Teenagers?

[Bio and adopt]

Does anyone have experience or advice with older teenagers? I have two teens with PANDAS. My daughter is 19 and my son is 14. They both have had tics, OCD, ADD etc. They both began seeing a Neurologist at an early age about 4 or 5. After displaying tics and behavior issues at between 2 and 3 years old. I always knew it was strep related just because of the close relation of exposure to strep and their symptoms. The docs always told me PANDAs was controversial and they never wanted to take the issue any further. Both kids have been on SSRI,s and Strattera for years. Now that they are older their symptoms are lesser degree but they still have some symptoms. They both still wax and wane with all symptoms but dont seem to get strep very often,(that I am aware of). I am just realizing they definitely have PANDAS, the more I read the more I say " my kids fit this exactly, they have had episodes of all of the symptoms". I just received copies of their medical records and after going through and highlighting everything related to PANDAS, I was shocked. There were even symptoms in the records I had forgotten they had. We have been dealing with this for 17 years.

Does anyone have any advice on where to start for medical treatment?

Does anyone have experience with starting treatment at such a late age.

 

The 19 year old is of course finished growing. The 14 year old is just starting puberty he is a late bloomer.

Thank you for any advice.

We live in SouthEastern Virginia

I am going to call Dr. Beth Latimers office on Monday to see if she will see the kids

 

Melissa

[faith]

hello Bio,

Could I ask you about the Strattera? you say your kids have been on this for some years? could you tell me how they fared? what did it help with? ocd, attention? did it have any effect of increasing their tics? are their symptoms mostly controlled with these meds?

 

thanks

Faith

[MomWithOCDSon]

Does anyone have experience or advice with older teenagers? I have two teens with PANDAS. My daughter is 19 and my son is 14. They both have had tics, OCD, ADD etc. They both began seeing a Neurologist at an early age about 4 or 5. After displaying tics and behavior issues at between 2 and 3 years old. I always knew it was strep related just because of the close relation of exposure to strep and their symptoms. The docs always told me PANDAs was controversial and they never wanted to take the issue any further. Both kids have been on SSRI,s and Strattera for years. Now that they are older their symptoms are lesser degree but they still have some symptoms. They both still wax and wane with all symptoms but dont seem to get strep very often,(that I am aware of). I am just realizing they definitely have PANDAS, the more I read the more I say " my kids fit this exactly, they have had episodes of all of the symptoms". I just received copies of their medical records and after going through and highlighting everything related to PANDAS, I was shocked. There were even symptoms in the records I had forgotten they had. We have been dealing with this for 17 years.

Does anyone have any advice on where to start for medical treatment?

Does anyone have experience with starting treatment at such a late age.

 

The 19 year old is of course finished growing. The 14 year old is just starting puberty he is a late bloomer.

Thank you for any advice.

We live in SouthEastern Virginia

I am going to call Dr. Beth Latimers office on Monday to see if she will see the kids

 

Melissa

 

Melissa --

 

Yes, your story is VERY familiar! We're just a couple of months away from teenage-land ourselves, but our son was first diagnosed with OCD at the age of 6. Similar to you, I raised the possibility of PANDAS then, and our doctors waived it off, as well. So we went for years on therapy and SSRIs, treating the behaviors but not ever actually getting at the root of the issue.

 

My son has never actively had strep, either; he was always entirely asymptomatic, but within days of him coming home from school with a note regarding another kid in his class having been identified as having strep, he would be find but I would wind up with strep throat! I'd take him to have a throat culture, and it always came back negative. So I sort of gave up on the whole PANDAS thing after a year or so. That was until I stumbled across "Saving Sammy." Since Sammy's strep was asymptomatic, also, and his doctors went the ASO titer blood test route, finally, this summer, we did the same thing. Most experienced PANDAS folks don't see that ASO titer test as a definitive affirmation of PANDAS, but it was sufficient to bring our existing pediatrician on board to get a long-term antibiotics prescription.

 

Seeing Dr. Latimer should be of great help to you, I would think. I don't think anyone experienced with PANDAS would blink twice at teenage patients, especially when the medical records can confirm instances of earlier exposures and/or exacerbations that merely went undetected as PANDAS.

 

As for the treatment for teenagers, I've been wondering the same thing. Because my son went almost 6 years without PANDAS treatment, is it too late for him? Has his brain been permanently modified by all that's gone on in the ensuing years? If he is treatable, will it take longer and/or stronger doses than it would have if we'd caught it at a younger age? Beth Maloney (Sammy's mom and the book's author) has encouraged me to hang in there, that because Sammy was 12 before his PANDAS was identified and he was "successfully" treated at 13 and 14, then my almost 13 y.o. should fare well with treatment, also.

 

Crossed fingers for all of us!

[Bio and adopt]

hello Bio,

Could I ask you about the Strattera? you say your kids have been on this for some years? could you tell me how they fared? what did it help with? ocd, attention? did it have any effect of increasing their tics? are their symptoms mostly controlled with these meds?

 

thanks

Faith

[/quote

 

 

They began stratterra when it first became approved for ADD about 7 years ago. It helped some with the ADD and seemed to help control the tics a little. I think it helped with the tics because they where able to relax and focus a little more. This was not a miracle drug but with them not being able to take the stimulants (Ritalin, Adderall, etc.) it was our only choice. One thing that made me believe it worked was my daughters notebooks at school where neat and orderly when she was on it and declined when she was not taking it. Through the years I never saw any negative side effects.

[memom]

My dd17 is currently being treated. Suspect has had many years but became debilitating 2 years ago. Tonsils out due to repeated infection gave her the best boost, steroids helped but we regressed again after completion. SSRI's not much help nor did CBT for a year. She had been on antibiotics now since October, not much help. I would see Dr. Latimer in person, she won't worry about the age. Keep us informed. There are a few of us here on this board but not a lot. My daughter does not have tics, just the OCD.

 

Ellie

[SHollins]

Does anyone have experience or advice with older teenagers? I have two teens with PANDAS. My daughter is 19 and my son is 14. They both have had tics, OCD, ADD etc. They both began seeing a Neurologist at an early age about 4 or 5. After displaying tics and behavior issues at between 2 and 3 years old. I always knew it was strep related just because of the close relation of exposure to strep and their symptoms. The docs always told me PANDAs was controversial and they never wanted to take the issue any further. Both kids have been on SSRI,s and Strattera for years. Now that they are older their symptoms are lesser degree but they still have some symptoms. They both still wax and wane with all symptoms but dont seem to get strep very often,(that I am aware of). I am just realizing they definitely have PANDAS, the more I read the more I say " my kids fit this exactly, they have had episodes of all of the symptoms". I just received copies of their medical records and after going through and highlighting everything related to PANDAS, I was shocked. There were even symptoms in the records I had forgotten they had. We have been dealing with this for 17 years.

Does anyone have any advice on where to start for medical treatment?

Does anyone have experience with starting treatment at such a late age.

 

The 19 year old is of course finished growing. The 14 year old is just starting puberty he is a late bloomer.

Thank you for any advice.

We live in SouthEastern Virginia

I am going to call Dr. Beth Latimers office on Monday to see if she will see the kids

 

Melissa

[SHollins]

Melissa,

 

My daughter is 16 and was diagnosed about 2 weeks ago after having tics and symptoms since nov. We were told it was all mental and her way of avoiding school and to keep sending her to school. This is a girl who had a 3.5 gpa, a cheerleader and invited to represent her school in DC at a youth leadership meeting. Today her only concern is when can I go back to school.

I would say to advocate for your kids and don't stop until you get the answer. When I first took my daughter to the emergency room she was given a preganacy test and a drug test and told to go home it is all in her head. I had to advocate for my child with the doctors, psychologist and the school systems. I found a doctor in Provo Utah, I live in Salt Lake City, who agreed with me and was willing to look for the answers.

Also, look at alternative doctors. They may be more willing to listen to your concerns.

 

Sandra

[Allison]

Hi, everyone.

This is my first post after "lurking" for quite a while.

 

I have a teenage dd (16) who is a cheerleader and good student. She's been out of school, her senior year, for two months and we don't know when she can go back. We live in the Seattle area and do have a great pediatrician who has been steering us through the PANDAS waters. We've done a Cunningham blood test (cam kinase 200) and antibiotix & steroids. Lining up IVIG or possibly plasmex, tbd.

 

Her brief history is that she never had any strep infections that we know of; but in 6th grade she had a "meltdown" that is difficult to describe, but fits many of the descriptions I've read on this board. After a few months and about a year of equine therapy, she seemed to pull out of it, with no PANDAS mentioned or any drugs needed. Her Junior High and early High School years were up and down, with lots of tummy aches and brief periods of irritability/stress/lowered grades. She always seemed to pull out of it, usually with the undertaking of a new sport that would offer new social groups to interact with. We put it down to typical teenage angst, plus some emotional development issues linked to having moved here from England when she was six and putting her into 2nd Grade instead of 1st, etc...

 

This past year has been different, and her episodes seem to be linked to a mono illness last January, and a high fever illness this past September. All of a sudden, she's OCD in October, which had not been previously noted by the therapist she'd been seeing for a year. A therapist, btw, who is a specialist in adolescent OCD CBT! So, now we're in "Loopy Land" with all sorts of issues and problems, and it's just so nice to read everyone else's stories and share information.

 

I feel like we're only now beginning to understand what's really been going on all these years, and I hope that it will help us make better choices as we go forward. Being fore-warned is being fore-armed, or some such expression.

 

I'm really interested to know if the teenagers just grow out of it eventually, or if my dd can look forward to her entire adulthood with this?

 

Thanks!

[memom]

Allison,

 

Your story is similar to ours. I can't yet tell you yet about long term recovery but would like to expect we will get her back to near normal. We got 50% improvement with Tonsils out in August. We then saw another big boost with a month of steroids but regressed back to 50% once they were done. We are persuing an immunologist consult, hoping someone will consider IVIG or Pex. I wish you well in your ongoing journey of recovery. Keep in touch.

 

Ellie