PEX PARENTS

[fuelforall]

PEX parents

 

Did anyone get PEX for their child DESPITE immune deficiency issues?

I know PEX lowers immunity substantially and so has to be followed up by IVIG

 

I just know my son, who has reduced IGG, suffers so much with tics and if IVIG isn't going to help much, he's going to rebel about doing it.

 

SHOULD THE NEXT MOVE ON MY PART BE PEX NEVERTHELESS? Followed by monthly IVIG?

Arguments pro or con appreciated. MY son is really, really sick right now.

 

Michael

[T_Mom]

PEX parents

 

Did anyone get PEX for their child DESPITE immune deficiency issues?

I know PEX lowers immunity substantially and so has to be followed up by IVIG

 

I just know my son, who has reduced IGG, suffers so much with tics and if IVIG isn't going to help much, he's going to rebel about doing it.

 

SHOULD THE NEXT MOVE ON MY PART BE PEX NEVERTHELESS? Followed by monthly IVIG?

Arguments pro or con appreciated. MY son is really, really sick right now.

 

Michael

 

Michael, I am really sorry to hear your son is really sick right now--what are the symptoms and is he on antibiotics?

[fuelforall]

Whew!

Anxiety- High

Tics- VERY bad

sensory integration disorder: to the MAX

Mood Lability: horrid

Hyperactivity:bad

 

He's on Clonidine. And he is on day three of a steroid burst. No better, no worse. Just did a lot of blood work for strep and mycoplasma.

After, we will probably try Clindamycin.

All this is supervised by Dr T.

[michele]

Michael sounds close to home. I talked to Dr. T also about seeing my son who has not responded well in the past. Are you going in person or over the phone? We live in OH. Please keep posted on what you make out. We are on amoxcil 500 mg a day or Omnicef 300 mg a day. I have both scripts and I am not sure if one is stronger but he had grown a bit resistant to Omnicef. I switched him myself because I can't get Dr. help on antibiotics. . We are on tenex and prozac and risperdal. The clonidine he was on kicked his butt. He was way too sleepy on it. We still see anxiety and impulse issues and minimal tics since the tenex and prozac combo. You may ask to try tenex for the tics and compulsions. The risperdal is for the moods and rage. It is much better also now. It takes alot of trial and error. Best of luck to you.

Whew!

Anxiety- High

Tics- VERY bad

sensory integration disorder: to the MAX

Mood Lability: horrid

Hyperactivity:bad

 

He's on Clonidine. And he is on day three of a steroid burst. No better, no worse. Just did a lot of blood work for strep and mycoplasma.

After, we will probably try Clindamycin.

All this is supervised by Dr T.

[fuelforall]

The clonidine he was on kicked his butt. He was way too sleepy on it.

 

That is what we are seeing now early on. Wondering if his system will adjust. Alas sometimes it is a relief to have him sleep,esp with his nightmares and troubles sleeping. Tenex put him to sleep too.

I think our boys need something stronger than what you're getting, ABX-wise. Augmentin XR costs bucks. Clindamycin is as I said, probably next. But we'll need something we can keep him on a while and Clindamycin is not one such drug.

I'm in NYC. We did Abilify, fine until he adjusted and it didn't do anything. We did Seroquel which never worked out.

[MichaelTampa]

Michael,

 

So sorry to hear of your son's continuing struggles here. I don't have the information or experience to answer the question you've asked in terms of PEX and IVIG and antibiotics, but will make a suggestion anyway. Perhaps some things in the supplements category could help strengthen his immune system some. There are so many possibilities--selenium (as selenomethionine), vitamin B12, folic acid, vitamin B6 (p-5-p form), riboflavin, N-acetyl cysteine (NAC), alpha lipoic acid (great in combination with NAC), zinc, magnesium, SAMe (S-adenosyl methionine). Some of these are not that expensive and might make a difference, help whatever you do choose go a little better. I think sometimes the body gets warn down so much it's hard to fight off the bad guys even with the drugs that are supposed to help, and maybe a few of these items could help support whatever therapy you do choose. If you do try, I would recommend adding one at a time, in case there is a bad reaction.

 

Michael