going to see Dr T tomorrow/PEX

[momoffive]

I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be??

 

Thanks!!

[norcalmom]

The pex is immediate, but there is a school of thought that ivig is better long term. There is an old thread called pex vs ivig.

I'd want get the infection under control first. Something to ask the doc- if he is in middle of infection and we do the pex isn't he just going to re-expose himself immediately after?

[matis_mom]

I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be??

 

Thanks!!

I would try to find why it is those titers keep rising. I agree PEX will probably not be effective is there is an active infection (which is, as far as I know, the only reason for titers to keep rising). From what I've heard Dr. T is very thorough and will probably order tests to see where the infection is coming from and find the best way to treat it. Maybe he can even prescribe a steroid taper to get symptoms under control until you are ready for the next step.

[momoffive]

I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be??

 

Thanks!!

I would try to find why it is those titers keep rising. I agree PEX will probably not be effective is there is an active infection (which is, as far as I know, the only reason for titers to keep rising). From what I've heard Dr. T is very thorough and will probably order tests to see where the infection is coming from and find the best way to treat it. Maybe he can even prescribe a steroid taper to get symptoms under control until you are ready for the next step.

 

that is precisely what we need to happen. Thanks for the pointers. I am starting, just starting, to get a basic understanding of what is happening to his body.

[LNN]

I agree - nothing will stick until the infection is wiped out. Azith has never worked as well for my son as Augmentin. Others have exactly the opposite experience. I'd think you may want to switch antibiotics and do detective work, then let the infection diagnosis guide your treatment decision. Where would you get pex?

 

Hang in there. Most have us have been in your shoes. It seems endless right now. But Keep fighting.

[momoffive]

I agree - nothing will stick until the infection is wiped out. Azith has never worked as well for my son as Augmentin. Others have exactly the opposite experience. I'd think you may want to switch antibiotics and do detective work, then let the infection diagnosis guide your treatment decision. Where would you get pex?

 

Hang in there. Most have us have been in your shoes. It seems endless right now. But Keep fighting.

I am so glad I delayed PEX [actually my insurance delayed ] We planned to get it at the apheresis dept. at CHOP.

[nevergiveup]

PEX is swedos and Dr. L's procedure of choice. Immediate reduction of the dangerous antibodies causing inflammation in ur childs brain. If ur child is in the midst of a very serious attack I would not delay this. Treat with abx also. Dr K puts his kids in immediately for ivig, if a slot is available and follows with abx. If chop is offerring up PEX, I can only assume it is extremely necessary, pls no study has yet been done to examine abx vs pex and in what order. PEX should help immediately, (I hear no turning back of the pages, makes me wonder what this concept is actually?) Long term u may need to further examine his immune system and think about ivig. Many feel pex does not handle a chronic autoimmune disease well, ivig is better for the long haul. But some feel optimal treatment for this autoimmune disease would be PEX (immediate reduction in dangerous autoantibodies, followed by ivig (which will prevent the production of bad antibodies). Actually let's dream a little, for the severe cases maybe rituxan followed by three years of ivig, maybe a cure! Just a hunch) Follow ur docs orders for sure. PEX for swedo is the procedure of choice, clearly understand many here on this sight are never offered this procedure. Most are lucky just to get one ivig. Plz keep us posted. ote name='momoffive' date='18 August 2010 - 05:20 PM' timestamp='1282170036' post='80355']

I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be??

 

Thanks!!

[tpotter]

Who is doing it at CHOP? What kind of symptoms does your child have?

[philamom]

Who is doing it at CHOP? What kind of symptoms does your child have?

 

I'm assuming it's Dr Elia.

[tired mom]

Sorry your having such a rough patch. As far as your appt. Dr. T is very knowledgeable and thorough. He is very easy to talk with and he seems to be able to cover all the bases with your first appt. Don't worry,I think he will be able to steer you in the right direction. Please keep us posted.

[momoffive]

Who is doing it at CHOP? What kind of symptoms does your child have?

 

I'm assuming it's Dr Elia.

yes it is Jo Elia.

[momoffive]

Sorry your having such a rough patch. As far as your appt. Dr. T is very knowledgeable and thorough. He is very easy to talk with and he seems to be able to cover all the bases with your first appt. Don't worry,I think he will be able to steer you in the right direction. Please keep us posted.

I will keep u posted. Although I feel that Dr E has been helpful, I have not gotten answers other than his symptoms are quite severe and he needs PEX. I am praying I get a concrete understanding and plan from Dr T. AT the end of this I may still go ahead with PEX, but I need to understand it all and make the best decision possible.

[tpotter]

I would jump at PEX. We found it worked extremely well, and were hoping to get it repeated, but won't be able to now. We tried to get it through Dr. E. last year after my DS was hospitalized at CHOP, and really got nowhere with her. I don't know if things have changed, but it was really disappointing, because we left her with no answers.

[kmom]

My DD first saw Dr. E and she diagnosed her with PANDAS. She's lovely but didn't clue me in enough on the science/medical end and I wanted that. Plus she kept her on Pen VK which pediatrician started her on day before CHOP appt. Things got better for a few days and then drastically worse. A week later emailed and called Dr. T. and he was great! He wanted to see her ASAP--felt Dr. E's dx was spot on but abx not agressive enough. He said DD had a "severe textbook case caught early" but Pen VK wasn't going to cut it. He switched her to Biaxin (broad spectrum till we knew the exact cause) and added ibuprofen to her daily med dose. He was very willing to explain and talk. I loved the fact that he had my DD and rest of our family do blood work...strep titers, Mycoplasma and Lymes. Her history screamed strep issues (3 bouts of persistent strep throat in a row...literally on abx for 10 days and she'd have a positive strep culture within 3 days off abx) but Dr. T. wanted to rule out MycoP and Lymes b/c there are cases where kids can test positive for more than one bacteria or disease. I liked that difinitive approach for a disorder that feels so abstract at times. Ironically she had normal results for strep, mycoP and Lymes but she fit the PANDAS dx perfectly. Her symptoms were severe and came on within days. Scariest thing I've ever seen. It's unexplainable until you've lived it...as all of us here know. Biaxin improved things for her to a point but 7 wks ago Dr. T. switched her to Augmentin and that has been her best abx so far for her. She's about 85-90% better now. The true test will be if she goes to school when it starts. This popped up the last month of school (about 4 wks. after tonsils and adenoids removed) and she missed pretty much the last month of school which is just so unlike her.

 

Bring a pen and paper to take notes @ appt....lots of info! If in the Philly area, another mom and I are starting up a support group! Best of luck!

[dcmom]

I agree with TPotter, and would jump at pex. Both of my daughters had it. While I do not necessarily think it is a cure, it put both daughters in an almost immediate, 100% remission. They have had some minor symptom flares with immune challenges since, but mild and manageable.

 

You will also need Dr T to help with agressive mgmt using abc and steroid bursts.

 

I also, of course agree with thorough testing, and the need to rid of infection.