Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
lmkmip67

Update with IVIG #4 and questions...

Recommended Posts

We completed Ian's 4th IVIG 4 weeks ago. We did start to see a little bit of improvement toward the end of the 8 weeks from #3, about 30% maybe. Mood was a bit better and there were no tics. OCD was about the same. Ian came down with a little cold about a week ago. first he seemed ok, maybe a bit more moody. But this week the cold is gone and his OCD is over the top. Rituals he has never had (having to walk up and down the stairs to the front door 2 or 3 times, the bathroom frequency, being petrified of a Bloody Mary story some of this friends told him at school. (Boys will be boys and it is all fun and games unless you have OCD). We also got back the questionable bands from retesting with Igenex and he is not positive for Lyme. Dr. B is slightly perplexed. He really feels we should see more improvement by now, but he did say that some kids don't respond until even around 7..I don't know. I really like Dr. B, but I am starting to feel kind of hopeless. Ian has no co-infections going on, we tested for all of those. Negative. He clearly reacts to illness, tics increase, and then leave once the illness goes away, or we do a steroid burst, etc. He sure acts PANDAS. He is also on azythromicin. Dr. B really cautioned against chasing Lyme if it wasn't clear at all on Igenex and I have to agree. I don't want to toss more antibiotics at him unless I see a real concrete test result telling me I should be. So I am not sure what to do next. His mood has been a lot better, more agreeable, doesn't fight us as much. Once in a while he still might have an outburst, but not nearly as frequently. And I haven't seen a tic in months now when a year ago he had about 4 tics going on. So I am not sure what to make of all this. Sometimes I wonder could he just have regular old OCD? I want to see a neurologist locally and try to get some OCD support. I hope to find one that is open minded with the PANDAS treatment. But I need to do more to help him. Even if the IVIG is doing something (I can't deny a few things seem better, but after 4, it seems like we will be doing this forever) I kind of think I should do something else. Not sure what, though. I see no co-infections or Lyme. So what is next? Keep doing IVIG and hope he gets better? I toyed with the idea of homeopathy but know we can't do antibiotics at the same time. Not even sure we can do IVIG? Dr. B seems SO sure IVIG will work eventually. Really? Has any not been helped or is everyone finally helped if we just keep doing them (it is getting costly just to travel, stay in the hotel and pay the facility fee now). sigh.....

 

 

Lisa

Share this post


Link to post
Share on other sites

Just wanted to add my thoughts to your questionable lyme results. I'm not sure when you tested in relation to the IVIG's but its my understanding that the high dose is very immuno suppressive. If you have tested for Lyme after doing a course of steroids or ivig the results could be falsely negative. The western blot is testing for antibodies to Lyme and if the immune system has been suppressed by ivig or steroids, there may not be a lot of antibodies being generated even if one is infected with lyme or co-infections. If you are not seeing benefit from the ivig then I would consider stopping and really re-considering lyme.. Some lyme doctors will try a course of combination antibiotics in attempt to bring the Lyme out and then test again. A good lyme doctor could also advise you on other tests that do not measure antibodies but instead test for DNA etc. .

Share this post


Link to post
Share on other sites

I just want to ditto momofgirls.

 

If IVIG and/or steroids are not bringing the desired results, I would suggest digging further into the possibility of a chronic infection.

 

The first IVIG brought us a 95% improvement, but it did not last and we never saw such improvements again in our future IVIG's. We finally discovered multiple chronic infections, including lyme, bartonella, babesia, mycoplasma as well as parasites.

 

High dose IVIG's are immune suppressive and many people will therefore have false negative IGG and IGM tests for mycoplasma, bartonella, lyme, etc..... after doing a high dose IVIG.

 

Many of the tests for the coinfections to lyme disease only test a couple of bands of the infection and there are, therefore, many false negatives. For instance, the babesia test only tests for 2 out of the 17+ strains of babesia.

 

I know that the chronic infection issue is a hot topic on this forum. I just want to give you hope in that this may be a possibility as to why your child is not getting the desired results with IVIG. I would recommend following up with an ILADs trained LLMD to further dig into the indeterminate lyme bands as well as the potential of other chronic infections.

Share this post


Link to post
Share on other sites

Seems odd that Dr B would have you take a lyme test after several IVIG's - we were told you needed to wait several month (3 or4) otherwise - you are testing someone else's antibodies, not your own.

 

It doesn't matter where you fall on the Lyme debate - the tests for Lyme stink. Ditto mycoplasma.

 

There are kids that do not improve that much with IVIG, or don't get to 100% and for some reason other antibiotics or combinations of antibiotics have worked for them...lets not debate the reasons. Antibiotics all have different qualities and characteristics. Some cross the BBB. Some are very anti-inflamatory...and a host of other things I understand little about.

Share this post


Link to post
Share on other sites

My personal experience is that lyme testing only gave us hints - nothing so clear that everyone in a room would agree on what to do. You do need to look at the details of any lab report, not just the overall conclusion (for any disease, not just lyme). We had to take those hints, combined with a very clear lack of improvement from IVIG and a failure to reach remission for any substantial period of time, to realize that what we had done up to that point wasn't working and a new plan was needed.

 

We tried a combo abx approach to see where that might take us. Our first combo, provided by Dr B, did nothing (augmentin XR + zith). Our second combo, provided by our LLMD (zith + bactrim) made a big difference. So that was another hint for us. We've been on that path for a year, with very significant improvements in many areas. So I think it comes down to using hints and doing trial protocols, giving something enough time to prove or disprove itself, but not so much time that you've squandered other opportunities or gone broke in the process (and I'm not bashing any particular treatment - I say this for all treatments for all diseases).

 

I think for some of us, there isn't "one" answer or "one" protocol. For kids who respond in ways that are less typical than others, for kids with those "outlier" symptoms that don't get mentioned in the literature on a particular diagnosis, you need to consider that there might be more than one issue at play, more than one infection or more than one "diagnosis" and therefore more than one treatment that needs to be done - in sequence or in combination.

 

My latest "discovery" is on a topic called methylation, which is about how the body takes some basic vitamins, minerals, amino acids, etc and does chemistry magic to make the body function properly. Throw a monkey wrench into one of the chemistry cogs and you get clogs that have downstream consequences. After we started down the lyme trail, after seeing really promising improvements, my DS stalled -again. Just as he had on the Pandas trail. Yet, he was better. Just not as well as others who were doing the same things. So we've done some testing and found that he has a defect in how his body makes use of zinc (essential for the immune system), B6 and probably folate (waiting for lab results). Folate is essential for seratonin production and indirectly effects dopamine and a slew of other stuff. So in addition to abx for lyme, he's taking supplements like zinc/B6 etc and that is actually having more sustainable results than any big gun treatment we've done.

 

So I totally relate to your frustrations and pain. Why does your child not follow the script? Why are doctors stumped? Why are you still hostage to OCD? I would personally keep lyme as a question in your mind if the details of your Igenex results (the specific bands)give you any grey areas. But as for treatment and not wanting to throw tons of stuff at your kid in the hopes that something sticks, maybe it would help to look at the body foundation. Is there something about your son's makeup that results in deficiencies? Would supporting the body's basic foundation clear any clogs that would then allow your son to make better use of abx, IVIG or other treatment and help him "follow the script" that others report?

 

I'm just thinking out loud. Not advocating any particular type of doctor or solution. Just wanted you to know you're not alone in having a "puzzle" kid and wanted to let you know that for us, adding some specific ingredients have made a big difference. You've reached a fork in the road, not a dead end.

Share this post


Link to post
Share on other sites

Imk-

 

This is so hard. I am sorry your son is struggling.

 

I am typically not one to suggest lyme, as it was a waste of time for us. But- my kids have responded to pandas treatments. So it might be worth a TRIAL of combo antibiotics. I would not suggest continuing on the trial without concrete sustained improvement.

 

A few questions: was your son sudden onset? Did he have strep? I know on the board we often look past these criteria, but it a situation where you are questioning other possibilities- these may be important.

 

I would have reservations too- it seems like we should follow the paths that work. There are many patients of Dr B here, hopefully some will chime in about how long it took for them to see results.

 

I guess I would stay the course with IVIG for a bit, if Dr B really thinks it will help. But, at the same time I would see if you could switch up antibiotics. I think many here have had luck with bactrim or clindamycin. I would also strongly suggest that you get some really qualified ERP support, and maybe consider a low dose SSRI as a temporary bandaid, if it works (low dose SSRI did not work for us). I would also see if you could add some steroids to the mix.

 

My motto is to hit this thing with everything but the kitchen sink, as fast as possible.

Share this post


Link to post
Share on other sites

Very good thoughts. We did all the co-infection testing with Dr. B, and that was before IVIG, so I know IVIG was not even messing with the results. He also made us wait until right before the least IVIG to retest for the questionable bands that were indeterminate. So I think he did what he could. We will be going in January for #5 but I really am going to talk to Dr. B seriously about what avenue might be next to explore. We may try the route of an LLMD, I was seeing some improvement this time so did want to wait. Frankly the funds are disappearing to pay for an LLMD out of pocket right now until we get past the first of the year and our medical fund kicks back in. I am also going to take him to a neurologist. I need a couple other opinions in the mix so yes, I agree, we are at a fork in the road. What it appears that I have though, from all testing, is that I have a perfectly normal kid, with PANDAS. He has been on combo antibiotics too through Dr. B before the IVIG, a couple of different combos. Right now we are just on azythromicin as we saw the best response on that alone. Plus gut issues, so keeping it down to one right now is what we are doing. Maybe an LLMD is best to put on our list next anyway, just have to wait another month before I can even make the appointment due to funding. We have tapped it out for the years. :/

Share this post


Link to post
Share on other sites

LLMDs often book 3-4 months in advance, so you may want to make an appt now for next year. Just check their cancellation policy when you book. Most don't charge for a cancellation as long as you give 48 hrs notice. If you do decide to go that route, you may want to post on the lyme board prior to your appt to help with a list of things to discuss beyond lyme (e.g. mold, KPU, yada yada). Some ideas may seem far out there, others may feel worth asking about/testing.

 

If you are looking for someone to pursue ideas beyond lyme, you make also want to post either on the lyme board or on lymenet.org for names of docs who have broader practices. Someone like Dr J generally only treats lyme and not the other topics discussed in the lyme community. Other LLMDs look beyond. Some use antibiotics, some use herbals, some use a blend. As with Pandas, it's a matter of working with a doc who shares your views, and since much of it will be out of pocket, you want to make sure you start with one whose thinking is in line with your own.

Share this post


Link to post
Share on other sites

THanks, LLM. I will keep that in mind. I do have a name pretty locally that I was going to start out with. Maybe I will call her and see what I need to do to set up an appointment. I think she was more broad than just lyme....

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...