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introduction - long post -lots of questions


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I just posted something in this thread somehwere else and thought you might be interested too since blood tests came back normal but antibiotics help...

 

Quote from Buster ( http://www.latitudes.org/forums/index.php?...ic=5520&hl= )

 

"Another Wrinkle

 

Just to throw an entirely weird wrinkle on this, the recent Kurlan paper shows that ASO titers drop after long exposure to strep (even if the strep is untreated) -- indicating either the strep is changing in what it produces or that the body gets used to the Streptolycin O (sort of getting used to bee stings) and stops mounting such a defense. This sure raises questions about the effectiveness of ASO as a strep selection tool."

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mom,

you're asking all the right questions and are wise to be cautious. I don't think anyone really has the right and absolute answer tho. In your case, your son is kind of bad off at the moment, and meds aren't helping, and possibly making him worse. You'll have to take a leap of faith here, if you feel something must be done very soon, I would not hesitate to go with what one of these docs recommends. Apparently, and I think it has to be said, that Dr. K. has a protocol that he sticks with and has a belief that all kids with these type symptoms are PANDAS, and altho he may be right, I could see where some of us more cautious scaredy cat types, might second guess this. I hvn't seen him, but it does seem those who have are fans. So what to do? I think I am feeling just as you do, except my son has never been on meds and his case is more moderate, altho who knows what the future holds? I know I can't leave it all like this, I could deal with the tics maybe, but he shouldn't hve to, and the ocd is at this point very much in the way of his schoolwork (he erases and goes over letters and it slows him down and stresses him very much). I am also on the cusp of the vaccines you speak of, so my hair is standing on end, I don't know what in sam hill I'm gonna do. I really believe they compromise the immune system of kids who already have neuro problems such as tics, ocd and possibly behavioral.

 

But for you, I think the first thing is just go with a full strength antibiotic for a month (and maybe the steroid burst) and go from there. If you see one of these docs, you don't hve to follow thru with the treatment, but I think the abx and maybe the steroid burst cannot hurt if he is in a bad place right now.

 

I have to add here that, while I know these things are the protocol, and I wish I could be more confident, but let's face it, it does not seem to be a one size fits all road here, there have been setbacks even for those that have gone thru with each of these modalities. I think Dr. T. is stating that the IVIG and PEX should be reserved for the more severe cases, altho I'm guessing what is considered severe could be relative?

 

Since your son is a bit older, my best advice is to speak at more length to the parents of older children here who have similar cases, and get their take on what they hve done and how it has or has not helped.

 

-Faith

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Having worked very closely with Dr. K..... I have nothing but wonderful things to say about him.

 

I think you are correct and his directness with you was more of 'run don't walk thing' in order to have success with your child's recovery. He did something similar to my friend's who son had RF and spent many months trying to eradicate the strep that kept coming back. Thankfully, her child is doing much, much better after IVIG. BUT, I will not deny that more than one IVIG treatment might be required for your son.

 

Thankfully, our insurance is covering the treatments my son requires via Dr. K.

 

 

 

Faith:

 

By the best of my recollection, he went off of Prozac when the panic attacks started in 6th grade. The pdoc had been slowly raising it in the fall as his school anxiety was getting worse (the period where he complained of GI pain). He then pulled him off it cold turkey to see what his baseline was and things went from bad to worse. Since that time my son has been on a mix of SSRI and/or antipsychotics and there were tons of med changes that year due to hospitalization etc. Last year was more stable on Celexa and Abilify. He is now on Luvox CR and a small dose of Risperdal. My son is a walking science experiment of chemicals...sigh..

 

The vacinnes were for tetanus, 2nd booster of chicken pox (is that varicella) and I dont remember the other, but it is the routine, last of childhood one I believe. I'd have to go back and look to know for sure. As far as behavior before and after, the only indication I have is that I can't remember anything remarkable before from that summer(july/aug). I do remember that in the early summer he made a new friend and was riding his scooter a lot with him. He seemed happy. He is always worried on some level, but I'm pretty sure things seemed ok. We got the vaccines, went to florida the following week for vacation, and he got sick with the tummy bug a day after we got back and missed the first week of 6th grade, and then all ###### broke loose.

 

I actually emailed Dr. K a few months ago. We live in MI so not too far a drive. His immediate email response actually scared me, in that he was advocating IVIG immediately due to my son's age. That he wouldn't even consider antibiotics at this point because he is entering puberty and it may be too late for full recovery, even with IVIG. Somehow this seemed off to me, given that he hadn't actually seen my son or reviewed his medical history (just read soemthing similar to whatI posted above) , and I don't have the money to pay for this (my son weighs 120 poundsX $1000 per every 10 pounds= $12,000 per treatment). Maybe he was just trying to light a fire - the "run don't walk thing". I guess my biggest fear is that by going to see one of the big 3 (Dr L,DrT,or DrK) is that they already have a bent to PANDAS, and sometimes I wonder if I describe this whole thing with a bent to PANDAS. For those with experience, would these docs be honest to say "no - your son doesn't fit the profile - I don't think he has PANDAS"? Or would they be able to say definitively "yes - despite the lack of strep currently, he does have PANDAS". I don't know which answer I'm more scared of...Other than distance, how do you decide which doc to see?

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More questions: I also have read here about strep hiding out and intercellular strep. How do you determine that? Is there some type of test that can be done?

That's a toughy. The short answer is that certain strains of GABHS (notably emm-type 6 and 19) can go intracellular -- but that was a relatively recent finding (2004).

 

Intracellular strep appears resistant to amoxicillin -- not because it is, but because the amoxicillin can't get to it.

 

There's anecdotal evidence that kids with intracellular strep have elevated CD4 to CD8 ratios (these are particular receptors on T-cells that determine whether the T-cell is looking for extracellular bacteria or will kill infected cells). Lots of things can cause elevated CD4/CD8 ratio but one is that the immune system is misfiring and activating more Th2 than Th1 cells - i.e., it's looking outside for stuff that is inside.

 

So the short test is trying a macrolide like azithromycin -- the longer test is getting flow cytometry.

 

Hopefully that short explanation helps.

 

Buster

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Welcome and I am so sorry you have had to find this forum and lurk along with so many of us--as we try to help our kids.

No doubt you have had a horrible time.

 

Antibiotics, we think are a relatively benign thing to TRY --

 

I wholeheartedly agree with the earlier advice of DCMom, that a month of full strength antibiotics (30 days +) is worth a try, now.

It was KEY in helping our child...little to lose and possibly so much to gain. Try it and see if there is improvement is what I would say given our experience.

If it not successful, then go from there as you see fit would be my advice (we too have been through it--) I too am happy to talk to you on the phone if you want to pm me.

 

All the best,

TMom

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I completely agree with DCMom (and if it wasn't for her, we would not have known about Dr. Latimer). You sound like you have gone through EXACTLY what we have been through with our 14 year old son (even all the school stuff, although we have not resolved the school problems, and are now in Due Process.) The only difference is that our son had a sinus infection when he was 8 years old that appears to have triggered it.

 

Dr. Latimer is the person you really need to go to. She understands the whole process, and has access to all the possible treatments. There are parents who come from all over the country (and possibly the world?) to see her. We live 3 hours away, but I would have gone even if I had had to fly there. We wasted a tremendous amount of time and energy prior to seeing her, and trust me, it was well worth the drive and the expense!

 

As far as your son's age is concerned, don't worry about it. Our son also did not get better with puberty. He has now had IVIG and PEX (both through Dr. Latimer), and although not completely healed, is definitely doing much better. We are no longer "wornout" like we were with the illness (just the local school district, but that's a whole different situation :-)

 

Good luck.

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I have been to all 3 doctors, and I can say that Dr. K. is exceptional as well as Dr. Latimer. Dr. K firmly believes that IVIG is the answer, and after my children have had PEX (and 1 has had IVIG with Dr. Latimer, as well), I have to agree. Dr. K. has a really good grasp on the situation, and really, really knows his stuff. I do believe that IVIG is a good option to improve the immune system. But, paying privately is a problem (would have been for us, too).

 

For the record, I was not overly impressed with Dr. T. He did dx our son initially (thank goodness for that), but was impossible to get hold of, even when our son's symptoms were escalating, and he went for an extended time without antibiotics when they were desperately needed. Dr. Latimer has access to all the tx options, she does a very complete workup, got both my kids diagnosed (even though the older one didn't have "classic" symptoms), and both are now doing so much better.

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More questions: I also have read here about strep hiding out and intercellular strep. How do you determine that? Is there some type of test that can be done?

That's a toughy. The short answer is that certain strains of GABHS (notably emm-type 6 and 19) can go intracellular -- but that was a relatively recent finding (2004).

 

Intracellular strep appears resistant to amoxicillin -- not because it is, but because the amoxicillin can't get to it.

 

There's anecdotal evidence that kids with intracellular strep have elevated CD4 to CD8 ratios (these are particular receptors on T-cells that determine whether the T-cell is looking for extracellular bacteria or will kill infected cells). Lots of things can cause elevated CD4/CD8 ratio but one is that the immune system is misfiring and activating more Th2 than Th1 cells - i.e., it's looking outside for stuff that is inside.

 

So the short test is trying a macrolide like azithromycin -- the longer test is getting flow cytometry.

 

Hopefully that short explanation helps.

 

Buster

 

 

What is "flow cymetry"? (and I just have to ask - what is it you do for a living that enables you to understand all this chemistry?!!)

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I have been to all 3 doctors, and I can say that Dr. K. is exceptional as well as Dr. Latimer. Dr. K firmly believes that IVIG is the answer, and after my children have had PEX (and 1 has had IVIG with Dr. Latimer, as well), I have to agree. Dr. K. has a really good grasp on the situation, and really, really knows his stuff. I do believe that IVIG is a good option to improve the immune system. But, paying privately is a problem (would have been for us, too).

 

For the record, I was not overly impressed with Dr. T. He did dx our son initially (thank goodness for that), but was impossible to get hold of, even when our son's symptoms were escalating, and he went for an extended time without antibiotics when they were desperately needed. Dr. Latimer has access to all the tx options, she does a very complete workup, got both my kids diagnosed (even though the older one didn't have "classic" symptoms), and both are now doing so much better.

 

 

Can I ask how you follow up treatment with a dr who is so far away? The draw to see Dr K is that it is a 4 hour drive and we could follow up. But I'm sensing from responses that Dr L would be the one to head to given her expertise and probability that we could find a way to get insurance coverage. Does that mean flying into DC on a monthly basis then? Having seen Dr. L and Dr. K, do you see any drawbacks to either?

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tpotter- I would be really interested in a description of your experiences with pandas, all three docs, treatments, and how things are now- if you have a chance.

 

wornoutmom- I know you are probably tired, and this is all so overwhelming, but I will give you my thoughts. Unfortunately this is new and unstudied science, these docs all do what they can to help- none have all of the answers. I think as a parent, to help you to decide who to see, you should figure out what you want from them.

 

In other words, I think both docs will help you with diagnosis. Your son certainly sounds like pandas, and pandas is a clinical diagnosis, there are no absolutes.

 

Dr K, I imagine, will put your son on antibiotics, and maybe try a 5 day steroid burst as a diagnostic tool. He will, I imagine move you quickly to IVIG. You will probably be able to get the IVIG in Chicago- but I believe you will have to pay up front and then get a reimbursement (if you are able) from your insurance company. I have not seen Dr K- so others may chime in here...

 

Dr L would be interested in a Cunningham test I imagine. She would probably start your son on long term high dose antibiotics and a month long course of steroids. Depending on the outcome of this, she will then determine if your son should be considered for plasma pheresis or IVIG. Her office will work to get you pre approved with your insurance. It will be (I imagine) a bit longer of a process than pre paying with Dr K. (Of course, as we have found out pre approval is not a gaurantee of payment- but don't get me started) I have not had any issues (others have) with Dr L's responsiveness. If you chose to see her, however, I would plan on multiple trips to MD for the first year- it is a very complicated disorder, and certainly is better to follow up in the office.

 

The other thought might be to contact Dr Bouboulis in CT. He is an immunologist (somewhat new to the forum parents I think) who is helping many pandas patients. He believes they need monthly IVIG (of course does a detailed immune panel to asess this). Possibly if you saw him for diagnosis- you could figure a way to have the IVIG done locally- if this is your goal.

 

It is so hard making these decisions- as parents we can only do our best.

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Flow Cytometry is a mechanism of taking blood cells and dropping them one by one in front of a laser that then scatters light in a particular pattern for each type of cell. (It's actually totally cool). By adding special flourescently modified antibodies to the sample you can get these antibodies to bond with the receptors on T-cellsl such that when they pass the laser their pattern of light scattering changes. In this manner you can tell what receptors are on each cell. This is the CD4+/CD8+/... stuff that is talked about in some of the posts.

 

In answer to your actual question, I'm a research scientist and used to build equipment like this for very wacky experiments many years ago...

 

Best regards,

 

Buster

 

More questions: I also have read here about strep hiding out and intercellular strep. How do you determine that? Is there some type of test that can be done?

That's a toughy. The short answer is that certain strains of GABHS (notably emm-type 6 and 19) can go intracellular -- but that was a relatively recent finding (2004).

 

Intracellular strep appears resistant to amoxicillin -- not because it is, but because the amoxicillin can't get to it.

 

There's anecdotal evidence that kids with intracellular strep have elevated CD4 to CD8 ratios (these are particular receptors on T-cells that determine whether the T-cell is looking for extracellular bacteria or will kill infected cells). Lots of things can cause elevated CD4/CD8 ratio but one is that the immune system is misfiring and activating more Th2 than Th1 cells - i.e., it's looking outside for stuff that is inside.

 

So the short test is trying a macrolide like azithromycin -- the longer test is getting flow cytometry.

 

Hopefully that short explanation helps.

 

Buster

 

 

What is "flow cymetry"? (and I just have to ask - what is it you do for a living that enables you to understand all this chemistry?!!)

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