Need Help - Not sure where to turn

[Bcox118]

Hi,

 

My 8-year-old daughter was formally diagnosed with Tourette's and OCD last March by two Neuros (one at Children's, one at MGH,) though we know for about five months previous that we'd get those diagnoses. History is a bit complicated - will try to keep it as brief as possible:

 

Totally normal child - absolutey no issues until the age of 5, when she started developing what we thought were sensory issues, particularly around clothing and some behavioral / mood changes. I should mention, my 6 year old has mild CP and has had sensory issues since birth. Couldn't understand how my "normal" child could develop clothing aversions at age 5, and couldn't figure out why she was "acting out" over the simplest things out of no where. She would curl up in a corner and tell me she was "stupid" and "an idiot" and no one liked her, because "why would they, I'm terrible?" Also said she felt "black" in her heart, and wished she could disappear. This all came out somehwat gradually over the course of a month or two, then seemed to abate. Over the next 18-24 months, she developed these very noticable cycles:she would be her amazing self for 8-12 weeks, then would literally wake up one day changed. I would call my mother near tears telling her the other Ella had come back. Actually took us about 6-8 months to even noticed the pattern (hindsight is 20/20.)

 

Went on like this until her 7th birthday in May of 2010. She'd been in a fantastic period since March, then literally melted down the day of her party. None of the plates, napkins, decorations were "right", she fought with her cousins, totally irrational and angry about everything, then broke down screaming and sobbing that night that she was "burning up." I should mention, we were all very ill about 5 weeks before, but this was later, and she had no fever, no sickness that we were aware of, but she changed from that day. Clothing issues exacerbated, as did social issues at school and her irrational/angry behavior at home. She also started having horrendous night terrors.

 

Went on this way until July / Aug of 2010 when the tics started. Mainly eye-rolling, nose scrunching. By September, she'd added these odd movements with her hands and arms - we have her on video laying on them to keep them still. She went down to one pair of underwear, one shirt, one pair of sweats and flip flops. Had to quit soccer b/c could not wear the cleats and socks, didn't go trick or treating b/c she couldn't get into a costume, missed birthday parties and school functions. By Oct of 2010, she'd gotten so bad that it took us an hour to get her out of the bath one night b/c we weren't holding towel "right." Went through a whole winter in the same outfit, wearing uggs with no socks(she did gym in them!) Started her on Celexa in late October of 2010, but no improvement by May of 2011. In late May, put her on something called "Empower Plus" and weaned her off Celexa. She had a great period this summer for about 3 weeks (even stopped ticcing for 6 weeks!), then backslid in August a bit. About one month ago, she went off the rails again. Now, the OCD is worse than ever - won't use the same toothbrush if there's anything on it, can take 2 hours to get her out of the house in the AM becasue her hair "isn't right," cursing constantly, saying she can't help it, throwing, tantruming, beating on her younger brothers and me and my husband. Told me she's tired of counting all the time and having to do everything in patterns of 8. She's been sleeping in our bed for over a year now (which I wouldn't even care about, except it can take forever to get the blankets "even" and her pillows right until she can go to sleep.)She's had bad times before, but all even more heightened now.

 

Have an appointment with Dr Gellar at MGH in November, but will be $2,500 out of pocket. Have already spent so much money on intergrative psychs, CBT therapists, neuros, psychopharms, the Empower pills, etc. etc. Have no idea if she has PANDAS - she can keep it together somewhat at school and in public - can PANDAS kids do that? Just not sure if I want to go through the MGH DR for all that money, just to be back to square one. Wondering if I should be going to Dr B In Darien? Did any of you have kids whos OCD came on more gradually and focused on sensory-type issues?

 

There was a massive outbreak of strep in her class in March of 2010 (brought her to dr when she got sick at the same time who gave her abx b/c said her throat was "classic" strep, though think the test came back negative) Had ear infections at 4 and 5. Also has a cousin she sees all the time who we think might be a strep carrier.

 

Any advice is welcome - - Dr at Childrens had mentioned PANDAS and said it could be (he's a supposed expert), but he didn't believe in treating with prophylactic abx and wanted us to try the Celexa and therapy. He's since moved.

 

Just need to know if I'm crazy for consdering this. Sorry it's so long and not very well-written - daughter is screaming at my husband from the other room!

Thanks

Edited October 27, 2011 by Bcox118

[PowPow]

cannot say 100% but if i recall, i think MGH is not a great PANDAS place to go-- I think I remember reading that more than once on the forum.

that amount of money you mentioned would go quite a ways with Dr B (or any PANDAS doc, really!)

 

there is a recent thread on the forum about Northeast Docs-- search for it and hopefuly that will help.

 

Also, my daughter developed grouchiness & sensory disorder after strep. the OCD did not start until her next strep--7 months later.

[ibcdbwc]

I have been where you are! It is a scary place. You are wondering if this really could be it? And if so, you are kicking yourself for not knowing sooner. But if this is not it-- you are devastated because things seem then utterly hopeless. All and all, it's driving you crazy. I have been where you are!

 

I wish I could say it gets easier. In some ways it does as you learn to settle in and roll with what you know. The frustration and the not knowing will be the hardest part and that never goes away. The pattern teases us. During the good periods- we start to enjoy our little ones again. We start to think, oh maybe it was all a bad dream or maybe this is finally over. And then when a bad period returns, we must grieve all over again. Again and again, and then more questions, more hurdles.

 

My ds at age 8 was also diagnosed with "regular" OCD. His dr. didn't even consider Pandas despite a rapid and dramatic onset. This was 2 and 1/2 years ago. In retrospect, I believe my sons first "episode" was at age 5. At age 9 1/2 he began the spiral again and I wrote to this board. The forum here is unbelievable! I was urged to seek out care and I did. I am now convinced. He responds to anbx!! This is not to say there are not hard times in between. But I know the two people you speak of. When the "bad" one is here, it is awful. The intensity in the entire household rises. My son becomes hyperactive, rages and very emotional. Then we have the OCD, counting and patterning. It is heartbreaking to watch!

 

Regarding, "can a kid with PANDAS (or PANS as it will be called), "hold it in." I asked the very same question and the answer is YES!!! Then they explode with compulsions at home.

 

Now something controversial. I feel like one day, we will find this common link to all types of "mental issues", including "regular OCD." The strep or other irritant connection is only the tip of the iceberg. So YES, consider PANDAS (PANS) for your daughter. I don't know how people feel about sending you to do a phone consult with Dr. T or Dr. K. I did and it was helpful as a first step. Not sure if things have changed in that recommendation and I'm not familiar with docs in your area. Hopefully someone will respond with step-wise advice.

[Ozimum]

Welcome to the forum and I'm so sorry you've needed to find us. You are NOT crazy. Your child's story is a lot like my son's, except he was older at onset...history of ear infections, sensory issues, nothing was right, angry with me and the world, OCD, drop out moods, etc, etc. And yes, he could hold it together at school, at doctor's appointments and then completely lose it as soon as he felt safe - in my car, or at home. Just getting through the day took a huge toll and he needed time out...any pressure from us at home and he would melt down.

 

The key is getting the right antibiotic for your child and for long enough to wipe out the triggering infecton, as well as modulate the immune sytem and reduce inflammation. For us that means a macrolide such as erythromycin - others use zith, azith, etc. If your child responds well to an antibiotic, you will know you are likely in the right ball park of PITANDS or PANDAS. Nurofen/Ibuprofen may provide some temporary relief in reducing inflammation.

 

If you haven't already found them, on the top of the page with the list of message threads, you'll find two threads -a list of abbreviations etc, and a thread of useful info. Somewhere there you'll find a list of doctors known to treat PANDAS, and tests which could be run to give you a fuller picture. This forum is a haven - you will find support and help here, sometimes conflicting - everyone's journey is different. Read it, research it and decide how best to proceed for you and your child. Good luck.

[beeskneesmommy]

NO! You are not crazy for considering this!!! Your "otherwise normal" child sound like she has PANDAS. My opinion is not difinitive and I am not a Dr. However, we have been in this place of utter normalcy, and extreme changes over night. Below are some links that will give you some reference to consider. We see Dr. Bouboulis, and we are apparently rare and lucky to have recovered to this extent. But if anything, give him a try because he is a no-nonsense, deep digging, excellent doc. Best wishes, Kath

 

http://pandasnetwork.org/

 

http://www.advanced-allergy.com/