IVIG/PEX question

[Ashlynsmom]

My 11 year old daughter was recently in a very bad episode of PANDAS. She gets the sneeze tic along with severe OCD issues. She sneezed for 7 weeks and just stopped abruptly on Sunday. Leading up to Sunday I had noticed she was starting to feel better and symptoms were getting better. She feels really good today and is back to her old self. Our problem is that we have been fighting wit the insurance company to approve IVIG and I got a call from a docttor today--we were persuing PEX. Trying to get one or the other approved.

 

This question is actually has anyone gone ahead with either proceedure when the child was free of symptoms? Would it be beneficial to do treatment while symptom free or are you not achieving anything? I have different thoughts on this working in my very simple mind and hoped someone out there that understands this dreadful disease could help guide me in the correct decision on what to do for my child.

[Buster]

My 11 year old daughter was recently in a very bad episode of PANDAS. She gets the sneeze tic along with severe OCD issues. She sneezed for 7 weeks and just stopped abruptly on Sunday. Leading up to Sunday I had noticed she was starting to feel better and symptoms were getting better. She feels really good today and is back to her old self. Our problem is that we have been fighting wit the insurance company to approve IVIG and I got a call from a docttor today--we were persuing PEX. Trying to get one or the other approved.

 

This question is actually has anyone gone ahead with either proceedure when the child was free of symptoms? Would it be beneficial to do treatment while symptom free or are you not achieving anything? I have different thoughts on this working in my very simple mind and hoped someone out there that understands this dreadful disease could help guide me in the correct decision on what to do for my child.

 

Wow, tough question. The problem is that if you aren't in an exacerbation, then it's harder for the doctor to justify IVIG to the insurance as necessary -- and more importantly, it's hard for the doctor to show efficacy (in case you would need it again). In addition, there are some risks with IVIG so if you seem in a good spot, I wouldn't mess with it. While I think alot about the comment of the other post "we want to win the war not just get a truce." I think it's a lot easier to recruit all the support when the enemy attacks and harder to get justification during the truce. For what it's worth, continue going for the approval -- you don't have to use it if you get approved, but having it approved is half the battle. You can then refer to the approval later if you need it -- or provide even stronger evidence later if an exacerbation occurs.

 

So my recommendation, keep going for the approval based on prior exacerbations, but don't use it unless you're in an exacerbation. I say this because everyone feels justified when there is noticable improvement. Everyone feels some doubt when the child is either appearing well, or there's no noticable improvement.

 

Buster

[Ashlynsmom]

My 11 year old daughter was recently in a very bad episode of PANDAS. She gets the sneeze tic along with severe OCD issues. She sneezed for 7 weeks and just stopped abruptly on Sunday. Leading up to Sunday I had noticed she was starting to feel better and symptoms were getting better. She feels really good today and is back to her old self. Our problem is that we have been fighting wit the insurance company to approve IVIG and I got a call from a docttor today--we were persuing PEX. Trying to get one or the other approved.

 

This question is actually has anyone gone ahead with either proceedure when the child was free of symptoms? Would it be beneficial to do treatment while symptom free or are you not achieving anything? I have different thoughts on this working in my very simple mind and hoped someone out there that understands this dreadful disease could help guide me in the correct decision on what to do for my child.

 

Wow, tough question. The problem is that if you aren't in an exacerbation, then it's harder for the doctor to justify IVIG to the insurance as necessary -- and more importantly, it's hard for the doctor to show efficacy (in case you would need it again). In addition, there are some risks with IVIG so if you seem in a good spot, I wouldn't mess with it. While I think alot about the comment of the other post "we want to win the war not just get a truce." I think it's a lot easier to recruit all the support when the enemy attacks and harder to get justification during the truce. For what it's worth, continue going for the approval -- you don't have to use it if you get approved, but having it approved is half the battle. You can then refer to the approval later if you need it -- or provide even stronger evidence later if an exacerbation occurs.

 

So my recommendation, keep going for the approval based on prior exacerbations, but don't use it unless you're in an exacerbation. I say this because everyone feels justified when there is noticable improvement. Everyone feels some doubt when the child is either appearing well, or there's no noticable improvement.

 

Buster

 

 

 

 

Great thoughts as always Buster. I value your input very much even though you do not know me--I read alot of things on this forum. Please continue your thoughts--my questions are not to disbute but to try to find answers and I value your thoughts!!

 

I am going to request titers drawn tomorrow--the last time she was free for 2 months her titers where still rising strangely enough.

 

One thought presented to me is that with IVIG--she is given healthy antibodies and therefore may get her immune system healthy over the summer when not exposed to so much strep, therefore maybe helping the 'dreadful sneeze' not return. I am so confused over all this to whether this is the case or if its primarily to stop an exacerbation while it is occuring?? Is this in hopes of a cure or kind of a band aid? Another thought is choosing IVIG over PEX at this time because of the reason stated above instead of "cleaning" plasma of unhealthy antibodies which wouldn't be as present if not having exacerbation?

 

I do agree with you also because I am ALWAYS the one that says if it ain't broken don't fix it! With your knowledge as of now---She has been batteling this for a year this month. The last time she began was about 9 weeks ago--Symptoms started abruptly and the sneeze started and symptoms intensified to be the worse episode she has experienced--Do you believe it will return even worse again or do you believe there is a chance it won't return? I honestly don't know what would happen if it gets worse and I would do anything I had to to keep that from happening! This sneeze occurs every 2 seconds as long as she is not in a deep sleep (which doen't happen often)--she can't talk, can't take a deep breath, can't sleep, etc.

 

Gosh I wish a stone tablet would fall on my head with all the answers and tell me exactly what to do for my child!! Thank you for letting me pick your brain as I feel sometimes I am all alone down here in Louisiana!

Edited May 28, 2010 by Ashlynsmom

[Buster]

Gosh I wish a stone tablet would fall on my head with all the answers and tell me exactly what to do for my child!!

 

I wish for that too, unfortunately, hasn't happened yet.

 

Unfortunately IVIG is just too broad a treatment to know what it is exactly doing. Plasmapheresis is much better understood, but it is primarily a filtering process that reduces the concentration of antibodies. If there is still an antigen, then the antibodies will likely return. With IVIG, it's more complicated and less understood. It's not clear whether the IVIG is adding back regulation (i.e., suppressing antibody binding), whether IVIG is exhausting T-cell recruitment, whether IVIG inhibits superantigens, is tagging the bacterial antigen for phagocytosis, or whether IVIG is suppressing cytokines, .... They really truly don't quite know what is happening in IVIG.

 

For other diseases, auto-antibodies turn over (i.e., have a half-life) of about 21-28 days. This means that in the absense of a trigger about 75% of the antibodies should be gone by 6 weeks. If this is what happened in your child, then PEX (or IVIG) won't dramatically change the antibody numbers. PEX can more quickly reduce antibodies, but only if almost immediately after the antigen has been removed.

 

If the reason the symptoms have stopped is that the blood brain barrier closed, then it's possible the antibodies are still circulating but not crossing the BBB. PEX could potentially help, but if the antigen is removed, then the antibodies would turn over on their own (given time). If the Antigen is still there, then PEX won't be a long term treatment.

 

IVIG might (please note the underscore) help tag a bacterial antigen if it is still active and thereby help the immune system find and destroy a bacterial antigen. However, this is again a really brute force way to clear an infection.

 

I wish we had the stone tablet.

 

Buster

[Megs_Mom]

Hey - I don't have great advice for you - but did want to send you my sympathy on this. I know how hard it is to make decisions about care when they are suddenly good again! Our daughter did not have a tic (that sounds really awful - poor kid), but did have severe OCD. Since her remission last September, we have been able to manage the subsequent 3 onsets with an increase in abx, and each episode has remitted in about 3-5 days, and has been milder overall. It is possible that these were just minor onsets, but it certainly seems that the abx is helping her maintain. After each episode calms we return to the lower dose gain without ill effect. We have also been able to use motrin quite effectively during the 3-6 days.

 

We have tons of questions without answers too. But all in all, her life is much better, and we have been unable to justify IVIG while she is relatively well.

 

Good luck with the decision - I hope you get approved, even if you don't use it right away. Enjoy this time of calm as much as you can.

[Doug]

IVIG has helped alot of kids...

if you have the right doctor.

Is it a cure?

who knows,but it does help

at least for us it did

but my dd is only 5

it is a hard choice to make

Tracie

[tpotter]

Even though she's not currently sneezing, the toxins are still there. If you wait until she has another episode, you're probably going to have to wait to go through another round of insurance fighting, which will probably take just as long. My son had IVIG first, and within 1 month, ALL the symptoms were back full force. By the 2nd month, with all the symptoms still there (not saw-tooth), we did PEX. My son reports that there were significant differences in the way he felt, too. The PEX lasted a good 6 month. We really are needing to repeat it now. And, even as bad as his symptoms have gotten this time, they are nowhere near as bad as they were when we first did the IVIG and then the PEX...it's been just short of 1 year since the IVIG (but, I also don't want to wait until they get that bad.)

 

That being said, my feeling is that, if you have the option...do PEX first, then do IVIG. Dr. K. says that if you do PEX, you need to follow it up with IVIG within 1 month. I completely agree. Get rid of the toxins quickly, then 1) help the immune system fight what's left, and fight off new infections, and 2) close the BBB. This is just my opinion, but that's also based on the way my son was able to express the difference in how it helped him.

[wornoutmom]

OMG - I want that stone tablet SO bad!!!!!!!!!!!!! I am busy trying not to obsess about this very question. My son seems to be improving on Biaxin, and each day that he makes some progress I question our scheduled IVIG (June14th) more and more. Then he'll have a panic attack or get "stuck" and I think we have to try it for his sake. But then I think maybe we just need to keep going with the abx. I think our situation is more confounded by the fact that our insurance will not cover it, and so we have to pay $12,000 for this and I wonder if we do it now while he's on an upswing if that might bring his baseline up higher in the end, or if we are wasting our 1 shot (we can't afford more that one at the moment...) and we should wait to see if things get really severe again like they were Dec-March. But then who wants to see him have to go through THAT again. But then if IVIG is not a "cure" but a cooling off, who's to say he won't go through it again anyway? I think I'm starting to understand how my son feels when his thoughts are spinning in circles!!!

[Ashlynsmom]

All of this is very informative!

 

A few thoughts---My dd's doctor's here (going to a new one Thurs) do not feel the antibiotics work since her titers continued to rise and she started the symptoms while on high doses. Some battles are not worth making doctor mad over--Is the antibiotic issue? The primary care continues to site journals that do not back up the use of abx.

 

Therefore, I guess it is safe to say she got out of this excerbation on her own--she hasn't been on meds in about 6 weeks. Does anyone think this leans toward her getting better? How else would she have gotten rid of the antigen unless bodies immune system kicked in? Or is the antigen prolly still there just not as many antibodies fighting so symptoms lessening?

 

Is it only maturity that closes the BBB?

 

I am given hope that some of your children have gotten better after these proceedures! Please continue telling stories that contain hope for us that are in turmoil at this time.

 

If anyone has more thoughts for me please keep this going--I will be out of pocket a couple of days but will try to check in.

 

wornoutmom--please let me know your decision and how it goes for your son whatever you decide.