Going to the ENT today to see if we should yank the tonsils

[airial95]

If he does say we're taking them out, I know to ask for abx before, during and after the surgery.

 

But I'm curious if there's anything in particular I should be asking about as it relates to if we should have it done or not?

 

When I asked Dr. Muphy about it last year, she said the resarch was a bit all over the place (about 50/50) and it's not really a "cure" for PANDAS, so she wouldn't recommend it unless there's another reason for it (chronic infection). Our pediatrician was of the same mid set, but a little bit more open.

 

With this last strep infection a couple of weeks ago, that makes 7-8 postivie cultures in 21 months - our pediatrician sent us off to the ENT thinking it makes sense to get rid of them.

 

We saw the immunologist for the first time last week too. She said that it's likely he will need them out in the future, but she didn't see the need right now, and since there's only a 50/50 shot of it helping the PANDAS, it's something we need to decide after we consult with the ENT.

 

I'm of the midset - if it has even a 50% chance of helping, 50% is better than 0%. Those are decent odds. I know some folks have mentioned that their kids have gotten WORSE after the surgery, but I don't think they had the abx protection that I would insist on in order to agree to it.

 

Thoughts on things I should ask?

[thereishope]

Not sure who would prescribe it for you, but get full strength antibiotics for a month following surgery too. Has your son ever done a short steroid burst before? Was it helpful? If so, consider requesting a steroid burst to be on hand in the event anything does spike post surgery. If you can, have your dd on full strength abx during that time too so the likelyhood of bacteria and particularly strep, will be lower during the healing process.

 

Also, some biopsy tonsils, so think if you want that done. And make sure if they do the tonsils, they'll do the adenoids at the same time. For some if they take one, they automatically take the other. But ocassionally, they don't

[oivay]

I would definitely go for the T&A, and also request steroids post op.

My daughter had a horrendous bout of tics/chorea post op. Also several bouts of strep beforehand.

Her tonsils, while not superficially nasty looking, were full of pus when they were removed.

[oivay]

I would definitely go for the T&A, and also request steroids post op.

My daughter had a horrendous bout of tics/chorea post op. Also several bouts of strep beforehand.

Her tonsils, while not superficially nasty looking, were full of pus when they were removed.

[JuliaFaith]

This may be too late, but I would also swab the nose while asleep and check for MARCONS, coagulase negative staph, and mold growth. We did this and had some more surprises of which some were easily treatable but helped my son heal faster and feel better.

Edited September 26, 2011 by JuliaFaith

[airial95]

Thanks for the advice!

 

I don't know if it's because we have Dr. Murphy in our local area or what, but almost every doctor we have seen has been both knowledgeable about PANDAS (most have been fairly up to date) and understanding of how it's treated.

 

The ENT said that while they don't recommend T&A for PANDAS kids just for treatment of the PANDAS (which is consistent with Dr. Murphy's position), they do recommend it if other issues are present, sleep disturbances, multiple infections, but he also noted that he is quicker to pull T&A on a PANDAS patient than non-PANDAS patients).

 

Prior to the exam, he had already reviewed our son's records and determined it was the best course of action. I asked if we could have the tonsils cultured (per the immunologist) and he said in PANDAS kids it's his standard procedure. He also (voluntarily) mentioned that while right now the general standard is NOT to have surgical and post/op abx, he does for all PANDAS patients as protocol, and will be putting him on Augmentin. Our son is currently on abx (cefdinir), and will still be at the time of the surgery, so he didn't see a need to change it for pre-op.

 

I didn't ask about steroids (saw that post after the appt), we haven't done a course of steroids yet, and we've always responded well to the abx. I'll mention it to our pediatrician, he'd likely be willing to write it if we needed it.

 

Julia - since our surgery isn't until November (I pushed it to just before Thanksgiving break so his time out of school is minimal...don't want to fuel the school refusal if we don't have to!) I'll likely call the dr and ask about the swab. We've had strep in the nasal cavities before, so I think thats a great suggestion!!!

 

Thanks!!!

[thereishope]

I wish you the best of luck! Even though each child is different, my child did well with tonsil removal. He healed rather quickly too. I wish the same for yours.