Update on Pixie

[pixiesdaddy]

Hi,

 

My wife mentioned that she had been asked for an update about our daughter Pixie and how she was doing. I always get nervous posting something like this; I often feel like saying anything positive will "jinx" whatever progress we've made, but I know how desperate I was for encouraging stories when we were considering IVIG.

 

So, anyway...

 

Pixie is our DD9. We received a PANDAS diagnosis from Dr. K in September of 2009. We believe that Pixie had been suffering from PANDAS for quite some time before that, perhaps 3 years or more. At their height - the start of 4th grade this previous school year - Pixie's worst symptoms included tics (blinking, shoulder shrugging, finger flicking), rage attacks, day and night wetting, extreme fatigue, extreme separation anxiety.

 

After meeting Dr. K in September, we moved rapidly towards IVIG with his diagnosis because Pixie had gone completely down hill with the start of the school year. She became violent at school and we had to pull her. I had to take a several week leave-of-absence from work because, quite honestly, it wasn't safe having her at home with my 2-year-old daughter and only my wife to try to manage her.

 

In any case, literally within days after IVIG (2-3 days?), the bed/day wetting stopped. We have had one recurrence for one single episode of night wetting in the 11 months since. Also within days after IVIG, the motor tics stopped. We will still see Pixie shrug her shoulders or rub her eyes when she's particularly fatigued, but the constant ticcing that kept her from falling asleep has not recurred.

 

Rage attacks were the worst and they took a good 5 weeks post-IVIG to even begin to slow down. Somewhere around 5 weeks, they began to happen less frequently, decrease in duration and intensity.

 

Separation anxiety and fatigue have lasted the longest. They still recur on and off depending on her health and her mood. We tend, at this point, to treat the fatigue with ibuprofen. If Pixie seems tired, grumpy, or irritable, many times a child's dose of ibuprofen and waiting 30 minutes will seem to right the ship.

 

Pixie used Augmentin as a prophylactic antibiotic after IVIG, but contracted strep on it. At that time, we tried her with Cefdinir, but she still contracted strep while on it as well. We then switched to Zithromax, and she's done the best on that, though we're still contracting strep as a family fairly regularly. We can't seem to get away from it.

 

That being said, she doesn't seem to react as strongly to strep anymore. It hasn't been triggering full blown exacerbations. We'll see upswings in irritability and fatigue, but we haven't seen wetting, rage, or tics return, even with positive cultures. We just try to be aggressive with upping her abx when we know that strep has gotten back into the family and hoping for the best.

 

To aid her immune system in her recovery, we've taken the following steps:

 

1. As mentioned above, Pixie has been on prophylactic abx since IVIG.

2. We use xylitol gum, ibuprofen, and flax seed oil liberally as supplements.

3. We've modified our family diet to be organic, whole foods and free of gluten, preservatives, artificial ingredients, refined sugars, and pasteurized dairy.

4. We've done Nutrition Response Therapy with Pixie, with moderate success.

5. Pixie still sees a psychologist once a month to touch base.

6. Pixie sees a chiropractor for regular wellness adjustments.

7. Pixie attends equine therapy classes on a weekly basis.

8. We relocated our family, in part to make sure Pixie moved from a private school system to a top-notch public school system which might offer special services.

 

During the year of recovery from IVIG, I ended up taking two leaves of absence from work - both of about three weeks. I am a high school teacher and was lucky enough to have banked sick days which allowed me to do this. The first leave was when she received IVIG and the immediate period post-recovery. The second leave was when we made the switch to the modified eating plan, since it really required a full lifestyle overhaul for the family.

 

At this point, we're so grateful for the progress we've made, but we still watch her like a hawk and are aggressive with trying to support her immune system and managing flare ups/exacerbations. We do walk on eggshells at the fear of a full-blown PANDAS recurrence because we know how devastating it was to our normal functioning as a family, but we try not to let that fear rule our daily lives.

 

I wouldn't ever make us out to be a model of success for a PANDAS kid - I don't think I feel confident enough to say that. Maybe if we get through this upcoming school year in reasonable shape, I'll be more comfortable suggesting that we've seen a full healing, but we've certainly come a long way since last September.

 

Anyway, I hope that helps keep you updated, and if anyone has any questions, just let me or Pixiesmommy know!

 

Pixiesdaddy

[Fixit]

Wonderful update...thank you for coming back to tell us!!

I wondered where you were and how you dd was doing....Good Job

[EAMom]

thanks for the update!

 

What dose of Azith. is Pixie on? I'm glad she's doing well overall! Things were really crazy for you guys!

[thereishope]

Glad to hear things are going well! I am so happy and proud of your whole family!

[Suzan]

Thank you for the update and it is so wonderful to hear such good news.

[kimballot]

It is great to hear your story ~ Thank you for letting us know! Best wishes as you approach your 1-year mark ! Keep us posted!

[JAG10]

Hurray on your dd's progress! Thank you for defying any "jinx" and posting positive gains. We all have to remember that even though our foe is microscopic, it is abundant and powerful. Everytime we share our successful battles (as well as setbacks), we collectively move forward in winning this war.

[Mary M]

Thank you for sharing your story. Your family is a beacon of hope...may Pixie successfully continue on her road to health and wellness.