I think my child has pans/pandas

[olinhll]

My child a year ago was a normal child of 11.  He was smart too could program at an adult level.  He was maybe a little bit autistic though.  He didn't understand social dynamics.  But he still functioned at high level.  Then maybe 1/2 year ago he started getting mad more and cussing.  He would cuss so much we would talk about him having tourette syndrome.  But it was tolerable and we were hoping he would just grow out of it.  But then 1/2 year ago he had a psychotic break. Where a voice in his head that he thought was a brain chip forced him to hit himself.  We took him to the emergency room where they immediately put a hold on him.  They put him in a ward and put him on zyprexa.  They gave him back to us but the zyprexa didn't work and he was worse then ever.  Becoming extremely sexual, kind of violent, breaking stuff all the time(doors, windows)and still hit himself.  eventually he ended up on another ward this time we put him in.  There they gave him cloadine, lithium and respirdone after all the other antipsychotics didn't work.  Now he is not able to program or do anything functional, even writing legibly is hard. He is obsessed with sex, exercise and thinks eating is bad.   He has ED from the meds too.  We were slowly tapering him off the meds.  And it was working out but now he is having a break again so we put him on the meds again.  He isn't really functional on them but he isn't as much of a liability if they work.  He isn't as strong on them so he is easier to manage that way at least.  I don't think he will be able to live on these meds forever.  He is too miserable. 

Anyways I need to know how to get a doctor or psychiatrist to prescribe him antibiotics.  All the ones we talk too refuse. More testing and experts needed.  And everything takes too long.  We honestly have only known of the pans thing for a couple weeks.  But from what I read he fits the description.   And any other things I can try besides ibuprofen and antibiotics.  Any advice is appreciated.

[Chemar]

Hi olinhil

So sorry to hear of the hard path that has brought you here.

As a mother whose son was harmed by the neuro medications prescribed, I have deep empathy. My son does have genetic Tourette Syndrome (dad & grandpa and ? before him) and we do also suspect a possible PANS component. Zyprexa was the last med he was prescribed,  and it nearly killed him. None of the meds helped more than they harmed. We had a long and uphill withdrawal, but thankfully things did get better thanks to all I learned from Latitudes, and the guidance of a great team of integrative and holistic physicians and  treatments.

As your son's onset may have been from a different vector than mine, I can't make specific suggestions other than to encourage you to be persistent in your quest to help your child. My son is now in his mid 30s and no-one would guess the struggles he went through from those preteen/teen years. So remember there is much reason for hope!

I do hope those with more experience with PANS/PANDAS may see your post and respond

Not sure where you are located but maybe this will help you locate a PANS physician? https://www.pandasppn.org/practitioners/

 

 

 

[MaryAW]

I know you posted a while ago. Did you find a doctor?

Sounds like very bad OCD. Try ibuprofen, if you haven't. We used a lot of that during the early days!

Go to Pandas Physicians Network: pandasppn.org it has a list of doctors sorted by state: 

https://www.pandasppn.org/practitioners/

A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he's fighting.

Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon.