Three Year Update

[KaraM]

This past Sunday was what I consider to be the day we started this journey three years ago...although I know now it was truly months before. My daughter, 7 at the time, had been exhibiting OCD symptoms for a few months, mostly related to germ contamination fears. Initially, during the late summer and early fall months, the symptoms were relatively mild: mostly questioning about the Swine flu and whether she was going to get it or fussiness about clothing. Over the next few months, the questioning became more and more frequent and other symptoms, such as extensive hand washing started to appear. It was on this day three years ago that she truly stopped being able to function normally. Her hands had become raw from washing them so much. Every day had become a battle to get dressed. But on this particular day she was simply not able to do it. Every item was contaminated. We had thought in the weeks before that she might just be manipulating us. But we knew that was not the case. It was a gorgeous day after a huge snow storm and all her friends were in our yard playing and waiting for her to come out. She wanted to go out so badly, but just could not get dressed. That's when I hit the computer and learned about OCD.

 

We brought her to the pediatrician the next day. He agreed it was OCD, prescribed Celexa and referred us to a therapist. When we called the therapist, she mentioned PANDAS and suggested we test our dd for strep. The doctor agreed, but the test was negative. At that point both the therapist and doctor said “no PANDAS.”

 

Over the next few months, even with therapy, our dd continued to decline. Her germ contamination fear OCD was pretty extreme, preventing her from getting dressed, walking or driving on the streets leading to our house, eating food from the refrigerator or certain cabinets, sleeping in her (or any other) bed, using bathrooms other than one in our house, eating lunch at school (when she would make it there), going to recess…the list goes on and on. In addition to the OCD she also had fight or flight rages. She even ran outside when it was below freezing with no shoes or coat on and hid from me in the snow covered yard. She had emotional lability and would go from crying for an hour, saying she wished she wasn't alive to skiipping down the street, happy as a clam shortly after. She had ADHD like behaviors that were not there when she was toddler. Her school performance declined. As I searched for knowledge and support, I eventually discovered the OCD and Parenting Yahoo support group where I electronically met LLM and Suzan, as well as a few others who encouraged me to continue looking into PANDAS. They were both pretty persistent, especially after I learned of a boy in my dd's class who was also exhibiting PANDAS symptoms tested positive. They convinced me to get her blood tested and participate in the Cunningham test. The blood tests were positive. Her CAm Kinase was in the high PANDAS range at 189.

 

Since that point, her pediatrician put her on Zithromax and referred us to a specialist at Children's Boston. Fortunately, we followed the advice of people on this board (like Nancy I think) to skip over Dr. F and go to Dr. B. or one of the other big 5. She improved rapidly on the Zithromax so that by the time we saw Dr. B in June she was about 80% back to normal. He upped her dose and she went another 10% within a month. Unfortunately, six months later, she took a nose dive. Dr. B. was convinced it was due to strep exposure. Her brother was constantly getting sick. And Dr. B's suspicions about him carrying strep were correct. But after we got that under control and tried a steroid burst on my dd, she didn't improve. Dr. B. then tested for more infections and discovered Bartonella in both her and my son. He then put her her back on Zithro, added Bactrim for the Bartonella and referred us to Dr. J. for further evaluation. We've been seeing Dr. J since then and treating them both for Bartonella and Lyme. He continued the Zithromax and Bactrim combo and last fall, after confirming Lyme, added Tindamax as a cyst buster.

 

It has been a long, long road with two steps forward, one step back the whole way. But really, the last year and a half was nothing compared to the first year and a half. Other than herxing after giving Tindamax on weekend, they are both doing amazingly well. I now describe my dd as 100%, 95% of the time. The girl who was once afraid to go the bathroom cleaned my toilets for me on Thanksgiving! Her OCD is pretty much non-existent. She no longer rages or has depressive episodes. She’s doing better in school (although she still has issues with reading that may or may not be related). The herxing is primarily either age regression or hyperactivity. And it's usually pretty short lived at this point, lasting an hour or so here and there over a couple day period. She is engaged, trying new things and getting involved in activities. She’s funny, fun loving, and happy. She’s awesome!

 

My son, who was never officially diagnosed with PANDAS or PANS, but whom I suspect is PANS, is also doing much better. He never had OCD. He may have had a throat clearing tic, but we’re not sure. His only psych issues were emotional lability and perhaps age regression. He just got sick a lot with sore throats and stomach aches. He was constantly at the nurse’s office or staying home from school not feeling well. This year, he has not missed one day and has visited the nurse only a few times with a stomach ache. No sore throats!!

 

I received so much support and advice from the wonderful people on this board. My eternal thanks goes out to LLM, Suzan, NancyD, FixIt, Fcefxer, Buster, MomWithOCDSon, EAMom, SFMom, SmartyJones, DCMom, Momaine, Iowadawn, Worrieddad, Tpotter, Vicki… I I wish I could name everyone who has helped me along the way, but know I’m missing some. (Thanks to Shiela and ACN, too, for hosting this forum…time to make my annual contribution!!)

 

With gratitude and wishes for health,

 

Kara

 

 

 

[LNN]

Persistent? Me????!!! Surely you mean someone else

What a nice early Christmas present to all of us here - to hear DD is so happy and both kids are getting their lives back! Not to mention the joy and relief you and DH finally get to enjoy.

 

You've certainly paid it forward a 100 times over and I'm sure you've rescued many kids who would've been misdiagnosed. As much as the moderator bristled when the rest of us posted on that "other" forum, you stuck with it, with your true diplomatic skills, and kept that foot in the door so others could learn about Pandas (and lyme). And of course, let's not forget how you changed my life too!

 

(on the reading, check into convergence insufficiency. My DD has been doing vision therapy for 4 weeks (plus new glasses that correct for CI). When we started, she did an exercise where you have to throw a tennis ball at a coin on the floor. She used to see 2 coins, not one. Last week, she finally saw just one. Her reading has improved noticeably.)

 

So, so happy for your family! Thanks for the good cheer!

[Teri]

Congratulations!! Thanks so much for this post - it is really encouraging to read!

We are one year in and finally starting to make some progress. We also see Dr.B and have an appt with Dr.J in March. We see some good signs of healing in our DD6 but are still in the "two steps forward & one step back" stage. Dd (PANDAS/LYME/Bartonella) is on Cipro/Zithromax combo but we are hoping to come off Cipro and start Tindamax in January as per Dr.B.

[Kathy4Him]

Kara...thank you so much for sharing! So happy for you and your family!!! Just love the praise reports.

[Fixit]

Holy Smokes…thanks for including me in a group of such heavy hitters.

Thank you for your help and support too! I too don’t know where I would be w/o everyone here or this platform.

This condition definitely requires a group effort.

 

I am soooo happy for you and your family. What a wonderful story of recovery and hope!

[MomWithOCDSon]

Holy Smokes…thanks for including me in a group of such heavy hitters.

Thank you for your help and support too! I too don’t know where I would be w/o everyone here or this platform.

This condition definitely requires a group effort.

 

I am soooo happy for you and your family. What a wonderful story of recovery and hope!

 

Ditto, ditto, ditto!

 

Sounds like your family is all ready for a fabulous holiday season! Congratulations to you, and happy, happy, joy, joy!

[JuliaFaith]

So great to hear your news! May the good health continue and you all have a great new year! Thank you for sharing.

[cobbiemommy]

Kara,

Thank you so much for the update. It is great news for you and good news for us; it keeps us motivated. I think it is great that your daughter will help you around the house in all of those fun jobs like toilet cleaning! Have a wonderful Christmas and thanks for the present!

 

Cobbie