Cold Feet w/ IVig, help me out friends!

[beeskneesmommy]

DS6 is scheduled for IVig in a little over a week w/Latimer. Of course, he is doing so well right now as the fates would have it. I am so fearful of this next step, although we have exhausted all other lower levels of ntervention. He presents as a mild case in that he does fine for periods of time (w/some minor tics and chorea, OCD), but every several weeks takes a dive into worse symptomology like more significant OCD, irritability/oppositional behavior and "brain fog". This can last for a couple of weeks before he starts coming out of it and he has had to have steroids this year twice to push him out of it. Here's the thing: we could all live with it the way it is - he would suffer socially as he gets older to some extent, and we would live the roller coaster, hoping that he continues to get better as he gets older. There is no doubt that he has improved greatly since his major episode post T&A in 8/2010. However, he has been on strong abx for 2+ years, daily, which worries me as well. I have little doubt that if we decreased the abx significantly, he would go down hill.

 

SO, please, give me what you got! Am I doing the right thing?? Can IVig actually hurt a kiddo in this situation of more mild presentation? I am living every minute worrying about doing the wrong thing - somehow hurting him or making him sicker w/IVig. I have lost him, and mean really lost him for periods of time in the past, and I have (perhaps irrational) great fear that somehow the IVig will make me lose him again, for good.

 

There is it. My worst fears laid out. Please respond and tell me what you think...

[1tiredmama]

Oh, my... Honestly, I can't speak to IVIG itself because it is out of reach for us financially. I can speak to something else that comes through in your post. I hear you minimizing your ds's condition. I'm not faulting you for it, trust me. I recognize it because I do it here a lot. Dh will remind me that if someone outside of our family were to come into our home and observe what goes on here, they would not believe what we are dealing with. You see, your normal, our normal, really isn't the norm. Yes, our kids get better and worse, but they are just shades of atypical. All is NOT well.

 

If you can get past any risk IVIG might bring (if any,) then don't let ds's "break in the action" stop you. Besides, do you really want to wait until the next slide and take an oppositional kid to an IVIG session? I have two with PANDAS, I've seen ups and downs. The downs may change over time, but they have not gone away, and as the kids move into adolescence it gets harder. I wouldn't wait. If Dr. L. has ordered IVIG, she must think he needs it and can benefit from it.

 

PS. I think second-guessing goes along with being an intelligent and good mom.

[kos_mom]

Agree with 1tiredmama abount minimization. Sometimes I feel I have done nothing but define normal down for the last 14 years or so. In the last four months we have had one six day hospitalization, one week-long stay in the psych ward, nine trips to the emergency room--one in an ambulance, a couple of seizures that I just waited out, one T and A, and at least 25 doctor/therapist visits. And my kids are 19 and 22! Perhaps three times in all this a medical person has asked me how I am holding up under whatever the crisis de jour is. All I've been able to say is that this is just one on of so many things. Very kind of them to ask; the underlying message is that the person, a medical professional I emphasize, could see how that just one thing could be very stressful for a parent. And we are dealing with multiples of that one thing every week--believe me other parents don't go through this and even the most sympathetic can have only the smallest insight into what we live every day.

[LNN]

Bees - I can't remember - what's your lyme situation? Your comment about a flair every few weeks and a feeling he'd backslide without abx made me go "hmmm..."

 

I totally get your fears. I had the same ones. We did IVIG after I felt I'd exhausted all other options - that it was the only thing left and I couldn't live with the guilt if I didn't do everything. We had done a Quest lyme test and all bands negative. So I felt we'd ruled out lyme and did IVIG 2 yrs ago. It was not a good experience. It was actually one of the worst 10 weeks I've ever lived through. Turns out there was lyme and it was a long, unsupported herx. My son regressed a great deal and I'm still left with a lot of PTSD.

 

But that said, it did not cause any long term or permanent harm (except on me). He recovered and then went on to pursue lyme treatment and has made huge strides. Looking back, we did have other options and there are other ways to hep the body. But it depends on what you've already been through and on many individual factors. Do you have the stomach for more docs, more tests? Would you regret not trying IVIG first before going down a different path? Or would you be happy to explore other things, with IVIG reserved as a "last resort"?

 

There's no right answer (IMO). One thing works for one family and a different approach works for another family. Both may help a child get healthier. But I'd spend some quiet time really listening to your gut. Imagine the phone rings on Monday and IVIG is cancelled. Do you feel immense relief or disappointment? I can talk ad nauseum about what ended up helping my son and to do it over again, I wouldn't put him through IVIG. So if that's the sort of story you want to hear more of, PM me. But I can't tell someone else that they shouldn't do it. There are a lot of kids who've been helped with it, even ones with lyme. So in the end, you need to follow your own gut on this one. Best of luck with your tough decision...

[nicklemama]

I would point out that while your DS may present as a "mild" PANDAS case, there is no guarantee that it will stay "mild". Our DS had been diagnosed and on abx for 7 months prior to ivig. When we took DS to see Dr K, we actually told him we knew he wasn't currently the worst case he'd ever seen and how much better he was since starting abx that Dr T prescribed. He still recommended ivig. We had no idea how much it would improve him and how many behaviors he actually had that stopped after ivig.

[PANDASmcnuggetsw/fry/coke]

My heart goes out to you~ big time. We have had two IVIGs and I don't regret it. Didn't get her to 100% at all, but still glad we did it. We still sometimes consider a third. I pray you get peace about your decision and that fear is dispelled.

[dcmom]

Hi Bees-

 

I think we all feel for your situation, as we have all been there. To be honest, sometimes it is hardest when they are "mild" (mine have had times of mild symptoms and devastating symptoms). When they are incapacitated, there is no choice, you do whatever you need to. But, when things are okay- it is very scary. I am constantly feeling this to some degree (ie. I see a day or two of almost imperceptible pandas- do I jump on it? do I ride it out?)

 

I don't think IVIG is a cure, and I think most feel that way now. So, don't go into it thinking that- or you could be totally disappointed.

 

We have not had IVIG- so I cannot speak to that. Certainly I would at least be prepared for a worsening for some period of time after the IVIG. Whatever the reason, that does seem to be the case for many. Then, I do think it can take up to a year for things to heal and calm, so maybe you should not expect immediate results.

 

How long has this pattern been going? Is it a definite pattern, or do you think it is due to exposure?

 

I have not seen a pattern with my kids, other than they flare with illness, and sometimes exposure and loose teeth. I agree with LLM- that I wonder if a pattern could indicate lyme (and if you read my posts, I am not really someone who suggests that too often).

 

How long has your son been on antibiotics? My kids are off, but we did not try to take them off until they were on zithromax full strength for two years.

 

In general, I do think it just take some time for the immune system to calm and get to 100%. Are you seeing general, gradual, improvement when you look at things over weeks?

 

Both of my girls had PEX- and it brought them back to baseline- which was a miracle. It has also helped us to really know what the baseline is (yes, basically perfect, all their sh#% was pandas), and we have been able to really JUMP on things if we see them going wrong. The farther from baseline, the longer to return. Maybe IVIG can do this for your son.

 

In the end, if you are not seeing improvement, I think I would go for it. If you are seeing improvement- there may not be harm in postponing.

 

Good luck- whatever you decide you can do so with the knowledge that you have gone to the wall for your son (and you will continue to do so), and because of that, he will be okay

[beeskneesmommy]

I am actually presenting my son's symptomology quite clearly and exactly as it is. We have not lived a terrible, chaotic home-life for a long time, although we have in the distant past. There is no set pattern. he has gone for weeks having low symptomology - minor tics and easily tired w/manageable OCD. 2 years ago, he got really bad with a major episode right after a Strep infected T&A w/no sterilizing abx. He has had a saw-toothed journey since, but has most definitely made huge steps forward. I have to really work at it to remember the horrific times when he was really sick. He has not been that bad for well over a year. This week the only thing I see is some minor OCD (doesn't like it when his fingers get sticky when eating finger food), intermittent irritability, and a very persistent breathy exhale tic that started out of the blue last April, along with some pretty mild hyperactivity. I know mild and I know severe because when he gets really hyper, he is literally bouncing off the walls. This does not happen often but is really hard to live with when it does.

 

Re: Lyme, He was on the border, and I mean really on the border with Lyme thru Igenex July 2011. I think there was 1 band that was a Lyme ID (39?). This was igg. He also had a 40 for Bart (again, right on the border) igg. He was on Augmentin and Azithromycin from July 2011 to the present (still on it) and recent long culture tests in May were neg for both. The numbers were never very impressive, from what I gathered.

 

He was always classic Strep:PANDAS - I would see the behavior and take him in for a test, and he would be +, every time. After the had his tonsils out, he left the hospital with a sinus infection which turned into walking pneumonia a month later - he cleared up w/Z-pack and tested + for Myco igg a couple of months later whereas he had not been + previously. We deduced that the walking pneumonia was when the Myco jumped in. Igg has stayed at around 130 but never any Myco IGM.

 

He has, over time, morphed into more PITAND. I am absolutely able to trace his flares to Strep, Pneumonia, Coxsackie, and other "bug" exposure at school. He flares and I almost always get that call 1-3 days later from the principle telling me that something has been present in a class mate. In addition, I have been dealing with elevated Strep titers since March and I am now on my 3rd run of 30 day Augmentin. I definitely notice that he looks great when I am taking the abx. Hmmm.

 

The most recent addition to the "team" has dx him with Sydenham's Chorea, indicating to me that he had Rheumatic Fever. This is a very strong possibility as he had tons of Strep, over and over betw. the ages of 2.5-4, prior to getting the T&A. I am sure that he had undiagnosed Strep several times prior to age 2.5 when I recall the same type of fever and symptoms, but the ped never tested him until I asked them to at age 2.5 when he presented for the 1st time with eye tics after yet another fever.

 

I feel that we have exhausted all lower levels of intervention. I am just fearful of IVig as it is such a big step. I suppose that Lyme could be a possibility, and I am glad to hear that there was no permanent damage when you (LLM) went that route with your son. Sounds like a horrible situation for an extended period of time, however. I have heard of people doing IVig when they know that their kiddo is + for Lyme. Is this contraindicated?

 

Thank you all - Kath

[philamom]

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Edited September 10, 2012 by philamom

[cobbiemommy]

If Dr L, a very knowledgable doctor in this field, recommends IVIg, I would do it. Sometimes the symptoms of PANDAs wax and wane. You could be in a waning period at this time. If someone had told me when my son was six how bad our homelife would be at 10-11 years old, I would not have believed them. At six, his problems seemed mild and controllable, but not out of control. By age 10, I was flat out desperate for answers to his medical situation. He is thirteen and we are still uncovering pieces of the puzzle, but he is so much better (especially yesterday and today).

 

My point is that you don't want to end up like some of us Moms and families: estranged from family members, afraid for your other children, spent all your savings on treatments at a later date, or scared of your child's physical rages and sheer size. Get the IVIg. You will be able to deal with any consequences with the help of a good doctor and support staff.

 

With plenty of hugs as you make your choice,

Cobbie

[LNN]

For those of you who've done it as a way to support your child's health as opposed to having the goal of a "cure" - would you do it if it was out-of-pocket and your child's flairs were getting less severe over time? I believe this is Bee's situation. Personally, I could not afford $5-7K on something that wasn't going to knock things out of the park.

 

Bees - some of the things you post are similar to my DD (not my DS, whom I tend to post about more often). She too was vague on Igenex with only 41 and 39. We too did 8 mos of combo abx (zith+bactrim) and while her C3d complexes did drop from 90+ to 20+ (which is now considered in the normal range) - suggesting some sort of infection was cleared...her PANS symptoms continued to wax and wane. So it made me dig beyond infection and become a methylation geek. Treating her MTHFR (after completely screwing it up for a time and overdosing her into a complete witch) has brought her to a great place (knock wood).

 

I love Dr L. Could go on and on about how I respect her and her knowledge and genuine concern. But there are some issues not on her radar. Methylation seems to be one of them.

 

None of us can possibly give you the "right" answer. if you do decide to go forward with IVIG, please consider a good post-treatment plan that focuses on inflammation, detox and methylation (regardless of whether your DS has any MTHFR mutation). If you decide not to go forward, please consider these same things. Best of luck with whatever path you choose.

[sf_mom]

Our older DS had 3 hdIVIGs for PANDAS. His last treatment was January 2010. In August 2010 we discover Lyme et al that included Parasites, high viral load, KPU and co-infections, etc. Although we found the hdIVIG to helpful the treatments were not a cure (like others have stated but they gave us a lot hope that he could be much better). We have continued to make further gains treating each specific issue related to our son's condition that was well beyond auto-immune and strep. He has experienced extended 'herxheimer' responses to both hdIVIG, specific combinations of antibiotics and herbs which have lessened over time and treatments. He maintains a high level of recovery and responds to 'new' bacterial infections and viruses with a normal immune response but not done with treatment. The true test of his recovery/remission will be once he completes treatment and is off antibiotics fully.

 

As I type, I am reading LLMs more recent post and would agree. No matter your decision regarding hdIVIG or Lyme treatment a 'good' integrative LLMD that understands things like heavy metals, mold, methylation, KPU, viruses, chronic infection, parasites or just a good DAN/integrative Dr. might be great addition to help evaluate some of these other issues that are not addressed with Dr. L. These Dr.'s are out there, some better than others but honestly extremely helpful when they are good and hopefully local. We see two LLMDs (one because he specializes in ART testing) and recently added pediatrician/DAN.... all three understand Lyme et al, PANDAS/PANS and Autism.

 

Recovery is a journey and wishing you all the best in your decision.

Edited September 9, 2012 by SF Mom

[beeskneesmommy]

It seems on this forum, there are more people who have negative things to say about IVig. Also, this is the first that I have heard of 8-10 week "herxes". I have had mostly positive responses on other sites from parents who feel that IVig has been very helpful. Not sure what to make of this?

[nicklemama]

To answer LLM's question, we went into IVIG thinking it would not be covered and it was going to cost us 10K. We paid upfront and had them submit to our insurance. They paid and we got reimubursed less our deductible. We also reached out of pocket that year and the rest of the year, 7 months, our medical bills were covered 100%. We would do it again and may, in fact, have to. Its not cheap, even w/ our insurance coverage. I think the first time it cost us 4K and we are not wealthy people.

[beeskneesmommy]

Yes, neither are we. We are paying OOP as Cigna has denied x 2. Yes, it IS expensive! Let's hope things change when the anticipated "paper" comes out!