Tonsillectomy

[Christianmom]

My son has been treated for PANDAS since October of 2010 and for lyme/parasites/co-infections/viruses since January of 2012. The doctor is considering removing my son's tonsils because he is testing positive for strep again. The doctor feels that a low-lying level of strep may have always been with my son because strep seemed under control until we took him off antibiotics (Biaxin) and put him on the Klinghardt "lyme cocktail". The doctor feels that perhaps strep is hiding in my son's tonsils and may be keeping him from fully recovering. We are to talk about a tonsillectomy on Thursday.

 

I know many have had their children's tonsils removed and speak positively of it. I was interested in hearing from anyone who may have wished they had not had their child's tonsils removed. Or from someone who has decided against having their child's tonsils removed.

 

My son's tonsils appear normal. He has never had severe sore throats or any other signs of strep. He was asymptomatic for strep in 2010, though his ASO and Dnase were elevated. For the most part his only symptom has been and is severe OCD. He is about 60% improved over where he was in October of 2010--most improvement coming from lyme/parasite treatment that began in January of 2012.

 

My son's TGF-B1 was elevated when tested about 9 months ago, and Dr. T told us at that time that this meant chronic infection of some type--usually lyme. But perhaps it is showing chronic strep as well.

[philamom]

Christianmom- don't have any advice regarding the tonsillectomy, but was interested in what Dr. T said regarding the TGF-b1. My daughter also tested high when done a year ago. Her result was 5260 (ref range 344-2382). Never received any explanation from her doctors. So glad to hear of your son's improvement!

[kos_mom]

Don't know if this will be helpful. My DS is 22 (had Pandas from age 6 that ended by the time he was 13 and came back in college twice following strep infections) so I am willing to do anything Dr. L recommends given how much of his life has been disrupted. In his case she noted that he had a strong history of symptom improvement with abx so a T and A in her view was a "no brainer." He also does not have co-infections (as far as we know) and all along has been a pretty textbook case of Pandas.

[airial95]

We got another strep infection 6 weeks post-op (within days of stopping the post-op Augmentin) and relapsed. However, the 6 weeks post-op were the 1st time in over 2 years that my son was at 100% recovery. No hyperactivity, no OCD, easy going, mild mannered...my son was back.

 

While I was upset that he got sick again - I would still do the surgery again in a heartbeat.

[EAMom]

 

My son's TGF-B1 was elevated when tested about 9 months ago, and Dr. T told us at that time that this meant chronic infection of some type--usually lyme. But perhaps it is showing chronic strep as well.

 

what is TGF-B1?

[philamom]

 

My son's TGF-B1 was elevated when tested about 9 months ago, and Dr. T told us at that time that this meant chronic infection of some type--usually lyme. But perhaps it is showing chronic strep as well.

 

what is TGF-B1?

Taken from Shoemaker's website

 

 

 

TGF Beta-1 - Transforming Growth Factor Beta-1

Normal Range: <2380 pg/ml

 

TGF Beta-1 is a protein that has important regulatory effects throughout innate immune pathways. This protein helps control the growth and division (proliferation) of cells, the process by which cells mature to carry out specific functions (differentiation), cell movement (motility), and the self-destruction of cells (apoptosis). The TGF Beta-1 protein is found throughout the body and plays a role in development before birth, the formation of blood vessels, the regulation of muscle tissue and body fat development, wound healing, and immune system function (especially regulatory T-cells).

 

TGF Beta-1 can impair T-regulatory cell function, which in turn contributes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). TGF Beta-1 has become important in the exploding incidences of childhood asthma, raising the tantalizing issue of remodeling due to biotoxin exposure. The EPA says that 21% of all new cases of asthma are due to exposure to Water Damaged Buildings. If an individual develops wheezing after exposure to a water damaged building, look for remodeling to be the cause. Remodeling means "something" happens that the airway changes to be more reactive and in need of medications to reduce wheezing. Neurologic, autoimmune and many other systemmic problems also are found with high TGF Beta-1.