PEX vs IVIG

[NMom]

We are coming out of our second major exacerbation and just saw Dr. Latimer yesterday. I was completely expecting her to say we needed to increase his antibiotics or change to another drug...not sure why but was totally blindsided when she said we need to pursue either IVIG or PEX. My son is completely functional but definitely struggling internally with OCD and tics. He takes Augmentin daily and I increase his dosage when he's been exposed or feels the OCD growing. He had a great school year - a couple of minor episodes that stopped quickly - and never interfered wiht his life. This summer we believe he was exposed repeatedly to a resistant strain of strep which kicked off a fairly major episode. Strangely enough this second exacerbation started almost exactly 1 year after our first PANDAS episode. Both started right as school ended so I initially thought this might be due to stress as we wrapped up school and entered into the unstructured summer months. So I suppose I was hoping we were going to manage the next few years on antibiotics and he'd grow out of it and we'd move on...naive I know.

 

Anyway, here we are now..facing this decision and I have no idea whether IVIG or PEX is the right choice...or whether we should do either at this point given that he's fully functional and continued to function through both his previous episodes. Dr. L did not give me a recommendation at all - she did not indicate whether we'd do one IVIG or multiple(believe she generally does several though, 4-6 weeks apart) or what happens if PEX doesn't work. I was a bit in shock while in her office and asked all the questions on the list I carefully prepared before the appt...none of which covered how she does IVIG or whether she would recommend PEX over IVIG.

 

I'm so sad that we are at this point and I know that many of you have probably felt this same way. I'd really like to hear from anyone who faced the same choice and why you'd choose one over the other. I'm also curious whether there is anyone who chose not to do either and pursue other treatments.

[LNN]

We have done both. Much of the decision, sadly, may have to do with whether your insurance co. will cover one or the other. Putting that aside, you need to go with your gut. I don't think there's any research to indicate one works better than the other for all kids.

 

PEX got rid of my son's tics for 18 months. They only returned for about 6 weeks this past spring when we got too aggressive with lyme treatment (which is why neither pex nor one HD IVIG brought us lasting remission). Others will tell you that IVIG produced positives as well. So I don't think your decision can be based on one being "better" than the other, only one being "better" for you.

 

Many doctors feel Pex has too many risks. The biggest is the risk of infection at the site where the PICC line is inserted. But Georgetown does this every day, for many diseases. Those nurses are the best I've ever met. they know their stuff.

 

As I saw it, the biggest risk of IVIG was that it was a human blood product and carries small but real risk of becoming infected with an unknown illness that isn't currently screened for when they prepare the immunoglobulin. There is also often a longer "herx" following IVIG, with several weeks of worsening symptoms afterward.

 

So it's really a matter of which set of risks you feel more comfortable with (and what sort of financial picture you'd be looking at). When we were at Georgetown 2 yrs ago, Dr L only did one IVIG. I don't know if her thinking on this has changed. I wasn't under the impression she did multiples unless it was clear the first was wasn't enough. You may be able to call her staff and ask.

 

Your other option is to wait. There is nothing wrong with that. It doesn't preclude you from doing something later. Listen to your heart. Best of luck with your decision.

[T_Mom]

Hi -- You mention that your son is "coming out of" his second major exacerbation. When you say, "coming out of" do you mean that it was worse earlier in the summer and is now ending? -- or is it becoming chronic, ongoing? I don't mean to ask questions but are his symptoms internalized or obvious to others?

 

The doctor may have said what she said as a result of what your son described as his experience. We did IVIG and it has saved my daughter's life, literally. From ups and downs with Ps OCD (moderate to severe episodes) for over two years, and then the OCD became chronic and she had about 6 months of uncontrollable raging obstinate/defiant (totally out of character) OCD related behavior.

 

We wanted to do pex but insurance would not cover it (we wanted pex initially primarily because the blood-product issue worried me). We then did IVIG, calculating the risk/benefit was definitely worth it...It is my understanding that Dr. K believes that IVIG is preferable. I would do it again in a heartbeat and only wish we had done it 9 months earlier! It is now 12 weeks since IVIG and our daughter is herself again--still healing emotionally from the terrible trauma that the OCD/ODD caused her, but there is hope. She is able to be in control again, and though not 100% yet, her behavior is night and day. I have literally seen this reaction, which, quite frankly, if I had not seen this myself I would have had a difficult time believing it.

[Burnell]

If he is fully functional, I would no neither. Our daughter's OCD has become so bad she can barley walk in public. SHe has to keep bending over to touch the ground or other objects. It takes her 10 min to go what my son does in 2. She is also a horrible bully to her brother. I am seeking more help for her with Dr Storch. once she gets back to functional, I will call the med treatments over.

[eljomom]

It's interesting that Dr. L recommended IVIG/PEX if your child is functioning. She told us it's not off the table, but dd is functioning, and she wants to get tonsils out, etc. before moving on with it if needed. My feeling is that regardless of if a child is "functional" or not, it's the same darn process going on --- autoimmune dysfunction---and the same treatment is needed regardless of functioning. I know there are some lucky people who find remission from abx, but we are NOT in that group. We are chronic. Yet we aren't offered IVIG because dd is functional. At the same time, I'm scared stiff about IVIG....hearing how some have gotten worse on it, because it's a blood product, and because different docs have such different views of it (Dr. K.....one IVIG....Dr. B....repeated IVIG). This makes my confidence level tumble as to which direction to go. Even though we are not being offered IVIG right now, I know we could go to Dr. B or Dr. K and have it handed to us on a platter, so I still wrestle with what to do.....

[airial95]

It's a tough choice - but ultimately a personal one for your family. I'm in the same boat as Burnell. Our son is fully functional right now - does he still have residual symptoms - yes, particularly the OCD and some sensory stuff. But he has leard with CBT and other tricks to manage his anxiety, and bottom line - he's HAPPY right now. Which is why we're reluctant to rock the boat and do anything more heavy duty. If you would've asked me last year - it would be different because we were in a much worse place then.

 

Our bigger issue is how often he's infected - it's constant, yet his immune system shows no deficienies (actually the opposite - on paper he's the picture of perfect health!) With each infection, we have a setback, but the quicker we respond, the quicker he comes out of the episode - with the last one only being a couple of weeks.

 

We're just starting down the path with an immunologist reffered by Dr. Murphy to see if we can figure out why he's getting sick so often (even while on full strength abx), so we might change our approach from there - but for right now, because he's functional and happy, we're not willing to rock the boat.

 

I know my post is about our situation and how we're handling it - but I'm hoping that by others sharing their stories and perspectives it will help you through your own thought process on how to proceed. It's your child, your family, only you guys can decide what's best for you!

 

Good Luck!

[JJMom39]

It's interesting that Dr. L recommended IVIG/PEX if your child is functioning. She told us it's not off the table, but dd is functioning, and she wants to get tonsils out, etc. before moving on with it if needed. My feeling is that regardless of if a child is "functional" or not, it's the same darn process going on --- autoimmune dysfunction---and the same treatment is needed regardless of functioning. I know there are some lucky people who find remission from abx, but we are NOT in that group. We are chronic. Yet we aren't offered IVIG because dd is functional.

I totally don't mean to hijack the thread, but I am wondering if their are additional opinions/thoughts on what one does if one's child is functional, but still has OCD or other PANDAS-related issues that cause problems but not in an extreme way. Perhaps it's something that varies from physician to physician, and then case by case? We too have a child that is functional, but he has not returned to baseline, and that baseline seems to change. So far abx have kept things in check, but we still struggle with nighttime anxiety and adhd issues so we aren't in remission either. Are these things the new normal? Or would more aggressive treatment bring him to a better place? It seems to be a gray area when a child is not suffering in an extreme way, but has issues that cause them problems at home or at school or internally or however those problems manifest for them. How do you know if your child should have more aggressive treatment when they are functional but not "cured" or in remission?? Our dr. looks at IVIG as a last resort of sorts, but I know other physicians view it differently.

[eljomom]

JJMom---Yes, exactly my questions!

[NMom]

Thanks to all of you for weighing in here. TMom - you asked what I meant when I said my son was coming out of an episode. This exacerbation started right after school ended (within weeks of the same time he started an episode last summer) and peaked around early July. I finally clued into a few things including the fact that I do not have any PANDAS support in Houston and had let myself get talked out of PANDAS and into trying other things that were not helping. When I finally incrased (almost double) his antibiotics and stopped all the other stuff he started improving. He's not near baseline at all but vastly improved from early July. However it does seem like the OCD is now becoming chronic and while it's not obvious to others, he is tormented internally all the time. He has told me repeatedly after the visit with Dr. Latimer that he wants to go to the hospital and is ready to have shots, blood work, etc. ... whatever it takes to get rid of the OCD. Big words from a 7-year old.

 

Dr. L feels like the sooner we treat the better chance we have of 'getting rid of this' (her words). I'm sure there are some people who have been cured permanently through IVIG or PEX but I can't assume that will be the case here. So is it worth putting him through a painful, risky procedure in the hopes of getting relief...even if it's temporary? He is fully functional but will he continue to be??? These are all questions I've been asking.

 

We've never tried steriods or had his tonsils removed and I asked specifically about those things and she said no to both. Based on the feedback I've gotten from other Dr. L patients...this seems to be departure from her normal course of treatment. Not sure why but certainly gives me a lot to think about.

[eljomom]

Wow---this is crazy! I know that each child is a different case, but it makes no sense to me sometimes how these docs are making decisions. We have NO strep history other than a couple weeks ago, and we are on the tonsillectomy route. My husband says "we have to do what the doctors say...rule things out." My gut is that taking tonsils will do NOTHING. I hope for once I'm wrong. I don't see how it's going to help the autoimmune dysfunction.