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IVIG while in remission?


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Ahh, the this is the big question~

 

I don't know if anyone has all the answers, and I suspect you even would get different answers depending on what PANDAS specialist you ask.

 

In any case, I agree with DCmom about keeping him on antibiotics.

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I would like to briefly give my dd9's history.

 

Since age 2, my daughter would get sinus infections every 6-10 weeks with major emotional and oppositional behaviors, unlike her normal self. After waiting 8-10 days, her ped would prescribe antiobitics and all symptoms would diminish. At age 5, she had a major onset of PANDAS (ocd,tics,psychotic behavior) which resolved 90% in about 4-5 months. She was prescribed abxs at the time for sinus infections and then c-diff. A psychologist diagnosed her with pandas 3 months into the episode. A year later, symptoms (not as severe) came back. The psychologist recomended a throat culture for strep which was positive. Again most symptoms resolved after 30 days of abx. Ditto 6 months later with PAN sinusitis, symptoms once again resolve.

 

March 2009: 4th notable episode (becomes chronic and we have been dealing with symptoms ever since). Abxs decrease symptoms but do not diminish.

 

June 2009: had IVIG with Dr. K.

 

January 2010: after some illnesses in the fall, she suddenly has severe heartburn, swallowing issues, choking issues, GI issues and severe fears that would not allow her to leave the house.

 

April 2010: IVIG with Dr. B

 

July 2010: IVIG with Dr. B

 

July 2010: Positive Igenex Lyme test

 

October: Positive Igenex Lyme test, Positive Bartonella test (Specialty lab), Positive Rocky Mountain Spring Fever IGG (Quest). All tick-borne diseases.

 

I recommend getting the Western Blot ($180) done thru Igenex before proceeding with IVIG.

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I would like to briefly give my dd9's history.

 

Since age 2, my daughter would get sinus infections every 6-10 weeks with major emotional and oppositional behaviors, unlike her normal self. After waiting 8-10 days, her ped would prescribe antiobitics and all symptoms would diminish. At age 5, she had a major onset of PANDAS (ocd,tics,psychotic behavior) which resolved 90% in about 4-5 months. She was prescribed abxs at the time for sinus infections and then c-diff. A psychologist diagnosed her with pandas 3 months into the episode. A year later, symptoms (not as severe) came back. The psychologist recomended a throat culture for strep which was positive. Again most symptoms resolved after 30 days of abx. Ditto 6 months later with PAN sinusitis, symptoms once again resolve.

 

March 2009: 4th notable episode (becomes chronic and we have been dealing with symptoms ever since). Abxs decrease symptoms but do not diminish.

 

June 2009: had IVIG with Dr. K.

 

January 2010: after some illnesses in the fall, she suddenly has severe heartburn, swallowing issues, choking issues, GI issues and severe fears that would not allow her to leave the house.

 

April 2010: IVIG with Dr. B

 

July 2010: IVIG with Dr. B

 

July 2010: Positive Igenex Lyme test

 

October: Positive Igenex Lyme test, Positive Bartonella test (Specialty lab), Positive Rocky Mountain Spring Fever IGG (Quest). All tick-borne diseases.

 

I recommend getting the Western Blot ($180) done thru Igenex before proceeding with IVIG.

 

Melinda,

 

I called Igenex yesterday to find out about testing. The Western Blot was $260 and the complete co-infection panel was $660 for a grand total of $920.....does that sound right?

The reason I want the complete co-infection panel is because my dd10 did have a known tick bite in 2006 and although I sent the tick to Igenex and it tested negative for Lyme, I'm not sure they test the ticks themselves for all those co-infections, so it seems prudent. My husband turned pale when I told him the cost!

 

Jill

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I would like to briefly give my dd9's history.

 

Since age 2, my daughter would get sinus infections every 6-10 weeks with major emotional and oppositional behaviors, unlike her normal self. After waiting 8-10 days, her ped would prescribe antiobitics and all symptoms would diminish. At age 5, she had a major onset of PANDAS (ocd,tics,psychotic behavior) which resolved 90% in about 4-5 months. She was prescribed abxs at the time for sinus infections and then c-diff. A psychologist diagnosed her with pandas 3 months into the episode. A year later, symptoms (not as severe) came back. The psychologist recomended a throat culture for strep which was positive. Again most symptoms resolved after 30 days of abx. Ditto 6 months later with PAN sinusitis, symptoms once again resolve.

 

March 2009: 4th notable episode (becomes chronic and we have been dealing with symptoms ever since). Abxs decrease symptoms but do not diminish.

 

June 2009: had IVIG with Dr. K.

 

January 2010: after some illnesses in the fall, she suddenly has severe heartburn, swallowing issues, choking issues, GI issues and severe fears that would not allow her to leave the house.

 

April 2010: IVIG with Dr. B

 

July 2010: IVIG with Dr. B

 

July 2010: Positive Igenex Lyme test

 

October: Positive Igenex Lyme test, Positive Bartonella test (Specialty lab), Positive Rocky Mountain Spring Fever IGG (Quest). All tick-borne diseases.

 

I recommend getting the Western Blot ($180) done thru Igenex before proceeding with IVIG.

 

Melinda,

 

I called Igenex yesterday to find out about testing. The Western Blot was $260 and the complete co-infection panel was $660 for a grand total of $920.....does that sound right?

The reason I want the complete co-infection panel is because my dd10 did have a known tick bite in 2006 and although I sent the tick to Igenex and it tested negative for Lyme, I'm not sure they test the ticks themselves for all those co-infections, so it seems prudent. My husband turned pale when I told him the cost!

 

Jill

Jill-

I did run the Basic Lyme Panel at 260.00. But my daughter's llmd believes the lyme IFA has no value. So he recommends test #188/189 Western Blot Igm/Igg at $100 each (sorry, not $180). I also ran the co-infection panel which came back negative. But Bartonella has now shown with different lab. Uggh!

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Vickie- my daughter was at 90% remission after her first 3 episodes (couple irrational strange fears remained). But since her 4th episode in March 2009, she never went back to baseline. At times, her symptoms increase (usually with illness) but then she goes back to just being...chronic.

 

BUT, her daily intrusive thoughts have finally gone away! Yay!! That was the hardest symptom for me to deal with. Oh, and she no longer has severe rages as well.

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I would like to briefly give my dd9's history.

 

Since age 2, my daughter would get sinus infections every 6-10 weeks with major emotional and oppositional behaviors, unlike her normal self. After waiting 8-10 days, her ped would prescribe antiobitics and all symptoms would diminish. At age 5, she had a major onset of PANDAS (ocd,tics,psychotic behavior) which resolved 90% in about 4-5 months. She was prescribed abxs at the time for sinus infections and then c-diff. A psychologist diagnosed her with pandas 3 months into the episode. A year later, symptoms (not as severe) came back. The psychologist recomended a throat culture for strep which was positive. Again most symptoms resolved after 30 days of abx. Ditto 6 months later with PAN sinusitis, symptoms once again resolve.

 

March 2009: 4th notable episode (becomes chronic and we have been dealing with symptoms ever since). Abxs decrease symptoms but do not diminish.

 

June 2009: had IVIG with Dr. K.

 

January 2010: after some illnesses in the fall, she suddenly has severe heartburn, swallowing issues, choking issues, GI issues and severe fears that would not allow her to leave the house.

 

April 2010: IVIG with Dr. B

 

July 2010: IVIG with Dr. B

 

July 2010: Positive Igenex Lyme test

 

October: Positive Igenex Lyme test, Positive Bartonella test (Specialty lab), Positive Rocky Mountain Spring Fever IGG (Quest). All tick-borne diseases.

 

I recommend getting the Western Blot ($180) done thru Igenex before proceeding with IVIG.

 

Melinda,

 

I called Igenex yesterday to find out about testing. The Western Blot was $260 and the complete co-infection panel was $660 for a grand total of $920.....does that sound right?

The reason I want the complete co-infection panel is because my dd10 did have a known tick bite in 2006 and although I sent the tick to Igenex and it tested negative for Lyme, I'm not sure they test the ticks themselves for all those co-infections, so it seems prudent. My husband turned pale when I told him the cost!

 

Jill

Jill- my daughter did have a tick bite 9 months prior to her first major notable onset of PANDAS (tick bite in June 2006). But like I said before, she's been dealing with issues during illnesses since a very young age. Just not a major onset! I am know wondering if I passed lyme through utero and the tick bite just made things a lot worse. I did have a huge tick embedded in my scalp when I was a child--the doctor said it was probably there for 2-3 weeks and used a match to release it. Yikes! I dunno know--but then why did my daughter (at first) go into remission with abxs.

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If he backslides off antibiotics, he needs to be on antibiotics. I hate telling you something you know you need, yet are nervous your doctor will not give. So, would the question become if a child is dependent on antibiotics to maintain remission, is that a true form of remission? Would that child be a candidate for IVIG? I'd have to think on that more, but I think I'd say if the child cannot fully recover from that exacerbation and after a certain amount of time (unfortunately, time unknown), you cannot lower antibiotics, it's something to look into.

 

I would say (after finding out remission has been for 3 weeks and last onset was in August) that you can still see great strides in remission. That you shouldn't feel you've aleady hit a plateau or road block. I'll give my opinion, but I want others to comment on my opinion...I would say that since your child is 5 years old, got 90% better in 3 weeks, you don't need to rush into IVIG right now, but don't rule it out. Now I don't know if you know this, so forgive me if you do, but you know IVIG is not a cure for the entire disorder, correct?

 

I totally agree when others who say to search out other triggers (such as Lyme) if you decide to do IVIG or feel you hit a road block. Be safe and rule it out.

 

Have you tested all other family members yet for strep?

 

Edit: Perhaps I should add that my child is in remission and even though I know I could lose him again to another strep infection, I am not seeking out IVIG. For me, IVIG for my son would be reserved if he has an exacerbation he cannot recover from.

 

 

Hello, and thank you for all the replies and advice so far. His remission has been only a few weeks.

Last onset of an exacerbation: late August, very rapid escalation over a week resulting in an ER visit on Labor Day, then treatment began.

In full remission three weeks ago after steroid burst, then a few symptoms returned while on no abx for two weeks.

Now, on Augmentin for 10 days, and pretty darn good.

Edited by Vickie
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Hi our daughter is at 99% on abx. I would call her abx dependent however to maintain the remission. All of our pandas docs suggest we wait it out at this point and see if we can lower dose at a later point. I don't think there is a perfect answer, but lean towards doing nothing if he is doing well - except to maintain abx for a longer period.

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We have all been right where you are--trying to decide what is next.

 

Our course of treatment has followed the line of thinking of EAMom and DCMom in that we have used antibiotics full strength long-term, and if I had it to do over again I would not have tried to back it off! If it is working, continue. --that has been our operating mode.

 

If you need something more, you will know it when the time comes.

 

Healing takes time.

Edited by T.Mom
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