Asymptomatic strep...high ASO...family members

[tpotter]

I know you said you don't want to have the tonsils removed, but given the seriousness of your son's issues ("delinquency",) if it was me, I would do everything in my power short of nothing to stop the problem.

 

Every PANDAS/Lyme specialist I know of says to get the tonsils out. Case in point, DS's tonsils looked fine. First ENT said "no way, I won't take them out." We went to another ENT, with an immunologist, peds. neuro and peds psychiatriast all insisting that they come out. ENT agreed. Tonsils were horribly covered in strep (and probably other stuff, too, that they may not have checked for.)

 

Just my opinion.

[cobbiemommy]

I know you said you don't want to have the tonsils removed, but given the seriousness of your son's issues ("delinquency",) if it was me, I would do everything in my power short of nothing to stop the problem.

 

Every PANDAS/Lyme specialist I know of says to get the tonsils out. Case in point, DS's tonsils looked fine. First ENT said "no way, I won't take them out." We went to another ENT, with an immunologist, peds. neuro and peds psychiatriast all insisting that they come out. ENT agreed. Tonsils were horribly covered in strep (and probably other stuff, too, that they may not have checked for.)

 

Just my opinion.

 

Unfortunately, not every PANDAs specialist wants children to get their tonsils out. I want DS's tonsils to come out, but I can't convince his doc to agree (a very well know PANDAs doc).

[Iowadawn]

We have a phone consult with Dr. T coming up in the next week---this certainly will be an object of discussion. Thanks for all the input.

 

We are working to keep the state's hands off our son--ain't looking too good right now. Keep us in your thoughts & prayers. Dawn

[kos_mom]

Dawn,

So sorry about your son. Is there anyway to keep him out of the system for medical reasons? You really don't want him in the state's hands--it is highly unlikely they would do the appropriate medical care, which he clearly needs. Have you contacted a lawyer? It is unfortunate but untreated PANDAS can result in adolescents making very bad choices because in the words Dr. L told me, "They are very scared." She has a PANDAS patient, now in her 20's, whose parents sent her to wilderness camp and a residential treatment center, but she ended up running away and getting pregnant when she was 18 or so. Finally, Dr. L found PANDAS and she is slowly putting her life back together.

Ko's Mom