Lots of Prayers and 6 weeks post IVIG--starting to see results!

[Joan Pandas Mom]

My son just finished a sentence!!!! and made his own bagel for the 3rd day in a row. Every day he seems a tiny bit better. We still have a long way to go, but I have been seeing some progress over the last 5 days. I was really starting to give up hope, but the last few days have been better. He told me about 4 days ago that he felt "weird"; that he was able to fight the compulsions a little more, but it felt strange not to do them. He wasn't able to attend Church for many months--he was too sick. He started to go again about 1 month ago. A couple of times he looked over at me and said God was going to make him better.

[texascatholic]

Hooray! Now this is what we like to hear! :-)

[Fixit]

My son just finished a sentence!!!! and made his own bagel for the 3rd day in a row. Every day he seems a tiny bit better. We still have a long way to go, but I have been seeing some progress over the last 5 days. I was really starting to give up hope, but the last few days have been better. He told me about 4 days ago that he felt "weird"; that he was able to fight the compulsions a little more, but it felt strange not to do them. He wasn't able to attend Church for many months--he was too sick. He started to go again about 1 month ago. A couple of times he looked over at me and said God was going to make him better.

 

What a wonderful thing to hear!!!! I am so happy for you and your little boy!

Thank you for sharing the good news!!!!

[wornoutmom]

Oh Joan!! I have been thinking of you guys every day! This is SO great! I am so thrilled.

[thereishope]

I'm glad to hear you're seeing improvement! May God continue to bless your son and whole family.

[Mary M]

Joan Pandas Mom,

I think of you so often...You have worked so hard to get to this point. To finally see some improvement is just such a blessing! May you continue to see successes every day...

With hope,

Mary

from Michigan

[Joan Pandas Mom]

Thanks so much guys. I don't think we would be here without everyones help on this Forum. I remember when this started (Sept. 2004), crying in my room thinking there has to be more going through this. I only discovered the Forum in Oct. 2009. We are scheduled for another IVIG soon. This will be the third. I forget who posted that their Dr. told them the older kids that have had PANDAS for a while, need 3-4 IVIG's. I think the med switch has been helping too. We switched from 500 mg Azithro a day to 300 Omnicef 2 x a day. Three weeks ago we started a very, very low dose of Zoloft (25 mg). My son is 161 lbs. I reread Dr. Murphy's study and she states a very low dose can be effective with OCD. Her 9 year old patient had symptoms activated horribly on 5 mg of Fluxetine a day. They discontinued and restated at 2 mg a day shortly after. He tolerated that fine but OCD didn't improve. After 3 months they increased it to 4 mg a day without adverse effects and his OCD improved.

[momto2pandas]

So glad to hear that you're seeing good things! I hope that those good things continue to grow.

 

Re. SSRIs, in the past when I had periods of depression associated with PANDAS, I found very low doses of Zoloft or Celexa to be very helpful. NOT fluoxetine/prozac - that was far too "activating". I don't know if this would be true for your son, but for me, the trick was not only to use very low doses, but to go off of it once I got my bearings again, usually a few days to max a few weeks, because otherwise I would start to mood cycle. This was a known phenomenon among some of the psychiatrists I worked with at Columbia - that the anxiey folks with autoimmune issues would eventually start cycling on SSRIs. Just something to keep an eye out for.

 

Incidentally, Wellbutrin was effective and did not appear to lead to such cycling.

[kimballot]

Joan - I am so happy for you and your son. Perhaps St. Therese is working for you, since you went to the center that talked about her! I will keep you and all of our children in my prayers.

[Priscilla]

SO SO happy for you, keep praying, it really works!! We keep all of you PANDAS families in our prayers.

[Megs_Mom]

Hi Joan - I think so often of you and your son, and am so glad that he is finding some relief. Really thrilled for you.

[amyjoy]

Chills from your letter, and joy to you and your son and family.