3 wks Post 2nd IVIG

[GraceUnderPressure]

Hello all! Haven't posted in over a month as things have been more stressful than usual on the homefront. Just wanted to let you all know how it went & hoping for feedback

 

A summary of our case for background:

My ds19 has tics generated by compulsions.

So far he tests negative for strep, possible for myco p (ambiguous results), and positive for Lyme.

He is taking zoloft and zithromax.

He received IVIG treatments on Apr 28th and then again on May 29th (1gm/kg for each)

 

After the first IVIG, my ds19 had the headache & threw up about 24hrs later, but then was improving - only a little bit, but it seemed to be increasing a bit more each day for the first week. Then my ds8 caught a cold-type bug and ds19 started having some tics again.

 

They were tics we hadn't seen in a while so I was hoping it was just a turning back the pages kind of thing, but then in another week or so, ds8 got sick with a stomach bug where he was throwing up (don't know if it was the first bug or he picked up a new one, but ds8 is my other child who shows PANDAS-type symptoms & he gets sick a lot). We had the 2nd IVIG on the tail end of this barf bug going thru the house, & we had less side effects (headache, but not as bad, and no throwing up), but we have seen no gains at all.

 

My ds19 was losing all of his gains. We're seeing a lot of tics that we hadn't seen in a while, but it is also definitely a worsening so I don't think we can call it 'turning back the pages' really.

 

We had been on the herb called lomatium prior to IVIG, but we ran out & I thought the zithromax was keeping things in check with the Lyme. Apparently that was a big mistake. My son has been telling me all along that the lomatium has helped him the most, but I thought it was the zithromax & that the lomatium had just boosted its effects or something. I started him back on it about 2 wks ago & we're starting to see incremental improvement again, so it looks like he was right, & it's the other way around (zithromax boosting the effects of the lomatium).

 

Dang, these set backs are hard. We were finally seeing improvement after so long of everything making him worse, & then to lose it, argh!

Our appt with the LLMD in Louisiana is this Monday so hopefully we'll be able to get back on track.

 

[in the meantime, United Healthcare is contesting coverage of the 2 treatments as 'diagnosis inconsistent with clinical picture' (presumably because ds19 is a PITAND and they will only cooperate if it's strep) and they're currently arguing with the dr's office (who is out of the country on vacation right now). Anything I could or should do before we get smacked with a bill for $25K?]

[kimballot]

Grace - I am sorry to hear that this has been a bumpy road for you. UHC has been good about covering IVIG for our kids, but it sounds like they are going to look closely at the PANDAS diagnosis. Has your son had his exacerbations linked to strep in the past? Do you have that documented? The Swedo 1998 study (the first 50 cases) talks about kids having triggers with other infections after they have a strep-induced PANDAS exacerbation. That may help make the case that this is still PANDAS.

 

Also - have you had you son's immune status checked? If there are IgG immune deficiencies, it may also make your case. Many kids with lyme do have deficiencies, so it is quite possible your son does. I don't think it will help if you have them drawn now, but if you did have them drawn in the past I would add that to the diagnoses.

[LNN]

Grace,

I'm sorry your absence hasn't been due to dancing on the table, celebrating success. Wish there was some magic answer...

 

A few things came to mind while reading your post -

First, how long has DS been on zoloft? Is it possible the dose to too high and is activating, rather than alleviating his anxiety?

 

Second, are you doing anything for detox? IVIG may be helping the body fight the lyme and the die off could be causing a strong herx response. Things like milk thistle (if you're not allergic to ragweed), bentonite clay, charcoal, lots and lots of fluids, chlorella - are good tools for helping the body clear toxins. You can post on the lyme forum for more discussion.

 

Third, and this is only to keep in mind if things don't resolve...my DS had a very adverse reaction to IVIG. He seems to be in the minority, even among the lyme kids getting IVIG. So I've been looking for explanations of why, and why he goes into a Pandas/Pitands episode whenever we treat the lyme too aggressively. These links might be helpful http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html and http://www.survivingmold.com/diagnosis/the-biotoxin-pathway (similar info presented in two slightly different ways). We've tested my DS for HLA and MSH and will get results next week. The results may change the way we fight the lyme, with a much greater emphasis on detox rather than big guns/take no prisoners...

 

One other link I've found very interesting is this one - it's quite long, but gave me lots to consider...

http://bacteriality.com/2008/05/26/biofilm/

 

The most important thing to hang onto is that you've seen changes. You've had glimpses. As gut wrenching as this is, try to remember that and fight for it. I hope your appt. next week goes well!

 

Laura

[GraceUnderPressure]

Thank you, Kim & Laura! I'll look at the links when I get back from my errands I'm about to run.

He hasn't been experiencing increased anxiety with his tics. I had thought of dropping him from 75mg to 50mg, but am afraid of rocking the boat any more right now. I figure I'd better wait till we see the LLMD since it's this Monday.

 

Unfortunately, ds19 has no positive strep in his records - but then he rarely gets sick (& when he does it's low key), it's always been his condition getting worse instead, so why would I have thought to run to the dr's office to get him tested when PANDAS wasn't even on my radar till a short time ago?

 

His Cunningham tests came out just below mid-level PANDAS, but those aren't recognized by insurance, right? We figured that even if the IVIG didn't help ds's tics, at least it should help with repairing some of the damage of long term inflammation in his brain. I thought it might be worth looking up that study & throwing it in there for their consideration, but suspect that insurance will only care about clinical research directly relatable to my son's type of PITAND.

 

This is depressing. My DH is about to get his hours cut again, we've already been wondering how we're going to afford whatever the LLMD wants us to do & now we have a $25K bill looming over our heads, too.

[LNN]

Grace,

You may want to try this group

http://www.advocacyforpatients.org/hi_ivig.html

 

IVIg Patient Resource Center

 

Advocacy for Patients is creating this IVIg Patient Resource Center to assist patients whose physicians prescribe intravenous immune globulin (IVIg) to treat a wide range of illnesses, for which insurance companies may deny coverage. Our goal is to empower you by teaching you how to file a winning appeal to convince your insurer to cover IVIg for your medical needs.

 

Most often, when an insurance company denies coverage of IVIg, it is on the ground that the treatment is "experimental or investigational." Insurers may take this position when IVIg - indeed, any treatment - is prescribed for what's called an "off-label use." An "off-label use" is a use that is not listed in the labeling approved by the Food and Drug Administration (FDA).

 

As a general rule, when an insurer denies coverage of an off-label use, it is very hard to convince them to make an exception. However, we have had good success with getting coverage for off-label uses of IVIg largely because there is a wealth of medical literature supporting these uses.

 

I also posted a similar link about 18 months ago - I'll try to find it, but I'm not particularly search savvy for older links. You might also want to start a new thread - you aren't the first to fight this battle after the fact.