Please let me know your thoughts...

[FallingApart]

Hello parents,

 

This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan.

 

DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear.

 

The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments.

 

We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it.

 

When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage.

 

I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated.

 

Thanks!

[JDuffner]

Hello parents,

 

This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan.

 

DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear.

 

The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments.

 

We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it.

 

When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage.

 

I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated.

 

Thanks!

[JDuffner]

You and your family are in my prayers. Ironically I was thinking similar with my Daughter, in the homeopathy paralell with IVIG. I pray IVIG and ABX work!!!!

 

Hang tough!!!

 

 

 

Hello parents,

 

This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan.

 

DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear.

 

The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments.

 

We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it.

 

When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage.

 

I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated.

 

Thanks!

[coco]

Yes! I think the IV abx is DEFINTELY worth a try! As you may know from my prior posts, my dd received high-dose iv abx while she was hospitalized 2 years ago for a URI, and of course we had no idea about pandas...anyway, DRAMATIC difference...all symptoms were GONE. She was "clean" from middle of Feb - end of June. I wish we had put her on prop abx immediately afterwards and we may have avoided the subsequent year and a half of ######. We are talking with out immuno tomorrow about possibly doing it again over the Christmas break. Good Luck!!!

[JDuffner]

Sorry, I thought my post was only going to you not the entire board,! That's ok if anyone learns anything from it. Also sorry for all the typos....Wow! I'm really new at all this! I've omitted much of my daughters behavior stuff you refer, but am all too familiar and expereinced my days of kicking, screaming, head banging against the wall, harming the pets. The hardest part for me these days is seeing the complete fright suddenly in my once fearless highly social optimistic child's eyes.

 

I'm keeping all the little ones in my prayers.

 

...quote name='FallingApart' date='Nov 18 2009, 07:31 PM' post='45499']

Hello parents,

 

This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan.

 

DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear.

 

The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments.

 

We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it.

 

When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage.

 

I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated.

 

Thanks!

[Buster]

Hi FallingApart,

 

Can I check your history here?

 

It sounds like:

• Dec 29, 2008 -- dramatic change in behavior. Exhibit severe SPD and tantrums. Deterioration in motor skills
  
• July 19, 2009 -- 5 day burst of steroids -- good results -- no antibiotics??? no propholaxis??
  
• Aug 1, 2009 -- IVIG round 1 (not sure of gm/kg)
  
• Aug 4, 2009 -- improvement (200mg Azith 2x weekly)
  
• Aug 28, 2009 -- substantial improvement
  
• Sept 5, 2009 -- symptoms back with high OCD
  
• Sept 6, 2009 -- IVIG - 2
  
• Sept 18, 2009 -- 200mg Azith x 5 days
  
• Sept 28, 2009 -- 200 mg azith 2x weekly
  
• Oct 9, 2009 -- relapse -- high OCD
  
• Oct 13, 2009 -- try 30mg/day pred for 7 days, reduce to 24 mg/day pred
  
• Oct 22, 2009 -- PEX in Georgetown
  
• Nov 13, 2009 -- Fever
  
• Now considering IVIG round 3 with possible IV antibiotics
  

It sure looks like you are seeing a fall-off of antibody effect at 4 weeks -- or she is getting reinfected every 4 weeks or (i.e., prophylaxis is not working) or ... something else. Is the history and antibiotic dosing right?

 

Buster

 

Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage.

 

I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated.

 

Thanks!

[FallingApart]

Yes, Buster that is mostly right! You have it down better than me!!! The only thing is that we have been on one form of abx since rither June or July. We moved around a bit until we settled on Azith. We've gone between 2x/week to daily depending on the dose. I haven't quite convinced my ped that this is what we should do even though I have a year long rx for daily Azith.

[Buster]

The only thing is that we have been on one form of abx since rither June or July. We moved around a bit until we settled on Azith. We've gone between 2x/week to daily depending on the dose.

 

It wasn't clear to me from your posts whether you were thinking that the IVIG antibodies had worn off (after 4-6 weeks) or whether the prophylaxis wasn't working and your dd was getting another infection. The timeline is certainly interesting.

 

Did you get tested for PID? Were Igg subclasses all in good shape?

 

I saw that on Nov 13th there was a fever -- do you think that was viral now?

• Dec 29, 2008 -- dramatic change in behavior. Exhibit severe SPD and tantrums. Deterioration in motor skills
  
• June, 2009 -- start prophylaxic antibiotic ...
  
• July 19, 2009 -- 5 day burst of steroids -- good results
  
• Aug 1, 2009 -- IVIG round 1 (not sure of gm/kg)
  
• Aug 4, 2009 -- improvement (startu 200mg Azith 2x weekly)
  
• Aug 28, 2009 -- substantial improvement
  
• Sept 5, 2009 -- symptoms back with high OCD
  
• Sept 6, 2009 -- IVIG - 2
  
• Sept 18, 2009 -- 200mg Azith x 5 days
  
• Sept 28, 2009 -- 200 mg azith 2x weekly
  
• Oct 9, 2009 -- relapse -- high OCD
  
• Oct 13, 2009 -- try 30mg/day pred for 7 days, reduce to 24 mg/day pred -- no visible effect.
  
• Oct 22, 2009 -- PEX in Georgetown
  
• Nov 13, 2009 -- Fever
  
• Now considering IVIG round 3 with possible IV antibiotics
  

Regards,

 

Buster

[FallingApart]

Unfortunately we don't know what we are thinking. The reason we did PEX was that we were thinking the antibodies had worn of. Our ped consulted with Dr. L and the result was that given the short relief we got from IVIG, we would likely need to do it monthly for the foreseeable future if we wanted results. So she suggested PEX as a more permanent/longterm cure.

 

All the sudden I am thinking though, that perhaps DD also needed IVIG with the PEX in order to heal. If whatever virus/bacteria she is afflicted with is still in her body, her memory cells would continue to make the bad antibodies to fight it. Wouldn't it? My only question there is why everyone else's children seemed to get results without an IVIG added to the PEX.

 

I believe our ped thinks that DDs fever was indeed the swine flu. The whole ICU had the swine flu while we were in the ICU so it would make sense that she would get it. If it wasn't the swine flu it was the regular flu.

[Ellen]

I agree with Coco that the IV antibiotics are definitely worth trying. I have been considering IV antibiotics for my son as well because the improvements 7 weeks post PEX are small and not that obvious so far. We have an appointment with Dr. Trifilletti on Saturday, and I had been planning on getting his input on trying IV antibiotics at some point in the future. At one point, we thought my son had lyme and the lyme doc wanted to do IV antibiotics and made a comment about how sometimes oral antibiotics don't get absorbed properly and that the IV can be more direct and effective. We never did try the IV antibiotics because after awhile I was pretty sure it was PANDAS and not lyme, but now I'm thinking about how this might be helpful for either disorder. You mentioned it being the meningitis antibiotic? Do you know which one that is?

 

Ellen

 

Yes! I think the IV abx is DEFINTELY worth a try! As you may know from my prior posts, my dd received high-dose iv abx while she was hospitalized 2 years ago for a URI, and of course we had no idea about pandas...anyway, DRAMATIC difference...all symptoms were GONE. She was "clean" from middle of Feb - end of June. I wish we had put her on prop abx immediately afterwards and we may have avoided the subsequent year and a half of ######. We are talking with out immuno tomorrow about possibly doing it again over the Christmas break. Good Luck!!!

[dcmom]

Ellen- Would you please post about what Dr T says about the IV antibiotics. We are having some issues post pex as well...

 

Eileen

[FallingApart]

Yes, I will definitely post the name of the abx when Ilearn it. THe ped said the name but I had never heard of it before. I don't believe any of us are using it right now. Perhaps it is only available IV. Will let you know what I learn.

 

Eileen how are things for you?

 

And Ellen, yes PLEASE do tell us how that appt goes. I feel your statement mirrors our situation as well and I would love to know what Dr T says. Our improvements are only around drawing and sleep. And they are very minor.

[Ellen]

For sure. I am curious to hear what he will say about this, and my thinking is if he feels it could be really helpful, maybe we would want to try it even before IVIG.

 

Ellen

 

Ellen- Would you please post about what Dr T says about the IV antibiotics. We are having some issues post pex as well...

 

Eileen

[faith]

fallingapart,

was the abx Flagyl or Levaquin? ... just guessing, I know I had that myself in iv once when I had the c-diff about 5 years ago.

 

 

Just to understand, is it that iv abx gets in the system quicker? and stays in longer? not sure what the premise of this is as opposed to oral. would this be for those who are really prone to constant infection?

 

Faith

[Buster]

The reason we did PEX was that we were thinking the antibodies had worn of. Our ped consulted with Dr. L and the result was that given the short relief we got from IVIG, we would likely need to do it monthly for the foreseeable future if we wanted results. So she suggested PEX as a more permanent/longterm cure.

I guess the question is whether it was plasmapheresis or plasma exchange. If it was plasma exchange (i.e., IVIG and Plasmapheresis) then you would have gotten rid of most of the "bad" antibodies and added in the "good" antibodies. I learned about the difference here from mom_md, but it wasn't clear to me from your description which one you had.

 

All the sudden I am thinking though, that perhaps DD also needed IVIG with the PEX in order to heal.

It did seem from your history that your dd did well when within 4 weeks of IVIG. This could mean that the anti-inflammatory propoerty of IVIG was helping, that the antibodies from IVIG were helping, or she was re-exposed to an antigen at around the 4 week mark. Did you check siblings for GABHS?

 

If whatever virus/bacteria she is afflicted with is still in her body, her memory cells would continue to make the bad antibodies to fight it. Wouldn't it?

Yes, PEX won't help that.

My only question there is why everyone else's children seemed to get results without an IVIG added to the PEX.

I've been seeing them stay on high levels of prophylactic antibiotics as preventative to getting another sentinal event. They use PEX to get rid of the antibodies, then hold off antibodies by preventing re-exposure.

 

Buster