Pandas Symptom?

[myrose]

I remember reading somewhere on the board about confessions. My daughter did a lot of this back when it all started. She used to constantly tell me all the bad things she did. They were very simple things but she would confess to everything.

I am wondering now if this is a sign of Pandas/OCD/TICS.....or like all else....it happens together with everything!

Thanks in advance for all the input on this.

[Dedee]

Myrose,

 

Gosh yes! My son thought that he did everything wrong and confessed things he did the previous year. He would tell me things he thought he was doing wrong and he wasn't even doing them. I told his psychiatrist about a time when he went to a place in the neighborhood that I told him he was grounded from. He did this while in the care of a babysitter, so of course I knew nothing of it. When I got home from work he was pacing outside on the driveway because he needed to confess it to me right away. I mean, what do you do in that situation? The psychiatrist said this was a component of his OCD and actually common in kids with OCD. OK, whatever. It's really a hard one to figure out how to handle. But then again, it all is isn't it?

 

Dedee

[amy s]

Yes we had that big time and it was out of the blue. Confessions, constantly and none of them made sense. We don't have that as much these days.

[pmoreno]

I remember reading somewhere on the board about confessions. My daughter did a lot of this back when it all started. She used to constantly tell me all the bad things she did. They were very simple things but she would confess to everything.

I am wondering now if this is a sign of Pandas/OCD/TICS.....or like all else....it happens together with everything!

Thanks in advance for all the input on this.

 

Yes, Gaby is constantly saying "I'm sorry" - her teachers have remarked on this and she does it at home constantly about everything.

[myrose]

Okay now I have to ask if everyone that has replied so far has been diagnosed with Pandas???

[pmoreno]

Okay now I have to ask if everyone that has replied so far has been diagnosed with Pandas???

 

Yes, Gaby was diagnosed definitively, not only because of the behaviors, waxing & waning and titers, but also with a PANDA;s panel. Dr. K from Chicago has also confirmed that PANDAs kids do a lot of apologizing and worrying and obsessing about insignificant things and will frequently ask the same questions, needing reassurance about things - like Gaby will ask - am I bad? was that a bad thing to say? was that a bad thing to do? Is this right? I think I'm bad. I think I didn't do this right. etc. Pat

[Chemar]

My son has been through this as well as the "tell all" stuff where he literally would report everything he did to me "I touched my nose" I walked 3 steps" etc etc

 

the only time he ever had that "confess and tell" mode was when he was still on the meds so I am not sure if that was a factor

 

now when he is in OCD wax, he will sometimes want to discuss any fears, phobias with me for reassurance. I have to just say "no it cant hurt you" or whatever he designates as THE answer.......

 

as far as we know he has never had strep, but we know he has been exposed to epstein barr virus (no mono symptoms tho) and possibly mycoplasma. I have long felt he has a PITANDs component to his genetic TS/OCD

[Dedee]

Yes, we have a definitive PANDAS diagnosis by both the pediatrician and Dr. Murphy. The diagnostic criteria used were the abrupt (overnight) onset of his ocd symptoms following a strep infection, his worsening of symptoms with subsequent strep infections, the eventual tic disorder occurance (again, overnight), following strep, and his continued elevated titers. Lord, it has been a long eight years!

 

Dedee

[michele]

With his OCD and tics did your son ever do any repetitive toe walking cracking or finger knuckle cracking? This seems to be a repeat tic for my son after fevers or strep exposure. I have made an appointment with a ped rheumatologist next week. Plus I am hoping to start up with a new child psych soon. I don't know if it will take time to residual the behavior post stress of the illness? It is so hard to deal with so many different factors. So many pieces to the puzzle. I think my son must have the Pitands component to genetic TS/OCD also. It often times flares after viruses. His immune system has really been hit hard this fall too. I am sure the stress isn't helping any. We need to teach him stress management too. Hopefully the psych can help here also. Our first one didn't get the involuntary part of the tics. Needless to say we will get a new one. I think he thought he was acting out for attention. Thanks.

Michele

 

 

My son has been through this as well as the "tell all" stuff where he literally would report everything he did to me "I touched my nose" I walked 3 steps" etc etc

 

the only time he ever had that "confess and tell" mode was when he was still on the meds so I am not sure if that was a factor

 

now when he is in OCD wax, he will sometimes want to discuss any fears, phobias with me for reassurance. I have to just say "no it cant hurt you" or whatever he designates as THE answer.......

 

as far as we know he has never had strep, but we know he has been exposed to epstein barr virus (no mono symptoms tho) and possibly mycoplasma. I have long felt he has a PITANDs component to his genetic TS/OCD

[myrose]

Cheri,

Did your son just wake up one day with all his symptoms? Or did you notice things right from the start?

[Chemar]

Cheri,

Did your son just wake up one day with all his symptoms? Or did you notice things right from the start?

 

he had tics and other OCD symptoms from a very young age (toddler and even before probably...)...we just didnt realize fully what they were although my husband recognized himself & his dad in much of it....just didnt really know about TS then

 

just after my son's 10th birthday he did have a dramatic manifestation of intense tics, OCD and depression

 

we were told by the neuro it was the TS gene "switching on" with hormonal changes but it was dramatic enough for me to investigate possible PANDAS connection. Based on no evidence of strep (never has had sore throat, negative cultures, negative titres etc) he was classified as genetic Tourette Spectrum Disorder

[Chemar]

With his OCD and tics did your son ever do any repetitive toe walking cracking or finger knuckle cracking? This seems to be a repeat tic for my son after fevers or strep exposure.

 

nope...never have seen that in my son

[myrose]

Gee I wish there was just ONE thing that stood out from TS/TICS/Pandas. Just so one would know which path to take and what to fight for. My daughter has only been on antibiotics about 3x in her whole life so I am wondering if when we come off from topamax and things go bad again, if I should just try and fight for some antibiotics just to see if it made a difference in her.

Does anyone think that at that point (if the antibiotics have a postive/dramatic effect) that I should make my way down the pandas path or is it possible that antibiotics have a positive effect on TS as well??

 

Cheri, has your son ever been on antibiotics? (ever saw a change during that time of any kind)

This is so truly frustrating. After we finish our little program here and we come off from topamax...I am only going to have one shot at getting this right. I could NOT put her through it all again, it would kill me (not to mention her)

I would call Dr. K in Chicago but I am afraid of the steroid thing..the last thing I want to do is make things worse!

The antibiotics I am thinking would be the safeet way providing I keep her on her probiotics???????

 

Maybe at the end of the program when everything internally and all the metal is out we will not have to do anything more. Gee ya know I pray for that everynight!

 

Thanks for all your replies and experience quotes everyone....I guess I am having one of those days/nights where I just become so angry inside and frustrated because I really just do not know what to do and quite frankly...I am sick of feeling helpless in this whole thing.

[Chemar]

Cheri, has your son ever been on antibiotics? (ever saw a change during that time of any kind)

 

yes, he has been on antibiotics very occasionally, most recently in 2006 on zithromax for the infected fistula related to his Crohn's. He noted an improvement in overall Crohn's symptoms then but we dont recall any specific improvement in tics or OCD. I should mention that at that time he was still suffering intense daily pain from the Crohn's and the stress of that had tics sky high

 

since implementing the specific diet & supplement treatments over the past 2 years his Crohn's is really very subdued now and he no longer has pain. He takes monolaurin for one week of every month as natural antibiotic now

[pmoreno]

Gee I wish there was just ONE thing that stood out from TS/TICS/Pandas. Just so one would know which path to take and what to fight for. My daughter has only been on antibiotics about 3x in her whole life so I am wondering if when we come off from topamax and things go bad again, if I should just try and fight for some antibiotics just to see if it made a difference in her.

Does anyone think that at that point (if the antibiotics have a postive/dramatic effect) that I should make my way down the pandas path or is it possible that antibiotics have a positive effect on TS as well??

 

Cheri, has your son ever been on antibiotics? (ever saw a change during that time of any kind)

This is so truly frustrating. After we finish our little program here and we come off from topamax...I am only going to have one shot at getting this right. I could NOT put her through it all again, it would kill me (not to mention her)

I would call Dr. K in Chicago but I am afraid of the steroid thing..the last thing I want to do is make things worse!

The antibiotics I am thinking would be the safeet way providing I keep her on her probiotics???????

 

Maybe at the end of the program when everything internally and all the metal is out we will not have to do anything more. Gee ya know I pray for that everynight!

 

Thanks for all your replies and experience quotes everyone....I guess I am having one of those days/nights where I just become so angry inside and frustrated because I really just do not know what to do and quite frankly...I am sick of feeling helpless in this whole thing.

 

 

Wendy, you don't have to worry about the prednisone - its not that high of a dose and only for a short time (5 days) - it absolutely is not a big deal. (I'm a nurse and I am usually not real crazy about giving meds to my kids in general) but this is benign - nothing to worry about. It's really only a diagnostic tool to see if there is a change of some kind - if there is, its a better insight into whether or not the IVIG would be effective for that person. The antibiotics would work if she's recently been exposed to strep, but probably wouldn't work if she has not been exposed recently, although they would help prevent any further immune response in case she is exposed again in the near future. The IVIG helps with the damage that's already done. Then prophylactic antibiotics prevent future exacerbations.

 

As far as hoping that symptoms go away with metals coming out, it is something that you can't accomplish overnight. I would be surprised if 6 weeks would be enough to do it. Usually if kids are that severely contaminated that it would cause immune issues, then it would probably take at least a year to pull enough metal out to make a difference. If you try to do it too fast, you can cause damage to the kidneys, liver and other organs because as the metal leaves, it has to go by these routes and too much at one time can put too much of a burden on these organs, that's why it is better to go slow. Pat