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3boysmom

Family Titer Results? Siblings? T & A surgery on Wed.

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We have finally received today our family Titer Test results:

 

- dad: ASO:66 Anti D-Nase:70

 

- mom (me): ASO:201 Anti D-Nase:109

 

- PANDAS son10yr: ASO:960 Anti D-Nase:1360

 

- brother 9yr: ASO:626 Anti D-Nase:756

 

- brother 8yr: ASO:236 Anti D-Nase:448

 

 

 

We are greatly concerned about both brother's numbers being well above the max normal. brother 9yrs was treated for HSP in January, but has not tested positive for strep since and brother 8yrs has not been treated for strep in years. PANDAS son 10 yrs numbers decreased some on the ASO but no change for the Anti D-Nase.

 

 

 

Both brothers are scheduled for Tonsil & Adenoid surgery this Wednesday (Nov. 17). (PANDAS son had T & A removed 3 years ago) We asked the ENT about biopsying the tonsils but he didn’t understand the purpose and doesn’t plan to do so. Should we push for this? What are we asking him to test for? It is the day after tomorrow and I'm feeling like I should be pushing for some testing or byopsing or something before we leave from surgery and wish that I pushed for more.

 

 

We have had the Cunningham tests run for all 3 boys, but the results are not back yet.

 

What are your thoughts or concerns from the above results and what should we do about it? Brother 9yrs doesn’t appear to have any issues at this time; however, brother 8yrs has head & vocal tics, and a few other issues. Do you just wait until they are in crisis to treat? If their numbers are in the 700s does that mean it is enevitable that some type of autoimune illness is in the works?

 

What would you do next? I do not want this illness to claim yet another one of our sweet boys!

 

Feeling overwhelmed...thanks,

3boysmom

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We have finally received today our family Titer Test results:

 

- dad: ASO:66 Anti D-Nase:70

 

- mom (me): ASO:201 Anti D-Nase:109

 

- PANDAS son10yr: ASO:960 Anti D-Nase:1360

 

- brother 9yr: ASO:626 Anti D-Nase:756

 

- brother 8yr: ASO:236 Anti D-Nase:448

 

 

 

We are greatly concerned about both brother's numbers being well above the max normal. brother 9yrs was treated for HSP in January, but has not tested positive for strep since and brother 8yrs has not been treated for strep in years. PANDAS son 10 yrs numbers decreased some on the ASO but no change for the Anti D-Nase.

 

 

 

Both brothers are scheduled for Tonsil & Adenoid surgery this Wednesday (Nov. 17). (PANDAS son had T & A removed 3 years ago) We asked the ENT about biopsying the tonsils but he didn’t understand the purpose and doesn’t plan to do so. Should we push for this? What are we asking him to test for? It is the day after tomorrow and I'm feeling like I should be pushing for some testing or byopsing or something before we leave from surgery and wish that I pushed for more.

 

 

We have had the Cunningham tests run for all 3 boys, but the results are not back yet.

 

What are your thoughts or concerns from the above results and what should we do about it? Brother 9yrs doesn’t appear to have any issues at this time; however, brother 8yrs has head & vocal tics, and a few other issues. Do you just wait until they are in crisis to treat? If their numbers are in the 700s does that mean it is enevitable that some type of autoimune illness is in the works?

 

What would you do next? I do not want this illness to claim yet another one of our sweet boys!

 

Feeling overwhelmed...thanks,

3boysmom

 

In brief..you need to truly investigatet those high numbers...

and for ds8..with those numbers and his condition, i believe you need to try abx sooner than later, and try different abx if the first doesn';t work...he is still young and abx may be all he needs

my pediatrinc who is not panda expert(but freindly)...found my ds7(non-p) to have strep last week..and do to family history and panda brother doc put him on hd abx(more than he would traditional do) for his own well(so he doesn't go pandas) being pan?pits is familiar and to not contaminate rest of panda suseptible family

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I am going to tell you what I would do in your situation, but I am only giving my opinion.

 

Is your PANDAS son currently on antibiotics (if so what antibiotic and dose)? Given his strep titers, I would treat with a full strength course of antibiotics for an extended time, then eventually switch to a prophylactic dose.

 

Are your two sons getting the T&A on antibiotics now? I would not do a T&A without them being on full strength antibiotics for at least a week prior to surgery. Both of their titers are elevated and the risk is that strep is in the tonsils and/or adenoids and will be released during surgery. The goal is to erradicate the strep as much as possible before surgery and to continue on antibiotics after surgery, if only for 7-10 days. My ENT does not use IV antibiotics or a shot of antibiotics during surgery, but many ENT's do and insist it is very necesary. My nephew's ENT gave him a shot of bacillin during surgery.

 

I also, in your situation, do not think it is overkill at all for you and your husband to take a course of antibiotics IF you can get yor physician to go along with it. Your ASO, IMO, is a little elevated and the ADB too. Some people's titers do not rise with strep, so you cannot rule out that your husband doesn't carry strep.

 

I know surgery is so stressful and trying to figure out this very tricky disorder makes it even more stressful. My two older children had a T&A several years ago, but my 7 year old son just had one a few weeks ago.

 

As far as what to culture/biopsy/test in the tonsils and adenoids post surgery, my nephew's ENT did a bacterial smear and also a culture. My ENT gave me such a hard time about it and she never received a letter from a PANDAS dr I have been working with instructing her to test post surgery, that I gave up.

 

Hang in there!

Colleen

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I would be concerned about those levels in the younger boys. And your ASO is also above normal, Mrs!

I think a biopsy is standard when they take the tonsils out. Our ENT did not see the point in doing a culture, he said you WILL find lots of stuff there but it doesn't really mean anything. But at this point, I don't care. I pushed and he agreed to do it, and he also agreed to send half my tonsils to check for Lyme (apparently that is done somewhere else). Who knows in the future what role that information will play. So I would insist. Heck, it's your kids health!

So your other boys have not been sick yet their ASO's are that high? Did you have them thoroughly checked for ear infections, sinus, GI issues, etc? What was the main reason for doing a T&A?

I understand your stress. At least you are already on the right path trying to cut down on the bacterial load. I'd be interesting to see what the numbers are after surgery. Make sure they take antibiotics (hopefully they have started something?), and even though they will be eating soft foods and it will be hard, try to stay away from sugar. Also, whatever they usually give for pain did not work well for my ds (I think there was codeine in it or something that jsut made him jittery), so keep an eye out for that and maybe ask the doctor for an alternative. Ibuprofen works a lot better for us.

Keep us posted!

Edited by mati's mom

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Well we are off to get the T & A surgery for the 2 non PANDAS (as far as we know).

 

 

Colleenrn, Yes our PANDAS son has been on Augmentin XR 1000 twice a day for 8 months. His titers are high but they used to be 1726 and 1920! We went last month to see Dr. L and she said that he needed to add a steroid bust and that he had PANDAS for sure (Already being treated by a "willing to try" pediatrician-as long as we sought out a specialist) and she said that he had sydenhyms corea (spelling?)

 

The brother's are getting their T & A surgery because she asked how we made the connection to strep if our PANDAS son was never positive or sick with strep...we told her that the brother got HSP (autiomune illness from strep) at the very same time, he too was asymtomatic. We then told her about the brother that got head tics at the same time...She said that there is a high sibbling rate and that we should eraticate strep as much as we can and to get their T & A out. ENT said that they were big and needed out anyway.

 

Mati"s mom and fixit, the non PANDAS boys are not on antibiotics right now, but our ENT will do 10 days of antibiotics post surgery. Given the new information that we just got about the high titers....today after surgery I am going to see if I can convince him to give it longer and then try to get a hold of Dr. L (try again!) Thinking about Dr. B...anyone use him?

 

Sorry about all of the bad spelling....no sleep, and very nervous right now!

 

Love to all of you and our beautiful children...please add us to your prayers today!

Edited by 3boysmom

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Good luck and get those non PANDAS boys on abx at least for and after surgery. My daughter's PANDAS didn't hit till after surgery. All 3 PANDAS specialists (including Dr. B--love him) said they can't guarantee it was the cause but don't like that my ENT didn't pre/post treat w/ abx. My son who was positive on strep culture when tested whole fam for daughter's sake was NOT symptomatic for strep or PANDAS, hence deemed the carrier. A few weeks after her PANDAS dx, he was dx'd too. He's have T&A surgery this Friday. Our ENT will biopsy but said he pretty much always finds strep or other bacteria in tonsils. Not sure if he meant for PANDAS, nonPANDAS kids or both??? I plan to ask him.

 

Lots of luck!

Edited by kmom

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Good luck today. I am thinking of you. Try to get the antibiotics in yor boys today (all doese if possible) b/c I would be concerned about them waiting until the next day to begin in case there was any strep released. Let us know how it goes.

Colleen

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Leaving the surgery center . Convinced the ENT to put antibiotics into the IV bags. He also agreen to 2 weeks of antibiotics instead of just 10 days. That buys us a few more days. Dr. Cunningham's test results will be back soon and then we will make more decisions from that point! . Thanks for the prayers, Linda

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Hooray Linda! Way to go. Wish I knew then what I know now. It may not have changed my outcome but I wouldn't feel like I was sucker punched each time the 3 PANDAS specialists said our ENT should have treated prophylactically w/ abx b/f and after T & A. We had finally gotten a neg. strep test 1 wk. prior and she had been on 3 rounds of abx to treat the stubborn strep. Without PANDAS symptoms to that point, I was happy when ENT said, no to abx for surgery and that it wasn't necessary. My son goes in Fri. for surgery. I hope it goes well. We have a different ENT. I told him Dr. B has him on abx already but I want it in IV for surgery b/c not sure I'll get his abx in day of surgery. Prayers are with you! :D

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