and stands repeatedly and she walks very haltingly because of worries about what she is walking on)

7a. Urinary symptoms (4 - just recently)

7b. Sleep disturbance (5)

7c. Dilated Pupils (5)

 

So I hope some people here can give me advice.

 

1. She's not a child anymore - she turned 21 just before the sudden onset last February. What is the latest word on adult-onset PANS/PANDAS? Is there such a thing?

2. What is the typical response of someone with PANS/PANDAS when they have strep and are given an antibiotic? I guess the presence of strep itself may be why the symptoms got worse and maybe it takes a while to get better?

3. Is the antibiotic shot something anyone here has experience with? Does it work better/worse than a multi-day course?

4. Are there others here from the middle-tennessee area? Is there a support group of any kind in this area we can join? Does anyone have experience with Dr Daniel Kalb?

5. How much Turmeric, Fish Oil, Ibuprofen, Oil of Oregano, Vitamin D or other anti-inflammatories should she use? Is there a "how to" guide anywhere?

John Hansen

[Chemar]

Hello

I am bumping up your first post so others can respond

[pr40]

if nuro is willing to consider p/p, with strep found, he/she has the reason to prescribe long term abx and/or IVIG. symptoms support such course of treatment. I would pursue this course of action.

 

be careful with turmeric -- not everyone can process sulfur.

[fuelforall]

ibuprofen. 1200 mg a day.

See how it goes.

 

Also, try to get her to follow the ketogenic diet for seizures etc.

Edited March 30, 2015 by fuelforall

[Christianmom]

I'm sorry for what you are going through. My son had penicillin by shot several years ago when he was really, really sick. (At the time we thought he had PANS but he really had lyme.) The doctor said it should bring immediate relief, but it did not--it made my son much much worse, and it took him a few weeks to get back where he was before the shot. He also has had glutathione by IV twice and did very poorly with that as well. I don't know why. Maybe he just can't tolerate anything that goes into his system too quickly. But he tolerates oral antibiotics well.

 

[thgonace]

Hmm, for me penicillin helped a great deal, It well take quite awhile for all the symptoms to go away.

I would make sure the strep is gone, maybe take the penicillin in pill form

it is possible she never received penicillin to begin with.

Also maybe check for an ear infection, if possible consider getting her a dog.

(licking is supposed to work as a antibiotic)

I am not an expert, just offering some advice based on my personal experience.

[afsml]

I am sorry to hear about your struggles. I really sounds like some of the behaviors are OCD like in nature. It also really sounds like it could be PANDAS. I recommend that you find a PANDAS Specialist ASAP.

My son is now 19 and is being treated. He went undiagnosed or misdiagnosed for a few years. Feel free to PM me.

[afanofosc]

Thanks for the responses everyone. A few days have passed and I feel like there has been some noticeable improvement in her symptoms, so maybe the antibiotic is helping. Though it could be the addition of the oil of oregano which we started around the same time as she got her shot. It was 10 days ago now. She is definitely sleeping better and the last couple days she has seemed somewhat less OCD about everything - more interested in things she used to be interested in. She definitely still has a long way to go but I am hopeful that things may continue to improve.

 

I am thinking about adding Goldenseal based on what I read on other websites about treating PANS/PANDAS. But now I am worried a bit about herbals that are not what they purport to be based on recent news reports.

 

With respect to turmeric, what would the symptoms be if it is causing her trouble due to sulfur? How would I tell if she doesn't process it well? Does it cause inflammation?

 

Thanks again!