Can this still be PANDAS at 17?

[tln21572]

Does anyone have a diagnosed child older than 16? My DS was diagnosed 7 years ago when he was in third grade. Tics had been there for a while, then came the rages, and then intrusive thoughts. We were fortunate, after going to several doctors, therapists, and psychiatrists, a psychiatrist recognized the symptoms and asked if his behavior was sudden--could we pinpoint when he started to behave the way he was? We answered yes, and he had us go to our pediatrician for a strep titer test. DD's test came back 977 (lab said normal was 0 to 150). Pediatrician immediately started DD on ammox 1000mg a day. Within a week the intrusive thoughts were gone, behavior was much better, and eye tics had diminished to almost zero. He continued with antibiotics off and on for a year and then it seemed like the symptoms just disappeared. Over the last 6 years, we have treated with 30 day courses of antibiotics when we thought he had been exposed (mainly his eye tics would increase--no intrusive thoughts or bad behavior). Now the eye tics have increased and he has developed a nasal tic. We treated with antibiotics with no results. The intrusive thoughts have not returned as far as I know. He is extremely moody, self-absorbed, and acting out (the last rage was directed at a teacher at school and he was suspended for two days). He is not sleeping--maybe three hours a night off and on. Grades have tanked completely (he never has been a strong student but he was able to maintain a average to low C in most of his classes.) We went back to psychiatrist (our psychiatrist had left so we saw a new DR) and explained what was going on. He recommended therapy. We have gone to three therapists. The first one my son nor I cared for, the second my son did not like, and the third we both liked. However, he has a wait list and it has been three weeks since we talked to him. Went to his pediatrician to get help with the sleep problem and begged him to help. He is onboard with PANDAS however he doesn't want to treat without consulting with therapist. We live in VA and to my knowledge there are no doctors who "specialize" in PANDAS. I contacted Dr. Latimer's office but she doesn't accept our insurance. We are swimming in medical bills and just don't have the money to pay her out of pocket. There is one more medical issue we just found out about in August 2011. My DS has an enlarged aortic root. Currently it is at 3.6 cm and at 5 cm they will start dicussing surgery because should the root thin too much it could rupture and cause instant death (I have my thoughts on this as well--rheumatic fever causes heart problems--strep is a form of or can be very similiar to rheumatic fever--so my thoughts are strep has caused this heart condition. His cardiologist says they don't know why this happens and she had never heard of PANDAS. Again, my brain has connected the dots but I'm not a medical doctor.) Sorry this is so long. I guess what I'm looking for is if anyone has a diagnosed child over the age of 16 who seems to be experiencing symptoms of PANDAS and if anyone knows of PANDAS causing heart problems? My question to the pediatrician was at what point does this stop being a pediatric disorder? Any help, thoughts, ideas would be greatly appreciated. Finally, the only reason I feel in my heart this is PANDAS is because everything seems very very similar to what we went through before he was diagnosed 7 years ago. I just don't know what to do. Thanks for listening.

[DeterminedMomVA]

I'm sorry you're struggling with this too. We're also in VA. Dr. B in CT takes some insurance, including ours. It's a 6ish hour drive from NoVa. Not much cheaper, all considered, than going out-of-network to Dr. L, but it's another option. Some people stay at Ronald McDonald house in CT when they are seeing Dr. B for, I think, about $10 per night.

[Dedee]

I have a 16 year old son who was diagnosed at the age of 6 with PANDAS. He has been mostly stable since age 11 when he had his tonsils out & went on daily antibiotics. However, occasionally I still see a few tics during times of illness. They are things that only a parent would notice, but still it's a change. As far as his moods, it's hard to tell. He is a very intraverted boy and doesn't like to talk about feelings and so forth. I pretty much have to corner him and ask him straight out. Even then I'm trying to decide if he is telling the truth or not. However, he has been on the A-B honor roll for years and is over all very sweet. But I don't kid myself that he is cured. He still has issues with food and a few other lingering things that lets me know that the old PANDAS bug still hides within.

 

So my answer to your question is yes.....I do think your sons issues are PANDAS related. I would try to get some long term antibiotics going. At least a month long trial. You may want to try something stronger than amoxicillin. He could have other infections causing this flare. Maybe Zithromax or Clindamycin.

 

One of the PANDAS specialist told me once that I should start seeing an end to this in the late teens to early twenties. So I have my eyes set on 20 as my target for hope! I'm going to be one p-off'd Mom if this doesnt come to pass.

 

Good luck with your son - Dedee

[Kiera]

Yes this is probably pandas, pediatric means up to 21! And I've read in a couple of places Dr's believe it can go way beyond. Think there's even a few young adults on the forum here with pandas. So don't let his age steer you in the wrong direction. The oldest person Dr K has treated was in the mid 20s. So I would do all that you would do if he were 10 again and treat aggressively, search for hidden infection, try high dose antibiotics, possibly try steroid burst. Check all the various pandas websites for providers in your area (many have sprung up since your son was last treated) so help is out there, just have to be aggressive and find it. Good luck!

[minimaxwell]

Actually Dr. K told us of a patient in his 30's. This man left his wife and kids,drove home and wanted to sleep in his parents room! Also, Dr. jenike recently told me he had a few men in their early 20's he suspected had PANDAS. You could try getting Dr. L covered in network from your insurance. Ask your ped, they know how.

[tpotter]

Actually Dr. K told us of a patient in his 30's. This man left his wife and kids,drove home and wanted to sleep in his parents room! Also, Dr. jenike recently told me he had a few men in their early 20's he suspected had PANDAS. You could try getting Dr. L covered in network from your insurance. Ask your ped, they know how.

 

 

Either the NIMH new website or white paper (can't remember which) mentions possible adult onset (although your DS's was not adult onset.) I do think it is strep or other infection(s) related, and I certainly think the doctors should clearly rule out strep with the heart involvement. What about having your dr test for strep, staph, mycoplasma as a starter, and if possible, he shouldn't have a problem treating. Also, I would probably see a ARF specialist, because of the possible heart connection. If it is ARF, accepted treatment includes IVIG and PEX, and you should have a much easier time getting the proper treatment. Honestly, I wouldn't wait.

 

And, if you just can't get the above done, as tight as money is, I would do everything possible to at least get a single consult with Dr. L. (she's so close, and to go to Dr. B. might actually cost more to drive the distance). It sounds like your dr. is willing to do what is necessary if he has the specialist backing him, so it really might not take more than one.

 

Good luck.

[PowPow]

I just want to second (third, fourth?) the opinion to go to Dr Latimer. She will help you. His age will not be an issue with her, from what I know.

I know it is expensive & you will not get much reimbursement from insurance- but I am going to be frank here- you are not going to get much treatment for your son without a good PANDAS doc.

We are also in VA and I am not exaggerating, Dr L has saved my family. Literally. three kids treated by her & without her, 2 of them wouuld have been institutionalized.

It kills us financially, but you cannot put a price on what she has done for my kids.

[T_Mom]

I am so sorry you are going through this--

We see Dr L, and she does not take our insurance either, I am not sure she takes any insurance--

However, our insurance does reimburse part of our costs.

 

We pay up front and then once the bills are submitted the insurance co. pays some of it--to us. Will you get anything back if you submit to her?

 

You are so close to Dr Latimer, seems like Georgetown would have good cardiologists as well--we saw a doctor there for our d in December, and she was very good.

pm me if you want her name.

[tln21572]

I appreciate everyone's responses. My son's peds is on board to some extent with the PANDAS diagnosis but he would rather have a psychiatric consult before treating. I don't think it is psychiatric though. In my heart I know this has got to be PANDAS (just needed someone to agree with me--thanks). Everyone (family, school, therapists) want to say it is teenage hormones, rebellion, or he was already "predisposed" to tics, OCD, and anger issues and want to "treat" the individual symptoms. When not exhibiting symptoms, my DS is very caring and considerate of others. He would never do some of the things or say some of the things he is doing and saying now. Thank you all again, I just needed someone to confirm what I already knew.

[tln21572]

Actually Dr. K told us of a patient in his 30's. This man left his wife and kids,drove home and wanted to sleep in his parents room! Also, Dr. jenike recently told me he had a few men in their early 20's he suspected had PANDAS. You could try getting Dr. L covered in network from your insurance. Ask your ped, they know how.

Thank you. I hadn't thought of this. I will call ped in the morning.

[Kiera]

Don't know what the sense is of going to the pschy FIRST, unless of course it's a pandas-believing pschy, but those are few and far between. And if the pschy says it's not pandas then the ped will likely go with that!! And the fact that he's always prone to tics, ADHD etc, reconfirms low level pandas all along, not the opposite. Run with your gut!!