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I just got back some tests we ran as a follow up to DS's HDivig - 14 weeks post.

 

Mycoplasma pneumoniae....2430 (negative is under 100) This is the IgG number, the igM was negative. So, I don't know what that means if IgG is positive and IgM is negative. He also has not been sick in a very long time (hate to write that out loud, knock on wood, because...he is PITAND)

 

He's been on full strength azithromycin for over a year. I try to reduce to prophylactic does every now and a again, but I swear he does a little bit better on the higher dose, so for the most part he's been getting 500mg/day.

 

He also came up positive on a couple Lyme bands, I don't know how to interpret those results, will post that on Lyme board. They aren't nearly as concerning as that 2430 at the moment. Since my son never had positive titers or strep infection, this could be the smoking gun we've been looking for.

 

2430 seems pretty positive for something I didn't think he could possibly be in this category since azith is a treatment for this, and he's been on full strength azith for over a year!

 

Anyone else out there with this?

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Hi Norcalmom,

 

My dd tested positive for myco p this past summer with no symptoms other than a very bad motor tic (new). Her IGM (current infection) just came up positive, with no number. The IGG was low. At re-test, the IGM was negative, again no number, just none detected, and IGG went up a little. She is on zithromax still.

 

Was a myco p test done prior to the IVIG? My assumption is that you can get antibodies to myco p from other people, which I'm not sure is such a bad thing. Could offer protection?? IGM would show a current infection. A test prior to IVIG would tell you how much to worry maybe.

 

I have a very good, thorough, long article that I will link. If you read it all, you will learn alot about myco p. It can be very nasty, like lyme and strep. But myco p holds on to and hides in the host cell. In time it can change the cellular makeup of the cell. It hides etc.

 

http://cmr.asm.org/cgi/content/full/17/4/697

 

That is a very high number, but again, it could be from a pool of donors. You will see from the article too, that zithromax is reported to not necessarily be bactericidal in patients with compromised immune systems. There are other abx that older children can take, but for younger ones, zith is usually the first choice that I have found. Biaxin as well, perhaps a bit stronger?? I am not exactly sure.

 

here is another interesting abstract to an article

 

http://ajp.psychiatryonline.org/cgi/content/full/157/3/481-a

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Hi,

 

wow, this is high! We think Mycoplasma pneumoniae is what we are dealing with as well. A positive lab corresponded with my son's last major episode (tics, coprolalia, complete cognitive shutdown, dilated pupils, etc.)

 

During an increase in symptoms (from being relatively okay) last May, we found Mp to be climbing again, so another exposure. He has had chronic upper respiratory infections, chronic sinus infections, chronic gut infections (that result in soiling problems).

 

There is support in the literature for symptoms with this infection, as I'm sure you're aware. I'm sure chronic strep pharyngitis started the ball rolling when he was young, though. Our new doc is treating my son next month with IVIG based on this and NOT evidence of strep. He came out and said that there is suspicion that other infections could be associated with the same set of psych symptoms, and "they" are looking into this. Since nobody knows for sure, he is willing to treat aggressively!

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Thanks for sharing your info Phasmid. Physically, we didn't have a link to strep...no history of strep throat (don't think he's ever had it) BUT do think that the exacerbation that set this all in motion was related to peri-anal strep - a mild case that I treated at home with topical antibiotics (didn't know that was what that rash was at that time...but he had it a couple months before every think hit the fan...and I found out about that kind of strep a year later when I fell upon it on some site and recognized the rash.

 

No history of upper resp. infection (not bad anyway)...EXCEPT he had a documented case of pnemonia when he was 6..and yes...I think his symptoms started after that. I don't think you could call it "sudden, acute onset" at that time though. I can't remember. Just that over the years he had "difficult" phases and I can remember two times where he had unresonable fears (water, not swimming but passing over it in boat, car or plane). And he "grew" out of them.

 

HIs pandas(he's PITAND actually) symtoms - OCD (he cannot watch me eat or swallow anything, even saliva...and its just me that sets him off, and my husband a little). This is the only pandas thing that is clinicaly significant since the IVIG. all the other symptoms or gone, or very minor. However, we haven't had any illness yet this year. He had a very minor 3 day cold at week 7 post ivig, and did have some symtoms, but they were minor and gone in a week.

 

HIs PITAND symptoms were:

Tics - violent head shaking for hours each day. Various facial tics, some small audible tics

EXTREME irritablility

short attention span

hand flapping

Inability to do spatial tasks while at the same time using fine motor (can't copy things from board, can't do math and write at same time -He was in bottom 2% in the test that measures the ability to do both at the same time...above average to gifted in most other areas, so it really screamed pandas.

bedwetting - in exacerbation only

obsession with death

nightmares

insomnia

separation anxiety

reassurance questions

daytime frequent urination (not too bad..but teacher noticed)

body "obsession" - he was not restricting his food, but was constantly talking and thinking about how he looked. Felt he looked "weird", fat...usually inked to the reassurance questions

and and almost forgot my favorite... the compulsion to look into the sun

 

Most of symptoms would disappear or become subclinical when not exacerbating. He improved greatly on Azithromycin. He had 3 or so exacerbations last year, and after each I could see his baseline creep up...instead of down..so that is when we decided on IVIG.

 

There were 3 things that made me go the ivig route:

1)baseline moving in wrong direction

2)psychological testing that revealed that spatial/fine motor part of his brain not working AT ALL

3)cunninghams test - CAM K 163 and very high anti - lysogangliosides. Not in exacerbation at time of draw.

 

I would not have known about number two unless we did the testing. He was getting As and Bs at school, his brain was compensating in other ways... but huge anxiety about being asked to perform things at any moment that he could not do..and everyone else took for granted. Anxiety took the form of not seeming to care about work, carelessness, forgetting to turn things in, rushing though things. We though part of issue was that he is very intelligent, and was bored, as well as frustrated with doing things like showing work - why show work when he could do it all in his head and write down one answer? - but the case was he COULD NOT perform the simple tasked he was asked to do daily. The pychologist explained that this attitude is a common way of showing anxiety, which I did not know, but once he said it I could see it. Pretty much gone now after ivig. Taking pride in his work again.

 

Did you have cunninghams tests done phasmid? I know your son has compulsions too - he has trich right?

 

I'm glad you have a doctor that has found this and is treating aggressively. I think that Myco P is mentioned in some articles by Swedo, I have to do some research, I'm not really sure of that, but will let you know if I turn anything up.

 

Good luck with your IVIG - it was really great for my son. We did 1.5 dose., just once.

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Yes, that was us! The looking into the sun compulsion! I thought that was you, but couldn't remember. For my son, really scary since already blind in one eye!

 

My son's camK was 152 and he has high antilysoganglioside, but our doc doesn't know what this all means. My son hasn't had a full set of brows or lashes since 3rd grade. The closest we came was toward end of 6th grade, but they didn't last long! We haven't given out school photos in all these years. Praying and hoping that IVIG finally makes the difference for him.

Thanks!

 

 

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Thanks for sharing your info Phasmid. Physically, we didn't have a link to strep...no history of strep throat (don't think he's ever had it) BUT do think that the exacerbation that set this all in motion was related to peri-anal strep - a mild case that I treated at home with topical antibiotics (didn't know that was what that rash was at that time...but he had it a couple months before every think hit the fan...and I found out about that kind of strep a year later when I fell upon it on some site and recognized the rash.

 

No history of upper resp. infection (not bad anyway)...EXCEPT he had a documented case of pnemonia when he was 6..and yes...I think his symptoms started after that. I don't think you could call it "sudden, acute onset" at that time though. I can't remember. Just that over the years he had "difficult" phases and I can remember two times where he had unresonable fears (water, not swimming but passing over it in boat, car or plane). And he "grew" out of them.

 

HIs pandas(he's PITAND actually) symtoms - OCD (he cannot watch me eat or swallow anything, even saliva...and its just me that sets him off, and my husband a little). This is the only pandas thing that is clinicaly significant since the IVIG. all the other symptoms or gone, or very minor. However, we haven't had any illness yet this year. He had a very minor 3 day cold at week 7 post ivig, and did have some symtoms, but they were minor and gone in a week.

 

HIs PITAND symptoms were:

Tics - violent head shaking for hours each day. Various facial tics, some small audible tics

EXTREME irritablility

short attention span

hand flapping

Inability to do spatial tasks while at the same time using fine motor (can't copy things from board, can't do math and write at same time -He was in bottom 2% in the test that measures the ability to do both at the same time...above average to gifted in most other areas, so it really screamed pandas.

bedwetting - in exacerbation only

obsession with death

nightmares

insomnia

separation anxiety

reassurance questions

daytime frequent urination (not too bad..but teacher noticed)

body "obsession" - he was not restricting his food, but was constantly talking and thinking about how he looked. Felt he looked "weird", fat...usually inked to the reassurance questions

and and almost forgot my favorite... the compulsion to look into the sun

 

Most of symptoms would disappear or become subclinical when not exacerbating. He improved greatly on Azithromycin. He had 3 or so exacerbations last year, and after each I could see his baseline creep up...instead of down..so that is when we decided on IVIG.

 

There were 3 things that made me go the ivig route:

1)baseline moving in wrong direction

2)psychological testing that revealed that spatial/fine motor part of his brain not working AT ALL

3)cunninghams test - CAM K 163 and very high anti - lysogangliosides. Not in exacerbation at time of draw.

 

I would not have known about number two unless we did the testing. He was getting As and Bs at school, his brain was compensating in other ways... but huge anxiety about being asked to perform things at any moment that he could not do..and everyone else took for granted. Anxiety took the form of not seeming to care about work, carelessness, forgetting to turn things in, rushing though things. We though part of issue was that he is very intelligent, and was bored, as well as frustrated with doing things like showing work - why show work when he could do it all in his head and write down one answer? - but the case was he COULD NOT perform the simple tasked he was asked to do daily. The pychologist explained that this attitude is a common way of showing anxiety, which I did not know, but once he said it I could see it. Pretty much gone now after ivig. Taking pride in his work again.Did you have cunninghams tests done phasmid? I know your son has compulsions too - he has trich right?

 

I'm glad you have a doctor that has found this and is treating aggressively. I think that Myco P is mentioned in some articles by Swedo, I have to do some research, I'm not really sure of that, but will let you know if I turn anything up.

 

Good luck with your IVIG - it was really great for my son. We did 1.5 dose., just once.

 

i think you mentioned this before...way long ago...

what kinda of test is this...

this is my son...i keep telling my dh that this is part of pan/pits.....

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Mom Love - thank you for the articles! I will it all in mind along with the ivig implications on this number.

Phasmid - OMG - the sun thing was you guys?! I'd say that you are going to see big things with your ivig. Our kids symtoms are similar it seems.

Fixit- Yes, that was me that mentioned it before. I keep harping on it because without the IQ testing, I never would have known, and I know most people don't have the resources to do all the tests that show all the ways this effects our kids.

 

I used a phychologist that was very experienced in working with "2e" - twice exceptional kids, becasue that is what I though my son would fall into. There are many different types of learning disabilities I learned.

 

We did a complete assessment (academic testing, IQ testing, personality and learning style) , but the most informative piece for me was the IQ tests - because it isolated different skills, and put numbers on things. I kept reading that pandas kids have decline in math and in writing, but my son was still pretty good at math, we were seeing decline, but not hugely significant, he still understood everything, and the biggest problem (which I didn't see as a problem) was that he wouldn't write down stuff "show your work"..he would just spit out answer. Most of the time correctly. but in 5th grade some of that stuff gets too complicated to do in your head.

 

You can probably get just the IQ testing done. I hated the idea of giving kids IQ tests, but for this purpose, it was very eye opening. Think of it as a diagnostic tool for your child's brain rather than putting a number on their intelligence.

 

The specific names for the test(s) are the Wechsler Intelligence Scale, Processing Speed - the Coding and Symbol search tests. Those are the two parts he bombed on.

 

There are different types of IQ tests, know that Buster and EAmom had similar results for their daughter on what looked to be measuring the same thing on a different test (different name).

 

So the two areas where we see pandas kids suffering - handwriting and math - this tests where these two functions overlap (using spatial abilites and fine motor at same time)...and it was screaming pandas because it was like...70 or 80 points under his next lowest score on these test. It invalidates the whole IQ test basically, but hat was fine with me, I wasn't there to get a number, I was looking for evidence that pandas was effecting his brain - and I found it. Based on that I could have gotten him in a 504 plan, and permission to use an alpha smart. He hasn't needed this since he responded so well to the ivig we had done in August, he is copying things from the board just fine, showing his work, taking pride in his work again.

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Latissse makes a nice stocking stuffer! ;)

 

I was sad to read about the photos and holiday card.I feel the same way about photos taken during the "bad" times- its like I can see it in his eyes in those photos. I can't stand to look at them...I can imagine having such an outward sign of the illness staring you in the face. Its like when my son was ticcing. Painful to look at. I hope I can detach from that feeling someday. PTSD.

 

FYI - I had some minor trich as a kid...not like your son...but I know the feeling! Still like to pull on my eyebrows sometimes. Its my version of biting nails or twisting hair.

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For those of you out there interested more in myco p and testing for it, here is another paper:

http://jcm.asm.org/cgi/content/full/43/5/2277

 

What I mostly too away from that paper is that some patient have weak antibody response so don't show a IgM. (perhaps because my son only had one titer for strep pnemoniae out of 14 serotypes!) so other types of tests might be in order (and there are a few differnt types of tests, not just igg and igm). There is also some mention of carriage int here, haven't looked into that yet...I was trying to find a graph that shows when the rise in IgG occurs after infection and how long it lasts.

 

Also, I emailed Dr K - and he responded very promptly, he didn't seem too concerned about the high IgG..but he did say after one high does ivig that -

If there is a significant improvement (as with my son) but the COMPLETE (90%+) recovery has not been achieved (as with my son) the following "formula" would apply:

If there should an overall improvement of 75% or more I would suggest to wait and see how much further improvement shall materialize of the ensuing months.

If further improvements shall stole and DS's condition gets "stuck" below 90% (especially if his full functioning is significantly affected), another treatment may be indicated.

If there should be at any time REGRESSION of any significance that shall lasts for more than couple of weeks, another treatment may be considered.

 

Even though his Mycoplasma pneumonie IgG is significantly elevated Zitromax that he has been on (by now) should have done the job and doubts that this particular anomaly has ANY significant influence on his overall condition.

 

HE didn't say "booster" or lower does...he said another treatment. Which for us was 1.5 ivig.

 

Here is excerpt from summary of the paper I found above for those looking into myco P:

Serology remains a practical and undemanding method for the diagnosis of M. pneumoniae infection, particularly in young patients with a time of disease onset of more than 1 week earlier. However, given the low sensitivities of IgM assays, particularly for adult patients, who are known to develop weak antibody responses, and the need for paired serum specimens with a rise in IgG antibody titer for the diagnosis of M. pneumoniae infection, nucleic acid amplification methods might become the preferred diagnostic procedures for the diagnosis of M. pneumoniae infections, provided that the quality of the procedures is guaranteed.

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