Trying to be patient

[KLW]

Hi, we were blessed with approved orders for three consecutive HD IVIg events. First was in May and last week we did June. So we'll do July and then drop back to monthly lower dose.

 

My son would be considered early-onset and late diagnosed. I describe him as being sick his entire life and he wasn't diagnosed until he was 12. We don't have a "baseline" that everyone longs to achieve. He has had to grow up in this state of constant fear, anxiety, inattentiveness, dysgraphia, mild OCD, one BAD year (2014) of tics and in his case, lack of verbal expressive speech as verbal apraxia is his PANDAS-motor planning issue (that's right - my nearly 13 year old cannot talk but understands everything that is said to him. Years of speech therapy were wasted because, the underlying reason for the apraxia, aka PANDAS, wasn't diagnosed! grrrrr). Although I know when I see improvements in areas, I really don't know what my kid is like when he is well, because he never has been.

 

I really haven't seen anything at all in terms of improvement since the May and June HD IVIgs. I know it can take several weeks so I'm trying to be patient. My question is : Is 12 weeks still the "rule of thumb" on when things may begin to turn around? If that is the case, then Aug will be the 12 week mark from the first HD, or Oct if I count 12 weeks from the July HD. We saw improvement immediately with prednisone, which is what gave Dr. L the impression that he may respond well to HD IVIg. Sometimes I feel like he needs to be on pred in addition to other interventions, but I know why that isn't the greatest idea. We've only done one 10 day burst and then it was yanked away and the improvements went away with it.

 

I have a hard time being apologetic about being "impatient" after waiting so long for a correct diagnosis and then post-diagnosis, the months and months of waiting on doctor appointments, begging for particular treatments and then once obtained, insurance approvals, etc, etc. It's like I've been running a nearly 13 year marathon only to arrive at the starting line of a race where the people from whom I need help crawl at a snails pace. If only everyone had the same sense of intense urgency I have. If he had a treatable disease that is "recognized" by the medical world, I doubt seriously anyone would think it acceptable to wait this long for diagnosis and treatment. I pray that will change for PANDAS soon. Sorry for the rant. I don't do that often but sometimes it feels good to put it out there.

 

[LNN]

I'm sorry for your frustrations. I understand what it's like to believe in the child you know is in there while those around you seem to just accept him as-is. I always felt like my son had been buried in an avalanche and I was the only one trying to free him.

 

I can't advise on the IVIG. We only did one and saw very negative results within the first week - and went on to endure a 10 week herx b/c of undiagnosed Lyme disease. I do know others have said they saw a delayed reaction.

 

If managing inflammation is when you see the most improvement, are you using an anti-inflammatory regimen? Motrin several times a day? Resveratrol? Low Dose Naltrexone? (http://www.lowdosenaltrexone.org )

[MomWithOCDSon]

_{So sorry you're going through this. I know it is frustrating and even demoralizing at times, for both you and your DS. From everything I hear and read, Dr. L. is great at this PANDAS thing, but she is also incredibly booked up and that can inhibit response time and that sense of urgency each of us parents has, but I'm guessing no PANDAS practitioner can afford.}

 

_{If you've seen anything about my DS's story, he was similar to your DS . . . suffering for years before we finally got a PANDAS diagnosis and intervention at age 12. In our case, it was long-term abx rather than IVIG that did the trick. Like you, I didn't necessarily know what "base line" was, and I'm still not certain that I do. But I do know what functional looks like as opposed to the dysfunctional state he fell into at age 12. And I'm very blessed to say that now I also know what "happy" looks like, thanks to his healing and his current state.}

 

_{Unfortunately, in our case, it was a journey of several years, rather than several months. Two years of abx and therapy, followed by slow and steady improvements over the next few years, and he's about as close to "normal" as I can fathom he can be, as compared to my friends' kids, his college classmates, etc.}

 

_{Try to hang in there. I agree with LLM regarding anti-inflammatory measures; to this day, my DS maintains an anti-inflammatory diet and takes anti-inflammatory supplements. And if you haven't tried abx therapy, it might be worth trying, as well.}

 

_{All the best to you.}

[KLW]

Thank you.

 

llm - on the low dose naltrexone, what benefits did you see and how long did it take to see them? I actually have that here and began it back in Feb. I had a couple of things to introduce so I started the LDN and then after about a week added OmegaGenics SPM Active, which I understand to be a newer product which is a concentrated form of the anti-inflammatory properties in fish oil. Our integrative doc wanted to see if it could help with inflammation in lieu of prednisone. After another week or so, with him now on both new things, things started getting a little crazy around here. He's never been able to tolerate fish oil well (he just becomes very agitated and hyper) and the doc didn't think that would be the same with this product but it was. So I took him off both things and behaviors returned to normal. I never went back to the LDN but was recently thinking I should. Now I think I will just add it in and not change any other variable and see if it may be helpful.

 

And Nancy - Yes,I am familiar with your son's story and it gives me so much hope! He has been on constant abx since Jan 2013, starting with amox 500 mg 2x day for about a 1.5 years, then switch to omnicef for about a year and most recently Augnmentin XR 2x per day. The higher the dose the better he seems. He cannot be off it for even two days before I'm frantically getting it back into him.

 

I've been a quite dismayed in the inability to pinpoint the exact bacteria it is treating and the indifference I've encountered by the docs in that they don't seem to think knowing the infection source is important. His CamKinaseII was 187 but no strep titers. I don't suspect Lyme, have done the "normal" lyme testing (negative) but not the Igenix. Also looked at myco, EBV - all the "normal" culprits. There is clearly something bacterial going on or he would be dependent on the antibiotics. Prior to beginning prescription antibiotics in 2013 for years he was on natural supplements with antibacterial properties which, again, he could not be off for any length of time.

 

I'm going to go ahead and re-start the ldn. I haven't done consistent motrin (except the few days after an IVIg to ward off headache and fever). I know there are risks to giving NSAIDS all the time, too, but something has GOT to give.

[LNN]

We only used the LDN for neuropathic pain, not for behaviors. It was significantly helpful for a few months and restored a certain level of relief for my DD's pain. But I don't have any experience in the other areas it's supposed to help with. As you say, try it and see. FWIW - my DD doesn't do well on Omegas or fish oil either.

 

You may want to do Igenix just to get a better idea of things. Untreated Lyme can bring a cascade of issues.

 

My DD is allergic to many abx but she had great results with an herbal antibiotic called Alchornea. It has an earthy taste, so we put it into an empty gel capsule (Amazon) and then she takes is quickly before it starts to melt. http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/

http://www.prota4u.org/protav8.asp?h=M12,M14,M15,M16,M18,M19,M20,M21,M23,M25,M26,M27,M34,M36,M4,M5,M6,M7,M8&t=Alchornea,ALCHORNEA&p=Alchornea+cordifolia#OtherBotanicalInformation

 

We get ours from www.woodlandessence.com

 

There's also an herb that helps close the BBB called Red Sage that might be helpful. PM me if you want more into on that one.

[MomWithOCDSon]

Also, in terms of the abx and their impacts . . . research is mounting that it is likely not all about killing off infection. You've seen the posts/research about minocycline and OCD? And beta lactam abx (which Augmentin falls in that class) are thought to have glutamate-modulating properties, which can be an issue in some behavior sets (anxiety, OCD, etc.). I also recall having read some research years ago about a class of abx being distinctly anti-inflammatory (cephalasporins, maybe?). And then there's the clavulanic acid that's in Augmentin, which is thought to have anti-depressive and other characteristics, all on it's own. So while there may still be some infection lurking that the abx are treating, it may be that they are assisting other issues, as well.

 

It is SO frustrating because even the best docs can't know all of the pieces at this point . . . the research continues. We're each sort of forced to put the puzzle pieces together ourselves as best we can and then protect them like Mama Bears once we've found the best of what works the best.