Trying to get diagnosis

[EAMom]

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

[Tattoomom]

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

 

 

Sweet!

[Worried_Dad]

Think I read somewhere that chi-chi's, mai-tai's, and white sand beaches are more effective than IVIG... for parents.

 

 

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

[MonicaM]

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

[thereishope]

By any chance did they do a culture? As for Advil, do the tics go away when on it? With my son, sometimes it takes 1/2 hour to kick in, then begins wearing off at the 5 hour mark.When's your appt with he specialist?

 

 

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

[sf_mom]

I was thinking about this issue. I feel like I'm beating a drum but Kawasaki's appeared in Hawaii first and then eventually made its way over here late 1970's.

 

Anyway found this study.

 

Demographic and clinical characteristics of adolescents in Hawaii with obsessive-compulsive disorder.

 

http://www.ncbi.nlm.nih.gov/pubmed/12860788

 

 

 

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

[mama2alex]

The rapid strep isn't that accurate - lots of false negatives. Did they do a culture (the one they send to a lab and it takes a couple of days to get the results)? If not, I'd take him back first thing in the a.m. and INSIST on it. Let them laugh. Then once you have what you need, I'd start looking for a new pediatrician. They should be open to what you're telling them at a minimum. They don't need to be the ones to treat the PANDAS necessarily, but they do need to understand when you ask them for strep tests, and know better than to prescribe Ritalin before anyone has even tried to treat him for PANDAS.

 

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

[MonicaM]

By any chance did they do a culture? As for Advil, do the tics go away when on it? With my son, sometimes it takes 1/2 hour to kick in, then begins wearing off at the 5 hour mark.When's your appt with he specialist?

 

 

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

 

Yes.. they said they would. The swab was done today.

 

ADVIL - I gave him 3 yesterday, the first time doing this. (He's 5'8 at 120 lbs) I had given him 2 last Thursday but we didn't see a difference. We noticed that his tics went away with the 3 I gave him. It took about 30-45 mins to kick in but we noticed that his tics did stop. He does a zzzz sound... like he's saying sexy. I gave him two this morning for his headache but we were rushing to go to the doctor.... I didn't catch anything if anything did happen. It's hard giving this kid anything because he doesn't like taking meds.

 

Our appointment with the disease specialist is on Jan 15 but my daughter said that is final exam week. So I need to move it. Not sure if the appointment being so far out is going to impact our diagnosis.

 

We notice his tics come on when he's not doing something that's interesting to him or he's being rushed. He's well aware of the tics. I talk to him a lot. We discuss the obsessive thoughts .. that would be like.. girls... or how he feels the pressure of being popular in school.. the whole puberty thing. We talk about his tics sometimes. I ask if they affect him in school. When we finally went to the doctor it was because he finally confessed (because he feels like a freak for having them) that it was affecting him at school. So here we are. I can say he's a whole lot better now than back in Sept. Just today we noticed he's back to his talkative and whimsical self. I'm just afraid he'll go back to the way he was back in Sept if he gets sick again with a virus/strep.

[MonicaM]

The rapid strep isn't that accurate - lots of false negatives. Did they do a culture (the one they send to a lab and it takes a couple of days to get the results)? If not, I'd take him back first thing in the a.m. and INSIST on it. Let them laugh. Then once you have what you need, I'd start looking for a new pediatrician. They should be open to what you're telling them at a minimum. They don't need to be the ones to treat the PANDAS necessarily, but they do need to understand when you ask them for strep tests, and know better than to prescribe Ritalin before anyone has even tried to treat him for PANDAS.

 

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

 

 

I'm right there with you on the Ritalin thing.

[Tattoomom]

I'm right there with you on the Ritalin thing.

 

 

Ritalin is a stimulant and therefore would make the tics much WORSE!!!

 

Tics are often a side effect from those types of drugs and should never be prescribed to someone who already tics!

[Tattoomom]

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

 

 

At least I'm not alone in this... (((hugs)))

 

Hopefully we will find out some answers for our little guys soon!

[thereishope]

That's interesting. I remember looking at Buster's PANDAS history in the pinned threads. I believe it starts in the late 70's. Coincidence?

 

 

I was thinking about this issue. I feel like I'm beating a drum but Kawasaki's appeared in Hawaii first and then eventually made its way over here late 1970's.

 

Anyway found this study.

 

Demographic and clinical characteristics of adolescents in Hawaii with obsessive-compulsive disorder.

 

http://www.ncbi.nlm.nih.gov/pubmed/12860788

 

 

 

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

[thereishope]

Maybe you mentioned this and it's too early for me to think. I have all 3 kids at home on vacation and I have all my baking to do and start cooking. It's gonna be a long day!

 

So, back in Sept, do you recall a possible cause and effect for the probelms that surfaced. Perhaps not only in a matter of days but weeks? Did he go on any antibiotics back in Sept?

 

When you think back through life, have you notice an abupt change in him before?

 

 

 

 

By any chance did they do a culture? As for Advil, do the tics go away when on it? With my son, sometimes it takes 1/2 hour to kick in, then begins wearing off at the 5 hour mark.When's your appt with he specialist?

 

 

I am also trying to get a diagnosis. My 12 yr old son started with his tics right after he became sick back in Sept. The whole enchilada.. ticks, OCD .. obsessive thoughts. Not himself at all. Just suddenly he was this person we didn't know. I finally took him to his pediatrician. He said it wasn't PANDAS (he doesn't believe PANDAS exists) so he sent us to a child neuro. He said it was TS. That he had a mild case.

 

Today I took him to the dr again because of a sore throat and fever. BUT late last week I noticed his tics coming on strong. Just suddenly. Then yesterday he woke up with a fever and sore throat. So I took him. Another dr saw him. He suggested maybe start him on Ritelin (spelling?) Geee.. let's dope them up instead of taking care of the situation. They did the strep test and it was negative. This dr pretty much laughed in my face when I started asking questions about the tics and PANDAS.

 

I have tried the Advil. It helps for about 4-5 hours then his tics come back.

 

I have been able to make an appointment to see a disease specialist in Ft. Worth TX that I found in this forum. We'll see how it goes. I just want something... anything that can tell me what caused this sudden change. Yes.. puberty would be a good reason.. but does it turn a boy into a zombie?

 

Yes.. they said they would. The swab was done today.

 

ADVIL - I gave him 3 yesterday, the first time doing this. (He's 5'8 at 120 lbs) I had given him 2 last Thursday but we didn't see a difference. We noticed that his tics went away with the 3 I gave him. It took about 30-45 mins to kick in but we noticed that his tics did stop. He does a zzzz sound... like he's saying sexy. I gave him two this morning for his headache but we were rushing to go to the doctor.... I didn't catch anything if anything did happen. It's hard giving this kid anything because he doesn't like taking meds.

 

Our appointment with the disease specialist is on Jan 15 but my daughter said that is final exam week. So I need to move it. Not sure if the appointment being so far out is going to impact our diagnosis.

 

We notice his tics come on when he's not doing something that's interesting to him or he's being rushed. He's well aware of the tics. I talk to him a lot. We discuss the obsessive thoughts .. that would be like.. girls... or how he feels the pressure of being popular in school.. the whole puberty thing. We talk about his tics sometimes. I ask if they affect him in school. When we finally went to the doctor it was because he finally confessed (because he feels like a freak for having them) that it was affecting him at school. So here we are. I can say he's a whole lot better now than back in Sept. Just today we noticed he's back to his talkative and whimsical self. I'm just afraid he'll go back to the way he was back in Sept if he gets sick again with a virus/strep.

[Kayanne]

That's interesting. I remember looking at Buster's PANDAS history in the pinned threads. I believe it starts in the late 70's. Coincidence?

 

 

I was thinking about this issue. I feel like I'm beating a drum but Kawasaki's appeared in Hawaii first and then eventually made its way over here late 1970's.

 

Anyway found this study.

 

Demographic and clinical characteristics of adolescents in Hawaii with obsessive-compulsive disorder.

 

http://www.ncbi.nlm.nih.gov/pubmed/12860788

 

 

 

Funny...I have a friend who is a child psychiatrist in Hawaii. PANDAS is quite well-accepted there. So, you could get treatment and relaxation all in 1 trip!

 

This is a direct quote that I took out of Buster's post: http://www.latitudes.org/forums/index.php?...amp;#entry36300

 

"In 1976, Husby found that antibodies to GABHS bonded with neuronal tissue in the caudate nucleus (basal ganglia).

•He noted that this binding was found for strep of emm-type 6, 11, and 12.

•He also noted that the reaction did not occur in rabbit brains but only human neural tissue.

•46% of sera from 30 children with rheumatic chorea showed IgG antibody reacting with neuronal cytoplasm of human caudate and subthalamic nuclei.

•The antibody was also detected in 14% of 50 children with active rheumatic carditis. 203 controls showed no such antibody response.

In 1977-1979, Husby found these antibodies were pronounced in Huntington’s Chorea and in Sydenham Chorea"

 

Only the relevant research started in the 70's, not PANDAS...probably been around as long as strep, but just not recognized....we all LOVE FREUD now don't we!

[sf_mom]

I read another study last night that puts the rate as high as 13.8% in Native Hawaiian's.... I'm going to go find the link. They attribute most of it to over crowding conditions in home and RF.

 

http://qcbr.jabsom.hawaii.edu/QCBR/Turnerp...APedAd_2003.pdf

 

-Wendy