Good, but not over

[JAG10]

I'm not complaining here. I know many of your children are suffering and you are working day n night to get them to where my girls are now. Some of my old mom-pal's forum names were Tenacity, NeverGiveUp....that is you all now.

 

My girls have had a tome of blood work since 2009. There have been some things here and there, but for dd13, one persistent nemesis- elevated strep titers. That's it.

 

Is it persistent strep infection or autoimmune response (which is that the same as faulty t-cell memory?) My 13yo always has elevated titers, always. She's had 10 IVIGs and her titers have never gone below the upper limit, hovered there on IVIG, but never below. My 10yo is also pandas, less severe, caught years earlier (thank you big sis) well controlled, never needed ivig and her titers do frequently return to the normal range. Just got lab work back in prep for our yearly face to face appt w/Dr. O and older girl's titers are ASO 287 DNAse B 495 and hasn't had strep since last year. Her symptoms are well controlled also (she's at sleepaway camp right now!), but I will say she is completely neurotypical on steroids; no social issues, confident, easy conversation, ORGANIZED. I'm guessing all we have done has helped her BBB heal, so she is better protected, but I feel like as long as those titers continue to be elevated, this won't be over, over. Her tonsils are out. In my gut, I don't believe there is any persistent infection. So...we're just waiting for t-cell memory to change because of age? Menses onset 9/2011. thoughts?

[Dedee]

I can say that we are pretty much in the same place with my 17 y.o. son. He is a strep only responder and has had PANDAS since age 6. Got his tonsils removed at age 11 and was then on antibiotics from age 11 till 16. Been 95% since age 11 but titers have always been just slightly above normal. We have used all sorts of antibiotics to try to get them in the normal range. Prior to having his tonsils out his AntiDNase B was 2,740. Dr. M says that considering what it ran during those times we are considering this a victory. He has absolutely no signs of infection anywhere and the slight bit of eating issues left over is believed to be "stuck" OCD from the early years when he really wasn't getting the appropriate treatment.

 

Dedee

[Kayanne]

I'm not complaining here. I know many of your children are suffering and you are working day n night to get them to where my girls are now. Some of my old mom-pal's forum names were Tenacity, NeverGiveUp....that is you all now.

 

My girls have had a tome of blood work since 2009. There have been some things here and there, but for dd13, one persistent nemesis- elevated strep titers. That's it.

 

Is it persistent strep infection or autoimmune response (which is that the same as faulty t-cell memory?) My 13yo always has elevated titers, always. She's had 10 IVIGs and her titers have never gone below the upper limit, hovered there on IVIG, but never below. My 10yo is also pandas, less severe, caught years earlier (thank you big sis) well controlled, never needed ivig and her titers do frequently return to the normal range. Just got lab work back in prep for our yearly face to face appt w/Dr. O and older girl's titers are ASO 287 DNAse B 495 and hasn't had strep since last year. Her symptoms are well controlled also (she's at sleepaway camp right now!), but I will say she is completely neurotypical on steroids; no social issues, confident, easy conversation, ORGANIZED. I'm guessing all we have done has helped her BBB heal, so she is better protected, but I feel like as long as those titers continue to be elevated, this won't be over, over. Her tonsils are out. In my gut, I don't believe there is any persistent infection. So...we're just waiting for t-cell memory to change because of age? Menses onset 9/2011. thoughts?

When you say daughter is completely neurotypical on steroids, does she take them regularly? Can you elaborate on what her steroid treatment has been? Thank you.

[JAG10]

Hi K! She is not taking steroids regularly. What I noticed almost two years ago (after about 5 treatments) was that when she received IVIG and the prednisone or Solumedrol with it, she had about a week of being completely neurotypical in that everything was effortless like conversation, organization, doing her hair, just managing life! Then it would slowly fade. It wasn't the IVIG; it was the steroids. So fall of 2011, I shared my hypothesis with Dr. B and she did a 3 week steroid taper. The taper helped her so much, I had a meeting with her new teachers and they were perplexed why she would need any academic accommodations or why we were even meeting about her at all while her former teachers got filled up with tears. The taper also brought an unwelcome weight gain. For dd13, the positive response to steroids is clear and immediate, but does not hold. It's like there is a slow steady leak that we are now in a position to manage; it's not the gaping hole it was years ago. While steroids likely completely stop the bad antibody production, they do not close the valve or stop the leak once the steroids are d/c'd.

 

I might add that I get very pandanervous this time every year. She has contracted strep every early August for the past 3 years. Tick-tock, tick-tock.....

[JuliaFaith]

Could it be 'Group B Strep'? Just saw this recently and wondered if it would show up as 'strep-positive' on test.

[cobbiemommy]

Ah, finally someone else's child who is perfectly neurotypical on steroids. My son is being treated for Lyme, Bart, and Mycoplasma. He has been on IV for three months and while his physical issues have improved, his memory and concentration issues seem the same (not so great). He has had two prolonged steroid tapers and they were just unbelievably amazing in terms of recovery. He would be relatively quiet ( no talking to himself), want to go out and do things, he slept well and had energy and his speech pattern was perfect.

 

Sometimes, I feel like I dreamt those things or that they did not really happen. I also think the steroids were more effective than the IVIg.

 

How to get these results and maintain them long term??

[PowPow]

my daughter also responds beautifully to steroids.

The plan now is immunomodulation with cellcept and regular ivig/steroids for a little while.

Hopefully the cellcept will work on both her wacky b and t cells and get her immune system straightened out so the effects are permanent.

[JAG10]

So if IVIG doesn't "correct" the immune system, then it's a cellcept type med for those significantly impacted or cross your fingers and hope it is outgrown?

 

I get the whole onion layer analogy and that there is more than one way to skin a cat (terrible idiom), but I guess I feel like we've peeled this onion down to the core, can manage inflammation and the biological "terrain" so to speak, but naughty t-cells are staying naughty and who is really looking at pandas from this angle???? If T cells and B cells can go astray in the first place...why can't they change memory again? What would lead that to happen?

 

Again, don't get me wrong, she looks a little ADD, that's it. It just bugs me that I know this is still a (barely) simmering issue and that the other shoe is out there looming around.

[JAG10]

Cobbie- I would agree with you about the dreaming/doubting observations. But once I was onto it, I saw it again and again with the IVIG protocol; which btw, is not the purpose of the IV Solumedrol, right? That's for headache prevention. She wasn't even getting headaches anymore. Yet I observed the same improvement, very short lived on only two days Solumedrol, then fade as I imagine those nasty antibodies started cranking out again.

 

But this is autoimmune disease, right? Steroids are wonderful except for the side effects. Stop the roids, stop the relief.

[lfran]

I saw a major improvement in my sons speech patterns when we starterd treating for hypothyroidism. Do you have any thyroid labs for your son?

[Kayanne]

lfran...i've been very suspious of hormones for a bit now...going crazy trying to understand the whole hypothalamus-pitutary-axis and it's role in autoimunity...I'm ready to give it up for my sanity (that's just my low mood today)...it's almost pointless without the labs to prove a hormone imbalance. Neuroendocrinology is a real field of research, but not of clinical treatment. Google gives me one doctor in NYC. Our family is in a stressful rut, but we're not yet ready to jump to a different doctor...getting close, though.

 

My daughter's PANDAS has been managed with monthly prednisone tapers. They have brought her back to full remission three times. In March, she had strep with NO obvious symptoms. Two months later our house became ill with a gastrointestinal virus, and two weeks after that DDs PANDAS has come back. For various reasons we had to hold off treating, but we are starting her on15 days of pred tomorrow.

 

Jag10, depending on who you talk to, those strep titers could really not be that significant. A school-aged child could be expected to have elevated titers all the time because of the constant exposure. I'm pretty sure it's been documented that some people's titers drop very slowly, and that is one of the reasons why more than one test is recommended to see the trend of the titer.

 

Also, I wanted to mention a book that I'm reading:

"Safe Uses of Cortisol" by William McK.Jefferies. It's written by an endocrinologist who was treating patients with cortisol for adrenal issues when steroids first were being used in medicine. He used "physiologic doses" (the amount your body produces naturally) in his patients for years-without the side effects that were being seen in treatment doses. He reports anecdotally of his patient's cases thst also saw remission in other heath issues: RF, asthma, severe food allergies and ovarian disfunction on this dose of cortisol, with none of the steroid side effects.

 

Anyway, it's a moot point until a doctor would actually be willing to try it...or until a double blind placebo controlled study can show (and be replicated) that physiological doses of cortisol work safely for autoimmunity. I'm not holding my breath, I bet there's more profit in IVIG.

[LNN]

JAG - don't have much access to internet this week. Will be curious to hear Dr O's thoughts but some people have high titers that are "normal" for them. Doesn't mean there's strep. They just have higher than average number of strep antibodies in their systems. Maybe that's your DDs norm?

 

Having interesting experiences with the effects of yeast on behaviors - will share more when I get reliable internet. But look up an old post of mine on butyrate (maybe april of this year?). Butyrate can help heal the gut and reduce leaky gut. Could be worth asking Dr O about it as a prophylactic anti-yeast supplement. As close as we are to 100% right now, yeast seems to be one last hurdle.

[JAG10]

I've never had a doctor tell me that her elevated titers were normal. They were always a cause for measured concern. They have been as high as over the tilt measure and as low as the upper limit.

 

I'll let you know what Dr. O says in two weeks. I would imagine they are of some concern or she wouldn't have tested them three times this year.

[dcmom]

Hey Jag- I feel your frustration- but so glad things are going well! We are in a similar place (although neither of my girls have ever had high titers, even after strep!) in that both of my girls are happy, social, blossoming, academically achieving, etc- but I do still see some minor issues here and there that I attribute to pandas. I know we are not out of the woods- but feel more and more confident that we can manage this- and they will be ok, really ok. In some ways, it is a luxury to stress over the last 1 to 5 % - for there were so many times we were just "surviving".

 

Kay- so sorry things are tough now- we haven't talked in a long time. I am sure the steroids will work again- as I know you have had great luck with them in the past.

[cobbiemommy]

They were borderline normal. Dr. J did not want to treat, but Dr. T was willing to try. We ended up sticking with Dr. J's protocol and thus discontinued Armour. Had not seen real improvement in three months of dosing.

I saw a major improvement in my sons speech patterns when we starterd treating for hypothyroidism. Do you have any thyroid labs for your son?