Steroid Taper~~ and other musings

[PANDASmcnuggetsw/fry/coke]

We have recieved lots of bloodwork and results after Rothman and there does not appear to be present infection. I think we finally killed the myco-P that had been there for so long after 2 1/2 years of ABX! We have two ivigs behind us and no one wanting to do it again. (Docs don't think it would be helpful at this point) Her bloodwork/immune panels don't show that she would be a good candidate for plasmapheresis or continued ABX. So we are off the abx and doing CBT and lo dose ssri for the very first time. Docs at Rothman were adamant that when this all hit at age 12, it was PANS certainly.

 

Here's my question~~ she only did the 5 day steroid burst for Dr k before her first ivig and never did a longer taper. I'm wondering what makes a person a good candidate for a longer 30 day steroid taper. Or does it seem like the docs say, well let's just give this a try. (She does not have asthma btw. re recent scary post about steroids!)

 

She is 14, not exacerbating, but still entrenched in intrusive thought OCD, that would make a mom consider openning her own wrists...:-(

The ssri is helping some~ it has only been about 6 1/2 weeks, but I have always wondered if we should attempt a longer taper.

 

She also is allergic to a few things which we didn't know before and CT scan shows sinusitus after 2 1/2 years of abx~~ maybe that is all allergy? We are supposed to see an ENT now, but I have no idea what they would do...

 

Thanks for any suggestions!

PANDAS McNUGGETS w/FRY/COKE

[PowPow]

I am so genuinely glad that she is being helped some by the SSRI and CBT.

And glad the infection issue might be old news!

I am not sure how to know if steroids would be good or not- but for my kids (in exacerbations)_ the steroids are so helpful. Like night and day~

Maybe see the ENT and see if he has some ideas for that sinusitis~maybe if you can get allergies under control and keep her unexposed to whatever it is, she will heal more!

The PANDAS doc we see only has given us a month or more even in steroids- though 2 of my daughters (the third has not been checked) has pos ANA screens and other autoimmune markers, so maybe that is why?

 

on another topic~ did Rothman center address intrusive thought OCD, by that I mean the horrible (violent, sexual, evil, whatever) thought kind, not "the food is contaminated" intrusive thought?

[T_Mom]

Hi--I am wondering what you mean that:

"Her bloodwork/immune panels don't show that she would be a good candidate for plasmapheresis or continued ABX. So we are off the abx "

 

What bloodwork indicates whether or not a PANS child is a good candidate for pheresis? As far as I know, there are only one or two doctors doing pheresis for kids, have those doctors told you she is not a good candidate?

 

Your d is still entrenched in intrusive thought OCD, I can tell you that pheresis was what completely put a stop to our d's intrusive thoughts within two weeks. Thoughts which had persisted for 9 long, horrible months.

She had difficulty focusing due to the thoughts, they were very bad.

 

I guess I also wonder if the fact that your d is not on abx could be contributing? Obviously I do not know the entire story behind your d's situation, but if she is no longer on abx, if you can, would that be a prudent step to see if these would help?

[PANDASmcnuggetsw/fry/coke]

T.Mom,

 

It was Rothman that ordered it so wasn't Dr Latimer (and I forget which other Dr that does it) There were a lot of tests, including C3D Immune Complex and Immune Complex Detection by C1Q Binding. These were the two that Rothman seemed to be focusing on, indicating "plasmaphresis and further IVIG would not be helpful." She did have one out of 6 phospholipid antibodies termed "EQUIVOCAL", meaning not in the positive or negative range. I am not sure what that means.

 

As for abx, she was on them for almost 2 and 1/2 years and b/c she was still suffering so much ON them, I had no problem trying a go without them. I see no difference without them and it has been a few weeks off.

 

I am thrilled to hear how well your daughter did after the plasmapheresis. Was it done by Dr L? Perhaps we should go get another opinion...

 

THANKS!

PMCNUGGETS

[PANDASmcnuggetsw/fry/coke]

PowPow,

 

Thank you for the encouragement...and YES they did. Not easy at all.:-(

But I have learned that we (daughter and I) can be strong even in the most difficult times...

[bigmighty]

DS 14 benefited immensely from a 19 day steroid taper followed by a month of ibuprofen, whereas a previous 5 days on steroids showed no relief whatsoever. If it is appropriate for your DD, it would certainly be worth a try.

[LNN]

If there's persistent sinusitis, you may want to read up a little on MARCONS - which is an abx-resistant staph infection and often goes hand in hand with biofilms - thick mucus that cloaks colonies of bacteria. Here's one article I found in a quick search just to give you a little background http://goodbyelyme.com/free-articles/biofilm/marcons

It's a common topic in lyme but other doctors may not be familiar with it. Here's another ling but fascinating article on biofilms in general http://bacteriality.com/2008/05/26/biofilm/

 

For films, you need to add a mucus thinning agent like nattokinase, NAC or perhaps even something like mucinex. You need to break down the protection that the mucus provides before abx can get at the bacteria hiding in it. If your immune system can't see the bacteria, your blood work measuring immune system activation could be normal (such as C3d) but the infection could still be there.

 

As you say, the sinusitis could be allergies. But it could also be a chronic sinus infection that has been impervious to abx. So just something to consider.

[PANDASmcnuggetsw/fry/coke]

LLM~

 

That is fascinating. I have never heard of that. She has been on N-AC for over a year, but not the Mucinex. I'll look into that and your articles.

 

Bigmighty,

Thank you for the input on the taper. May I asked who did it for your son? There are no doctors around here that are PANS literate, but maybe someone else could help us out.

 

 

Thanks!

[kos_mom]

Sinusitis from environmental allergies clearly has played a role for my DD. It took two surgeries to clear it up. The first consisted of adenoicetomy, nasal turbination, and sinus drainage. Three months later the sinuses again were all blocked and long term abx and steroids didn't help so balloon sinuplasty was performed. This helped but it hasn't eliminated susceptibility to sinus infections--she's had several since then, but they have cleared up much more quickly.

[bigmighty]

LLM~

 

That is fascinating. I have never heard of that. She has been on N-AC for over a year, but not the Mucinex. I'll look into that and your articles.

 

Bigmighty,

Thank you for the input on the taper. May I asked who did it for your son? There are no doctors around here that are PANS literate, but maybe someone else could help us out.

 

 

Thanks!

 

Dr. B. did the taper. We are in Northern VA, he is in CT. If DS requires a future taper, his internist is on board to prescribe it, after seeing the results. I suspect his pediatrician would also be willing to prescribe, at this point, if we needed it. Where are you located?

[PANDASmcnuggetsw/fry/coke]

I'll PM you.