5 mos in, need advice :)

[MomtoJake]

First of all, thanks to all of you, these last 5 months have been made so much easier knowing I have this forum. I am reading the whole thing backwards from the first post!

 

A little background: DS 6 dx PANDAS (tics, OCD, Chorea etc) Dr. M. Onset Sept 2011. ABX Augmentin treatment dose Sept- January 18. After starting ABX we saw a dramatic decrease in symptoms- a month later saw a pretty good increase thought due to older brothers strep. Improved again. Seemed up and down in about 3 week periods. During this time he also developed a range of other physical symptoms- angioedema of the face (IGE over 800 with many allergies), discovered possible Celiac (anti-gliadin at the upper limit of the test!) blistering rash on his elbows, spider angiomas in various places on his body. December was a difficult month- croup illness seemed to coincide with increase in symptoms. In January we saw Dr. M, who felt that although his initial trigger was strep, now he is reacting to viruses, allergies, and may have other auto immune issues. She did give us a RX for more Augmentin, but wasn't convinced it was helping anymore and said we could take a break. She referred us to allergy/immunology with a practitioner in her area that "gets" PANDAS. (Appointment March 8) He is also taking NAC, Magnesium, Curcumin, Vit D. Myco negative. Lacks immune response to Strep Pneu.

 

He seemed to improve steadily in the last 3 weeks (some days almost 100%) with no ABX and now yesterday the bottom dropped out again. Our same 3 week pattern! Yesterday was a bad day at school He told me his "brain is telling him to do things" and he can't stop it. He wants to build a time machine "so I can go back to the first day of Kindergarten and start over and behave" He went to another room and raged and screamed over his inability to control himself. He is impulsive at school and can't seem to hold it together to stay on task and do what is expected of him, (very understanding teacher who get it though and we never berate him over it or punish-we incorporate rewards etc) Later he was watching a G rated tv show in which the main character did something mild he was not supposed to do and he freaked out screaming at me to turn it off and he ran out of the room. I turned it off but he kept saying "Oh my gosh here it comes, the bad thought about the show!" Then he would stand very tense and still, a shudder would come over his body and he would cry out as if hurt. I have never seen him like this. He has not left my side since last night and is skin to skin attached to me still, ticcing (new ones), odd body postures.....My heart is breaking for him.

 

Questions-- Anyone else see things like 3 week patterns?

 

My feeling is to get him swabbed today? Would mean lying to Urgent Care which I have no problem with.

 

Would you start the ABX again regardless? My feeling is yes- it can't hurt, right?

 

Is it possible that the stress got to him big time opening the BBB?

 

Thanks for taking the time to read!!

[LNN]

I have been in your shoes. The response, the improvement where you start to feel "ok, it's working, he's coming back..." only to be hit by a train when he suddenly tanks again. If you are truly re-reading ancient history, you'll see me blame "exposure" many times.

 

I can only tell you what ended up being true for us. My son wasn't reacting to new exposures. He was reacting to a current infection that was never defeated. For him, it was bartonella/lyme. Bartonella produces a lot of neuropsych symptoms that overlap a lot with Pandas. My son absolutely had Pandas responses to strep. So that was part of it. But he never got to enjoy long periods of remission the way some other Pandas kids did. After doing Pex and IVIG over the course of 2 yrs, we finally tried lyme treatment. He had a great initial response to combo abx for bartonella - a 4 month improvement that was longer than we'd ever had. But then we hit that friggin wall again. So we hit the lyme harder and my son got just like your son. Raging, huge tics (hadn't had tics for 18 months post-pex), huge anxiety, zero impulse control, fixated on an idea, just a mess. It turns out that he had basic problems with his immune and detox systems. He has a condition known as pyroluria - a zinc/B6 deficiency that kept his immune system (and his brain) from working well. The explosion of symptoms from hitting the lyme hard was due to his inability to get rid of toxins quickly enough. He was sort of poisoned from the dying bacteria and that caused the neurological problems.

 

We finally started treating the pyroluria and the change was huge. I mean huge. It repaired the foundation. From there, his body started detoxing better (not without blips but he got there). Then we started added some other missing nutrients (magnesium, primrose oil, etc). He was really good so I added flaxseed oil (omega 3) and he totally tanked. For him, Omega 3s are terrible. So you have to find individual answers. What works for others may not work for you. He's still on combo abx and he's not completely done with treatment, but he's in the best place of his life. Better than before everything fell apart.

 

Not suggesting any particular issue for your son. Only that you may need to look beyond strep, for something that seems to have a 3 week life cycle. You may want to look into pyroluria or some foundation building blocks. The things that have been key for my son haven't been the solution for my daughter. So every body is different. We still need to find my DDs missing ingredients. But now I know we'll get there as long as we keep looking. She's been fighting EBV for months. Two days ago, we added l-lysine, which is anti-viral. The change has been remarkable. Again, she may have other things to deal with. But my point is that when you find one of the puzzle pieces, you tend to know it pretty quickly. At least, that's been true for my kids.

 

So if your son isn't following the script, keep looking. There's no one size fits all solution. But there is a one size fits perfectly solution for your son - and you will find it. Just keep digging.

[MomtoJake]

I have been in your shoes. The response, the improvement where you start to feel "ok, it's working, he's coming back..." only to be hit by a train when he suddenly tanks again. If you are truly re-reading ancient history, you'll see me blame "exposure" many times.

 

I can only tell you what ended up being true for us. My son wasn't reacting to new exposures. He was reacting to a current infection that was never defeated. For him, it was bartonella/lyme. Bartonella produces a lot of neuropsych symptoms that overlap a lot with Pandas. My son absolutely had Pandas responses to strep. So that was part of it. But he never got to enjoy long periods of remission the way some other Pandas kids did. After doing Pex and IVIG over the course of 2 yrs, we finally tried lyme treatment. He had a great initial response to combo abx for bartonella - a 4 month improvement that was longer than we'd ever had. But then we hit that friggin wall again. So we hit the lyme harder and my son got just like your son. Raging, huge tics (hadn't had tics for 18 months post-pex), huge anxiety, zero impulse control, fixated on an idea, just a mess. It turns out that he had basic problems with his immune and detox systems. He has a condition known as pyroluria - a zinc/B6 deficiency that kept his immune system (and his brain) from working well. The explosion of symptoms from hitting the lyme hard was due to his inability to get rid of toxins quickly enough. He was sort of poisoned from the dying bacteria and that caused the neurological problems.

 

We finally started treating the pyroluria and the change was huge. I mean huge. It repaired the foundation. From there, his body started detoxing better (not without blips but he got there). Then we started added some other missing nutrients (magnesium, primrose oil, etc). He was really good so I added flaxseed oil (omega 3) and he totally tanked. For him, Omega 3s are terrible. So you have to find individual answers. What works for others may not work for you. He's still on combo abx and he's not completely done with treatment, but he's in the best place of his life. Better than before everything fell apart.

 

Not suggesting any particular issue for your son. Only that you may need to look beyond strep, for something that seems to have a 3 week life cycle. You may want to look into pyroluria or some foundation building blocks. The things that have been key for my son haven't been the solution for my daughter. So every body is different. We still need to find my DDs missing ingredients. But now I know we'll get there as long as we keep looking. She's been fighting EBV for months. Two days ago, we added l-lysine, which is anti-viral. The change has been remarkable. Again, she may have other things to deal with. But my point is that when you find one of the puzzle pieces, you tend to know it pretty quickly. At least, that's been true for my kids.

 

So if your son isn't following the script, keep looking. There's no one size fits all solution. But there is a one size fits perfectly solution for your son - and you will find it. Just keep digging.

 

Thank you so much for the reply. I think I kind of have known in my heart since this thing started that I would need to keep my proverbial shovel nearby to keep digging. My son has always been low zinc/high copper- never tested B6 so I will definitely look into pyroluria- any specific test to ask for? Can a pediatrician do it? I have hope that we will get more information from the immunologist next month but I can dig while we wait! I was just so scared last night, it was like he was having some sort of complete breakdown- I have never seen my child that way or any other child that I have seen who was upset. I am going to give some Advil today and keep stress levels low. I have a lot to think about and research so I probably need some Advil and low stress levels, lol! Thanks again so much.

[LNN]

The one who talks about pyroluria a lot is Klinghardt - an LLMD. He says there's really only one good lab for it - http://vitamindiagnostics.com/

Go to the Lab Tests tab

then Specific Tests

then Kryptopyrrol in urine for info.

You can also print out the order form from the site. It's $70 which includes fedex costs, not covered by insurance. But you do need a physician to sign the form.

 

If you decide to pursue, let me know and I'll email you a copy of the completed order form so you know what to check off and I'll email you Klinghardt's specimen collection instructions, which are different that the standard instructions from the lab (the lab says do a 6 hr catch, Klinghardt tells you to do a 24 hr catch b/c the level of pyroles can fluctuate throughout the day).

 

If you can't get the test done, the other option some people have done is to just do a trial of zinc/B6. You'd see some sort of improvement within 2 weeks? We saw a change within a few days for my son, who was absolutely positive for KPU. Never saw much of a change for my daughter, who was borderline. Klinghardt developed a blend of zinc/B6 and other stuff so you only have to take one pill and not a dozen separate ones. It's called CORE from Biopure.

 

If you want more info on Core, let me know. You start with one pill, then build up to full dose of 4 over a few months. If you have KPU, you usually see a blip @ weeks 3-6 as your body's conveyor belt starts working again and it starts cleaning out crap/detoxing, fighting stuff it wasn't strong enough to fight before.

 

Here's an old article written b4 Core was developed but it gives background. http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

 

KPU can only be detected from a urine test, not a blood test. For my son, it's likely a lifelong condition. If you already know you have a zinc deficiency, you can read up on supplementing w/o doing a KPU test. They may be different conditions. FWIW, high copper can cause mood swings and rages. My DD has tested for high copper and struggled with this. Zinc supplementation will naturally chelate copper and cause it to drop. But like any chelation, you may see blips of behaviors, much like the struggles that happen with most "detox" sorts of situations.

 

I would still keep an eye on the 3 week cycles. That may be unrelated to any zinc or pyroluria issues. Heaven forbid there should be only one thing wrong.

[trggirl]

LLM, do you know why it has to be a urine test and not blood?

[rowingmom]

The ticcing, raging and spider angiomas can all be symptoms of a bartonella infection. My DD10's bart symptoms are resolving with a combination of biaxin/rifampin and lots of detox including epsom salt baths, methylB6, methyl b12, zinc etc. She was so improved that the LLMD removed rifampin to try and ramp down on the bartonella treatment, but 3 months later all symptoms had returned, so back on rifampin for another while. Within two weeks her symptoms had resolved again.

[LNN]

As part of heme (blood) synthesis, pyroles are produced as a byproduct. Pyroles bind to zinc and B6. Because pyroles are in a sense a waste product, they're excreted in the urine. When you make too many pyroles, they bind to your supply of zinc and B6 and you end up peeing away not only the pyroles but also your zinc and B6. You can do a blood test and see normal levels of zinc/B6 but it gets stuck to the pyroles and excreted b4 the body can utilize it. The way you diagnose pyroluria is by looking for pyroles in the urine (it turns the test material a shade of mauve, so it's also called "mauve factor" and was once thought to play a role in schizophrenia.

 

My analogy is the guy in the big glass ball full of money. There can be tons of money. Should be more than enough to make him a millionaire. But turn a fan on and the guy can't catch the money flying around inside the ball. So you can do a blood test and see plenty of zinc. But if it's not easy to utilize, you end up with a deficiency and being "poor". To treat pyroluria, you mega-supplement with B6 and zinc, which for that particular body, ends up being "just enough".

 

For those who have a zinc deficiency measured in a blood test, you would still supplement. But it may or may not be caused by pyroluria. They could be two different issues or the same issue. And I'm not sure how B6 would come into play in a regular plasma deficiency of zinc. The Klinghardt paper does a good job of explaining.

[MomtoJake]

The ticcing, raging and spider angiomas can all be symptoms of a bartonella infection. My DD10's bart symptoms are resolving with a combination of biaxin/rifampin and lots of detox including epsom salt baths, methylB6, methyl b12, zinc etc. She was so improved that the LLMD removed rifampin to try and ramp down on the bartonella treatment, but 3 months later all symptoms had returned, so back on rifampin for another while. Within two weeks her symptoms had resolved again.

 

Thank you for this info--How do I go about getting my DS tested for Bartonella? Just curious, did your DD's spider angiomas ever go away?

[MomtoJake]

If you decide to pursue, let me know and I'll email you a copy of the completed order form so you know what to check off and I'll email you Klinghardt's specimen collection instructions, which are different that the standard instructions from the lab (the lab says do a 6 hr catch, Klinghardt tells you to do a 24 hr catch b/c the level of pyroles can fluctuate throughout the day).

 

 

 

THANKS!! I sent you a PM!