No regression ever with OCD - Time for real help

[TeamTyrion]

I've been on this board for a while now, about 8 months, starting off in the TS forum and now spending most of my time here in the PANDAS/PANS board.

 

I feel like, unlike so many of you, I have had a really hard time just DOING the tests to find out what my son has. I feel so overwhelmed by everything that I have become almost paralyzed. The only thing I have covered, quite thoroughly, is the methylation stuff. But, I have yet to do any bloodwork, including ASO titres, or Igenex testing to see if he is either Pandas and/or Pans. It's definitely time and I feel terrible it's taken me so long.

 

I read about you all giving your children abx during flares and how the behaviours subside and then come back again when the autoimmune response has been triggered. My son lives in what seems like a constant flare, probably because I'm not giving him any abx? His OCD and rage are either a. moderate or b. severe. There is no mild and there has never, in over a year, been a complete absence of his OCD.

 

He does not wet his bed, has never suffered from joint pain, and only experienced tics (in the form of throat-clearing) for about 4 months (between Sept. and January). He has sensory issues definitely - needs long socks and pulls them up all the time. He is a good eater. His OCD is in the form of touching things, and sometimes licking things. We found out through a child psychologist (who worked with him for over a month before he told her) that he does this because he doesn't want to bleed. So, it's a classic fear-of-consequence OCD behaviour. He also responds strongly to the use of words that somehow remind him of blood. If we mention something that makes him think of blood (like "bladder" or "pressure") he feels that we have outright attacked him and he responds with rage that we did that to him.

 

He draws battleships all the time (as well as other things, but mostly battleships), and can memorize the dialogue (word-for-word) of entire movies. His Father has a minor movement disorder (with his feet) and doesn't like to be touched on the chest. He (Father) also has restless leg syndrome during the night. When I asked him to recall how long it's been that he's had the issue with being touched on his chest he couldn't remember.

 

I cannot recall my son ever being bitten by a tick, and his throat swabs are always negative for strep. But, he complains of a sore throat quite often, and the one time his OCD hit a severe level (literally screaming at us to touch things 3 times and rage every 2 minutes) was when we had been exposed to someone who was quite sick at the time. We didn't check for strep because we were on vacation and I didn't think to check in with a local doctor. He has always had HUGE tonsils and we are finally getting them (and the adenoids) out at the end of August. His tonsils would always get so enlarged from December-May that he would struggle to sleep at night. This first happened when he was 3, and now he is 7. I was so opposed to surgery when it was first suggested 4 years ago, but now I am hoping and praying it will bring some relief with the OCD.

 

We have had 2 cats ever since he was born. He and I love to kiss them...a lot. They are indoor cats but once we did find a flea on one of them. Sometimes I wonder if he has bartonella, since I often read here that OCD and rage are symptoms of it, and those are the two symptoms that are front and centre with my son.

 

I have worked with a DAN doctor, who for some reason never recommended much in the form of testing, and now a Naturopath, who also seems to eschew testing. So, in a way I felt justified(?) for lack of a better word about not going ahead and doing any testing. But, this is ridiculous. It's time.

 

I'm curious...when I read about your children regressing/being symptom-free, is that after you administer the abx? If you did not administer the abx would your children's symptoms go down over time or would they remain in flare-mode? And, are any of you using something other than abx to get the flare's down? I see a lot of NSAIDS (ibuprofen, advil) mentioned but my son doesn't tolerate those well, and the results of his methylation support that. Not to mention, those NSAIDS are not meant to be taken long-term are they. Any help would be appreciated. First things first though - ASO and Igenex right?

Edited July 28, 2014 by teamtyrion

[MaryAW]

Instead of trying to manage this yourself, why don't you go to a PANS/PANDAS doctor? Remember a PANS child will not necessarily test positive for strep. My DD never has.

 

Here is a link to a thread from this forum of recommended doctors:

 

http://latitudes.org/forums/index.php?showtopic=5023

 

Here is a link to PANDAS Network's list:

 

http://pandasnetwork.org/resources/providers/provider-list/

[SSS]

I can relate to a lot of what you wrote.

I can't write a lot, just a few things-

Has your child ever been on an antibiotic trial for PANDAS/PANS?

Please make sure he gets some before/ after Tons. surgery.

I 2nd the suggestion you need to find a PANDAS specialist, or a Dr. who has at least treated it.

You may also want to do the Cunningham test from Moleculera Labs

http://www.moleculera.com

[nicklemama]

I will also agree you need to see a PANDAS/PANS specialist. This is. It something you can manage alone. Yes, abx is what keeps my son "normal".

[TeamTyrion]

Thanks for the input everyone....Maryaw, I checked out both links and found no practitioners listed in the first that are from Canada, and one in the second link. ONE listed for Canada. I know there has to be more because there is a doctor at Sick Kids in Toronto who has diagnosed and treated Pandas. I had inquired about treatment there but was told that we were out-of-bounds (that we need to be living in Toronto to get treatment). We live in Mississauga - only 30 minutes door-to-door!!! However, just found out that someone got a referral there even though they are out-of-bounds so I will definitely look into this further. Also, there is a Children's hospital at McMaster University in Hamilton so I will call them tomorrow.

 

SSS - When you say antibiotic trial for Pans/Pandas, do you mean trying out abx for a few(?) weeks to see if my son's symptoms improve? I have never tried this. My son has been on abx three times in his life - each for 10 days long. I will approach his doctor (who is so against abx) and suggest this to him. Is a 3 week trial long enough to actually notice an improvement? Should I ask for something longer?

Edited July 28, 2014 by teamtyrion

[MaryAW]

I would recommend doing a separate post - PANS/PANDAS doctors in Canada?

That might get you an answer. In the body of the post, give your exact location within Canada. Maybe there is someone on the forum who can help you find someone close to you. Otherwise, you might have to take a trip to the states for a consult with one of the top doctors here. We have all spent a lot of time, money, and effort. In the end it is worth it. Best of luck to you.

[SSS]

Well, I'm not a Dr. (of course) but when I presented PANDAS to our then DAN/MAPS Dr.

(I had pages of written summary with our history about why I thought my dd, then 4-5 yrs. old, had PANDAS. Basically, she had all the symptoms, except overnight transformation, but yes waxing and waning.)

I used this web page for symptom list:

http://webpediatrics.com/pandas.html

 

Anyway, that Dr. did know about PANDAS (and really, any DAN/MAPS Dr. should) and we did a trial of 1 month Azithromycin (full dose 6 days a week) and daily ibuprofen, with me taking copious notes, report back in 4 weeks.

Absolutely we saw a turn around, it was amazing, with K teacher commenting to boot.

 

I don't think your regular Dr. is going to prescribe PANDAS dose antibiotics in duration.

Perhaps write up like I did your case for PANDAS, what you want, and approach your current DAN/biomedical Dr. you are paying for--

[BeeRae22]

I would find a pandas/pans doc and go from there.... If you're someone who needs the tests to feel as though you're on the right path, than it might be good for you. Any doctor who knows what they're doing in regard to pans/pandas is going to order bloodwork anyway. Many of the additional tests that you might consider may not be covered by insurance, and could be inconclusive- leaving you feeling frustrated. I would recommend doing research on any testing that your going to pay for out of pocket.

 

Personally, I have not done any out of pocket testing for my dd. I would honestly love to do Igenix and the Cunningham panel, but my insurance doesn't cover it and I can't afford it right now. Dd's Pans doc tells me that ultimately, her treatment would be the same anyway-- based on her symptoms and response to treatment. Having a positive strep could be helpful in regard to insurance billing and is a routine test that's usually covered anyway, but I'd be willing to bet that even with a positive Lyme test (Igenix for example) you're not going to get very far with treatment with anyone but a llmd or pandas doctor anyway. When i first took my daughter in, Her pediatrician actually said to me "there's no such thing as chronic Lyme" and that because she didn't have strep, she didn't have pandas/pans and tried to send me to psych..... Ugh, what a moron. I think he's the one who needs psych-- boy would I love to see her pans doc face off with him!

 

Like SSS said, try to get a trial run of abx if you can. We did notice an improvement after 2 weeks of azithromiacin, but different and more abx were necessary for greater improvement. (Like your son, my dd had rages, ODD behaviors, severe OCD, etc. we still havent "found Lyme" but we suspect bartonella.). Print out information to bring with you if you're seeing a non pandas doc, and be prepared to meet with a lot of resistance.

 

Good luck and best wishes! Keep researching, asking questions, etc. Everyone's experience is different, but there are many, many knowledgeable parents on this board that have been through it all!