Approaching 7 weeks post IVIG regressing

[fuelforall]

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.

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.

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

 

Michael

[forjpj]

No advice to offer, just sending you good thoughts!! Hope you all find some relief soon!!

Sarah

[kimballot]

wishing you well as you work through this and thank you for sharing this with us. I wish I had some advice but I do not know enough to help.

 

All the best to you and your family.

[peglem]

What has worked well for my daughter, twice now, is a 2 week course of rifampin+augmentin. The first time was several months b4 IVIG, the second time was after her 2nd low dose IVIG. She was in very bad shape both times, but w/in a week, both times, she dramatically improved- especially once the yeast (augmentin makes her yeasty) was cleared w/ diflucan.

[sptcmom]

The last e-mail I got from Dr. K (last week) said to still wait it out--that there wasn't anything we can do until 8 weeks because of protocol we wouldn't know what worked. Things are so bad now I e-mailed him again this afternoon and begged if there was anything we could do to relieve some of the symptoms. I don't care about protocol or knowing what works, I just want something to work, something to give him some relief. When it gets close to the 8 weeks and still no results (except for a few good days right after the IVIG and I was really hopeful) it gets so hard to keep hopeful. I couldn't sleep last night and I was going through the channels on TV and started watching Mother Angelica on EWTN (I love her). It was about being tenacious, trusting with all your heart and not losing hope. I taped it, I think I need to go watch it again!!!

Dr K's famous one liner I guess- "there is nothing much you can or should do" ...... YEP, got that from him several times. I started a similar thread a week or so ago when DS8 at 8 weeks post IVIg was having huge flare ups. I got the above response from Dr K. I am willing to wait and see. many people report progress as we see 10 even 19 weeks post. So unless there is a true regression over weeks playing around with antibiotics and meds appears to be the thing we can do. Dr K suggested increasing Augmentin to 600 mgs thru the flare ups, and Ive heard good reviews on Motrin helping as well. All the headaches, stomachaches etc are not reinfection as per Dr K. They are all part if the flipping/herxing whachamaycallit. We're having all that plus lots of mood swings, OCD, echolalia, scripting, massive anxiety, repeating phrases over and over drives me nuts. He's watching The Last Airbender and keeps chanting the names of all the characters for hours one at a time! "Appa, Appa ... ad nauseum. Then begins " Sokka! Sokka!.... Oh God! I'm ready to jump off a cliff. On top of that the aggression is literally killing me- getting pinched, punched, kicked etc.

I do wish us Pandas families lived in a commune of sorts. Wishful thinking.

[Fixit]

What has worked well for my daughter, twice now, is a 2 week course of rifampin+augmentin. The first time was several months b4 IVIG, the second time was after her 2nd low dose IVIG. She was in very bad shape both times, but w/in a week, both times, she dramatically improved- especially once the yeast (augmentin makes her yeasty) was cleared w/ diflucan.

 

can i ask why the rifampin/aug combo???

what is the thought on rifampin?

did you see that is should be taken for 3months....i don't know if that is only for tb...but if you take intermittanly you are more suseptable to drug resistant tb....

i don't know if that only applies to if that is what you are treating..

[Johnsmom]

thank for posting about stomach aches and headaches as herxing. It makes sense to me now!

Edited July 8, 2010 by Johnsmom

[peglem]

What has worked well for my daughter, twice now, is a 2 week course of rifampin+augmentin. The first time was several months b4 IVIG, the second time was after her 2nd low dose IVIG. She was in very bad shape both times, but w/in a week, both times, she dramatically improved- especially once the yeast (augmentin makes her yeasty) was cleared w/ diflucan.

 

can i ask why the rifampin/aug combo???

what is the thought on rifampin?

did you see that is should be taken for 3months....i don't know if that is only for tb...but if you take intermittanly you are more suseptable to drug resistant tb....

i don't know if that only applies to if that is what you are treating..

When I brought the doc the article (compliments of Buster) on carrier state not being so benign, that's what he decided to try- thinking that she was a carrier, reinfecting herself. She had just entered a huge regression following dental work and was getting strep in between dosing of zith when she was on a 5 days on, 7 days off schedule. With TB they use it for months at a time, but it is known to cause liver problems, so her pediatrician decided to be cautious.

Edited July 8, 2010 by peglem

[Mary M]

Yes, I'd like very much to hear how things are. I think of you so often...

[Joan Pandas Mom]

Thanks everyone for these post. My Mom had a heart attack last week so I haven't had a chance to read and respond. I'm going to tomorrow. I hope everyone is seeing progress.

[melanie]

So sorry hope she ok.

[ZaxMom]

Hello All,

I am new to the forum. My ds (6 yrs) just had IVIG 4-1/2 weeks ago with Mary M's dd. His "rage" behavior is worse than ever. Does anyone know of a pediatrician in or around the Baltimore area who understands PANDAS and would be willing to work long distance with Dr. K? Our current pediatrician laughed at the idea of PANDAS. He said that he doesn't believe in PANDAS - that it doesn't exist! Any info would be appreciated.

[Fixit]

Hello All,

I am new to the forum. My ds (6 yrs) just had IVIG 4-1/2 weeks ago with Mary M's dd. His "rage" behavior is worse than ever. Does anyone know of a pediatrician in or around the Baltimore area who understands PANDAS and would be willing to work long distance with Dr. K? Our current pediatrician laughed at the idea of PANDAS. He said that he doesn't believe in PANDAS - that it doesn't exist! Any info would be appreciated.

 

Terrible isn't it...sorry you are having a tough time...

i wouls suggest you start a new topic so it might catch someone who might know

[Mary M]

Thanks everyone for these post. My Mom had a heart attack last week so I haven't had a chance to read and respond. I'm going to tomorrow. I hope everyone is seeing progress.

 

Oh joan Pandas mom,

 

I am so sorry to hear this. You've already has so much to deal with in the last several months. Please know that you are in my thoughts and prayers...

Mary

from Michigan