T&A question

[FallingApart]

Sorry if this has been asked a bunch before.

 

Do your PANDAS/Lyme children still have their T&A? Our Pandas/Lyme DD has never had a positive strep culture and our ped doesn't think that removing her tonsils would do anything since she has never had an infection. But after looking through some of these posts, I can't tell if this is correct thinking or not.

 

I know that it seems that the kids are 50/50 on whether they get strep or not, but what is the status of their T&A?

 

Thanks!!

[JAG10]

Sorry if this has been asked a bunch before.

 

Do your PANDAS/Lyme children still have their T&A? Our Pandas/Lyme DD has never had a positive strep culture and our ped doesn't think that removing her tonsils would do anything since she has never had an infection. But after looking through some of these posts, I can't tell if this is correct thinking or not.

 

I know that it seems that the kids are 50/50 on whether they get strep or not, but what is the status of their T&A?

 

Thanks!!

 

Based on my younger dd's experience and several posts on this topic, sometimes the docs don't realize how bad the tonsils are until post-surgery. After my older dd11's IVIG, we went back for a check-up with Dr. K about 9 weeks later and took dd7 with us for a once over. Dr. K recommended having dd7's tonsils removed based on physical exam (they were large, but not "kissing"), mild symptoms and hx of very elevated aso/dnase b titers Neither of my girls ever swabbed/cultured positive for strep ever, but must have had asymptomatic infections since both had markedly elevated ASO and anti-DNAse B titers. I found a local ENT who agreed to remove her tonsils based only on Dr. K's recommendation; said he would be the "technician" for surgery, but he could not recommend removal based on what he observed or her history.

 

After the surgery was completed, he told me her tonsils were a mess and clearly indicated chronic infection he was not able to appreciate during pre-operative physical examination. Sometimes, it isn't so easy to find a cooperative ENT, but maybe your pandas/lyme doc can make the recommendation since the pediatrician will not.

[philamom]

Sorry if this has been asked a bunch before.

 

Do your PANDAS/Lyme children still have their T&A? Our Pandas/Lyme DD has never had a positive strep culture and our ped doesn't think that removing her tonsils would do anything since she has never had an infection. But after looking through some of these posts, I can't tell if this is correct thinking or not.

 

I know that it seems that the kids are 50/50 on whether they get strep or not, but what is the status of their T&A?

 

Thanks!!

 

Based on my younger dd's experience and several posts on this topic, sometimes the docs don't realize how bad the tonsils are until post-surgery. After my older dd11's IVIG, we went back for a check-up with Dr. K about 9 weeks later and took dd7 with us for a once over. Dr. K recommended having dd7's tonsils removed based on physical exam (they were large, but not "kissing"), mild symptoms and hx of very elevated aso/dnase b titers Neither of my girls ever swabbed/cultured positive for strep ever, but must have had asymptomatic infections since both had markedly elevated ASO and anti-DNAse B titers. I found a local ENT who agreed to remove her tonsils based only on Dr. K's recommendation; said he would be the "technician" for surgery, but he could not recommend removal based on what he observed or her history.

 

After the surgery was completed, he told me her tonsils were a mess and clearly indicated chronic infection he was not able to appreciate during pre-operative physical examination. Sometimes, it isn't so easy to find a cooperative ENT, but maybe your pandas/lyme doc can make the recommendation since the pediatrician will not.

Did you have your older daughter's tonsils removed also?

[JAG10]

She had hers out when she was 5; she had kissing tonsils and snored BADLY!!!

 

I still don't know how I feel about that....if she had them in until a little older, would she have been "symptomatic" of strep and would I have caught on to all this years earlier? Who knows! That was 2004 and I still think the kiddos who developed pandas at very young ages would not have easily been picked up then. So we are making progress when we see all these new (and some not so new) posters of young kids.

 

God bless us all; really, no easy fete.

[philamom]

My daughter never had "symptomatic strep", even during the (only) two times she tested positive by a swab culture. Our ENT also said he would remove her tonsils with a letter of recommendation for PANDAS. I often wonder if I should still consider it. She's almost 10, and I know it becomes more difficult to tolerate the procedure with age...right?

Edited April 28, 2011 by philamom

[ShaesMom]

We have an appt scheduled with an ENT in June. Our dd's ASO titers have never dropped below 524 so we as parents are definitely considering surgery. The LLMD we saw Tuesday recommended removing her tonsils. We'll have to see what the ENT says.

[JAG10]

My daughter never had "symptomatic strep", even during the (only) two times she tested positive by a swab culture. Our ENT also said he would remove her tonsils with a letter of recommendation for PANDAS. I often wonder if I should still consider it. She's almost 10, and I know it becomes more difficult to tolerate the procedure with age...right?

 

Melinda,

 

I had mine removed when I was 21 (for semi-chronic bronchitis) Dr. T seemed to think it was significant I had them removed to late, but i don't ever remember being diagnosed with strep.

The recovery is rougher; like 3 full weeks and 20lbs

[lismom]

My son 13, never had positive throat cultures. Dr. believes the strep got in through a tooth extraction. His titers are still elevated after 2 years but LLMD says the Lyme has not let this fully resolve. The immune system is over taxed and over used because of Lyme and co-infections. Was told its not unusual to have the elevated titers because the Lyme triggered the autoimmune response. Once all the infections slowly wane, and with most of our kids that quite a few infections, the immune system will slowly recover. I personaly wouldn't take my sons tonsils out unless he had cultured positive. His strep was hiding elsewhere.

[JuliaFaith]

T&A was definitely not something that I was going to do for my ds13 before. He had never had strep or anything else that I knew of. His throat was sore for the last year but that was it. Our very first visit with a Natureopathic doctor, she told me that all PANDAS kids should have tonsils removed! Shocking coming from an ND. It took me another 5 months and getting past the 1 year of not well mark, to decide to go ahead with it.

 

DS just had his t&A 3 weeks ago. The surgeon said the tonsils were enlarged and looked like they had been thru several infections. Apparently, his adnoids were enflamed as well. While son was under my ND had them do a deep nasal culture and that came back positive for MARCONS (super staph bug) which he is currently being treated.

 

Since he has not been well for over a year, it was a tough recouperation just from the mental standpoint. It took about 2 1/2 weeks before he was eating the usual and not complaining about the pain. In the long run I think it is good that we did it. Read somewhere on-line that when we hit adult-hood they are less useful cannot remember the reasons.

 

Hope this helps.

[FallingApart]

This is very interesing. I believe our LLMD said that DDs tonsils were enlarged. I will be sure and ask her the next time we see her.

 

For those of you who have gone ahead with the removal, have you seen an improvement in PANDAS symptoms? I believe I saw that one of you said you did, but I am curious to know if others have as well.

 

DD has never really come back to herself since any of this has started. She still never seems actually sick, but is always off. We have been having more "good" days recently than ever before, but the "bad" days are never far behind.

[ptcgirl]

My dd11 developed pandas at age 7. She had a sudden onset of OCD after 2 strep infections. Those were the only strep that she ever had confirmed. After she was out of crisis mode with the initial onset she still had OCD symptoms for a year and a half. We had her t and a removed because they were a bit large and we were scared to death that she would get strep again. Immediately after removing the t and a she no longer had any OCD at all. She took no meds, no antibiotics, no SSRIs and was 100% back for 9 months. Then OCD and tics came back. Dr b and dr j think itis still pandas plus lyme with coinfections so that is what we are treating now. I wish we could have those 9 months back and IMO having the toncills out was a tremendous gift for those 9 months. Now if we can just get back there..... It is haunting at the same time as hopeful. All of this leaves me just wondering what the heck is going on with my kid. Does she REALLY have PANDAS? Can she possibly have LYME? Is this just some type of OCD that will never really go away forever? I know you know what I mean. It is the not knowing that is truly hard.