"Epiphany Moment" 12 weeks Post IVIG anyone?

[P_Mom]

...the Pastor had nothing to do with it (But, maybe God did .........so, I got to thinking....how did this happen to my son (if it did...what Dr. K said...sounds like it)....then it happened without IVIG...without the bone marrow conversion, etc. Edited July 11, 2010 by P.Mom

[T_Mom]

Wow! Our initial exacerbation resolution was similar PMom!

 

Our d had not been speaking for over 3 weeks (later said OCD told her not to), she was crouching and holding painful positions until it hurt, eyes closed, saliva in her mouth, not walking, bathroom accidents, only on her knees in a ball on the floor--We started the antibiotics and did the steroid burst...

 

Dr. K had said that IF it was Pandas we would see a sudden and obvious change--You know what, we DID!

 

August 26th, 8pm, she walked down into the kitchen started talking, eyes open, like it was totally normal--

My younger d came up to me and whispered, "Mama, *** is talking!"...grandparents cried on the phone that night, etc.

 

Next day the psychiatrist OCD expert (truly considered an expert) used the word miraculous...it was!

antibiotics...steroids...and lots of prayer:)

[matis_mom]

...the Pastor had nothing to do with it.........so, I got to thinking....how did this happen to my son (if it did...what Dr. K said...sounds like it)....then it happened without IVIG...without the bone marrow conversion, etc.

Maybe just the act of turning to God for help is what did it!

For all us out there who are still waiting for complete healing: "GIVE THANKS TO GOD AHEAD OF TIME"

We'll get there, in His time.

[P_Mom]

Mati's mom...thanks! There is no "complete" healing here. I have NO doubt it is all smoldering below the surface........And, yes, the act of turning to God had everythinhg to do with it.

 

AHHH yes......In HIS time.....the most difficult thing for me to grasp....I am trying.

Edited July 11, 2010 by P.Mom

[Kayanne]

I think our daughter's recovery was just as dramatic...at the end of the month of pred, she just snapped out of it, and began to talk again...I was so sure it had something to do with our refill (we ran out of prednisolone and started prednisone). It was truly miraculous for us!

 

We were seeing baby steps all along that month...but she went from about 70% improved to 98% improved within hours.

[bubbasmom]

Not a sudden moment but in hind site I can just about point to the day. But we were so 'walking on eggshells' that we were afraid to let our guard down. Even now, I hesitate to talk about it too much. But I do think we can point to that time within a few days.

[Megs_Mom]

With our daughter's first onset at age 3, it completely receeded within 4 weeks. Somewhere around week 3, about a week after a "coincidental" treatment of azith, it just went away - and stayed away for 3 years. I was nervous for about another year - my dh kept telling me to stop watching for it. When it came back at age 6, we kept thinking it would just vanish in 4 weeks, I even told her that. So we did not start seeking a ton of help until week 4 came & her illness was quite severe (OCD). I've always wondered what the difference was.

 

At the remission point in each episode, I can look back & tell you when life went back to about 80-90% normal.

 

We haven't done IVIG - just abx. I always wonder if lack of IVIG allows it to come back, but I don't have any clarity on that yet.

[tpotter]

My then, 16 year old, who had already been hospitalized one time for severe symptoms (before we knew it was PANDAS,) was put on abx by Dr. K. Overnight he was a completely different kid. When it happened again, he was put back on abx...same thing. Kept him on those abx, and then they stopped working, symptoms came back (trust me...horrible), and again...literally within about 1 hour of taking the abx.) He was calm (but prior to the abx, walls got broken, and worse.) I agree with the later post saying it is probably just festering, because that's what happened. He has since had PEX, and continues on abx, and he has now been rarely sick for months. But, it's starting to come back, and we are planning repeat PEX and/or IVIG.

[Megs_Mom]

My then, 16 year old, who had already been hospitalized one time for severe symptoms (before we knew it was PANDAS,) was put on abx by Dr. K. Overnight he was a completely different kid. When it happened again, he was put back on abx...same thing. Kept him on those abx, and then they stopped working, symptoms came back (trust me...horrible), and again...literally within about 1 hour of taking the abx.) He was calm (but prior to the abx, walls got broken, and worse.) I agree with the later post saying it is probably just festering, because that's what happened. He has since had PEX, and continues on abx, and he has now been rarely sick for months. But, it's starting to come back, and we are planning repeat PEX and/or IVIG.

 

It does seem that some kids have a one time onset - remission fairly permanent, either due to treatment, lack of re-exposure or puberty. Others seem to have an on-going issue. There are no long term studies yet, so I remain really interested in the antidotal experiences of those using abx to manage & doing well, vs those moving to PEX/IVIG (possibly in combo with abx) who then either have a more full remission or continue to repeat IVIG. I'm not talking about kids with true underlying immune issues (ie those who would really need IVIG monthly anyway), but those with no notable immune deficiency other than PANDAS/PITAND. So many thanks to those who continue to post their individual trials here. In the absense of research studies, reading these is the best way that many of us have to evaluate treatment plans.

 

As a reference point for our situation, our dd has had a 90%ish response to abx with no major exacerbations now for a year. We deal with the remaining % with ERP therapy, which has given her great tools. However, we seem minor flares with any respiratory illness, which are treated quickly with a increase in abx and motrin. She also has a flare up if her abx level decreases too much - which would seem to indicate that there is something continuing to fester that triggers inflamation.

[fuelforall]

Jodie. Answer: No, not if your child is like mine.

BUT I will repost below what I told Joan Pandas Mom the other day. Perhaps you missed it.

 

 

Joan, maybe this will help.

Every time I'd given up post iVIG, I saw something I liked about my son. A little thing. And I said, goldurn it, he's healing.

Then I thought I was wrong.

I would say it took me three months to see my son WAS healing.

That's right.

Three months.

huh.gif

My son is a tough nut too. Nothing ever works on him, as he likes to say.

But he is better.

He can sleep alone now. he is sleeping pretty well too, for a change. He put himself to bed tonight, he has been doing that a lot lately instead of complaining endlessly about bad dreams.

He is more affectionate and loving than ever.

He went out into the city streets himself the other day to return a DVD and buy a slice of watermelon from the grocery store.

He is about 25 percent better than he was.

We are looking at slow, steady progress. Dr K sez he is probably a late bloomer.

Sure his tics are bugging him, he still gets wrought up over nothing, but he snaps out of it quicker too.

THe cliche about it always being darkest just before they turn on the lights is true.

We were in ######.

So we know what you are going through. It stinks.

But as everyone is saying, hang in there. smile.gif

Hey, Bubba's Mom! We got that post traumatic thing going here too! And we're still a long way from healed!

 

Michael

[sptcmom]

Jodie. Answer: No, not if your child is like mine.

BUT I will repost below what I told Joan Pandas Mom the other day. Perhaps you missed it.

 

 

Joan, maybe this will help.

Every time I'd given up post iVIG, I saw something I liked about my son. A little thing. And I said, goldurn it, he's healing.

Then I thought I was wrong.

I would say it took me three months to see my son WAS healing.

That's right.

Three months.

huh.gif

My son is a tough nut too. Nothing ever works on him, as he likes to say.

But he is better.

He can sleep alone now. he is sleeping pretty well too, for a change. He put himself to bed tonight, he has been doing that a lot lately instead of complaining endlessly about bad dreams.

He is more affectionate and loving than ever.

He went out into the city streets himself the other day to return a DVD and buy a slice of watermelon from the grocery store.

He is about 25 percent better than he was.

We are looking at slow, steady progress. Dr K sez he is probably a late bloomer.

Sure his tics are bugging him, he still gets wrought up over nothing, but he snaps out of it quicker too.

THe cliche about it always being darkest just before they turn on the lights is true.

We were in ######.

So we know what you are going through. It stinks.

But as everyone is saying, hang in there. smile.gif

Hey, Bubba's Mom! We got that post traumatic thing going here too! And we're still a long way from healed!

 

Michael

Thanks Michael and everybody. I was tearful reading all your experiences. I continue to keep tons of hope alive and pray.

Jodie

[Suzan]

But he is better.

He can sleep alone now. he is sleeping pretty well too, for a change. He put himself to bed tonight, he has been doing that a lot lately instead of complaining endlessly about bad dreams.

 

Gives me hope that I may have my room back some day,

 

Thanks,

 

Susan