Has anyone's child beat PANDAS around adolescents?

[Jengels]

My ds had been diagnosed with PANDAS and i have read several articles about the body being able to fight it off in adolescents and then other articles stating because its so new there isnt any long term research. So i am just curious if anyone was able to witness this with their own child in or soon after adolescents.

 

I would also like to add my gratitude for this site. I thank goodness we are not alone fighting this battle. Reading all of your posts have helped to put this seemingly endless disease into perspective for us and leads us to regain hope.

[MomWithOCDSon]

Welcome, Jengels!

 

Unfortunately, I don't know that beating PANDAS around adolescence is something families here can attest to. At best, it seems a pretty uneven proposition. Some of our kids seem to "beat it" via abx, IVIG, PEX, etc. well before adolescence, but then there are many of us here whose kids are well into their teens and still fighting the good fight. I know there is something to be said for the immune system maturing and perhaps being more able to ward off infections and reactions as a person grows older; I think that's a major reason behind the protocol for, for instance, giving rheumatic fever sufferers abx until they reach 18 or so, and I know that at least prophylactic abx are being considered for some of our PANDAS kids until they reach about that age, as well.

 

I think, maybe more accurately, it might be that PANDAS kids more effectively "beat it" or move past it POST-adolescence, once their bodies have matured for the most part, the hormones are not pumping through at the pubescent velocity any longer, etc. Given how many kids (like mine) seem to have a hugh PANDAS explosion right around puberty, I really think the hormones play a big role. Since they tend to increase inflammation in the body overall, it would make sense they might contribute to the magnitude of the PANDAS exacerbation.

 

I'm sure others will speak up here with their experiences, as well. I know there's a light at the end of the tunnel; I'm just not sure we're all moving toward that light at the same rate of speed, is all!

[Jengels]

Thank you so much for your response Nancy. My son is 10 and was just diagnosed this year, even thought we have had symptoms since 8. We are on the abx right now. It is our second round and i do not see awhole lot of change. He has vocal and motor tics in combination with ocd just as many others have described in their posts. I have learned so much since the diagnosis but feel confused and overwhelmed. I know that i am not alone after reading the posts. I am glad we now know what it is at least now. Thanks for quoting the light at the end of the tunnel. I needed to hear that today. It has been a rough week with school starting. I have 504 meeting on friday with the school. Last year was an absolute nightmare. I am praying for us all.

[EAMom]

What dose and type of antibiotics is he on? How long has he been on them? For us we found mood improved first, then OCD, tics/movements took the longest to go away.

 

Have you checked family members for strep (carriers)?

[MomWithOCDSon]

Thank you so much for your response Nancy. My son is 10 and was just diagnosed this year, even thought we have had symptoms since 8. We are on the abx right now. It is our second round and i do not see awhole lot of change. He has vocal and motor tics in combination with ocd just as many others have described in their posts. I have learned so much since the diagnosis but feel confused and overwhelmed. I know that i am not alone after reading the posts. I am glad we now know what it is at least now. Thanks for quoting the light at the end of the tunnel. I needed to hear that today. It has been a rough week with school starting. I have 504 meeting on friday with the school. Last year was an absolute nightmare. I am praying for us all.

Good luck with your 504 meeting. Our DS had a 504 Plan 3rd through 6th grades, and last year we moved up to an IEP, so I've been through a lot of those meetings myself. I would say try to stay positive, know as specifically as possible what you want to advocate for with regard to your son and hold your ground on the non-negotiable stuff, thank the staff in advance for their patience and understanding, etc. Feel free to PM me if I can be of more help in that regard.

[Jengels]

What dose and type of antibiotics is he on? How long has he been on them? For us we found mood improved first, then OCD, tics/movements took the longest to go away.

 

Have you checked family members for strep (carriers)?

 

 

Hi, he is allergic to penicillin and can't get pills down, so he is on clarithromycin 7ml in morning and again at night. We were told about the penicillin allergy when he broke out in a rash within 24-48hr after taking it for a strep diagnosis when he was around 3 years old. I am thinking of taking him to have an allergy dr. To have him tested on the penicillin allergy just to make sure since that was so long ago. I want the best antibiotics to be avail. to him. Also, yes we have all been tested and they were neg. Thank you for sharing your experience with us. I have noticed a slight improvement in mood, i think. It is hard to tell because there seems to be so much going on at once. It tears my heart up to watch him struggle. I hope we find something to alleviate at least some of the symptoms. Today i watched him almost saw his forearm off on the edge of the table. He just kept doing the repetitive movement up and down until he "got it right" and if i try to talk to him in the middle of one of those he just says"shhhhhh" really loud and then lets me know when he is down and we can talk.

 

We have a great neuro, but i found that dr. Murphy is approx. 2 hours away. So I have been in touch with her office to try to get an appt. I am keeping my fingers crossed. Meanwhile school mtg. In the am. Wish me luck and thank you so much for your response.