PEX/With Immunodeficiencies

[michelew]

Can PEX be used if your child is immunodeficient?

 

My son showed deficiencies in several IGG subclasses. I was curious to know, of the families who have done PEX, did any of your children have any immune deficiency issues. I've noticed how some families receiving PEX have mentioned that their children had received IVIG, preceding PEX. Is this highly recommended for the immune deficient kids?

 

Also, do most of the doctors now recommend following up with IVIG after PEX? If so, how long after PEX should IVIG be administered?

[PowPow]

My kids had pex. I hate to be a downer, but I think the chance of getting pex for PANDAS is quite slim now.

 

I doubt that an immunodeficiency and pex are no cause for concern. Pex removes the "right here, right now" antibodies, nothing long term.

 

If you had IVIG soon (2-3 weeks) before pex, I think any benefit would be "erased" by the plasmapheresis.

 

One of my children had IVIG 4 months post pex- after an exacerbation that presented as very sudden dramatic anorexia (loss of 12lbs in 2 weeks & it came out of nowhere!)

 

the other had ivig 2 months before pex, when it looked like pex was not going to happen. She is also low in sub classes 1 & 2 IGG (or was about 6 months pre IVIG), not quite 2 SD below normal, but still a bit lower than the low end of the range. We never went to an immunologist and have no immunodeficiency diagnosis.

 

i hope this helps.

Pex was wonderful for my girls. Very, very helpful. They were in severe straits. However, it was not permanent and more than anything it was a stepping stone that brought them to a point where they could get into CBT/ERP, which I cannot rave enough about. Each step in this has been part of our journey, all necessary, but no one step got us all the way there.

[michelew]

Thanks, PowPow. My son is just on a very scary downward spiral, and we were hoping to find something that would work more quickly than IVIG, and we thought PEX might be that answer. He is right now on a one-month steroid taper, (today will be the 6th day) and we haven't seen any improvements, and somewhat worsening of his symptoms.

[PowPow]

is this the first steroid taper you have done? We did not see improvement until about day 10, and that was fairly consistent for multiple steroid tapers. my 7 yo has seemed much better by the end of the month of steroids. the girls who had pex are older (11 & 13 a time of pex).

Do you see a doctor who will consider pex? If you can get it-- DO! One daughter had a massive improvement one week after (big time!) and then slowly got beter over a month. The other daughter showed improvements at about a month. Is he on antibiotics or do you try advil? I was really skeptical of advil and still am, but I do think it works, on a very low level.

I am sorry you are going through this. Please do not give up-- this can be such a rough time.

See if you can hold tight and just get through this steroid taper, while you work on getting pex!

[michelew]

Thanks for the encouragement, PowPow. Yes, this is his first steroid taper. We are on day 7, and I am starting to see some subtle improvements. He just looks physically healthier than he has in a long time, and his eyes look normal for the first time in a very long time. He no longer has huge, dilated pupils. He is still very unstable, with self injurious behavior occurring daily, but I'm hopeful for some continued improvement. I'm glad that I did not panic and give up on the steroid too quickly.

 

I'm not sure I can find a doctor willing to do PEX. This seems to be a very logical step, and seems to make the most sense to me at this stage of my son's recovery. He is definitely one of the worst cases probably most on this board have ever seen, with relatively every symptom. He's definitely a 10 on a scale from 1 -10; however, we did see improvement when he was receiving IVIG weekly, and receiving IV abx, so I am staying hopeful.

 

Thanks for your words of encouragement.

 

Michele

[PowPow]

steroids have been KEY to my daughters' recoveries. (and yes, they are mostly recovered). One lived at a 10 on the 1-10 scale for over 2 years and was at probably a 7 for 2 years before that. I kid you not. every symptom- raging, incontinence, self-injurious behavior, aggression, no hygiene, paralyzing OCD, hallucinations, ticcing, "chorea-like" movements, lost her ability to read, barely spoke, screamed... boy, I hate even remembering it all!

However, today, she is in high school and is relatively normal IT CAN HAPPEN AND IT WILL for you, too. I never believed, when I talked to other "moms whose kids got better" that either their child was as severe as mine and that mine would never get better. But, it happened. Super-duper PANDAS treatments brought her head above water and then intensive residential OCD therapy brought her swimming out of the swamp.

do you have a PANDAS doc?

[Brenda4Alek]

Where are you located and what doctor did you take your daughter to? We are in a 911 with our 20 year daughter that developed PANS at 19 to viruses,. we see an immunulogist but he can do only so much,. Her self injurious behavior is falling on her butt 5.7 155lbs I've already had xrays on her back now may need MRI.

Talk about hurt to injury, she does it when she doesn't get attention. My daughter has all the symptoms you described also they progressively got worse. In her first 2 flares

not so bad but in this last flare to my son's flu (Influ she has all the symptoms. We did IVIG April 24 she got worse. We tried prednisone prior for one week and saw nothing but aggressiveness. I lost my job my 18 year son is about to graduate high school and we can't give him the attention he needs. (i'm sure you know this situation all too well)

Where is your doctor Email me ssulak9883@aol.com

[PowPow]

Where are you located and what doctor did you take your daughter to? We are in a 911 with our 20 year daughter that developed PANS at 19 to viruses,. we see an immunulogist but he can do only so much,. Her self injurious behavior is falling on her butt 5.7 155lbs I've already had xrays on her back now may need MRI.

Talk about hurt to injury, she does it when she doesn't get attention. My daughter has all the symptoms you described also they progressively got worse. In her first 2 flares

not so bad but in this last flare to my son's flu (Influ she has all the symptoms. We did IVIG April 24 she got worse. We tried prednisone prior for one week and saw nothing but aggressiveness. I lost my job my 18 year son is about to graduate high school and we can't give him the attention he needs. (i'm sure you know this situation all too well)

Where is your doctor Email me ssulak9883@aol.com

We saw Dr L in MD for the pex. I am so sorry you are having so much trouble getting her well. my daughters' responded very well to high dose oral steroids ( like 60 mg) - but they did not respond for about 10 days , so had we done only a week or a lower dose, I am not sure we would have seen responsiveness.

They were also neuro-typical before their onsets, both around 10 & 1/2.

I would think that it might be a bit early to be sure the IVIG did not help. What other meds is your daughter on?