Thursday, December 29, 2011

PANDAS keeping me up at night

Our nine year old son's tics have been out of control lately. His ribs hurt at night from the tic that makes his whole body clench. He's got a vocal tic, and also one where his arm moves in a circle. Lately, he's been talking as if his jaw is wired shut. It's another tic. 

Our specialist assumes it's PANDAS. His tics become severe about a week after he's been sick. Long-term antibiotics, the treatment of choice, (and one we held off on for years) have not helped.  We are considering a drug for the tics. Maybe to snap his system out of the continuous loop which starts once his antibodies overreact to infection and begin attacking his brain. 

Our son has an immune deficiency which has qualified him for IVIG. He got his first infusion this month and will receive five more over the next five months.   

Like I did with his sister in her early years of ASD, I wake in the night worried. I get on the computer and research while my family sleeps. What exactly is happening to my child's brain? I worry about the long term picture. I worry about it getting worse. I worry about permanent implications. No one can really tell me anything about that. 

Watching him tic every waking minute is overwhelming. Sometimes I can't even think. I can't breathe. And I know so many parents have it so much worse. He can talk. He's pretty happy. He's got no cognitive issues, other than some fears and phobias which don't affect our lives too terribly much. His is a mild case as far as PANDAS is concerned. 

But here's the thing. I'll die if anything bad happens to this boy. He is goodness personified. He is as sweet as they come. I can't take some stupid infection coming in and changing him in any way. I'm sick of it. I'm angry. 

So today I will draw on the strength of so many other parents here, those who face much more than we do. And I will keep researching. And we will go to the ends of the earth for this boy. 

And I will work hard to move up the emotional scale and stop feeling so helpless, because I'm not good for him, or for anyone from this place.  If I have to pass through angry on the way to hopeful, so be it. 

As the saying goes, the only way out is through. 


    Have you read this and gotten in touch with this mom? She has a recovered son who also has PANDAS and her daughter had PANDAS pretty severely too and she has had great success.
    I am assuming you are not vaccinating anymore (hope not anyway). Good luck. You sound like a great mom.

  2. Thank you. I'll check out the website. And your assumption is right.

  3. i love children

  4. I do so hope you can find support and strength as you work through this. I am in awe of your awareness of your own reactions and your struggle to change them. It is so difficult to stop the cycle of worrying about our kids. I wish you all much luck in finding treatments and states of being that feel good.

  5. YAMH. I know you'll find help for your son. love.

  6. One piece of advice, ask if you can do the sub Q IG instead of IV. Must less invasive and my son does his once a week (at home), so the dose is more steady within his system...rather than declining as you move towards the end of the month. And you're not exposed to the germs at the hospital.
    Ask about Hizentra, that's the IG we use. Best wishes!

  7. I couldn't breathe reading your article. You have put my thoughts and feelings more eloquently than I have evn been able to. My son's tics from PANDAS consume me if I allow them and the personality changes are also not an option for my sweet 7 year old! Thank you for sharing. We have recently started NAC for my son's tics (an amino acid) and have seen a reduction. I wish you well on your journey and will be checking here regularly now I have found your site. Thank you.

  8. I too have spent many nights googling at 2 a.m., terrified of the harm PANDAS was doing to my son. There is a Pandas support group that may be helpful -
    It is a long journey and filled with unique potholes, but have hope. My son has not ticced in almost a year and has been OCD-free for about 7 months. There is a lot you can do to help him. Be strong and believe in yourself.

  9. Susan Levy-OsborneJanuary 7, 2012 at 1:29 PM

    Hang in there Michelle. You are an amazing Mom and I keeping you in my thoughts.