Would you consider Plasmapheresis?

[Dedee]

My daughter has been in a major flare for six months. It has been life altering for our family and quite frankly feels like our entire world is falling apart. I know you all understand. She is postive for mycoplasma and we thought we had the answer when we got Azith cream (she won't take meds by mouth). The Azith cream has helped in some areas but she still has debilitating seperation anxiety and OCD. We are traveling again this week-end to see Dr. Murphy in Florida to follow up on how the antibiotics have worked. I found out this week that my insurance specifically says it will not pay for IVIG for PANDAS but does pay for plasmapheresis. If we could fit her in another immune deficient catagory we could probably get IVIG paid for but so far we haven't been able to meet those criteria.

 

Our issue is that we really need to do something NOW. Not trying to dramatize the situation, but honestly I don't know how much longer we can live this way. It is tearing our family apart. Our other two children go to school every morning and bed every night after hearing major screaming and raging and then hear their mother crying. They hear their parents argue. The stress in our home is unbearable. My poor little girl knows she is the cause but she doesn't know how to control it and she will cry and say how she hates herself and she knows we hate her too. It is all so heartbreaking. I try to stress this all to the doctor's about how urgent this situation is but they just act like I am over reacting. My child needs help NOW. Something drastic has to be done...

 

So taking that all into consideration, I was thinking I might should push the PEX issue. I haven't heard very many of you who have used it and I don't want to make the wrong decision in my current state of mind. So please, those of you who are thinking more rationally than I am right now, please help! I need your thoughts and opinions. Thanks.

[peglem]

In your situation I'd do PEX.

[LNN]

I think there are still at least a half dozen parents here who've done pex. It was a positive experience for us and brought a temporary remission (temporary because we later learned there was a chronic infection). I don't know that it would bring an end to your struggles, so long as the myco infection is on-going. But I do appreciate how serious your situation is and even if it gave you a reprieve so that you could make better progress on her ability to take medications, I think that would be a big step forward.

 

The one consideration is that in order to insert the picc line, they first have to insert an IV line into the hand so they can administer propofil (which puts her to sleep for the Picc line insertion). How is your daughter going to handle the IV line, given her fears of medications (the IV line stays in for the duration in case they need to give other meds)? One thing Georgetown has become extremely cautious about if a child has any risk of getting violent (and ripping out the central line or harming staff). Is your daughter able to handle the situation?

 

If you do get the green light, I might advocate for IV antibiotics while she's in the hospital (you'll have the PICC line in anyway). I'd also be prepared with some detox aides, because a sudden/strong shot of abx would likely cause a herx-like reaction. Then if she got to a better place following pex, I'd be prepared for a full-out ERP campaign to help her take meds on an on-going basis. IMHO, the pex is more likely to help you get to a place where ERP/abx can be effective. I don't think it will help you clear the myco or totally end the war.

 

Are you still planning to do the summer program? Do you have family nearby who can help you with your other kids? You're right - the toll on them is equally hard. I know you'd prefer to be able to give them all exactly what they need, but since that's about impossible when one child is so sick, anything you can do to surround your other kids with "normalcy" helps, even if it has to come from other people at the moment.

 

My heart breaks for you. I think anything you can do to bring relief is a good thing, so long as it doesn't cause too much financial strain.

[dcmom]

Dedee-

 

I cannot see where you have anything to lose with pex.

 

Both of my girls had it, and it was a miracle for them. It did not cure pandas, but put a COMPLETE end to the episode they were in, and we were able to resume a happy life. So far, fingers crossed, we have never seen days as dark as those prior to pex.

 

We are relatively sure they do not have an issue with chronic infection, and that their issues are mostly autoimmune based.

 

If mycoplasma is still positive, you may not maintain gains for too long after the procedure, but like LLM said, maybe long enough to get treatment for the myco really rolling. Also, if you can document improvement for pex, maybe you would have the option to do it agian after the myco is cleared. The other thing with myco, I don't know, but I am not sure if testing is definitive enough to be sure she has an active infection.

 

Unfortunately, I would think pex would give you some clues as to what is truly going on with your daughter. There really is no negative effect of pex- it will either help tremendously and quickly, or it will not help.

 

I wish you some peace. My kids have not gotten as severe as things sound for you, but we have been close, and I do understand how this can tear a family apart. The longer it goes on, the harder it is for the wounds to heal. I think if you can get pex, and get it covered, I would give it a try.

[Dedee]

See, I agree with you. I keep pushing for IV antibiotics because I really want to hit this infection hard and then IN ADDITION to addressing the infection I would like to consider PEX. But when I talk to my neurologist about the infection and treating it, he just acts like it isn't a big deal, just give some antibiotics and that's that. But if she isn't getting better what then? He thinks a PICC line is extreme right now. Umm, hello, I am living extreme! Why don't they understand???

[LNN]

If you put 20 doctors in a room, chances are you'd find at least 3-4 "camps" who felt one way or another about a topic, based on their own experiences. A few might even have completely opposing viewpoints, with evidence to back up their positions. So if you and your doctor don't see eye to eye, are you "doctor shopping" by looking for someone who understands what you're going through, or simply finding an equally legitimate "camp" where you can get help for your child?

 

If you aren't in synch with your doctor on this and since you seem to have both clinical and lab evidence to support your line of reasoning, it may be time to find a doctor who can support you, not be yet one more obstacle. Have you been to Dr L or were you going to try to do pex thru another doctor? Your reasoning makes sense to me.

[Dedee]

dcmom,

 

Do you think it would be wiser to treat the mycoplasma longer before the PEX? She had both the mycoplasma IgG and the IgM antibodies elevated and the docs seemed to agree that it is an active infection. Only one of her strep titers were slightly elevated (ASO) and AntiDnase B was normal, so it would seem that the issue is the mycoplasma and that it was activated by the flu mist that she received in november (when the symptoms started). This was the explanation I was given by the pediatric neuro. We had the entire family tested. One of my sons was positive for IgG and IgM mycoplasma and the rest of us were negative. No big suprise that the positive son is also in a minor flare. My son that is negative for mycoplasma was positive for both strep titers (go figure).

 

So I hate to jump the gun out of desperation. Should she should have a few weeks or a month more of antibiotics to optimize the effects of PEX? The thought of another month like this makes me sick. I know I need to be thinking of what's best for my daughter right now but how can living like this be best for anyone????

[SSS]

I don't know if this helps you at all, but I can relate very much to your post.

I did the IVIG's out of desperation, too- my entire family was (and had been for a long time) severely affected by my dd6- especially her little sister. It was really, really unhealthy here. Violence and terror, not to sound dramatic.

I don't regret it for a minute. We are seeing improvement, things are better, going to a big gun treatment. I couldn't bring her back w/antibx. and the steroid burst. I see us bringing her back now. We are all hopeful, and it is different in our home now.

Sending PV's----

[Dedee]

Well, our PANDAS doctor is Dr. Murphy in Florida. We went to her with our first son several years ago. He was no where near as bad as our daughter. She has moved since that time and now it's quite a drive to get there. She is very good but maybe not as aggressive others. We go back Monday for our next appointment. Our pediatric neurologist doesn't have much experience with PANDAS but is a believer and follows Dr. Murphy's recommendations. They have talked on the phone a couple of times and he says he will be glad to follow what ever she suggests. We don't have many options in this area as far as PANDAS believers that take insurance (unfortunately, that is a huge consideration here). I think if I can't get some sort of aggressive plan when we go this time I will have to look at switching doctors. Do you know if Dr. L. is taking new patients now?

 

My daughter has had IV's before. She does get wild when they try to put them in. Takes several people to hold her down. Lately they have been giving her nasal versed. It is amazing. Of course, she wont take it by mouth so they have a little spray they squirt up the nose and in about three minutes she is calm as can be and they slip the IV right in. I ask for it every where we go now. Unfortunately only a few (large children's) hospitals have it. Once the IV is in, she won't bother it. It's the anticipation of pain that freaks her out. Drawing blood is a major ordeal. Her reactions to everything are so overly exagerated. So anyway, I just pray for some sort of answer at this appointment on Monday. Please, Please, Please........

[tpotter]

If you can get immune deficiency in the diagnoses, and they will also pay for IVIG, I would HIGHLY recommend that you get PEX followed immediately by IVIG. We have done both, and both of my boys are in agreement that both needed to take place (we did PEX separately from IVIG,) and now have done 4 IVIG's. They got immediate, long term relief from the PEX. The IVIG has not helped them as long (it might in the long run, but PEX did more, and for longer.) Even if there isn't an ID, I would try to push for both. Otherwise, insurance may have to keep paying for the IVIG.

 

I also agree with LLM that you should try to push for IV abx while the picc line is in. My DH (now 15...then 13) got the most complete relief when he was given IV abx for 4 days as an inpatient in the hosptial (they thought he had ARF.