post IVIG symptoms ramp up

[fuelforall]

My son was crazy enough before IVIG. Now he's even worse. A lot of parents talked about how it takes a while to come down and the antibodies to settle, etc. That it gets better later. He is extremely hyper and mood swings are high.

So in the meantime, what do you do? Any med effective for anyone?

 

Thanks.

 

Michael

[bronxmom2]

when did he have the ivig and what dose?

[fuelforall]

Last Wednesday and THursday.

Dr B- Standard dose 1.5 over two days

[bubbasmom]

Wow, we were just talking about that! My son too. Our kids have always had very similiar situations. That's why I was asking what you were doing with your son recently because I've about hit the wall.

He was doing so well before. Looking back I do remember this happened last time. But I don't remember how long it lasted. He had IVIG 10/27 and by the 2nd week of December things started going very well.

[EAMom]

My dd had a rough 1st week post-IVIG as well, including "turning back the pages", irritability, and some new symptoms ("my tastebuds don't work"). I think that is pretty typical. After the first week things got better, week by week. Hang in there!

 

I would try advil if you aren't doing that.

 

What antibiotic/dose are you on?

[fuelforall]

Clindamycin, 150 mg twice a day. It's the only thing that has brought strep numbers down a bit.

[bronxmom2]

Mine had a flare up too, especially after the first round when he only got 1.0 gr per kilo. That DEFINITELY "stirred up the pot."

I noticed less the second round and am hoping for even less the third time, which is next week.

I'm so glad you're seeing Dr. B! Good luck.

 

As for keeping them calm...I'd say just plenty of red wine for yourself.

[melanie]

Mine had a flare up too, especially after the first round when he only got 1.0 gr per kilo. That DEFINITELY "stirred up the pot."

I noticed less the second round and am hoping for even less the third time, which is next week.

I'm so glad you're seeing Dr. B! Good luck.

 

As for keeping them calm...I'd say just plenty of red wine for yourself.

 

 

3rd dosage wasnt great for us in fact total nightmare.4th is friday

[fuelforall]

Well, he's pretty nutso right now.

Wine is hard to enjoy as much.

Why are you still doing IVIG? Are your son's numbers low? Dr B said my son's numbers should be up in the normal range (IGG subclasses) after this iVIG treatment we just had.

 

M

[Fixit]

Wow, we were just talking about that! My son too. Our kids have always had very similiar situations. That's why I was asking what you were doing with your son recently because I've about hit the wall.

He was doing so well before. Looking back I do remember this happened last time. But I don't remember how long it lasted. He had IVIG 10/27 and by the 2nd week of December things started going very well.

 

so the first month (nov)pretty much status quo or worse, then as dec rolled in you saw some benefits????

[Fixit]

are all of you getting this covered by ins...

escpecially with the multiple treatments.....

 

one other question...are all of you waiting and seeing how it goes...are you schedulee quarterly

i'm trying to figure out who gets more and why.....did you guys have relapses or are you kids condition just not close enough to where you think it should be?

[fuelforall]

Wow, we were just talking about that! My son too. Our kids have always had very similiar situations. That's why I was asking what you were doing with your son recently because I've about hit the wall.

He was doing so well before. Looking back I do remember this happened last time. But I don't remember how long it lasted. He had IVIG 10/27 and by the 2nd week of December things started going very well.

 

so the first month (nov)pretty much status quo or worse, then as dec rolled in you saw some benefits????

 

 

It's that six-week point again. Gad, I hope I can make it to six weeks!

[bubbasmom]

Fuel for all, what about the 6 week point? Do you mean he showed signs of improvement? Do I have to wait 6 weeks again?? I'm really ready for someone to tell me some good news for once. Cause you know we're still debating PANDAS, PITAND, Lyme, or just plain 'collapsing'.

[sf_mom]

First couple of days post IVIG have always been rough..... HYPER, could run a marathon!!! We've had 3 treatments, eight weeks apart, 1.5 mg/kilograms over two days. Once the antibodies settle things really start to improve. We are now 11 weeks past our last treatment and currently 98% recovered and have seen huge improvements in other areas that we didn't realize were related to PANDAS. We are very hopeful another treatment is not required.

 

The waiting for recovery is awful. We've been at this for over 6 months and we've had some 'flairs' or 'turning of the pages' of symptoms that were directly related to strep exposure or a recent 'cold' in the home. However, our son's reaction to these exposures is less and less and his improvement continues over time. Sometimes only 1% per week but then all of sudden we'll see a flair of symptoms followed by marked improvement. I'd love to announce he is 100% recovered but don't feel that its appropriate until he is at 6 months out from any IVIG treatment or remaining symptom.

 

After our first treatment week 6 and 8 he was exposed to strep and just knew his body wasn't able to recover on its own so we retreated. We saw a two week, slow steady decline in improvement and his baseline adjusted downward instead of upward. Shortly after our third IVIG we realized my husband's titers were high, treated him for an active strep infection and we started working with a nutritionist that has dealt with many auto-immune illnesses...... perhaps why we are seeing continued improvement post our third treatment.

 

Let the symptoms over weeks NOT DAYS determine how its working or if another treatment is required. With each treatment, you will see the stirring up of antibodies and symptoms!!!

 

All I can say is.... healing takes time, you will see some strange things crop up but then resolve, the waiting is painful but you are not alone in your wait.

 

-Wendy

Edited March 30, 2010 by SF Mom

[Fixit]

Fuel for all, what about the 6 week point? Do you mean he showed signs of improvement? Do I have to wait 6 weeks again?? I'm really ready for someone to tell me some good news for once. Cause you know we're still debating PANDAS, PITAND, Lyme, or just plain 'collapsing'.

 

i thought you saw improvement at 6 week point...as per above where you mentionded 10/27 ivig ...and then some improvement mid Dec