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I have an 11 year old son and he is outside playing right now!!! Not just playing.... but he went to a neighbor's house to invite them to play. Most parents would not think much about that statement but I know the parents that are on this forum are not like most parents. These everyday events for most parents -are huge accomplishments for our families and give us hope for the future.

 

As I was feeling an overwhelming joy watching my son outside I thought back over the last year. Wow, have we come a loooong way. I realized last year at this time we were simply trying to survive a daily living nightmare. I realized I needed to post this to bring some encouragement to those that are still living the daily nightmare.

 

I will summarize our experience with PANDAS. (my earlier posts may have had a different timeline- I realized after reviewing MD record some of the ages were wrong) When he was 3 he developed a vocal tic. Over the years the medical chart showed chronic strep (plus frequent pharyngitis), chronic croup, frequent pink eye, reflux, viral rashes, sleep problems, and sinus infections. Interestingly, they were usually followed by a 'behavior consultation' about a month after infections due to increase in separation anxiety, rages, and OCD - which always resulted in a re-referral to psych.

 

He was diagnosed with TS at the age of 7 and then after that all the symptoms were explained as co-morbid conditions to TS. April 2009 he had an exacerbation. All the symptoms were magnified what seemed to be 1000x's greater than ever before after a strep and sinus infection. Our daily life changed. Rages, crying spells, irrational fears ( I know you all know) consumed our life. There was little sleep for my husband and I and the days seemed to be never-ending. We began medicating him for the mood swings and rages. They medications seemed more to 'numb' him then help. Then last fall everything changed

 

Last fall we finally found an answer. PANDAS. He began augmentin 2x/day with 1 course of steroids. It has not been an overnight change...but gradually our son is returning. He is off of 2 of the 3 'psych' drugs that he was taking. He is being weaned from the third medication (he is at 25% of the original dose). The executive functioning deficits (difficulty attending in school, short term memory difficulties, difficulties starting and completing assignments without help, etc) and fine motor difficulties remain but the neurologist says this will get better in time. He still has fear of germs and irrational anger outbursts but nothing like before...they are manageable. We still have a long road ahead but on this beautiful Spring day I wanted to bring comfort to those of you that are exhausted from the battle that even though this is a horrible illness there is hope.

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NVAMom, I am cheering for your child--and for you.

With the right Pandas treatment our kids come back--healing does take time.

 

 

 

Whether or not all doctors believe this is based in an "autoimmune response" -- we can no longer afford to deny children the treatments which may free them from encephalitis-triggered symptoms, which we know to include OCD/tics/ODD.

Edited by T.Mom
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I echo T.mom

 

May i ask when you started new regime...i don't need a blow by blow, but more curious when you figured out pand/pit

and how soon after you started new modality and how many months it's been since you started this new journey...

one more...how old was ds when you started...was he still 10 or was he already 11

 

I love every healing story.....It's like going to wedding...always a good time!!!

 

 

 

 

I have an 11 year old son and he is outside playing right now!!! Not just playing.... but he went to a neighbor's house to invite them to play. Most parents would not think much about that statement but I know the parents that are on this forum are not like most parents. These everyday events for most parents -are huge accomplishments for our families and give us hope for the future.

 

As I was feeling an overwhelming joy watching my son outside I thought back over the last year. Wow, have we come a loooong way. I realized last year at this time we were simply trying to survive a daily living nightmare. I realized I needed to post this to bring some encouragement to those that are still living the daily nightmare.

 

I will summarize our experience with PANDAS. (my earlier posts may have had a different timeline- I realized after reviewing MD record some of the ages were wrong) When he was 3 he developed a vocal tic. Over the years the medical chart showed chronic strep (plus frequent pharyngitis), chronic croup, frequent pink eye, reflux, viral rashes, sleep problems, and sinus infections. Interestingly, they were usually followed by a 'behavior consultation' about a month after infections due to increase in separation anxiety, rages, and OCD - which always resulted in a re-referral to psych.

 

He was diagnosed with TS at the age of 7 and then after that all the symptoms were explained as co-morbid conditions to TS. April 2009 he had an exacerbation. All the symptoms were magnified what seemed to be 1000x's greater than ever before after a strep and sinus infection. Our daily life changed. Rages, crying spells, irrational fears ( I know you all know) consumed our life. There was little sleep for my husband and I and the days seemed to be never-ending. We began medicating him for the mood swings and rages. They medications seemed more to 'numb' him then help. Then last fall everything changed

 

Last fall we finally found an answer. PANDAS. He began augmentin 2x/day with 1 course of steroids. It has not been an overnight change...but gradually our son is returning. He is off of 2 of the 3 'psych' drugs that he was taking. He is being weaned from the third medication (he is at 25% of the original dose). The executive functioning deficits (difficulty attending in school, short term memory difficulties, difficulties starting and completing assignments without help, etc) and fine motor difficulties remain but the neurologist says this will get better in time. He still has fear of germs and irrational anger outbursts but nothing like before...they are manageable. We still have a long road ahead but on this beautiful Spring day I wanted to bring comfort to those of you that are exhausted from the battle that even though this is a horrible illness there is hope.

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He started Augmentin 9/23/2009 at 500 mg 2x/day for a sinus infection and we were just learning about PANDAS. We saw some improvements in PANDAS symptoms and begged the pediatrician to continue the dose until we saw the neurologist. The neurologist increased the dose on 10/22/2009 to 875 mg Augmentin 2x/day. He was 11 years and 2 months when we started the treatment.

He also takes acyclivir (an anti-viral)400 mg once per day because he was having frequent mouth sores (not thrush) which were resulting in exacerbations. The acyclivir is increased to 4x/day when he has mouth sores. He started that around March 3, 2010.

 

 

Hope that helps. Thank you and T.mom for your 'cheers'

 

 

I echo T.mom

 

May i ask when you started new regime...i don't need a blow by blow, but more curious when you figured out pand/pit

and how soon after you started new modality and how many months it's been since you started this new journey...

one more...how old was ds when you started...was he still 10 or was he already 11

 

I love every healing story.....It's like going to wedding...always a good time!!!

 

 

 

 

I have an 11 year old son and he is outside playing right now!!! Not just playing.... but he went to a neighbor's house to invite them to play. Most parents would not think much about that statement but I know the parents that are on this forum are not like most parents. These everyday events for most parents -are huge accomplishments for our families and give us hope for the future.

 

As I was feeling an overwhelming joy watching my son outside I thought back over the last year. Wow, have we come a loooong way. I realized last year at this time we were simply trying to survive a daily living nightmare. I realized I needed to post this to bring some encouragement to those that are still living the daily nightmare.

 

I will summarize our experience with PANDAS. (my earlier posts may have had a different timeline- I realized after reviewing MD record some of the ages were wrong) When he was 3 he developed a vocal tic. Over the years the medical chart showed chronic strep (plus frequent pharyngitis), chronic croup, frequent pink eye, reflux, viral rashes, sleep problems, and sinus infections. Interestingly, they were usually followed by a 'behavior consultation' about a month after infections due to increase in separation anxiety, rages, and OCD - which always resulted in a re-referral to psych.

 

He was diagnosed with TS at the age of 7 and then after that all the symptoms were explained as co-morbid conditions to TS. April 2009 he had an exacerbation. All the symptoms were magnified what seemed to be 1000x's greater than ever before after a strep and sinus infection. Our daily life changed. Rages, crying spells, irrational fears ( I know you all know) consumed our life. There was little sleep for my husband and I and the days seemed to be never-ending. We began medicating him for the mood swings and rages. They medications seemed more to 'numb' him then help. Then last fall everything changed

 

Last fall we finally found an answer. PANDAS. He began augmentin 2x/day with 1 course of steroids. It has not been an overnight change...but gradually our son is returning. He is off of 2 of the 3 'psych' drugs that he was taking. He is being weaned from the third medication (he is at 25% of the original dose). The executive functioning deficits (difficulty attending in school, short term memory difficulties, difficulties starting and completing assignments without help, etc) and fine motor difficulties remain but the neurologist says this will get better in time. He still has fear of germs and irrational anger outbursts but nothing like before...they are manageable. We still have a long road ahead but on this beautiful Spring day I wanted to bring comfort to those of you that are exhausted from the battle that even though this is a horrible illness there is hope.

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I have an 11 year old son and he is outside playing right now!!! Not just playing.... but he went to a neighbor's house to invite them to play. Most parents would not think much about that statement but I know the parents that are on this forum are not like most parents. These everyday events for most parents -are huge accomplishments for our families and give us hope for the future.

 

As I was feeling an overwhelming joy watching my son outside I thought back over the last year. Wow, have we come a loooong way. I realized last year at this time we were simply trying to survive a daily living nightmare. I realized I needed to post this to bring some encouragement to those that are still living the daily nightmare.

 

I will summarize our experience with PANDAS. (my earlier posts may have had a different timeline- I realized after reviewing MD record some of the ages were wrong) When he was 3 he developed a vocal tic. Over the years the medical chart showed chronic strep (plus frequent pharyngitis), chronic croup, frequent pink eye, reflux, viral rashes, sleep problems, and sinus infections. Interestingly, they were usually followed by a 'behavior consultation' about a month after infections due to increase in separation anxiety, rages, and OCD - which always resulted in a re-referral to psych.

 

He was diagnosed with TS at the age of 7 and then after that all the symptoms were explained as co-morbid conditions to TS. April 2009 he had an exacerbation. All the symptoms were magnified what seemed to be 1000x's greater than ever before after a strep and sinus infection. Our daily life changed. Rages, crying spells, irrational fears ( I know you all know) consumed our life. There was little sleep for my husband and I and the days seemed to be never-ending. We began medicating him for the mood swings and rages. They medications seemed more to 'numb' him then help. Then last fall everything changed

 

Last fall we finally found an answer. PANDAS. He began augmentin 2x/day with 1 course of steroids. It has not been an overnight change...but gradually our son is returning. He is off of 2 of the 3 'psych' drugs that he was taking. He is being weaned from the third medication (he is at 25% of the original dose). The executive functioning deficits (difficulty attending in school, short term memory difficulties, difficulties starting and completing assignments without help, etc) and fine motor difficulties remain but the neurologist says this will get better in time. He still has fear of germs and irrational anger outbursts but nothing like before...they are manageable. We still have a long road ahead but on this beautiful Spring day I wanted to bring comfort to those of you that are exhausted from the battle that even though this is a horrible illness there is hope.

So happy for you and your son. It is so true how we find simply joy watching our children enjoy life as they should. God Bless and I hope things stay well for you.

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