onset without knowing

[Johnsmom]

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

[sf_mom]

I am so sorry to hear your son is sick. Geez...... I just posted about Kawasaki's and Rheumatic Fever two minutes ago. Our son's friend who had RF, had a groin rash and looked like he could have been diagnosed with Asperger syndrome last OCT. He got RF at 4 years - 4 months, he is now 7 years - 6 months and many, many of his symptoms are starting to reverse. He has been treated by Dr. K with two IVIG treatments, 12 weeks apart, last treatment just two weeks ago. Can you remember when the rash started? Was it prior to or around age 5?

 

I sure wish you the best of luck. Dr. K is absolutely the best Dr. for your situation.

 

 

 

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

[Suzan]

Hi, sorry you are going through all this! My girls had strep that I believe gave them pandas so young that they never had sudden onset. Could he have had strep early enough to contribute to his overall symptoms? We did see sudden later with new strep infections, but since they had sensory issues, separation anxiety, adhd behavior, etc. it was hard to always recognize sudden.

 

Their titers have never been significantly high even with documented strep.

 

Susan

[Johnsmom]

Hi, sorry you are going through all this! My girls had strep that I believe gave them pandas so young that they never had sudden onset. Could he have had strep early enough to contribute to his overall symptoms? We did see sudden later with new strep infections, but since they had sensory issues, separation anxiety, adhd behavior, etc. it was hard to always recognize sudden.

 

Their titers have never been significantly high even with documented strep.

 

Susan

[Johnsmom]

Hi, sorry you are going through all this! My girls had strep that I believe gave them pandas so young that they never had sudden onset. Could he have had strep early enough to contribute to his overall symptoms? We did see sudden later with new strep infections, but since they had sensory issues, separation anxiety, adhd behavior, etc. it was hard to always recognize sudden.

 

Their titers have never been significantly high even with documented strep.

 

Susan

[Johnsmom]

I am so glad you replied but boy am I having a hard time replying to this post. This format is weird or I am just very tired.

 

I have a lot of suspicions about what acutally happend to my son. At 6 months of age he began slamming his legs into the crib in the middle of the night in his sleep. This is when he was lying on his back. I talked with the doc about it and he said to try to wake him when he was doing it. he wanted to see it he was having seizures. I lasted about three weeks. If I recall I think it only happened when he was asleep. I was able to wake him so we let it pass. I documented it becuase it was so annoying. It would wake us up. One night it lasted all night. I got out of bed 6 times. He was a bad sleeper with seperation anxiety. He also had a fettish with my hair. It seemed to comfort him when he touched it. With his bad sleep habits I remember being up in the middle of the night with him. I used to have to rock him to sleep and then rock him to sleep when he got up in the middle of the night. I vividly remember him facing me on his knees (he was early toddler age) with his pacifier in his mouth with incessant drool. He would just touch chunks of the top of my hair repeatedly. A few times he would then pull it hard. I remember jumping one night becuase I was falling asleep in the rocking chair and he yanked it really hard and I yelled. It startled him and he began to cry.

He was a chubby baby. He wasnt a cuddler but loved to sit on my lap and watch Thomas.

As he grew taller and thnned out, we began to notice that he seemed somewhat weak and uncoordinated. He never wanted to do crafts. He avoided other children except if they were a little older. He talked late. Having only one child I didnt know better and I thought he would just catch up because thats what boys do.

He could barely pedal a tricycle. I discussed some of these things with the doctor. I didnt take him to the doctor a lot - he wasnt really a sick kid. I do remember calling the doctor though when he would cry. I thought he had an earache. I took him in but no earache. The other times the nurse would just say that babies cry. I did have an appointment set up to have a speech evaluation around 3 years of age. I would call to him and he wouldnt respond, but sometimes he would. I cancelled the appt after talking with other moms who told me that all our kids ignore us.

I started taking him to the YMCA for a sport of the week class. It was in a gymnasium with about 50 kids and he was scared to death. He covered his ears and rolled into a ball. The teacher suggested a smaller class which I took him to. It was a small padded room with about six kids. They did gymnastics. I was able to leave him. He liked it.

4 yr old kidndergarten started and thats where everything fell apart. He avoided the other children, didnt want to do crafts and would hide under the lego table. The only thing he did was play with the same three pieces of legos everyday. The teacher called and we had an IEP where a counselor told me she thought he had aspergers. I freaked! We waited 7 1/2 months to see a neurologist who gave us the label of PDD-NOS. She had to send us to a speech therapist and a neuropsychologist because she could not label him for sure without their input.

There is so much more. That year he came down with some kind of sickness where he could not walk for a day. The doctor had us go for bloodwork to check his SED rate. It was 21 on a scale of 1-15. He said it was viral and it had to run its course. He also said he only saw this once in another child. He developed an ear infection that year too. He never had one as a baby that I know of. We began the bio-medical approach when he was five. Supplements, gluten and casein free diet

chelation, the list goes on. He developed rectal strep about two years ago. We treated it but his groin rash never only went away around this time of year (I dont see it now) We were told it was yeast and to put antifungal on it. We began to check strep titers because of behaviors. One day he told me he wanted to push me off of a clff so I would die. I called the doctor right away and she said strep!!! Since then he has had 6 titer tests done all elevated ASO's no DNASE. We also had one case of strep throat and our share of fevers. This past Halloween he got sick again. He had a fever for two days and then it broke. I took him for bloodwork and then the next day he couldnt walk!!! There it was again. Doctor said it was H1N1 but he didnt test him. UGH. I should have demanded. His ASO's came back at 651!!!! There is so much more to right about behaviors. He is a sweet boy. I have seen so much normalcy and then it dissappears. I am going absolutely crazy until we see the doctor on March 31st. I really think my boy is just sick!!! I hope you or anyone else has time to read and respond. Please talk me off of the ledge.

Ann

[Johnsmom]

[

Oh My god. I am losing it right now. I think he got the groin rash about two years ago, just prior to a bout with impetigo and rectal strep. Did this boy just start exhibiting behaviors when he got the rash. My kid was always a little different from a very yound age. please please respond.

 

 

quote name=SF Mom' date='Mar 7 2010, 04:30 PM' post='58970]

I am so sorry to hear your son is sick. Geez...... I just posted about Kawasaki's and Rheumatic Fever two minutes ago. Our son's friend who had RF, had a groin rash and looked like he could have been diagnosed with Asperger syndrome last OCT. He got RF at 4 years - 4 months, he is now 7 years - 6 months and many, many of his symptoms are starting to reverse. He has been treated by Dr. K with two IVIG treatments, 12 weeks apart, last treatment just two weeks ago. Can you remember when the rash started? Was it prior to or around age 5?

 

I sure wish you the best of luck. Dr. K is absolutely the best Dr. for your situation.

 

 

 

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

[thereishope]

Welcome.

 

In regards to your question about DNASE, I pulled this from Buster's corner on www.pandasnetwork.org

 

http://www.pandasnetwork.org/buster.html

 

46% of subjects presented no ASO rise

55% presented no Anti-DNAseB rise

and 37% presented no rise of either ASO nor Anti-DNAseB

 

I also think if the strep is on the skin, that can affect blood tests and not give clear results. it's also harder for antibiotics to clear the strep when it is on the skin.

 

What I'm going to do since it can be overwhelming to go on this forum at first, is provide some links thatwill answer a lot of your questions and open you up to a lot more. I suggest printing them out and reading them. It makes it a little easier to follow.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Buster's Flow Chart

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

Finally, here is a link to OCD as others on this forum have seen. Sometimes you get so accustomed to the "quirks" our kids have, you don't even realize it is OCD or not the norm...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

[reactive]

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

Hi there. Just wanted to say that although my son's ASO titers were only elevated a few times, and never had an elevated antiDNase B titer, my son's history is very similar to yours. Sensory integration issues young. Our ped thought he had autism at age 3, but we took him to a developmental ped and they said no, not PDD. Looks like autism, aspergers, but isn't. I've had him to developmental 3 times. But he does have that quirkyness. And there was always that SOMETHING you could not put your finger on. He talked late too. We did speech at age 3.

 

Of course, if you can pull up any if my other posts you will see he had an exposion around age four that took many months to resolve. PANDAS was mentioned but at that PARTICULAR incident the strep was negative. My son also seems now to react to some viruses. He reacted to H1N1 this past fall. At age 6 he required tonsillectomy after approx 9 strep tonsillitis infections in a row. He did seem to improve some after that surgery.

 

I never made this link before, but my son did have very severe bouts of a weird diaper rash at age 2. I kind of dealt with it at home, but it was so severe that cream would not stay on...I had to use a medicated powder. I thought it was due to eating things like noodles that had egg when I did not realize egg was in it as he had an egg allergy. Now I wonder if it could have been strep.

 

I have my son's old records from the ped office from birth to current. One thing I do notice is that if he was ever sick, which was a lot, they never checked him for strep until he was older. I know kids under one generally don' get strep, but he was never checked at age 2 and maybe once or so at age 3. So, I do think PANDAS could be missed...at least in out case we did not even check him for strep until age 3. He may have had it before.

[sf_mom]

The not being able to walk is another indication of RF..... definitely discuss these symptoms with Dr. K. He can help tremendously.

 

-Wendy

 

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

[reactive]

The not being able to walk is another indication of RF..... definitely discuss these symptoms with Dr. K. He can help tremendously.

 

-Wendy

 

Hello-

 

This is my first post. We have an 8 yr old son who was diagnosed PDD NOS at the age of 5.

We have had strep problems for the past two years that we know of. He came down with rectal strep and impetigo and thats when we began to check titers. His ASO and DNASE have been checked 6 times. His ASO's have always been elevated but his DNASE has never. (that we know of) I have up and down behaviors of irritablitly and OCD along with a lot of other crap that I always attributed to his autism. I see the pattern. He does not have extreme OCD but he has said nasty things to me that he wanted to kill me. Then I get explosive motivation and a great kid. Theres lots more. Does he really have to have a suddedn onset to be conisdered a PANDAS kid. We have an appt with DR Kovacivec soon. If we can get this strep cleared up, I know he will be a better kid and look healthy. I have seen it. He also has had a serious groin rash that comes and goes.

Thanks

Ann

[/quote

 

]

Wanted to add, may not be related, but my son could not walk either and had joint pain at his worst at age four. Since his strep was negative, I never knew why the joint pain. I keep going back and forth from he had strep and we missed it on the test to maybe it was viral.

 

Just thought it would be good to say this in case others have a hard time tracking down the strep sometimes...as Johnsmom has such clear evidence of strep here...I feel like some others have a harder time making the link with every flare of symptoms.

 

Johnsmom...glad you are seeing Dr. K. This case seems so clear cut to me, although I am the farthest thing from an expert...

[Johnsmom]

Just to let you know the rash started around age 6 I think.

 

I am so glad you replied but boy am I having a hard time replying to this post. This format is weird or I am just very tired.

 

I have a lot of suspicions about what acutally happend to my son. At 6 months of age he began slamming his legs into the crib in the middle of the night in his sleep. This is when he was lying on his back. I talked with the doc about it and he said to try to wake him when he was doing it. he wanted to see it he was having seizures. I lasted about three weeks. If I recall I think it only happened when he was asleep. I was able to wake him so we let it pass. I documented it becuase it was so annoying. It would wake us up. One night it lasted all night. I got out of bed 6 times. He was a bad sleeper with seperation anxiety. He also had a fettish with my hair. It seemed to comfort him when he touched it. With his bad sleep habits I remember being up in the middle of the night with him. I used to have to rock him to sleep and then rock him to sleep when he got up in the middle of the night. I vividly remember him facing me on his knees (he was early toddler age) with his pacifier in his mouth with incessant drool. He would just touch chunks of the top of my hair repeatedly. A few times he would then pull it hard. I remember jumping one night becuase I was falling asleep in the rocking chair and he yanked it really hard and I yelled. It startled him and he began to cry.

He was a chubby baby. He wasnt a cuddler but loved to sit on my lap and watch Thomas.

As he grew taller and thnned out, we began to notice that he seemed somewhat weak and uncoordinated. He never wanted to do crafts. He avoided other children except if they were a little older. He talked late. Having only one child I didnt know better and I thought he would just catch up because thats what boys do.

He could barely pedal a tricycle. I discussed some of these things with the doctor. I didnt take him to the doctor a lot - he wasnt really a sick kid. I do remember calling the doctor though when he would cry. I thought he had an earache. I took him in but no earache. The other times the nurse would just say that babies cry. I did have an appointment set up to have a speech evaluation around 3 years of age. I would call to him and he wouldnt respond, but sometimes he would. I cancelled the appt after talking with other moms who told me that all our kids ignore us.

I started taking him to the YMCA for a sport of the week class. It was in a gymnasium with about 50 kids and he was scared to death. He covered his ears and rolled into a ball. The teacher suggested a smaller class which I took him to. It was a small padded room with about six kids. They did gymnastics. I was able to leave him. He liked it.

4 yr old kidndergarten started and thats where everything fell apart. He avoided the other children, didnt want to do crafts and would hide under the lego table. The only thing he did was play with the same three pieces of legos everyday. The teacher called and we had an IEP where a counselor told me she thought he had aspergers. I freaked! We waited 7 1/2 months to see a neurologist who gave us the label of PDD-NOS. She had to send us to a speech therapist and a neuropsychologist because she could not label him for sure without their input.

There is so much more. That year he came down with some kind of sickness where he could not walk for a day. The doctor had us go for bloodwork to check his SED rate. It was 21 on a scale of 1-15. He said it was viral and it had to run its course. He also said he only saw this once in another child. He developed an ear infection that year too. He never had one as a baby that I know of. We began the bio-medical approach when he was five. Supplements, gluten and casein free diet

chelation, the list goes on. He developed rectal strep about two years ago. We treated it but his groin rash never only went away around this time of year (I dont see it now) We were told it was yeast and to put antifungal on it. We began to check strep titers because of behaviors. One day he told me he wanted to push me off of a clff so I would die. I called the doctor right away and she said strep!!! Since then he has had 6 titer tests done all elevated ASO's no DNASE. We also had one case of strep throat and our share of fevers. This past Halloween he got sick again. He had a fever for two days and then it broke. I took him for bloodwork and then the next day he couldnt walk!!! There it was again. Doctor said it was H1N1 but he didnt test him. UGH. I should have demanded. His ASO's came back at 651!!!! There is so much more to right about behaviors. He is a sweet boy. I have seen so much normalcy and then it dissappears. I am going absolutely crazy until we see the doctor on March 31st. I really think my boy is just sick!!! I hope you or anyone else has time to read and respond. Please talk me off of the ledge.

Ann

[Johnsmom]

Thank you so much. I am so happy I got on this post. what a wonderful intelligent group of parents. I was in touch with Diana Pohlman and have read some of the pandas network but appreciate so much the info that you have highlighted on. Our appt with Dr K is March 31st. I have to calm down. My mother just told me this morning that her mother died from an enlarged heart when she was 40. She had rheumatic fever as a child and it damaged her heart, My mom was only 7 at the time. I knew all about this but didnt know about the rheumatic fever. I busted out in tears when she told me as I was driving down the interstate.

 

 

Welcome.

 

In regards to your question about DNASE, I pulled this from Buster's corner on www.pandasnetwork.org

 

http://www.pandasnetwork.org/buster.html

 

46% of subjects presented no ASO rise

55% presented no Anti-DNAseB rise

and 37% presented no rise of either ASO nor Anti-DNAseB

 

I also think if the strep is on the skin, that can affect blood tests and not give clear results. it's also harder for antibiotics to clear the strep when it is on the skin.

 

What I'm going to do since it can be overwhelming to go on this forum at first, is provide some links thatwill answer a lot of your questions and open you up to a lot more. I suggest printing them out and reading them. It makes it a little easier to follow.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Buster's Flow Chart

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

Finally, here is a link to OCD as others on this forum have seen. Sometimes you get so accustomed to the "quirks" our kids have, you don't even realize it is OCD or not the norm...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

[mom md]

My son looking back started with symptoms around age 18 months (seperation anxiety, night toerrors) and then by 4-5 had clear OCD. He was always anxious, OCD, temper tantrums that looked exorcist like and then just as we were about to go to the doctor things got better. He had a rash at one point and multiple ear, sinus, pulmonary infections. We went to a series of doctors over the last three years (14 to be exact) and got a series of diagnosis (ADD, restless leg syndrome, anxiety, OCD). Then he started with the tics, rages, insomnia, and finally full blown chorea. Even as a doctor it took the tics and chorea for me to realize this was neurological. Then at 7 we got the diagnosis of PANDAS. ASO was 1750 and antiDNase B was 1320. At that point his last documented strep infection was two years prior. We did azith with soem improvement but then went to PEX and IVIG. We did a phone consult with Dr. K and he said "Not to worry, he is young and can be cured". Now we are a year later and he is 97% normal. The majority of our days are good and I now recognise how sick he was without me knowing. Please know you are doing the right thing and he will be treated.

[Johnsmom]

I should really stop checking these posts at work as i am hiding my face so no one sees me bawling my eyes out. I have never had such a strong feeling about something in my life. Thank you thank you and i hope everyone who responded to my post hears me as well. I am so glad i am here!

 

 

My son looking back started with symptoms around age 18 months (seperation anxiety, night toerrors) and then by 4-5 had clear OCD. He was always anxious, OCD, temper tantrums that looked exorcist like and then just as we were about to go to the doctor things got better. He had a rash at one point and multiple ear, sinus, pulmonary infections. We went to a series of doctors over the last three years (14 to be exact) and got a series of diagnosis (ADD, restless leg syndrome, anxiety, OCD). Then he started with the tics, rages, insomnia, and finally full blown chorea. Even as a doctor it took the tics and chorea for me to realize this was neurological. Then at 7 we got the diagnosis of PANDAS. ASO was 1750 and antiDNase B was 1320. At that point his last documented strep infection was two years prior. We did azith with soem improvement but then went to PEX and IVIG. We did a phone consult with Dr. K and he said "Not to worry, he is young and can be cured". Now we are a year later and he is 97% normal. The majority of our days are good and I now recognise how sick he was without me knowing. Please know you are doing the right thing and he will be treated.