1-year update

[kimballot]

First off - I want to thank everyone on this forum who has followed our story, said prayers. offered advice, and checked back from time to time to see how we are doing.

 

As the "old timers" may recall, my DS (nearly 15 now) has been battling PANDS symptoms since toddlerhood with chronic and severe sinusitis since birth.

 

In February, 2011, we decided to begin IVIG every 2 months in an effort to reduce infection, reduce inflammaion, and stop the autoimmune process. We were warned that this could result in a temporary increase in PANS symptoms, and we were concerned as he had experienced major depression 7 years prior - just before having his tonsils removed, but the tonsillectomy seemed to help and we had not seen any depression since. Now, at age 14, he thought of major depression was very dark and scary and he was very big.

 

On Feb. 27 we saw a return of the major depressive symptoms as he refused to leave his darkened bedroom. Over the next two weeks depressive symptoms continued to mount as he posted dark lyrics on facebook, talked about hurting himself, and had rages at home. Eventually, we were forced to hospitalize him for 13 days - followed by another 5 day hospitalization two weeks later. We gather together a team of counselors, wraparound workers, psychologists, physicians and even the police to keep DS home and safe. At first it seemed there was no end in site, but as we sought counsel from different doctors we continued IVIG, changed medications, changed approaches, changed supplements, and changed our standards so that, over time, he began to return to function, though he developed very persistent school refusal. The first time he touched me was Mother's day - after being taken off Singulair 3 days prior at the suggestion of the LLMD. By the end of June he had failed the second half of 8th grade, but was interested in attending summer school. He made it to school more days than he missed in the summer, which was an improvement over the school year, but a far cry from functional. By the 4th of July I was able to leave him home for a few hours at a time without fearing he would hurt himself - after starting on doxycyline and flagyl. By September he was able to stay at a different hotel when we went for IVIG without anxiety. By Thanksgiving he was able to dress up and attend a family function - though he was very quiet. By Christmas he was able to interact at family functions and was attending school about 4 days per week. We added in inositol and changed his CoQ10 schedule, and he started attending school everyday at at the beginning of 2012. On Valentines Day, 2012 he was at IVIG for his one year IVIG anniversary and was a pretty "typical" kid.... even brought some homework to do while he was there.

 

Today, he is a high school freshman and has only missed one day of school since the first of January (except for IVIG). He is interested in his classes and he is passing his classes this marking period. He is no where near the child we know he can be... but he continues to move forward. He has not had a sinus infection since we began IVIG - even though he has had a couple of colds.

 

Again - I am writing this to thank all of you wonderful parents who have helped us so much along the way and all of the doctors we have seen. Over the past two years we have had contact with many - Dr. T, Dr. B., Dr. M., Dr. Jenike, Dr. Kyle Williams, Dr. Aureen Wagner, Dr. Kari Bovenzi - plus our local pediatrician, neuorpsychiatrist, neuropsychologist, and multiple counselors. It is ironic that DS was born the year before the "landmark" PANDAS article was published by Swedo. Whenever I feel cheated by the early years when we did not know about PANDAS/PITAND/PANS, I turn it around and think about how fortunate we are to have the internet and this forum to share information and support.

 

Best wishes to all of our children and all of our warrior families!

[MomWithOCDSon]

Glad to hear things are on the right track, Kimballout! You and your son deserve a great year coming up here!

[nevergiveup]

My dd also 15 saw her greatest improvement after one year on ivig, given every 21 days. My dd suffered three major attacks from age 7 through 12 and I believe her autoimmune condition became chronic. Our doc said we would start seeing improvement at 6 months of ivig. My dd also had over 41 sinus infections. She was never not on abx for the last ten years of her life. Glad ur son is feeling better, my dd is also much improved.

[Mary M]

Thank you for sharing your story...it is so helpful to hear how about the many paths of PANDAS.

[T_Mom]

Kim--Thank you for this post. Your insightful posts have helped so many of us, it is so good to hear your current situation.

Thank you for encouraging us all.

[JAG10]

I love that!!! Pandaversary!!!!

 

Right there next to you both with 1 year of regular interval IVIG this month. I will just say the onset was not sudden/overnight nor has the recovery been either! And I so feel for you moms to have to dig out of the he11 hole of pandas and adolescence simultaneously!!! I have no doubt that your son is completely aware of the sacrifices and battles you have waged on his behalf.

 

We are all so fortunate to have each other.

[bulldog24]

Our anniversary just came too feb 17. Its amazing what 1 year changes huh?

 

I can say thanks to everyone that helped me and my son as well including a good friend who knows who she is

 

Thank you to the folks at the NIH and yale for doing their study.