Re: Tonsillectomy for Pandas

February 19, 2008

We tried the Actos. I got a ton of flack from alot of people and Dr's

for using it so I stopped it after a couple of months. I do have to

say his tics were worse after beginning it. I have read it can make

things worse before they get better. I guess te biggest concern was

the long term side effects being worse then the benefits from the

drug. I just gave up after getting slammed by so many people about the

risks I was putting him through. The DAN thought it was the best thing

for him though. Since we have been off it he tics have begun waning

again. I did go to see Dr. in Florida for the PANDAS. She

does alot of research. She said if behaviors get too bad try him on

guanfacine for tics and adhd.

Michele

>Hiall,Sorry it has been a while

> since I first posted, but I wasprettybusy with my son. His surgery

> went well. The surgeon said thathistonsils and adenoids were

> deplorable. The were both covered in pus.He did not know which one was

> worse. He also said " This kid hasbeensick a long time. " We were on 4

> courses of antibiotics before thesurgery. I cansay that the strongest

> antibiotic which was theClindamycin did noteven take the strep away,

> but his behavior was muchbetter whiletaking it. (more compliant, less

> irritable and moody) Thismakes mebeg the question. Does he have more

> strep in his body that Ijustdon't know about. I will be monitoring the

> ASo titer. They wereslightly elevated in September (6wks after his

> August bout withstrep).We see the infectious disease doctor next

> month. She said if wedon'tget the results we want from the SSRI we can

> try Actos. Iwouldrather try Actos than do the Respiridol that the

> Psychiatristwants todo. My ultimate goal is IVIG. My insurance will

> coverit.Thanks for all the Support,Sue> Sue,> > I guess by now your

> son hashad the surgery. I hope he's recoveringwell.> I second the

> person whosaid it took every minute of the recovery time> prescribed

> torecover... it's worth it to get up in the middle ofthe night>

> everynight until then to give those pain killers!> > One of our boys

> (nowage 12) has still had definite strep relatedsymptoms> (years

> aftersurgery)... he had his tonsils and adenoids removedwhen he was>

> about4. At the time, nobody thought to check him for strep. Hehad

> the>surgery because of severe sleep apnea that made us fear for his

> life.>> I was hoping that his surgery would improve some of

> his " behaviors " and it> did... a little. I think that was mostly due to

> thefact that he was> getting a lovely night of sleep instead of

> thehorrific strugglingsleep he> had been experiencing.> > When he

> startedwith Dr. G (at age 6), Dr. G started monitoring his ASO> levels

> andthey were high, but not at through the roof high levels.He got> to

> apoint in grade 2 (age 7) where he was completely spaced

> outinclass...> couldn't follow the teacher at all and was just

> marchingto his ownbeat.> It was so severe that I voluntarily pulled

> him out ofschool (he wasin a> gifted class and I was worried because

> he wasdistracting the class-and the> teacher was 9 months pregnant and

> ather wits' end). We called Dr.G and he> immediately put my son

> onErythromycin. The Erythromycin upset hisstomach,> but even as he

> waslying in bed with miserable nausea, we could seethat he> was much

> morefocused again. Dr. G switched him to ERYPed (a morestomach>

> friendlyform of Erythromycin) and he was able to go back to schoolthe

> last>day his teacher taught before taking maternity leave. She called

> meinthe> middle of the day to say that his improvement was

> miraculous...he was> totally back on track.> > So, here's my point.

> The surgery forus was probably treating a symptom> rather than the

> cause of my son'sstrep, which is a dysfunctional immune> system. He

> just doesn't havethe ability to fight strep well on hisown.> Then

> again, at the time itwas all we knew to do. I often wonder ifhe had>

> underlying strepinfection for years following the surgery.> > I don't

> know that youhad much of a choice about having the surgery> either...

> it soundslike you had your back up against the wall.> > Regarding how

> my son(now 12) is now, he is still quite OCD so thesurgery> didn't

> curethat. He is on SSRIs and they do benefit him.> > I guess it might

> behelpful for you to see you son post op for at least> couple of

> weeksafter he recovers so that you'll know where hestarted (have>

> abaseline) emotionally. I'm sure you're anxious to see if

> theSSRIshelp> (I know I was), but really in the grand scheme of

> things, acoupleof weeks> is not all that long, and it might give you a

> betteridea of whatthe SSRIs> were doing for him.> > Two more thoughts.

> If itwere me, I would ask the Drs to monitor hisASO to> see if his

> titersgo down. Strep can reside in places in the body other> than

> tonsils.My second thought is just to remind you that in thefuture,>

> since yourson's tonsils are gone, you need to remember to remindDrs.

> Of> thatwhen he's sick (they're looking for swollen tonsils that

> aren'tthere,>which can trick them).> > I hope that helps. > >

> Caroline> > > > > > > > > [Non-text portions of this message have been

> removed]>

> >

February 20, 2008

>Hiall,Sorry it has been a while

> > since I first posted, but I wasprettybusy with my son. His surgery

> > went well. The surgeon said thathistonsils and adenoids were

> > deplorable. The were both covered in pus.He did not know which one was

> > worse. He also said " This kid hasbeensick a long time. " We were on 4

> > courses of antibiotics before thesurgery. I cansay that the strongest

> > antibiotic which was theClindamycin did noteven take the strep away,

> > but his behavior was muchbetter whiletaking it. (more compliant, less

> > irritable and moody) Thismakes mebeg the question. Does he have more

> > strep in his body that Ijustdon't know about. I will be monitoring the

> > ASo titer. They wereslightly elevated in September (6wks after his

> > August bout withstrep).We see the infectious disease doctor next

> > month. She said if wedon'tget the results we want from the SSRI we can

> > try Actos. Iwouldrather try Actos than do the Respiridol that the

> > Psychiatristwants todo. My ultimate goal is IVIG. My insurance will

> > coverit.Thanks for all the Support,Sue> Sue,> > I guess by now your

> > son hashad the surgery. I hope he's recoveringwell.> I second the

> > person whosaid it took every minute of the recovery time> prescribed

> > torecover... it's worth it to get up in the middle ofthe night>

> > everynight until then to give those pain killers!> > One of our boys

> > (nowage 12) has still had definite strep relatedsymptoms> (years

> > aftersurgery)... he had his tonsils and adenoids removedwhen he was>

> > about4. At the time, nobody thought to check him for strep. Hehad

> > the>surgery because of severe sleep apnea that made us fear for his

> > life.>> I was hoping that his surgery would improve some of

> > his " behaviors " and it> did... a little. I think that was mostly due to

> > thefact that he was> getting a lovely night of sleep instead of

> > thehorrific strugglingsleep he> had been experiencing.> > When he

> > startedwith Dr. G (at age 6), Dr. G started monitoring his ASO> levels

> > andthey were high, but not at through the roof high levels.He got> to

> > apoint in grade 2 (age 7) where he was completely spaced

> > outinclass...> couldn't follow the teacher at all and was just

> > marchingto his ownbeat.> It was so severe that I voluntarily pulled

> > him out ofschool (he wasin a> gifted class and I was worried because

> > he wasdistracting the class-and the> teacher was 9 months pregnant and

> > ather wits' end). We called Dr.G and he> immediately put my son

> > onErythromycin. The Erythromycin upset hisstomach,> but even as he

> > waslying in bed with miserable nausea, we could seethat he> was much

> > morefocused again. Dr. G switched him to ERYPed (a morestomach>

> > friendlyform of Erythromycin) and he was able to go back to schoolthe

> > last>day his teacher taught before taking maternity leave. She called

> > meinthe> middle of the day to say that his improvement was

> > miraculous...he was> totally back on track.> > So, here's my point.

> > The surgery forus was probably treating a symptom> rather than the

> > cause of my son'sstrep, which is a dysfunctional immune> system. He

> > just doesn't havethe ability to fight strep well on hisown.> Then

> > again, at the time itwas all we knew to do. I often wonder ifhe had>

> > underlying strepinfection for years following the surgery.> > I don't

> > know that youhad much of a choice about having the surgery> either...

> > it soundslike you had your back up against the wall.> > Regarding how

> > my son(now 12) is now, he is still quite OCD so thesurgery> didn't

> > curethat. He is on SSRIs and they do benefit him.> > I guess it might

> > behelpful for you to see you son post op for at least> couple of

> > weeksafter he recovers so that you'll know where hestarted (have>

> > abaseline) emotionally. I'm sure you're anxious to see if

> > theSSRIshelp> (I know I was), but really in the grand scheme of

> > things, acoupleof weeks> is not all that long, and it might give you a

> > betteridea of whatthe SSRIs> were doing for him.> > Two more thoughts.

> > If itwere me, I would ask the Drs to monitor hisASO to> see if his

> > titersgo down. Strep can reside in places in the body other> than

> > tonsils.My second thought is just to remind you that in thefuture,>

> > since yourson's tonsils are gone, you need to remember to remindDrs.

> > Of> thatwhen he's sick (they're looking for swollen tonsils that

> > aren'tthere,>which can trick them).> > I hope that helps. > >

> > Caroline> > > > > > > > > [Non-text portions of this message have been

> > removed]>

> > >

February 20, 2008

Hi, Sue.

My son couldn't tolerate clonidine either. We would give it to him and less

than an hour later, he could barely stand, let alone speak. Guanfacine was much

better for him, so you may want to give it a try with your doctor's OK.

Good luck,

Robyn

swriter20022002 <swriter20022002@...> wrote: