Immune workups and antibiotics

[nevergiveup]

My dd"s igg"s raised one year after high dose abx.

If the imune doc thinks your kids immune system is healthy and they do not suffer from chronic infection, and even with low igg markers the doc was going to assume they are healthy why did the doc run the test of igg and subclasses? What was he looking for? I cannot speak on behalf of the boy you know who was diagnosed with cvid, but I can tell you that the panda kids are very ill and some are stabalized with monthly infusions. A lot have legitimate autoimmune disease and markers and chronic sinus infections or resp infect. I would continue to monitor your kids immune systems since autoimmune diseases change the immune system over time.

[sf_mom]

Underlying infection is most likely the culprit. Pockets of strep could be any where, lungs, soft tissue, sinuses, etc. Bacteria needs to be kept at a manageable level until immune system pounces back and can function on its own. Some kids, as you know, have inherent issue with their immune system.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

-Wendy

[P_Mom]

I think you are reading too much into my posts.....I was just "brainstorming" on to why my kids Igg's have dropped....and thought it could be due to the chronic antibiotic use....that is all. I always make a piont to say this is about MY kids....and I know many are different with different issues...people always seem to miss that. I think it is something to think about. I understand your childs levels raised...but, mine dropped, for no apparent reason...so, what gives? Could it be something we are missing??

 

I stated in my previous post why the immune doc did a work-up....because I insisted on it after reading all the comments about immune defiencies etc. on the board. He was going on nothing else but MY insistance.

 

Not ALL PANDAS kids are very ill......mine are not and have never been. My younger son had one BAD episode that resolved with antibiotics in less than a month, my older son presented second and resolved in basically a day of antibiotics (treated RAPIDLY) They both have been doing well since...and are healthy robust children. Again...I KNOW this is not the case for all..... and I am so sorry for the children and families who suffer more and I hope that whatever treatment they do, works, and, my hope is also for everyone to find the answers they seek....I have been on these boards for 3 years....when there was nobody on here posting about PANDAS except for Ronna and Dee Dee, there was nothing on here except Tourettes, basically. There was VERY minimal info. out there. I believe it is a spectrum disease...some being widely affected...some minimally. Some having underlying issues that could make things worse.....some do not. Yes, some are stabilized with IVIG....some are not. This is not a catch all treatment or presentation, nor do they all have the same underlying issues.

 

My kids have no chronic issues...strep only 2 times each...they are now 7 and 10. I understand your point..but, be open to my ideas as well. I will continue to monitor my children...like I always have...I will not let something slip past me.

[P_Mom]

SF Mom...thanks for the idea and article....a bit hard for me to understand, though.

 

Anyway, I highly doubt my kids have an ongoing infection....since this manifest almost 3 years ago...they have had every test, blood test, allergy test, scan, tonsil/adenoid removal, every kind of system work-up, etc. that I could think of and was mentioned on this board. There are no indications of infections anywhere in either child. They have been on antibiotics (3 different kinds) for almost 3 years......I won't say it is not possible, though...just not probable in their case.

 

I would also think that if they had strep hiding in their systems somewhere...wouldn't they continue to have PANDAS symptoms????

[Suzan]

I think the topic is very interesting and I will be curious to see what my girls show in a year. Their current testing is low normal for IgA, IgG and subclasses, etc. I wonder what the abx will do for them. If they are low responders now, what will a year of abx do for them?

 

Dr. T told us that steriods would not be a good idea for them because he does not want to suppress their system since they seem to not mount a good immune response. They fall into the low titers even with confirmed strep, failed S. Pneumo, etc. My girls start to fail when we take them off the antibitoics so Dr. T is thinking there may be lingering strep so we will continue with the antibiotics and even give them a little blast to see if that helps.

 

Anyway, I know this is related to our situation and not yours but I couldn't help give my thoughts on how the immune related testing might relate to us

 

Susan

[sf_mom]

It is a tough article and thankfully my father-in-law who is a Dr. was able to interpret. http://www.latitudes.org/forums/index.php?showtopic=6386

 

You are so lucky to have them in such good health. I'm wondering..... have you thought of taking them off antibiotics or lower dose? At some point, their own immune system should kick in and be able to manage. Other than, lower IgGs you seem like you are in the safe zone. What is your plan?

 

Our goal: IVIG (as many needed) and high does antibiotics until symptomless for a year, retest immune system and then to safely lower antibiotics over time. ULTIMATE GOAL: no antibiotic.

 

-Wendy

 

 

 

 

 

SF Mom...thanks for the idea and article....a bit hard for me to understand, though.

 

Anyway, I highly doubt my kids have an ongoing infection....since this manifest almost 3 years ago...they have had every test, blood test, allergy test, scan, tonsil/adenoid removal, every kind of system work-up, etc. that I could think of and was mentioned on this board. There are no indications of infections anywhere in either child. They have been on antibiotics (3 different kinds) for almost 3 years......I won't say it is not possible, though...just not probable in their case.

 

I would also think that if they had strep hiding in their systems somewhere...wouldn't they continue to have PANDAS symptoms????

[P_Mom]

Of course, I think all of our goals is to be on nothing....meaning no antibiotics.

 

I can't lower the dose unless I just take them off.....they both just take Pen VK daily.......the proph. dose...nothing would be a lesser thing.... Actually, there was a small time frame in the summer when I took them off for a bit ( not that long, couple of days) and they were fine..the same. I think for my kids the antibiotics are just to keep strep away.

 

My Plan: KEEP STREP AWAY!!!!!! Keep them healthy...I saw what strep did and I will not go there again if there is anythng I can do to avoid it. I will keep them on proph antibiotics until I (and Dr. Latimer) feel they are out of the woods!!!

 

Dr. Latimer is on board to do whatever is necessary if my children should worsen. She looked me straight in the eyes when I expressed fear that they would "get bad"...and she said..."I won't let them."

 

So, she keeps them on Pen Vk until "PANDAS is a distant memory." Or, if something goes bad...she will do IVIG, PEX, whatever.

 

Happy New Year!

[sf_mom]

Sounds like you are in good hands. I KNOW YOUR FEAR.

 

Happy New Year.

 

Of course, I think all of our goals is to be on nothing....meaning no antibiotics.

 

I can't lower the dose unless I just take them off.....they both just take Pen VK daily.......the proph. dose...nothing would be a lesser thing.... Actually, there was a small time frame in the summer when I took them off for a bit ( not that long, couple of days) and they were fine..the same. I think for my kids the antibiotics are just to keep strep away.

 

My Plan: KEEP STREP AWAY!!!!!! Keep them healthy...I saw what strep did and I will not go there again if there is anythng I can do to avoid it. I will keep them on proph antibiotics until I (and Dr. Latimer) feel they are out of the woods!!!

 

Dr. Latimer is on board to do whatever is necessary if my children should worsen. She looked me straight in the eyes when I expressed fear that they would "get bad"...and she said..."I won't let them."

 

So, she keeps them on Pen Vk until "PANDAS is a distant memory." Or, if something goes bad...she will do IVIG, PEX, whatever.

 

Happy New Year!

[faith]

P.mom,

I think you might be on to something about the antibiotics. you've probably read alot of stuff like this, but here's some interesting stuff in this link. I'm too tired at the moment to poke at it, but some might be interested in some of this. in the sixth paragraph, it mentions antiboitics depressing the immune system? don't know if any of this is viable info, but i thought it was interesting.

 

http://www.mnwelldir.org/docs/immune/immune1.htm

[sf_mom]

Faith: Hopefully I can clarify so it makes a little sense to you. The antibiotics do take over the job of the antibodies (but remember they only do half the job) and that is what they mean by depress. Some believe the body should do it entirely on its own and we all know that sometimes that may be an insurmountable job. When you have an auto-immune disease you have possible NO good antibodies and only bad. Add a resilient bacteria to the mix and you have one very sick child. The antibiotics as well as IVIG help to change that for children.

 

We are just getting the results back for both our twins...... and because they are BOTH showing deficiencies in their IGGs, Strep Antibody Titers, Low White, Low Red, High Lympocytes they both are fighting something and will most likely be treated for PID 'primary immune deficiency' before the auto-immune process starts kicking in.

 

Happy to call it PAND and take off the AS if it makes everyone in the medical community feel better.

 

I highly recommend given your son's CaM Kinase score and physical presentation... to test his IgG Subclasses, do a CBC panel and Strep Pneumoniae Antibody IGG to determine if he is fighting off something. AND, have FAITH in the Dr.s that are treating PANDAS and I believe your son will get better.

 

-Wendy

[P_Mom]

Wendy...when you say strep antibody panels...are you referring to s. pneumonia?? Or the ASO and AntiDNAase B strep titers? (Two totally different bacterias)? Just a little confused.....

 

How low were your twins IGG's??

[sf_mom]

One twin's total serum 525 (boy) and one twin's total serum 412 (deficient IgG 1, IgG 3 - girl), Strep Pneumoniae Antibody Igg (deficiencies 13/14 - boy, deficiencies in 10/14 - girl). No ASO, AntiDNAse B in our little boy's (typical for Kawasaki's)... Still need to test our little girl's. CaM Kinase 148 (boy) still need to test our little girl.

 

 

 

Wendy...when you say strep antibody panels...are you referring to s. pneumonia?? Or the ASO and AntiDNAase B strep titers? (Two totally different bacterias)? Just a little confused.....

 

How low were your twins IGG's??

[smartyjones]

p.mom - just curious, i don't seem to understand your take on this - is it that you are relieved as to a plausible answer as to why their igg could drop? are you expressing concern about the abx having the effect of dropping the igg? or are you just stating a possible relationship without a judgement of good or bad?