Daughter was at NIH in 1997 , Dr Swedo

[marknla]

Hi everyone, I cant stop reading this forum. You all are very lucky to have each other. My daughter was one of the 50 children in the original case study at NIMH.

My daughters first tic was blinking at 3 years old. I brought her to her pediatrician ( thought her eyes might be irritated ). I remebmer the Dr. mentioning to me that "weren't you just here last week for strep"? I said yes and went on to talk about her eyes blinking. The next 4 years were like a bad dream. My daughter would be completely tic free for 4-7 mnths and then wake up with a explosion of throat clearing grunts, at its worse it was more like a bark. Facial tics ,grimaces, and odd movements. Even her personality changed and when she had it, she couldnt write.

There was so much going on with her I would have to keep a journal. It always started after a bout of strep. After each episode the tics were stronger and lasted longer. We went to ents, psyciatrists, allergists. EVERYONE thought I was nuts when I question if Strep and tourettes were somehow linked. There were times I would start to think I was crazy too. Then one day we would wake up and the problem was gone. This patterned repeated over and over again ... One late night after a psychiatrist earlier that day diagnosed her with Tourettes. I did a search online for strep and tourettes. I found Dr Swedo NIMH Pandas study... I cried when I read about the research project. . Everything fit my daughter to a T. I left a message that night, A doctor called me back the next day. We spoke at length and they decided to fly us to Maryland. I cant tell you what it meant to have someone validate my perceptin on what was happening to my daughter.

My daughter went thru a battery of tests. She was constantly having tics and movements while there her behavior was really deteriating. Not only was her titer elevated but she had strep as well! Needless to say she was put on a heavy dose of antibiotics. Tics started to subside within 1 day. After completion of those antibiotics, she went on and stayed on a low dose of antibiotic prophylactically . I think she was on it for a year. Maybe more. I am not a big fan of over using antibiotics but this condition warrented it. We have had some episodes of strep after that and the tics come back but she goes on her antibiotics swiftly. At 15 she kinda grew out of strep and by 18 the tourettes is a distant memory... She is at college, pre-pharmacy ,has a boyfriend job. I was hoping to possibly get to talk with others from that study.

God bless

LA

[chrisw]

Welcome!! And WOW!! I know many of us are always wondering about the future for our children and your post is SO encouraging!! I am so excited to hear of your daughters recovery. I think I can speak for many on this forum when I say THANK YOU, THANK YOU, THANK YOU for taking the time to share that with us.

 

Christie

[dee45]

Thanks for sharing such great news. Sounds like your daughter is doing very well.

 

Deanna

[P_Mom]

Ditto everyone else....THANK YOU!!!

 

This is a good example of how PANDAS does present with smaller clues before the noticeable onset. Almost everyone (PANDAS), in hindsight, can remember their kids having transient tics here and there, (My older son did), or slight behavior changes (my younger son), before the "Big one." So, there are clues to look out for before it really hits the fan....wish I knew that before. And might I add, my older son never had a "terrible" first episode. (yet, definitely noticeable)

 

Marknla...can I ask....did your daughter receive PEX or IVIG? What is your take on those treatments? Highly beneficial? Cure?

Also, one more question...what antibiotic did she stay on prophylactically? Oh, sorry...did she get symptoms with any illness...or only strep?

 

Thank you so much for posting. It is SOOOO encouraging to hear that news. God bless you and your family and I hope your daughter continues to do great!!

 

Another Mom who had a child in the study....Janice Zuilli...has a web-site and a contact e-mail on her site. I will look up and post the link for you later when I have time. Gotta run!

 

Kelly

[OTSMITH]

This is great..a happy ending.... did your daughter rcv.any other txs...such as IVIG,PEX ,motrin, or alternative stuff.--Jenn O

[sf_mom]

This is such a relief to hear! Thank you for posting your daughters story.

[marknla]

What a warm welcome.... thank-you!

 

My daughter did not receive the other treatments plasmapheresis or IVIG because she had a active strep infection while we were at NIMH. I had no idea she actually had strep when we arrived at the study. Her Clinician was DR. Pearlmutter (sp?) we had to first treat the strep with a ten day course of Antibiotics. Then she went on penv for a long time. When she would get any cold/flu some tics would break-thru short lived and not horrible. One time she actually got strep on the penv it all came back full blown but subsided more quickly then before and we just changed her antibiotics to treat . I wanted her pediatrician to fully understand the need to be agressive with antibiotics... also I remember intuitively "knowing" when others around her had strep by my daughters behavior. It was a long road for us but once diagnosed it was much much easier. I remember her last dose of PenV.. my fear was so great that it would all return. It never really did return. Heres my opinion, I am not a doctor, but I feel very strongly that every exacerbation of Pandas does some damage.. and I would have done anything to keep her from another outbreak during those formative years. I remember watching her from afar and thinking how long can she stand all of this ? My heart was breaking for her. I thank god for the first doctor that associated the two. If not my daughters brain would have been repeatedly assaulted by her own immune system. From a kid who distrupted the class with vocals, would walk and play the piano, spit and not even realized she was spitting, did repeated motor tics, had a hard time writing and reading (139 IQ ). I knew my daughter was awake in the morning when I heard her cough, it was the first thing she did in the morning and the last thing before she would sleep. I dont have to go on.... I havent thought about this stuff in years. But the feelings come back easily. Trust your instincts with your children, you are their only advocate. My daughter is 18 , gorgeous, smart, athletic, in college and doesnt even really remember that time in her life. This is truly beyond my dreams. She does spend my money like its water ..lol Pmom - It would be terrific if you could find Janice's website. Thanks and blessings to all of you and your children

[Debbie1]

Dear marknla,

 

I was crying when I read your story. After a few years of ups and downs and then a rough summer, I totally broke down last night. All I could think about was how long will my daughter have to go through this, will it ever get better, will it be difficult to get a job, will she ever get married. I know that I shouldn't think like this, but time has certainly taken its toll.

 

I woke up this morning and read your email and it was the inspiration I needed. THANK YOU SO MUCH FOR POSTING! I am so glad to hear that you daughter is doing well and I hope you will keep us posted on her continued success. I know it gives me so much hope and I'm sure it does wonders for others as well.

 

I am pretty sure my pediatrician mentioned to me that one of his patients was part of the NIH study and received IVIG there. I am going to drop off a copy of your post at my ped's office and ask him to give it to the patient's family. I hope they contact you.

 

Best wishes for continued success!!

 

Debbie

[Kayanne]

Thank you so much for letting us know how your daughter is doing. What a great inspiration...I read your post to my husband last night, and it was very good for him to hear your success story.

 

Here is that wesite mentioned earlier:

 

http://www.e-pandas.com/

 

I hope you succeed in getting in touch with other families from the original NIH studies.

 

Please continue to participate in this forum because your experience is invaluable!

 

Thank you!!

 

~Karen

[sf_mom]

I could ask a thousand questions but I'll keep it to three.

 

At what age did they stop the antibiotics? And how many years in total was she on antibiotics? Did she ever have her tonsils or adenoids removed?

 

THANK YOU!

[Megs_Mom]

Thanks so much for posting. I have tears reading your story - and it's conclusion. I really hope that someday, this is just a minor memory for Meg - that would be more than I can dream of. I knew I would be emotional when I read Sammy's Story later this month, but I was surprised at the emotions that your post raised.

 

I feel this odd sense of community right now - that right or wrong, we are all making gut decisions for our children - and trying to build a better story for future generations at the same time. I pray that when our children are in college, that we are not still reading the same posts of today from the next generation of parents.

 

You helped build the foundation that is helping our kids today - Thank you from the bottom of my heart.

[thereishope]

Okay...I'm another one crying. Thank you for posting. Right now I live day to day and it's hard to look at what the future may hold. The hope you're giving us is priceless. Thank you.

[bronxmom2]

I'm crying too! We are all so worried about the long-term future of our kids, though we hardly even realize it... as Vickie said we live day to day... thank you for posting!

[ShaesMom]

Okay, you can add me to list of cryers!! It is soooo encouraging to hear that there might be an end to this nightmare. Thank you so much for taking the time to share.

[EAMom]

Thanks for posting! (I sure wish Swedo would publish something on how the original PANDAS kids are doing long term!)