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tonsils coming out friday


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redoing...best i can what i originally posted.

 

ds gettign tonsils out friday..

 

i think i know to

 

get clidamycin 5days before and after

get iv abx

 

get them cultured...do they test strep, staph, myco p

ask about condition..large/shriveled..etc

 

i think they give steroid during surgeryy so uvula wont swell

 

dh just startd with co 3 weeks ago ..this is 4the week...

will they cover 2 big proceudures back to back i go for pex...

 

does anyone know far out georgetown is sched.for pex

will doc l remember our converstion...she told receptionist on way out that ds is pexable...

 

should i call to sched pex or should i see if ds remits from pandas with t&a...

i don't want to wait...

ds has slid..though not to our worst point...

he has screeches..hopping every other step...like an elepahnt in house..and the screech or rasberry only adds to the effect...

we had no motor other than times of stress.till last week..and just raspberries..no screehes...

 

i am ready to be done and not wonder hour to hour what will happen to ds!!!!

all these kids need recovery!!!!!!!!!!!!!!!!

 

ps don't know if i put this in original post...

ds had blood draw 3 weeks ago...showed rise in igg for myco p..1.60 to 1.79..

i question margin of error theory..could be..

last week ds had a pretty significant slide backwards...

was it the zith causing a problem ..maybe clostridia..

or could it be myco p emererging per hd zith...

would it act like lyme and once you start treating it herxes and rises

Edited by Fixit
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Yes, have the adenoids removed while their doing the surgery. For most ENT's it's standard to do both, but make sure. I don't know answers about a possible steroid during surgery (my ENT never mentioned it). You are also not suppose to give Ibuprofen prior to surgery. As for insurance, they won't decline just because you have 2 large amounts back to back. Even though you want to limit anxiety, still tell him ahead of time he's having it done. It's alos a trust thing and you don't want to blindside him.

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i erased the lead thread again!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thanks philamom..i needed that...

 

yes i will be double sure atnoids are coming out too

 

i'm a little concerned as ent wanted letter from one of my docs and so far i have nothing and they are scheduling me..maybe miscommnicate between departments

 

doc b on vacation this week ;...i think

i asked doc l's office a couple of weeks ago when i spoke with faith...i think i need to talk to andrea..

 

yes i agree he is 10 1/2 going on 16 ..i just wanted to get through the weekend..he has to go to the consult in morning...i can't tell him tonight...he wont sleep...i know i get more worried at night than during the day...

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redoing...best i can what i originally posted.

 

ds gettign tonsils out friday..

 

i think i know to

 

get clidamycin 5days before and after

get iv abx

 

get them cultured...do they test strep, staph, myco p

ask about condition..large/shriveled..etc

 

i think they give steroid during surgeryy so uvula wont swell

 

dh just startd with co 3 weeks ago ..this is 4the week...

will they cover 2 big proceudures back to back i go for pex...

 

does anyone know far out georgetown is sched.for pex

will doc l remember our converstion...she told receptionist on way out that ds is pexable...

 

should i call to sched pex or should i see if ds remits from pandas with t&a...

i don't want to wait...

ds has slid..though not to our worst point...

he has screeches..hopping every other step...like an elepahnt in house..and the screech or rasberry only adds to the effect...

we had no motor other than times of stress.till last week..and just raspberries..no screehes...

 

i am ready to be done and not wonder hour to hour what will happen to ds!!!!

all these kids need recovery!!!!!!!!!!!!!!!!

 

ps don't know if i put this in original post...

ds had blood draw 3 weeks ago...showed rise in igg for myco p..1.60 to 1.79..

i question margin of error theory..could be..

last week ds had a pretty significant slide backwards...

was it the zith causing a problem ..maybe clostridia..

or could it be myco p emererging per hd zith...

would it act like lyme and once you start treating it herxes and rises

 

I need some brain storming...

the screech is back in full force....tonsils out on friday...

what will happen to his throat with all this...

will doc L prescibe a valium for 5 days or so...

what do i do...they have to come out!!! i don't want to wait..who knows if scream will go...and if i get vanco to work again it takes the full 2 weeks...and then when will they sched the next t&a..i might never happen then

 

Peglem..are you out there....who gives you valuim for our dd??

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Hi Fixit,

 

My non-pandas dd7 had her T&A this past Friday. So far she is doing great.

 

I had taken her to see Dr. K during my dd10's 9 week IVIG follow-up appt, we all drove from Phila. to Chicago (oiye), but I was concerned dd7 may have mild pandas and wanted him to check her out. He thought she was ok clinically, but that her tonsils and adenoids were large and would need to come out eventually. And with trying to keep dd10 infection free, he suggested they come out sooner rather than later. So, I take her to the ENT who did not think her t & a were that large and though he would not recommend it, he respected the expertise of a pandas specialist and would be the technician to remove them.

 

After her surgery, he said they were much larger than he could appreciate in the office and visibly problematic. He sent one to pathology and one to histology; but I think I must have heard him wrong because I thought histology processes the tissue for pathology? Whatever, I'll get a report this week. It will be interesting because my daughters never culture positive for strep, only seriously elevated titers.

 

This part take with a grain of salt, it's only been about 60 hours since she's had them out but...... dd7 is more cooperative, less anxious, quick, quick, quick-processing very quickly with amazing memory and articulation of her thoughts AND she's on pain meds. I didn't expect her to be any different cognitively, she was never bad cognitively at all, but she seems brighter and she's supposed to be doped up. I'll let you know what the pathology report says when I get it.

 

BTW-Removal of large T & A will result in a vocal quality change; the resonance of the oral cavity changes when you remove the large sections of tissue. We keep saying to each other dd7 sounds like Snow White now.

 

Jill

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Hi Fixit,

 

My non-pandas dd7 had her T&A this past Friday. So far she is doing great.

 

I had taken her to see Dr. K during my dd10's 9 week IVIG follow-up appt, we all drove from Phila. to Chicago (oiye), but I was concerned dd7 may have mild pandas and wanted him to check her out. He thought she was ok clinically, but that her tonsils and adenoids were large and would need to come out eventually. And with trying to keep dd10 infection free, he suggested they come out sooner rather than later. So, I take her to the ENT who did not think her t & a were that large and though he would not recommend it, he respected the expertise of a pandas specialist and would be the technician to remove them.

 

After her surgery, he said they were much larger than he could appreciate in the office and visibly problematic. He sent one to pathology and one to histology; but I think I must have heard him wrong because I thought histology processes the tissue for pathology? Whatever, I'll get a report this week. It will be interesting because my daughters never culture positive for strep, only seriously elevated titers.

 

This part take with a grain of salt, it's only been about 60 hours since she's had them out but...... dd7 is more cooperative, less anxious, quick, quick, quick-processing very quickly with amazing memory and articulation of her thoughts AND she's on pain meds. I didn't expect her to be any different cognitively, she was never bad cognitively at all, but she seems brighter and she's supposed to be doped up. I'll let you know what the pathology report says when I get it.

 

BTW-Removal of large T & A will result in a vocal quality change; the resonance of the oral cavity changes when you remove the large sections of tissue. We keep saying to each other dd7 sounds like Snow White now.

 

Jill

 

Thank you ...that is so interesting...my middle is slightly higher pitched...the ent said if he took anyones tonsils out it would be his...

he snores, tosses and turns and kicks and gets frequent ear infections....

he's a little rigid in thinking..and i constantly tell him to articulate

 

i was just thinking today that his need to come out too..but he is skiddish and i think i will need dh to have his done at the same time to help him through...

 

please do post your results..and what a great reply....

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That's great Jill! I'm assuming she's on abx for the procedure? Do keep us posted with the results...was it done with Chop?

 

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it.

 

Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!!

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That's great Jill! I'm assuming she's on abx for the procedure? Do keep us posted with the results...was it done with Chop?

 

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it.

 

Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!!

 

so your daughter was on amox for procedure???

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Sorry, I just saw this. We originally got valium through the pediatrician, but once we found a decent psychiatrist, she took over the valium orescribing. But, if you can't get it rx'd, try valerian root...it has a similar effect, just takes more of it.

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That's great Jill! I'm assuming she's on abx for the procedure? Do keep us posted with the results...was it done with Chop?

 

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it.

 

Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!!

 

so your daughter was on amox for procedure???

 

The ENT didn't mention her being on amox during, but she was given a dose in the hospital and the script was for 10 days following. Remember, going into the procedure, this doc thought he was basically taking out "healthy" T & A to help my other pandas dd, but then once he got in there, he saw what a mess they were...

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