Update on Thomas - not so good

[acdrobert]

Hello all. I wanted to give you an update on Thomas. We were diagnosed as having "possible PANDAS" by our PEDs Neuro Jan 08. We have had the same run around that all of you have had. However we have not had the same horrible symptoms that some of your children have. His main symptom is tics with some mild ADD symptoms and mild separation anxiety. He has not had an OCD, rages, or urinary issues. I mention this because we never saw the great "cure" from IVIG that some of you saw. Thomas did stop ticcing almost immediately in response to the steriod burst. 5 weeks later we had the IVIG. We did see the separation anxiety annd ADD symptoms improve. However he did have the worst tics ever after the IVIG. He went from head bobbing and faint vocal tics to these tonic clonic tics that invovled ever limb. Dr. K kept telling us to hold on that it was part of this "turning back the pages" phenomenon. That was hard considering the fact that the worst tics came after we had paid for the IVIG Just like Dr K said, the tics miraculously stopped and we had about 10 days of almost complete tic free existence. Then...he went to camp.......he came back with a mild case of Impetigo and ticcing to beat the band. The good news is that he had a great time. he had 2 counselors who were very low key and didn't make a big deal about it and supposed no onther kid even noticed. (according to Thomas) So now I am back to square 1.

 

I have noticed that Thomas does seem to tic at the same time my other ADD son tends to get jumpy. I did have a educational psychologist tell me long before the tics started that he thought Thomas had ADD (along with me, my son, my sister, my two nephews as so on.) Has anyone noticed if non-stimulant ADD drugs help with the tics ? Thomas is the first person in our family to have tics. How do I know that the tics were just part of the ADD and he just happened to have a high strep titer when his onset of tics started. But we did have an abrupt start to the tics...thats part of the differential diagnosis isn't it ?

 

As you can tell I am very confused. I read a book on Tourettes Syndrome last night. (yup..that good ole hyper focus) I did not realize that Tourettes is also highly associated with OCD, tics, and ADD,

 

This is all so confusing. We are at a new low. For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class.

 

Thanks for letting me vent. Bless you all

[peglem]

For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class

.

 

Are you serious? OMG, I can't believe this! Shouldn't she be teaching her little girl to be tolerant of things that people can't help? I mean, i could see it if his tic was to slug the person next to him or something. I'd be talking to that teacher and explaining tics and letting her know that it is mighty unholy to make a kid feel bad over something he can't help doing...not only that, but what do you think he'll do the next time he's bored in Sunday school and wants a break? Oooh, this makes me angry!

 

I'm sorry that you and your son are having these problems...is he on proph. Abx? Do you have him strep tested whenever he has a resurgence of Sx's? I don't understand how you got IVIG based on one strep associated episode? Don't you need a series of strep related episodes to confirm dx? 'Course we have miles of history of strep related episodes and still have no officially confirmed dx.

[thereishope]

For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class

.

 

Are you serious? OMG, I can't believe this! Shouldn't she be teaching her little girl to be tolerant of things that people can't help? I mean, i could see it if his tic was to slug the person next to him or something. I'd be talking to that teacher and explaining tics and letting her know that it is mighty unholy to make a kid feel bad over something he can't help doing...not only that, but what do you think he'll do the next time he's bored in Sunday school and wants a break? Oooh, this makes me angry!

 

I'm sorry that you and your son are having these problems...is he on proph. Abx? Do you have him strep tested whenever he has a resurgence of Sx's? I don't understand how you got IVIG based on one strep associated episode? Don't you need a series of strep related episodes to confirm dx? 'Course we have miles of history of strep related episodes and still have no officially confirmed dx.

 

 

As for an official diagnosis, the child has to have the sudden onset of symptoms w/ a + strep test at least twice. However, many doctors will verbally give an unofficial diagnosis based on one episode because it is obvious it is PANDAS. But they will not put it in writing after only one.

 

Is there any way possible, you can convince someone to do a procedure (I don't know what it's called) to see if there is inflammtion w/ the basal gangila. I know one mom who had that done and it showed inflamation.

 

When the tics started again, did you take him for a strep test? If not, I would recommend taking him for one.

 

Finally, as for the ignorance of people, well, peolpe are rude.Personally, I would bring it up at some time to the mom. Did she see it happening? What her daughter was doing. Just say you want to being it to her attention. Then get mad depnding on her reaction.Unfortunately people who believe they are very religious and lead very pious lives do not completely practice what they preach. My husband's parents twice called my son Monk from the tv show (the one w/ OCD) and referred to him as the one w/ the personality change to a stranger right in front of us. Needless to say, we don't visit them anymore.

[pmoreno]

Hello all. I wanted to give you an update on Thomas. We were diagnosed as having "possible PANDAS" by our PEDs Neuro Jan 08. We have had the same run around that all of you have had. However we have not had the same horrible symptoms that some of your children have. His main symptom is tics with some mild ADD symptoms and mild separation anxiety. He has not had an OCD, rages, or urinary issues. I mention this because we never saw the great "cure" from IVIG that some of you saw. Thomas did stop ticcing almost immediately in response to the steriod burst. 5 weeks later we had the IVIG. We did see the separation anxiety annd ADD symptoms improve. However he did have the worst tics ever after the IVIG. He went from head bobbing and faint vocal tics to these tonic clonic tics that invovled ever limb. Dr. K kept telling us to hold on that it was part of this "turning back the pages" phenomenon. That was hard considering the fact that the worst tics came after we had paid for the IVIG Just like Dr K said, the tics miraculously stopped and we had about 10 days of almost complete tic free existence. Then...he went to camp.......he came back with a mild case of Impetigo and ticcing to beat the band. The good news is that he had a great time. he had 2 counselors who were very low key and didn't make a big deal about it and supposed no onther kid even noticed. (according to Thomas) So now I am back to square 1.

 

I have noticed that Thomas does seem to tic at the same time my other ADD son tends to get jumpy. I did have a educational psychologist tell me long before the tics started that he thought Thomas had ADD (along with me, my son, my sister, my two nephews as so on.) Has anyone noticed if non-stimulant ADD drugs help with the tics ? Thomas is the first person in our family to have tics. How do I know that the tics were just part of the ADD and he just happened to have a high strep titer when his onset of tics started. But we did have an abrupt start to the tics...thats part of the differential diagnosis isn't it ?

 

As you can tell I am very confused. I read a book on Tourettes Syndrome last night. (yup..that good ole hyper focus) I did not realize that Tourettes is also highly associated with OCD, tics, and ADD,

 

This is all so confusing. We are at a new low. For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class.

 

Thanks for letting me vent. Bless you all

 

 

I am so sorry for you. It's sad that these children can't even be tolerated at church activities when they are ill. These poor kids who are ticcing constantly (completely against their will) and then to fell rejected on top of it. I have to say that my daughters tics were limited to more posturing, or forming her hands in certain positions over and over again. The IVIG did seem to get rid of that & we haven't seen any of that again. I do believe that the IVIG can get rid of a number of symptoms as the troublesome antibodies are diluted by the good antibodies of the IVIG. However, whatever is left behind may move to other receptor sites and sometimes you see new behaviors that you hadn't seen before. In general it does tone down a lot of the inflammatory response and you see some immediate results. What can happen later, though, is that if the child is exposed again to some antigen (whether strep, other bacteria, fungus or virus), there can be a new inflammatory response and everything can start all over.

The ideal case scenario is that a child receives IVIG - it clears up the major symptoms, then they're on prophylactic antibiotics to prevent further strep infections and they recover (as long as you keep up with the yeast overgrowth from being on the antibiotics). The problem starts when strep is not the only antigen (or maybe not even an antigen) that causes the hyperimmune response. When your son came back from camp he had impetigo. While he was there he was likely exposed to any number of viruses and fungus - not only by his surroundings, but all the people he came in contact with. This, most likely, contributed to the new tic onset. I have found from personal experience with my daughter that natural antivirals and antifungals seem to be much more effective than anything else. Of all of them, I believe oil of oregano is the best. It's fairly strong, but if you add 3-4 drops to at least a tablespoon of any other oil to dilute and then chase it with some kind of juice (daily or better yet twice daily for at least a week), it should take care of just about anything. Then you have to give things for immune support to hopefully prevent future infections. As I've mentioned in other posts, kefir has worked pretty well for us. Other people have found success with multi-strain probiotics and I've heard that LDN has been pretty successful with immune modulation. Pat

[greeneyes48072]

Have you spoken to Diana yet? She is very informative. Have you tried a steroid burst since the IVIG? From the little bit I've heard, the burst can help a lot with a flare up that occurs after the IVIG. If you are concerned about whether it is indeed PANDAS vs traditional Tourettes, what about contacting Dr. Cunningham and sending some blood to her to check for the antineural antibodies...just a couple thoughts...