New User with 5 yr old daughter with PANDAS

[Doug]

Doug,

how old is your daughter? how did you know to correlate it with a throat infection? was the intrusive thoughts ocd immediately after, or a while after? Did you ever consult any type doctor? I'm guessing so, since you had abx, but not longterm, right? I'm guessing the bloodwork will include ASO titers as well?

 

thank

Faith

 

Hi Faith, it started as a cold then a fever and sore throat. Then she woke up acting bizzare about 3 days after the fever left. I didn't think much of it the first day then I thought what the heck is wrong with Lauren. " She was 4 " then I google seached OCD following a throat infection and PANDAS came up. After reading it I thought bingo.. Everyone was sceptical except me, then it slowly wanned down and I thought I was wrong. Then last July it came back at the same time as a fever and sore throat. " again no posative strep" we did Azithromycin for 5-6 weeks twice a week. She has been on nothing since thin and symtoms come and go and seem to be brought on by stress, primaraly being away from mom. We decidied to get the blood work done and our Dr., is on board with us. We wil probably seek IVIG and then antibiotics were not sure yet. The ony Doctor we have seen so far is her pediatric Dr. I am not sure all the blood tests they ran this time, I will find out next week and let you know. Thanks so much for your advice and am a very worried Daddy who wants his little girl to be okay. I hope this see's you well. Take Care, Doug

[Pandas_chicago]

Doug,

 

My name is Leslee and I live in Chicago and my son was treated by Dr. K in 2004, he had rapid onset of OCD, obtrusive thoughts , seperation anxiety ...you name it...Dr. K immediatly put him on steriods which reduced the swelling on his brain and then treated him with antibiotics....we had weekly blood draws to do the DNASE test ...after 4 months the DNASE stayed at 950 normal is less than 120 ....I had done a lot of research and felt I needed to take an aggressive approach , we had the IVIG done in Febuary of 2005...within 1 month we felt it took.

 

Today it as if this nightmare never happend, my son's story is one of Dr. K. clinical studies...I work with Diana and Dr. K and continually keep updated , Dr. K has become my son's primary care physician.

 

If you want to talk live let me know.

 

My son was 7 , today he is 11 1/2

[T_Mom]

Doug,

 

My name is Leslee and I live in Chicago and my son was treated by Dr. K in 2002, he had rapid onset of OCD, obtrusive thoughts , seperation anxiety ...you name it...Dr. K immediatly put him on steriods which reduced the swelling on his brain and then treated him with antibiotics....we had weekly blood draws to do the DNASE test ...after 4 months the DNASE stayed at 950 normal is less than 120 ....I had done a lot of research and felt I needed to take an aggressive approach , we had the IVIG done in Febuary of 2003...within 1 month we felt it took.

 

Today it as if this nightmare never happend, my son's story is one of Dr. K. clinical studies...I work with Diana and Dr. K and continually keep updated , Dr. K has become my son's primary care physician.

 

If you want to talk live let me know.

 

My son was 7 , today he is 11 1/2

 

 

Wow--Thank you for posting here Leslee-- Yey for Dr K and for you -- a determined and persistent Mom!

[sf_mom]

Leslee,

 

Its so nice to hear success stories. We have been treated by Dr. K also and are still praying for similar success. Right now our main issue is mood liability/mood switching. I was wondering if you remembered similar as your son recovered and how long do you think it took for him to 'FULLY' recover?

 

-Wendy

 

Doug,

 

My name is Leslee and I live in Chicago and my son was treated by Dr. K in 2002, he had rapid onset of OCD, obtrusive thoughts , seperation anxiety ...you name it...Dr. K immediatly put him on steriods which reduced the swelling on his brain and then treated him with antibiotics....we had weekly blood draws to do the DNASE test ...after 4 months the DNASE stayed at 950 normal is less than 120 ....I had done a lot of research and felt I needed to take an aggressive approach , we had the IVIG done in Febuary of 2003...within 1 month we felt it took.

 

Today it as if this nightmare never happend, my son's story is one of Dr. K. clinical studies...I work with Diana and Dr. K and continually keep updated , Dr. K has become my son's primary care physician.

 

If you want to talk live let me know.

 

My son was 7 , today he is 11 1/2

[KeithandElizabeth]

Leslie:

 

Thank you so much for posting. We love to hear these success stories. Can you share your healing story. Did it take a full year for your son to recover? Did he remain on antibiotics post the one year mark after IVIG? Was he on prophylactic antibiotics or full dose antibiotics?

 

Thank you in advance. We are all always struggling with these decisions on how best to heal our child.

 

Elizabeth

[Pandas_chicago]

Good morning everyone! To answer a few of the questions...I can summarize by saying during my son's illness the look in his eyes changed...even when he tried to smile he looked scared....and worried...1 month post IVIG he was sitting at the botton of the stairs and of course my husband and I were right there with him...hawking on him...and he was lacing his shoes...he looked up with a huge smile and a glint in his eyes and said "mommy daddy I'm gonna go out and play" - he was back...not mind you he would only go in our yard at that time...

 

I had taken him out of school for 3 months...onset was 9/23 ...I had journaled every moment of every day...Knowone Knew anything...it did appear that stress induced not the OCD by the anxieties and fears...when he went back to school we had to drive him (we were on a bus) ...then pick him up for lunch (1 hour) and bring him back and then pick up up - while my other two children chose to ride the bus.

 

End of 1st grade he decided that once a week he would try to eat lunch at school - but I went to school and sat at the lunch table...he then would go out to recess without me

 

Second grade - drive him to school, pick him up for lunch, (30 minutes) bring him back for recess , pick him up after school

 

During these two years...he would go to bday parties if I would stay , however , he was very selective ...my son was Extremly social prior to Pandas - was the one that was even invited to the girl parties ....and would go!

 

Third grade - drive to school, stay for lunch and recess, pick up - go to all bday parties and play dates...Made All Star Baseball...

short temper still around...as well as low tolerance for things that made him angry

 

Fourth grade - as if this never happened....he remembers still though and has a fear of hospitals, as Dr. K had him go for weekly blood draws.

 

Today we are on a daily antibiotic - Keflex

 

My son wants to help and has actually meet with several other children when they have come to Chicago to be treated by Dr. K!

 

Dr. K sat by my son's beside for almost the entire procedure....he is an amazing man

 

So ...IVIG worked for us...however as you can see the OCD symptoms will go first and then separation anxiety, and tollerance levels take a while ....

[dcmom]

Leslee- thank you so much for your post! We all need to hear stories like yours so much! Especially, that it did take time for healing- it is so hard to be patient.

 

I do have a question for you: I know your son had IVIG, you had some immediate results (within a month), and other results that progressed more slowly. During this time of healing, was he ever sick, and if so did that seem to cause a temporary uptick in symptoms?

 

thanks,

 

Eileen

[sf_mom]

Wow, your comments HELP tremendously...... I wanted to laugh and cry at the same time with relief. Its so painful to watch your child/children go through the process of recovery while trying to determine if there is an eventual relapse around the corner. Our biggest symptoms currently is emotional liability. One day our son is perfect and then 'BAME' a bad day AND I know the emotional liability is NOT indicative of our sons true personality.

 

Dr. K has been wonderful to us too. I will be FOREVER grateful to those that helped along the way.... Even the slightest bit of encouragement or hopeful words can make my day.

 

THANK YOU FOR YOUR STORY!!!!!!

[Doug]

Wow, your comments HELP tremendously...... I wanted to laugh and cry at the same time with relief. Its so painful to watch your child/children go through the process of recovery while trying to determine if there is an eventual relapse around the corner. Our biggest symptoms currently is emotional liability. One day our son is perfect and then 'BAME' a bad day AND I know the emotional liability is NOT indicative of our sons true personality.

 

Dr. K has been wonderful to us too. I will be FOREVER grateful to those that helped along the way.... Even the slightest bit of encouragement or hopeful words can make my day.

 

THANK YOU FOR YOUR STORY!!!!!!

 

Thanks so much for your story and encouring words. We are scheduling a phone consultation with Dr. T. in New York soon, and we will proceed with IVIG or Antibiotics. Right now our daughter is 95% Good. But we are keeping her in a bubble until we get treatment.

Thanks, Doug

[KeithandElizabeth]

Doug:

 

Also remember that Dr. Tom Smith is a Pediatric Oncologist/Hematologist in Denver and he is willing to help your child. I believe your pediatrician know him. He consulted with Dr. Kovacevic to get IVIG dosage levels. He is amazing and will work hard to get insurance to work with your situation.

 

He plans to help another family in California who could not get help in California.

 

His staff is very caring and compassionate!!!

 

Elizabeth

[EAMom]

hi pandas_chicago,

thanks for posting...so was your son's IVIG in the feb. of 2nd grade? (or first?)

 

Thanks!

[Doug]

Doug:

 

Also remember that Dr. Tom Smith is a Pediatric Oncologist/Hematologist in Denver and he is willing to help your child. I believe your pediatrician know him. He consulted with Dr. Kovacevic to get IVIG dosage levels. He is amazing and will work hard to get insurance to work with your situation.

 

He plans to help another family in California who could not get help in California.

 

His staff is very caring and compassionate!!!

 

Elizabeth

Thank you so much for this information