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Please tell me what you know If you have done it and is it a good idea?

 

Thank You

 

Melanie

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Have done it with both daughters.

 

Single most effective thing we have done by far.

 

Wish we could do it every flare up.

 

Your son is adult size? If so he can do w/o central line- if that is the case I think it's a "no-brainer"- all the risk lies in the central line.

 

Where might you have it done?

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Have done it with both daughters.

 

Single most effective thing we have done by far.

 

Wish we could do it every flare up.

 

Your son is adult size? If so he can do w/o central line- if that is the case I think it's a "no-brainer"- all the risk lies in the central line.

 

Where might you have it done?

 

d

Think we are going to do it at NYU..Waiting for the insurance stuff Ill let you know when I get more details.I wish others would respond.

Been doing IVIG for almpst 2 years .Looking for more.Never give up.

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Hi Melanie,

both of my daughters have had pex. they were 11 & 13 at the time.

One has been is sick (severely disabled by PANDAS/PITANDS) for over 3 years- Pex was not until almost the 3 year mark & 2 months post IVIG.

She was improved by 60% by week 4 or 5, but she has relaped and we are looking at repeating it & doing monthly IVIG after this plasmapheresis.

 

My other daughter was about 18 months into moderate (with severe, though remitting, strep-associated exacerbations) PANDAS and about one month in to an exacerbation that was not letting up.

By one week post- she was so much better. It was amazing. By a month- to our eyes- she was almost 100%. she still had some internal OCD. She started to decline about 4 months after & had IVIG. We are 10 months post pex & there have been blips- but besides school issues- she is doing great.

 

I think pex & steroids are the thing for my girls.

I have another child with mild PANDAS-symptoms. If she started to "go down that road", I would do it again in a heartbeat. It was so helpful for both my girls.

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Thank You!!We have been doing IVIG every 21 days for almost 2 years.Change is hard for me but necessary.Hopedully the insurance thing works out.The MD said something about 5 excnges? Not sure what that meant or even if I heard him correctly.Hopefully Ill hear something this week.Dans 17 1/2 .142lbs,Is the port process that bad? I havent really told him much about it.Were your kids in the hospital for days or just 1 day?

 

Melanie

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Thank You!!We have been doing IVIG every 21 days for almost 2 years.Change is hard for me but necessary.Hopedully the insurance thing works out.The MD said something about 5 excnges? Not sure what that meant or even if I heard him correctly.Hopefully Ill hear something this week.Dans 17 1/2 .142lbs,Is the port process that bad? I havent really told him much about it.Were your kids in the hospital for days or just 1 day?

 

Melanie

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oivay-

 

can i ask- how old is your child, and was it done through a central line?

thx?

 

 

Melanie-

 

My kids had it done through a central line. THe procedure was fine, the line was put in under anasthesia. I am just saying that the only risk with pex is not the exchanges, but having a central line, and the normal risk with anasthesia. I may be incorrect, but I am thinking with an adult, it might be able to be done through a peripheral vein (if the flow is good). This removes any risk. But- I would and will still have it done via the central line with my kids.

 

We had it done at georgetown, and they put the central line in the femoral artery (leg)- which I would request. The other option is the neck. With the leg, you put a blanket over it and forget about it.

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She is now 12, was 11 when it was done. About 100 lbs, almost 5'.

 

She did it through IVs in both arms, one exit, one entrance. They take everything out in one arm, and put back their platelets, albumin, and red blood cells in the other arm after it goes through a blood warmer.

No central line. When they do it this way, there is a danger of the veins collapsing, and if that happens, then they have to do it the other way, I think it's called a subclavian catheter? (through the neck.) Thankfully, her veins held up, although it got a little iffy toward the end.

 

She missed a lot of school during the process as she was just too exhausted to go.

By the second treatment, there was a marked improvement, and pretty much all symptoms had disappeared.

After several rounds of just about everything (abx, steroids, tranquilizers, depakote(really bad idea), and tegretol, this was the only thing that totally got rid of her chorea/dystonia/tics etc.)

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Hi Melanie,

 

My son had PEX at Georgetown though the same process as DCMOM's kids. He had a great initial response but by 3 weeks he was starting to slip and by 5 weeks he was back in a pretty severe exacerbation. I know that DCMOM's kids had previously had their tonsils removed at same point prior to PEX. If your son has elevated strep titers, this might be something to consider prior to PEX.

 

PowWow and Oivay, do your kids still have their tonsils?

 

For my son, his ASO was 200, and Anti Dnase B was 480, in his blood work done at Georgetown prior to PEX. At the conclusion of the PEX his ASO was 20(anti-dnase b not tested),so the PEX had effectively replaced his plasma. By the 5 week mark when he was back in an exacerbation, his ASO was back up to 200 and anti dnase b was back to 480. So something made it go back up, either an ongoing infection of some sort (tonsils maybe), an exposure to strep from somewhere else, or maybe autoimmune.

 

If we had it to do over again, we would have had the tonsils out before we went down the PEX road. His tonsils are now out and so far things are going fairly well. Also, after PEX I think we should have worked much harder to prevent strep exposure or infection of any kind. He was only on a very low dose of antibiotics post PEX, I think 2 doses of azithromycin per week, and his post PEX flare coincided with a tooth infection.

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We got her tonsils out in Nov. 2010. (Had both kids done at once.) She had been symptom free for about 2 mos. before tonsillectomy.

 

Her last round of symptoms started almost as soon as she stopped abx post op. Neuro theorized it was bacteremia from the surgery.

Tried steroid burst/clindamycin, which helped a lot, but didn't totally resolve symptoms.

Then tried Biaxin/medrol combo, which gave her such severe diarrhea we had to stop it after about 2 days.

Then we tried tegretol/zithro, which helped somewhat, but left her pretty much asleep all the time and very weak.

Then we did the PEX.

 

I would definitely get the tonsils out before PEX, and request prednisone/abx for the post op period. It takes about 2 weeks or so for a kid to recover from T&A.

 

Also, my daughter's strep titers never really rose, even in the midst of documented(rapid strep tests were always highly positive) strep infections.

Also, I have heard that pandas symptoms will worsen with dental procedures/teeth falling out etc.

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Alex-- the one who relapsed did have her tonsils out over 2 years ago(per pex) The one with the strep exacerbation and who is doing great- still has her tonsils. So, I do not think that is the problem here.

 

 

At georgetown they do the equivalent of 4.5 exchanges, but doubled up= so you are there three days. I think some one somewhere said that the original pex study did 5 exchagnes over 5 days-- so a little more time was involved. I wonder if that is better? But I imagine it is a cost issue & as i told our doctor, I am so thankful that I have been able to get pex at all-- much less heading into our third time (with 2 girls). I am very aware that there are people here who would do anything to get pex once.

 

one daughter had central line in femoral vein & the other had it in her neck. It was second choice position (neck) but they had difficulty getting it in her groin.

 

At the time my girls were about 5 ft tall & one weighed about 125 and the other closer to 150lb.

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Thank You all.I will let you know whats going on Looks like second week Nov.Im off for teachers convention.(nj).

 

Melanie

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oivay-

 

my 8 yr old's story very similar to yours....

 

positive strep

no titers

relapse post T&A

full, long term remission with PEX

we now see relapses, she had strep this past april

I feel if we are able to jump on it fast with steroids, she can do well

would do pex in a heartbeat if needed, wish it wasn't such a chore to get it done

 

Georgetown limits the central line to a max of 5 days, which may be why they do less exchanges, after day 5 risks of central line (infection) rise dramatically.

 

Agree with ALex- if ANY surgery, T&A or dental work are on your radar- do it prior to pex. After pex avoid anything that may rock the boat.....

 

Alex- glad to hear things are going well (or better)...

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Melanie,

 

I was just thinking of you.

We also had it done at Gtown...just like DCMom. I also agree that I wish I could get it done again. We have done 7 IVIG's on one child and 6 on another, and on my younger son...I really feel he needs the PEX again. Held him longer. I agree that I would do PEX followed by IVIG.

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