onset without knowing

[reactive]

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.

Johnsmom:

I am at work too. It is hard because when I am at home I am even more busy!!

The amazing thing for me that I have found on this forum is other links to PANDAS my son has I did not think about before:

Sensory integration issues

Auditory processing issues

Chronic, many allergies

School issues

Immune issues

Looking like Aspergers but not Aspergers

Chronic sinus issues, this one is new. We have a call today into the ENT he saw last week.

 

Since you have the elevated titers as I said before your case seems more clear cut, more of a "slam dunk". When my son was four and five he was more severe and I would get teary at work too. I did not have this forum then. I wish I would have, it would have helped me so much. But even now that ds is 9 my husband and I still tear up when we talk about how severe and little he was back then, when all he wanted to do was eat and could not eat. My ds does not remember that. I teared up today when I read Dr. T's post about the little boy with anorexia symtpoms who is dying. I mean, I don't know the story but I hope that kid is getting IVIG or PEX.

[Johnsmom]

my kid wasnt as sick as yours until he got older. i do remember pink eye when he was 1 but then no ear infection until age 4.

he was healthy but cried a lot. had seperation anxiety, poor sleeper and fixations,Ocd that would come and go. thank you for responding and i hope your son is doing well. i know how you feel. why couldnt i have done more? not our fault. not at all. thanks god our kids have parents who care.

 

 

 

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.

Johnsmom:

I am at work too. It is hard because when I am at home I am even more busy!!

The amazing thing for me that I have found on this forum is other links to PANDAS my son has I did not think about before:

Sensory integration issues

Auditory processing issues

Chronic, many allergies

School issues

Immune issues

Looking like Aspergers but not Aspergers

Chronic sinus issues, this one is new. We have a call today into the ENT he saw last week.

 

Since you have the elevated titers as I said before your case seems more clear cut, more of a "slam dunk". When my son was four and five he was more severe and I would get teary at work too. I did not have this forum then. I wish I would have, it would have helped me so much. But even now that ds is 9 my husband and I still tear up when we talk about how severe and little he was back then, when all he wanted to do was eat and could not eat. My ds does not remember that. I teared up today when I read Dr. T's post about the little boy with anorexia symtpoms who is dying. I mean, I don't know the story but I hope that kid is getting IVIG or PEX.

[thereishope]

Shortly after I found out my son had PANDAS, my aunt informed me that my Grandma had almost died from a strep related illness when she was a child (prior to antibiotics being available). I see that as significant medical history. So, you then have this info but you have no idea what to do with it or how it can help you now. Mixed emoions all over again.

 

I have also since found out that strep carriers run on that side of the family too. That is also the side that has numerous autoimmune disorders and some OCD.

[Johnsmom]

In my spaciness I forgot to add that my dads sister also had rheumatic fever!

 

 

 

Shortly after I found out my son had PANDAS, my aunt informed me that my Grandma had almost died from a strep related illness when she was a child (prior to antibiotics being available). I see that as significant medical history. So, you then have this info but you have no idea what to do with it or how it can help you now. Mixed emoions all over again.

 

I have also since found out that strep carriers run on that side of the family too. That is also the side that has numerous autoimmune disorders and some OCD.