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Alex

10 weeks post PEX- Cam kinase II 173

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My son completed 3 rounds of plasmapheresis on Aug 22. He was doing great until an infected tooth went untreated for what was probably an exteneded period of time. Had blood drawn on Oct 22, two months post PEX, for the Cunningham tests and found out today that his CaM Kinase II was 173 at the time of the draw.

 

He was finishing a 10 day course of full stength Omnicef at the time of the draw. Since he has been on erythromycin (my request becasue he seemed to respond to it really well after the tooth pull) and just finished a week of 30mg/day of prednisolone (he is 68lbs) with a week of 15mg per/day to follow. His most pronounced symptom as of late is lots and lots of terrible anger. His OCD has been pretty mild, but his appearance has been bad, with continuous dark circles under his eyes. I think he has a new mild tic as well, sort of sucking his tounge to make a clicking sound. I was guessing he was going to have a CaM Kinase score on the lower end of the PANDAS scale. Of course we are suprised and disheartened at this result. We have an appointment with Dr. Latimer next week to figure out our next step. We are also going to see his dentist in a few days to make 100% certain he does not have any more infected teeth. He did have at least one other cavity that the dentist decided to leave untreated becasue it is a baby tooth that should fall out sometime in the next year.

 

I hate posting bad news, especially for those recently finished with PEX or considering it. I said somewhere else that if I had it to do over again I would have made sure my son went into the PEX 100% healthy, been on full strength antibioitcs before during and after and would have done everything in our power to avoid immune system challenges for as long as possible after the procedure. Going in to the PEX I thought we were in good shape, but I was unaware of his tooth situation. I also asked for the antibiotics but did not get them. I think Dr. Latimer has since become a little more liberal with them.

 

We are at a loss as to what to do now but are pretty certain that the benefits of the PEX have been lost to my son. Any adivce would be appreciated.

Alex

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Alex,

was the doctor that prescribed pex Dr. Latimer? or are you just going to see her for second opinion on what to do next? what did she (or the Pex doc) say about your son not really responding so far? no symptoms are better? I don't know much or anything at all about all this really, but I guess I don't like to hear this, it does seem odd. I am truly sorry you have not found relief.

 

Faith

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I am so sorry you've had to go through this.

 

My son just finished PEX a week ago, so... you know I really mean that.

 

Has your son had immunological bloodwork? Does he have a primary immune deficiency?

 

I guess I would seek regular (as in ongoing) IVIG and mega-dose antibiotics.

 

Many of us just feel our kids have lingering infections that have never been eradicated. I sometimes wonder why they don't pull out the really big antibiotics-- IV antibiotics.

 

I am living in terror of my son being exposed to anything.

 

Good luck with your appointment next week.

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I just wanted to post this because bronxmom brought up something I have been thinking about a lot: IV antibiotics. The reason I mention it is because almost 2 years ago my dd was hospitalized as a result of a seizure. At the time she had been battling a horrible URI for almost 6 weeks. I thought she might die. ALL the docs we saw said it was viral...wait it out, keep her hydrated, humidifier, benedryl....no success, she just kept getting worse. Anyway, this was all pre-pandas diagnosis/awareness on our part, but she had this for years (we now know.) Well, in the hospital I pitched a mommy-fit and demanded IV ABX because I thought I might actually lose her. They did. For almost 4 days straight. The response was miraculous. Truly. It's like a magic wand was waved over her. She got better, fast, and all her "symptoms - OCD, tics, anxiety..." gone. The teachers at school said she was picking up learning concepts introduced on a Monday, and by Friday she had mastered them, which used to take months. She was happy, carefree, like Laura Ingall's running through the meadow!! Then, 4-5 months later, we lost it all. And within a year we were ready for an exorcism. Just wanted to share that. There is something to IV abx, I saw it with my own eyes. (BTW - they never figured out what she "had" -- all those "brain-e-aks" at Children's hospital came up dry.)

 

coco

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I'm in agreement and as I've been stating... if PANDAS, is SC, is RF they need extremely strong antibiotic to rid them of underlying infection! I'd say try the 'Saving Sammy' dose Augmentin to see if it works.

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At sometime, I will ask Dr. K why we just don't pull out the IV abx. Maybe in the future that will be what is done. I know this whole trx protocol is a work in progress. It is just so needlessly devastating for the kids and families. I am thankful he agreed to high dose Augmentin post IVIG. We have a script for at least three months. I am happy to report that we are making good progress 5 weeks out. It's been bumpy, but the overall trend is positive--after many years of not knowing the problem. We are cautiously optimistic.

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At sometime, I will ask Dr. K why we just don't pull out the IV abx. Maybe in the future that will be what is done. I know this whole trx protocol is a work in progress. It is just so needlessly devastating for the kids and families. I am thankful he agreed to high dose Augmentin post IVIG. We have a script for at least three months. I am happy to report that we are making good progress 5 weeks out. It's been bumpy, but the overall trend is positive--after many years of not knowing the problem. We are cautiously optimistic.

I would be interested to hear what Dr. K. says about IV ABX. I am also going to ask my immunologist about it this week. I think you can't beat the fastpath that IV abx has, as opposed to weeks and weeks of high dose oral. Maybe do 3-4 days of IV and then followup with lose dose until forever.

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But what exactly does longterm antibiotics do?

 

wendy (or anyone), with regard to SC or RF, when they are put on high dose abx, again, what is that for? just to make sure they don't GET another infection? or is it that it takes long to get to an infection somewhere that can't be detected? I'm just confused, because if it is strep bacteria that they were trying to eradicate, shouldn't it take the normal amount of time (ie. a 10 day course), or is it just that those patients with SC keep getting it back, so they abx is to keep it away?

 

thanks, I just really don't understand about the longterm high dose abx that many of you here seem to make a difference. I just wish I could understand it better.

 

 

Faith

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But what exactly does longterm antibiotics do?

 

wendy (or anyone), with regard to SC or RF, when they are put on high dose abx, again, what is that for? just to make sure they don't GET another infection? or is it that it takes long to get to an infection somewhere that can't be detected? I'm just confused, because if it is strep bacteria that they were trying to eradicate, shouldn't it take the normal amount of time (ie. a 10 day course), or is it just that those patients with SC keep getting it back, so they abx is to keep it away?

 

thanks, I just really don't understand about the longterm high dose abx that many of you here seem to make a difference. I just wish I could understand it better.

 

 

Faith

 

 

Long term abx helps to prevent new infections in addition to killing intracellular strep, i.e, some kids have strep in the gut, bowels in addition to the brain. I believe each child is different in their "pandas afflictedness" depending on the length of time they have been ill, their immune system volatility, etc. That's just the thing about pandas, the "normal 10-day course of abx" does not work for these kids. I would very afraid to stop abx for my dd after what she's/we've been through, in addition to the financial burden ivig is. Just my opinion.

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There are multiple things here:

 

1) For SC or RF, prophylatic antibiotics are used to prevent re-infection after the intial illness. Subsequent attacks are usually much more severe so the attempt is made to prevent or reduce the severity of re-occurance through long-term antibiotics.

 

2) In 1976, Husby http://www.ncbi.nlm.nih.gov/pmc/articles/P.../je14441094.pdf showed that emm-type 6, 11, and 12 were implicated in RF and SC. Subsequent studies by Wannemaker and Kaplan have implicated other strains (such as those exhibiting M1 and M18).

 

3) While penicillin is still effective invitro against GABHS, in early 2003 it was shown that strep can go intracellular (like a virus) http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 . Penicillin is less effective at clearing for patients who have this strain (even in immune competent individuals)

 

4) The treatment dose and duration for antibiotics is based on studies of children who are not immuno-compromised. The objective of most of the studies investigating efficacy is to clear the disease in > 80% of children within a prescribe time window (typically 14 days). However in greater than 10% of cases, GABHS is not cleared.

 

Now we get to PANDAS. Antibiotics do not in and of themselves kill GABHS, you need a competent immune system to do so. Some of the kids have low IgG levels and it is thought that they do not mount a sufficient response. While carriage may explain positive throat cultures in some children (with low ASO and antiDNAseB) it is not actually known whether carriage is benign or whether it is rather a lingering long term infection.

 

Thus, the prophylaxis is intended to keep an infection from occuring (or if it does occur that it will be quickly curtailed). The high dose prophylaxis is (in my opinion) to clear intracellular strep or help an immunocompromized child fight an infection. There are also some anti-inflammatory and immuno-moculating properties of macrolides that help all of these items.

 

The exact dosage needed to maintain prophylaxis in children is not really known and seems to vary by weight, immune response and GABHS strain.

 

Long answer, but I hope it helps with your question.

 

Buster

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thanks Buster, (I feel like a wise-guy calling you Buster, :wacko: )

 

okay, so I understand about preventing a strep infection, for we don't want to deal with an exacerbation from it and further damage, for lack of a better word. BUT, what if you have a child like mine who does not seem to get the strep? I havn't suspected that for the past three years, if he had it, who knows., but he does get virus at least once a year. I know that can further cause problems. I think Dr. L. said it's possible for it to be one strep infection that starts the whole thing in motion, and that alot of these kids don't usually show positive for it. but she also said she didn't think my son had strep in the gut. what she thinks he has, I'm not really sure.

 

So basically, if my son just gets viruses, the abx isn't really going to help that, right? and when you say "intracellular", does this mean that there could be infection deep within the cells that needs to be snuffed out, in a sense? Dr. L. didn't really tell me anything like that, so I'm just going by what I read here.

 

If I opt not to do the month long steroid, does anyone think it possible that I could still be helped by the abx, even if it takes longer? 'Sammy' only did abx, correct? does she state in the book how exactly that helped? was it just to keep the strep at bay? was there any medical or scientific explanation in the book?

 

Faith

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Faith:

 

I think about the question you pose every single day. Why did the "Saving Sammy" dose of 2000 mg. of Augmentin help Sammy. Was it a deep rooted or intracellular strep that needed the high dose antibiotics the issue or was it the anti-inflammatory properties of the antibiotics that helped his possible auto-immune disease?

 

And the answer may be different for every child. Sammy did have elevated strep and I believe so does Worried Dad's son. So, maybe that is why they needed the high dose antibiotics.

 

In our case, strep was the initial trigger, but any virus, lack of sleep or too much sugar can create a little exacerbation. Basically, anything that can tax the immune system can produce a little flare of symptoms. And our son's ASO levels did not always match his symptoms.

 

Just thinking out loud.

 

Elizabeth

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Hi Faith,

 

This is probably better for a different thread (since it doesn't have to do with the original topic). Let me try a short answer here and if it's not clear please start a new thread on the topic.

 

SC and PANDAS are thought to be caused by 3 independent events:

  • an immune response to GABHS that creates a faulty antibody
  • a failure by the T-regulator cells to supress the faulty antibody
  • a breach of the blood brain barrier

In the initial presenting condition approximately 3-6 weeks occurs between the GABHS infection and the SC onset. This seems to be the time for the adaptive immune system to create memory B-cells and the antibody response. In subsequent exposures the onset can be immediate and even preceed the clinical symptoms of GABHS. This is thought to be because the recipe for the faulty antibody is now programmed into memory B-cells and thus the body's own rapid response system is now creating more faulty antibodies.

 

The antibodies seem to have a half-life (turnover rate) of 4-6 weeks. This means in 4-6 weeks half the antibodies should disappear if there isn't more being made. If GABHS has gone intracellular, it is thought that when the cell bursts/dies it releases into the blood stream some GABHS that the immune system destroys -- however, in doing so, it makes more antibodies (since the B-cells recognize it immediately). This is why some think the higher doses of antibiotics are helping -- they are bacteriacidal at the high dose.

 

This addresses the first two items above. However the opening of the BBB seems to be the real variable... The BBB seems to open from a variety of causes but severe inflammation and high stress seem to be two strong causes. This aspect is not well studied, but I think this explains the long delay from GABHS and the exposure of symptoms.

 

With respect to steroids, they seem to have two effects. They reduce inflammation (and thereby may close the BBB temporarily) and they suppress immune response (such that the B cells don't produce so many antibodies). It is not known which effect is being seen, but I think given the brevity of time, it is likely the BBB closure.

 

Steroids do not have an effect on GABHS. Steroids are anti-inflammatory and can help to suppress auto-immune responses. We tried steroids one time during an exacerbation and the steroids did have an effect 9 days later. We have only used steroids the one time, but it helped confirm it was likely related to inflammation or auto-immune.

 

Regards,

 

Buster

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