More IVIG questions

[peglem]

What I'd like to know is:

 

Your child's age at IVIG?

 

Was your child in exacerbation at the time of IVIG?

 

What was the dose?

 

Did your child have immune deficiencies at the time?

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation?

 

 

I know this info is probably scattered throughout the forum, but now that we're looking at getting the proper dosage, I'd sure like to get an idea of what we're in for.

[Buster]

Your child's age at IVIG?: 9

Was your child in exacerbation at the time of IVIG? yes

What was the dose? 2g/kg spread over 2 days (i.e., 1g/kg/day)

Did your child have immune deficiencies at the time? not exactly. PREVNAR challenge failure, but we didn't revaccinate to test.

Post IVIG experiences?

week1: headache 2 days, fever 1.5 days. Significant irritability, anger, contamination fears, vocal tic, motor tremor

week2: very intense "cycling" of symptoms. Bursts of irritation. Intense but short lived. Lashing out, eating issues, handwriting issues.

week 3: Sudden interest in school. Social anxiety falls off dramatically. Handwriting improves. Margins improve. New teacher indicates dd9 is "somewhat defiant at school"

week 4: Lots of itching. Dramatic fall off in symptoms. Measurement rituals disappear. Some social concerns - hair, glasses, clothes

week 5: calm, quiet -- some social aniety when at large family party

week 6: more calm -- no rages for over a week. Penmanship dramatically better

week 7: calm -- willingly does homework -- is remembering math facts, spelling is eratic. Very playful. Margins are perfect.

week 8: calm, happy -- able to brush teeth alone -- first time in 2 years

week 9:calm happy -- enjoys schools, wants to play trumpet, slight handwriting issues still, very slight verbal tic

week 10: Playful, teacher and other commenting on change

week 11: happy

...

until week 27: fever, measurement ritual comes back, food questioning returns, ...

... continued escalation at roughly same baseline as pre-IVIG...

until now

Was it initially worse or as bad as exacerbation?

We were in a medium exacerbation at the time, but I'd say it got worse. It was a weird form though. Days were full of very intense symptoms but each event was short lived. Prior events within a mutli-week exacerbation would go on for hours, this was more like 20 min but lots of different symptoms. The first week we worried we had made her worse. It was seriously like looking at her on fast reverse.

 

I want to stress to you that everyone has slightly different results. I remember hearing about the "turning back pages" and it gave me hope in that first intense week. As a comment, really encourage alignment with your spouse. It helped me that my dw was confident it would get better. First week was tough for us.

 

Buster

Edited April 27, 2010 by Buster

[peglem]

Thank you. I really appreciate your detailed response. We've just been through 3 terrific months and she's slipping back. I'm scared, but know we can get through it. Did you and your wife have any idea it would be like that when you did it?

[kimballot]

Peglem and buster - thanks for the post -

 

Buster - I was not clear what you meant by "margins" - are you talking about the margins on her papers when she writes?

 

Also - could you explain a bit more about week 27 until now? Are you saying that she started backsliding in week 27 and she is now at pre-IVIG levels? Also, how many weeks post IVIG are you now?

 

I don't mean to interrogate - I am trying to get a picture of this.

 

Thanks so much!

 

week 11: happy

...

until week 27: fever, measurement ritual comes back, food questioning returns, ...

... continued escalation at roughly same baseline as pre-IVIG...

until now

[/indent]

 

Buster

[melanie]

Hi Peg

 

 

 

Your child's age at IVIG? 15 has had 6 since then

 

Was your child in exacerbation at the time of IVIG? verbal tics,OCD,anger,

 

What was the dose? 1g 5hr in home infusion

 

Did your child have immune deficiencies at the time? yes

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation 1st waas typical textbook,headache tired anxiety,2nd and 3rd not great but he got much better week 1 1/2 then not good switched to gammunex #4 &5 much better .No side effects (off risperradal) happy lots of anxiety less verbal tics NO MORE MOTOR TICS!!!!!! after IV #2 still none

 

 

Keep me posted

 

Melanie

[mom md]

IVIG-age 8

Mild exacerbation at time

Dose-1gm/kg for 2 days (total 2gm/kg)

Immune deficiency- not classified as CVID but failed vaccines, severe allergies

Post IVIG-

AFter first IVIG in Jan 2010-exacerbation for 7-10 days then almost no symptoms for one month (and very calm and patient). At week five return of some ADD type behavior with poor impulse control

Second IVIG 3/10- no real exacerbation but sporadic symptoms seen, now week 5 post tx and still mild symptoms present but episodic (seem to see only when tired or excited (toe walking, wrist rolls, mood swings). Overall we are MUCH better than a year ago.

 

Neurologist and immunologist here are concerned this may be more of an autoimmune syndrome than a strep one and are considering IVIG every 3-6 months to keep him at baseline. We are waiting for next flare to decide.

[Fixit]

Hi Peg

 

 

 

Your child's age at IVIG? 15 has had 6 since then

 

Was your child in exacerbation at the time of IVIG? verbal tics,OCD,anger,

 

What was the dose? 1g 5hr in home infusion

 

Did your child have immune deficiencies at the time? yes

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation 1st waas typical textbook,headache tired anxiety,2nd and 3rd not great but he got much better week 1 1/2 then not good switched to gammunex #4 &5 much better .No side effects (off risperradal) happy lots of anxiety less verbal tics NO MORE MOTOR TICS!!!!!! after IV #2 still none

 

 

Keep me posted

 

Melanie

 

so it took 5-6 weeks for the motor tics to go away....and after the second ivig there are still some lingering vocals.???

how bad or not bad are they?

and how long has it been since your second ivig??

 

Thanks Melane i may have asked before but i can't keep it all straigth

[peglem]

Hi Peg

 

 

 

Your child's age at IVIG? 15 has had 6 since then

 

Was your child in exacerbation at the time of IVIG? verbal tics,OCD,anger,

 

What was the dose? 1g 5hr in home infusion

 

Did your child have immune deficiencies at the time? yes

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation 1st waas typical textbook,headache tired anxiety,2nd and 3rd not great but he got much better week 1 1/2 then not good switched to gammunex #4 &5 much better .No side effects (off risperradal) happy lots of anxiety less verbal tics NO MORE MOTOR TICS!!!!!! after IV #2 still none

 

 

Keep me posted

 

Melanie

Melanie, was that 1g/kg, or 1g total? How much does your son weigh?

[melanie]

Hi Peg

 

 

 

Your child's age at IVIG? 15 has had 6 since then

 

Was your child in exacerbation at the time of IVIG? verbal tics,OCD,anger,

 

What was the dose? 1g 5hr in home infusion

 

Did your child have immune deficiencies at the time? yes

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation 1st waas typical textbook,headache tired anxiety,2nd and 3rd not great but he got much better week 1 1/2 then not good switched to gammunex #4 &5 much better .No side effects (off risperradal) happy lots of anxiety less verbal tics NO MORE MOTOR TICS!!!!!! after IV #2 still none

 

 

Keep me posted

 

Melanie

 

so it took 5-6 weeks for the motor tics to go away....and after the second ivig there are still some lingering vocals.???

how bad or not bad are they?

and how long has it been since your second ivig??

 

Thanks Melane i may have asked before but i can't keep it all straigth

 

 

Hi Motor tics gone completely

 

He had foot twisting & saluteing GOne but the verbal and the anxiety still present Better but still after 5 IVs still.On a 1-10 scale starting at 10 hes down to about a 4 so thats good.Still has alot of issues anger & anxiety .

 

Melanie

[Buster]

Buster - I was not clear what you meant by "margins" - are you talking about the margins on her papers when she writes?

Yes, my daughter in the worst of her exacerbations (pre-IVIG) had left margin drift issues. She'd start her papers in the center of the page and seemed unable to ever get to the left margin. It was really odd. Then each line would be indented to the right.

 

Also - could you explain a bit more about week 27 until now? Are you saying that she started backsliding in week 27 and she is now at pre-IVIG levels? Also, how many weeks post IVIG are you now?

We are now week 38 -- so she has been 11 weeks post start of exacerbation. 7 weeks post peak of exacerbation and 3 weeks from tail of exacerbation. All of our exacerbations are distinct with a 4 week tail -- and yes, we are now at pre-IVIG level. Our pattern is pretty constant, 2 week ramp, 1 week plateau, 3-4 week fall.

 

 

week 11: happy

...

until week 27: fever, measurement ritual comes back, food questioning returns, ...

... continued escalation at roughly same baseline as pre-IVIG...

until now

[/indent]

 

Buster

Edited April 27, 2010 by Buster

[kimballot]

Buster - thanks for the clarification. The margin drift is very interesting... and I always appreciate your detailed observations. Very helpful. Thanks

[Joan Pandas Mom]

Buster, I'm sorry to be so numb here but are you saying your daughter is back to where she was before the IVIG? Do you feel the IVIG was helpful?

 

Buster - I was not clear what you meant by "margins" - are you talking about the margins on her papers when she writes?

Yes, my daughter in the worst of her exacerbations (pre-IVIG) had left margin drift issues. She'd start her papers in the center of the page and seemed unable to ever get to the left margin. It was really odd. Then each line would be indented to the right.

 

Also - could you explain a bit more about week 27 until now? Are you saying that she started backsliding in week 27 and she is now at pre-IVIG levels? Also, how many weeks post IVIG are you now?

We are now week 38 -- so she has been 11 weeks post start of exacerbation. 7 weeks post peak of exacerbation and 3 weeks from tail of exacerbation. All of our exacerbations are distinct with a 4 week tail -- and yes, we are now at pre-IVIG level. Our pattern is pretty constant, 2 week ramp, 1 week plateau, 3-4 week fall.

 

 

week 11: happy

...

until week 27: fever, measurement ritual comes back, food questioning returns, ...

... continued escalation at roughly same baseline as pre-IVIG...

until now

[/indent]

 

Buster

[Buster]

Hi Joan Pandas Mom,

 

are you saying your daughter is back to where she was before the IVIG?

 

Yes, after 6 months of no symptoms post IVIG, our daughter got sick again with a fever of 102. We do not think it was GABHS but it is difficult to tell. After the fever, symptoms reemerged following our classic exacerbation pattern of escalation for 2 weeks, plateau for 1 week and fall off for 3 weeks. Unfortunately, her remission was not complete post-illness and held steady at the pre-IVIG baseline. We tried increasing azith and had improvement in mood, but vocal tic, handwriting abnormalities, measurement rituals and eating restriction were now part of her new baseline. We tried a prednisone burst and saw some improvement but these were not sustained post-prednisone.

 

I'm sorry to post this news but wanted folks to know.

 

Do you feel the IVIG was helpful?

Absolutely we had 6 months of calm and had our daughter back. We really thought we were done -- frankly this is why I started writing everything up (PANDAS FACT sheet, FAQ post, research summaries, ...) because I thought we were putting this behind us.

 

IVIG was incredibly beneficial -- but (at least in our case) a new infection seems to have retriggered the same reaction.

 

Buster

[Buster]

Did you and your wife have any idea it would be like that when you did it?

 

In our case, we had a pretty good idea of what to expect the first 2 weeks. I will say that I am deeply indebted to my dw who was confident and patient while I started to worry that IVIG had just made things worse. The first 2 weeks were very much like watching the last 2 years in fast reverse. Things we hadn't seen for over a year re-emerged.

 

I'm not sure which of the myriad of theories to consider as to why this "reverse symptom" stuff happens, but we can attest it does.

 

The thought that her symptoms would return after a fever 6 months later didn't really occur to us. I think we were just feeling so blessed. We did keep her on prophylactic azith, but as I've written elsewhere, azith just slows a bacterial infection, it doesn't in and of itself kill strep. The illness/fever didn't make us think of strep either, so we think it was likely something else.

 

Buster

[NancyD]

Child's age at IVIG? Began when dd was 12. Last infusion age 14.

 

Was child in exacerbation at the time of IVIG? First and last YES, in between NO

 

What was the dose? First dose was 1.5g/kg over 2 days and last dose in March was 1.5g/kg in one day. Monthly infusions in between ranged from .5g/kg to 1g/kg. Now we're taking a break from infusions to see what happens.

 

Did child have immune deficiencies at the time? Low IGG when we started but not considered immune deficient. On the high side as we continued.

 

Post IVIG experiences? Was it initially worse or as bad as exacerbation? Dd was in such bad shape before the first infusion that we did not notice that the symptoms got any worse. Saw improvement after the second infusion and it just got better after that. Noticed a bit of a decline in the 3rd week after subsequent infusions but then saw improvement after the next infusion. Dd had one fabulous year with no rages and 95% of tics gone. Completely off Risperdal for first time in 10 years. And sleeping in her own bed for first time in 10 years. Started making friends and grades went from Cs and Ds to straight As. infusions did not help anxiety or OCD symptoms though. Unfortunely things went downhill in November after she was exposed to so much sickness. Mood dysregulation and rages came back, tics still 95% gone. After last high-dose infusion we noticed 2 good days during first week, 3 good days during second week, 7 good days during third week, and then downhill after that. She has been coming down with one skin infection after another. Dr. L diagnosed her last week with pityria rosea. Will post something separate about our visit to her.