Tourette's Disappearing

[mrigsby]

Just curious if anyone else can relate. My son has had OCD for years. He was diagnosed with Tourettes at 10 years old. From around the age of 9 until barely over 12 years of age he had severe motor and vocal tics. For the last 9 months there have been no tics. I am aware that with Tourette's there tics can wax and wane, however there should not be a break for more than 3 months. Therefore, I know that he does not have Tourette's. When the Tourette's went away the OCD got worse and we gained emotional lability. Currently we are going through ODD. He has been placed in a emotional, behavoiral disorder class at school because of his behaviors. We have an appointment Tuesday with an infectious disease specialist that I only hope and pray will listen to me as I have yet to find anyone who will. The ENT referred us because he said he suspected that my son was a carrier and if he was there wasn't much that could be done by way of treatment. I just don't understand this. My child is not currently on any medications whatsoever. However, in the past he has been on numerous psy drugs. They don't seem to care to give him them and diagnosis him falsely with something so why is PANDAS so hard to get a doctor to diagnosis?

From the age of 7 my child has been given the following diagnosis's(keep in mind he will be 13 in March):

 

ADHD

Pediatric Anxiety Disorder

OCD

Tourette's Syndrome

Emotional Lability

Oppositional Defiant Disorder

 

(Accompanied by sensory problems and motor skill problems, ie. writing problems)

 

 

Hello!! I'm not a doctor, but I got enough sense to know that he can't have all of these. To paint a better picture, the ADHD pretty much disappeared when we went through the Pediatric Anxiety Disorder. He became withdrawn and closed off and very defpressed. Then the OCD came into play and he started doing down right freaky stuff. The Pediatric anxiety disappeared and along with OCD he started ticking ridiculously. This lasted a very long time. ( I was told OCD and Tourette's were lifetime diagnosis's, in other words if you got it, it can be helped but you will always have it) Well, Now the Tourette's is gone!!! OCD is still very present accompanied by Emotional Lability and Oppositional defiant disorder. He also still has sensory and motor skill problems.

 

It's like just when we are glad that something is gone, something else comes along and takes its place. He has a big history with strep and sinus infections. He tested positive twice in December with strep. The second time was only 5 days off of a 10 day round of Augmentin 1500mg a day. The doctor turned around and gave him another 10 round of Augmentin. (Both time symptoms were somewhat milder during antibiotics and worse after. ) He then referred us to ENT doctor who has now referred us to infectious disease doctor, meantime he hasn't had any antibiotics since the first week of January. And yes his symptoms have gotten MUCH worse!

 

So, I originally started this to ask, has anyone else expereinced being given a diagnosis only to have that disappear and be replaced by something else? It really blows me away that he had severe motor and vocal tics for 3 years and he hasn't had any in over 9 months. Thank God for that!!!

[ajcire]

When you say the ENT said if he is a carrier there is nothing that can be done... you mean the ENT doesn't think the tonsils out will help? It's possible my son is a carrier but it never occurred to me that it would be pointless to get his tonsils out and we have been considering it at the suggestion of the doctor we see for pandas as well as my pediatrician now. It sounds like your son gets strep symptoms right? I thought carriers didn't get the sore throat symptoms... my ds has never had a sore throat but tests positive sometimes... with just minor tics and then emotional liability.

 

Since your son frequently has strep and then that history on top it seems like a no brainer to me but of course I'm not a doctor so what do I know.

 

It breaks my heart that your son had to go through all that and it might be purely a strep issue

[Joan Pandas Mom]

Hi. PLEASE see a PANDAS doc listed here ASAP. I too wasted 6 years with my son's diagnosis. He had his tonsils out in mid Dec. and is still on an antibiotic. We saw results 13 days post- tonsillectomy. As of last week he is being treated by Dr. Trifiletti. I feel we are finally on the right track. Hang in there. You will find the answers.

[EAMom]

So, I originally started this to ask, has anyone else expereinced being given a diagnosis only to have that disappear and be replaced by something else? It really blows me away that he had severe motor and vocal tics for 3 years and he hasn't had any in over 9 months. Thank God for that!!!

 

I understand that can happen with PANDAS...the symptoms can change over time.

I ditto the others that recommended seeing a PANDAS expert ASAP...can you travel up to NJ to see Dr. T.?

[Chemar]

I honestly think Doctors are far too quick to hand out a Tourette diagnosis because that is kinda what they have been taught! Very few conventional doc are aware of the many other things that can trigger tics and OCD, including PANDAS

 

I agree with you that if your child has no tics anymore then it is likely the TS diagnosis was incorrect. As you point out, TS tics wax and wane but totally going away for any length of time is not usually characteristic of tourette tics

 

 

Just curious if anyone else can relate. My son has had OCD for years. He was diagnosed with Tourettes at 10 years old. From around the age of 9 until barely over 12 years of age he had severe motor and vocal tics. For the last 9 months there have been no tics. I am aware that with Tourette's there tics can wax and wane, however there should not be a break for more than 3 months. Therefore, I know that he does not have Tourette's. When the Tourette's went away the OCD got worse and we gained emotional lability. Currently we are going through ODD. He has been placed in a emotional, behavoiral disorder class at school because of his behaviors. We have an appointment Tuesday with an infectious disease specialist that I only hope and pray will listen to me as I have yet to find anyone who will. The ENT referred us because he said he suspected that my son was a carrier and if he was there wasn't much that could be done by way of treatment. I just don't understand this. My child is not currently on any medications whatsoever. However, in the past he has been on numerous psy drugs. They don't seem to care to give him them and diagnosis him falsely with something so why is PANDAS so hard to get a doctor to diagnosis?

From the age of 7 my child has been given the following diagnosis's(keep in mind he will be 13 in March):

 

ADHD

Pediatric Anxiety Disorder

OCD

Tourette's Syndrome

Emotional Lability

Oppositional Defiant Disorder

 

(Accompanied by sensory problems and motor skill problems, ie. writing problems)

 

 

Hello!! I'm not a doctor, but I got enough sense to know that he can't have all of these. To paint a better picture, the ADHD pretty much disappeared when we went through the Pediatric Anxiety Disorder. He became withdrawn and closed off and very defpressed. Then the OCD came into play and he started doing down right freaky stuff. The Pediatric anxiety disappeared and along with OCD he started ticking ridiculously. This lasted a very long time. ( I was told OCD and Tourette's were lifetime diagnosis's, in other words if you got it, it can be helped but you will always have it) Well, Now the Tourette's is gone!!! OCD is still very present accompanied by Emotional Lability and Oppositional defiant disorder. He also still has sensory and motor skill problems.

 

It's like just when we are glad that something is gone, something else comes along and takes its place. He has a big history with strep and sinus infections. He tested positive twice in December with strep. The second time was only 5 days off of a 10 day round of Augmentin 1500mg a day. The doctor turned around and gave him another 10 round of Augmentin. (Both time symptoms were somewhat milder during antibiotics and worse after. ) He then referred us to ENT doctor who has now referred us to infectious disease doctor, meantime he hasn't had any antibiotics since the first week of January. And yes his symptoms have gotten MUCH worse!

 

So, I originally started this to ask, has anyone else expereinced being given a diagnosis only to have that disappear and be replaced by something else? It really blows me away that he had severe motor and vocal tics for 3 years and he hasn't had any in over 9 months. Thank God for that!!!

[mrigsby]

When you say the ENT said if he is a carrier there is nothing that can be done... you mean the ENT doesn't think the tonsils out will help? It's possible my son is a carrier but it never occurred to me that it would be pointless to get his tonsils out and we have been considering it at the suggestion of the doctor we see for pandas as well as my pediatrician now. It sounds like your son gets strep symptoms right? I thought carriers didn't get the sore throat symptoms... my ds has never had a sore throat but tests positive sometimes... with just minor tics and then emotional liability.

 

Since your son frequently has strep and then that history on top it seems like a no brainer to me but of course I'm not a doctor so what do I know.

 

It breaks my heart that your son had to go through all that and it might be purely a strep issue

 

This same ENT removed his tonsils and adnoids, enlarged his sinus cavities, and graphed skin from behind his ear to fill in a hole from removing an ear tube, IN OCT. 2004. The whole year of 2004 was horrible! He had a sinus infection that we ended up going through 3 specialist before we were able to knock it out. Also allergies and asthma (according to doctors.) During that same year he had strep throat on 5 different occasions. 3 which landed him in the hospital, severly dehydrated. It would hit like a ton of bricks, fever would spike ridiculous, he would start vomiting and by the time I would get him to the doctor he would already be dehydrated. Last time he was put in hospital he also had scarlet fever!!! Mind you the last time he was put in hospital was approximately 2 months after tonsil and sinus surgery. It was almost 5 months later before they were able to rid him of the sinus infection.

 

Within 2 months of the sinus and strep chrisis finally being over the school insisted I have him evaluated for ADHD. And thats when we began this rollercoater ride we've been on with PANDAS. However, until recently I never knew what it was! I will have to say that since 2005 Harley has not had strep that I have been aware of. He has been ASYMPTOMATIC. Apparently after all of what we went through it went intercellular. However, after reading Saving Sammy, I immediately took him to pediatrician and begged for strep test. Sure enough throat swab was positive. His symptoms were milder while on antibiotics and within a few days of finishing the 10 day course, he was unbearable to be around. I took him back and he tested positive again. Thats when we were referred back to the ENT, and now he is sending us to an IMMUNOLIGIST. I thought it was an infectious disease specialist but they called to confirm appointment tomorrow and it is an allergy/immunologist. I just hope and pray that they will help us!

[smartyjones]

Thats when we were referred back to the ENT, and now he is sending us to an IMMUNOLIGIST. I thought it was an infectious disease specialist but they called to confirm appointment tomorrow and it is an allergy/immunologist. I just hope and pray that they will help us!

 

 

mrigsby - really don't want to stress you out more than you already are . . . but. . . we went to a allergy/immunologist at JHU - the head of the pediatric clinic b/c he previously worked with our ped. my son was testing for some food issues so we wanted to discuss that also. however, he couldn't help with pandas - which i kind of already knew - he referred us to see a neurologist. unfortunately, at the time, he referred us to Singer at JHU, which is not the road to go for pandas!

 

you certainly may be able to get some info from this appt. . . a neurologist is where you may end up.

 

good luck.