BLOOD WORK? FOR WHAT?

[BethM33]

So FINALLY, an answer to prayer... The dr. called and said the neuro. wants my son to have blood work done up tomorrow, then she will see when she can get him in for an appt. with her.

So, tomorrow morning at 8:30, we're taking him to get blood work done.

I'm just curious...what will they be looking for exactly??

 

He was diagnosed with PANDAS at the age of 3. (he's 5 now.)

At the time, they did not do any sort of blood work or MRI or anything. She (the top pediatric neuro in the state) just saw him and decided that's what he had, etc.

She has not followed up with him until now, either.

We were under the impression nothing could be done, so we just dealt with it. The only reason I kept calling and calling this time, is due to the tic getting worse and worse and always adding on a new behavior/tic each day...something has to be going on!

Anyway, thankfully they will be seeing him tomorrow.

So what's she looking for in the blood work?

Thanks ya'll

Beth

[mama2alex]

Hi Beth,

 

When you go in tomorrow morning, you should ask them for a list of the tests they're running and make sure you're clear on what each one is for before you leave. Much easier than trying to get the info over the phone. No one hear will be able to answer your question because every doctor approaches this differently, depending on how much they know about it and what they're specialty is.

 

Also, I saw your other post, and I'm wondering what this doctor did for your child at the time of diagnosis? Did they prescribe antibiotics, prednisone, anything? Or did they just say this is PANDAS and nothing can be done? If so, you may want to get a second opinion. They can be world famous and still not know how to treat PANDAS, even if they do believe in it. I'm finding that out first-hand.

 

There's a thread on doctors who've treated PANDAS on this forum - it's at the top under "Helpful Threads for PANDAS." Also, you can email Beth Maloney, author of "Saving Sammy" at info@savingsammy.net and request her latest version of the list of doctors she is compiling.

 

In the meantime, try browsing through as many old posts as you can. Look for topics that catch your eye and read. You'll learn a lot and be better prepared to discuss what needs to be done with your doctor.

 

Keep us posted!

 

Jennifer

[sf_mom]

Couple of things:

 

ESR - general inflammation, C Reactive Protein 'CRP': White Blood Cell Count and Red Blood Count, STREP PNEUMOCOCCAL ANTIBODY TITER deficiencies tell you your child has the ability or not to mount a response to strep bacteria. IgG Subclasses to see if there is an underlying immune problem. Google each one of these tests and add them to the list if they are not included tomorrow. When testing for Rheumatic Fever Dr.'s typically do the ESR, CRP, Anti-DNase-B plus Ecco..... because PANDAS is similar they should be done in conjunction with STREP PNEUMOCOCCAL ANTIBODY TITER and IgG Subclasses.

 

A low white blood cell count usually is caused by one of the following:

 

- Viral infections that disrupt bone marrow function

- Congenital disorders characterized by diminished bone marrow function

- Cancer or other diseases that damage bone marrow

- Autoimmune disorders that destroy white blood cells or bone marrow cells

- Overwhelming infections that use up white blood cells faster than they can be produced

- Drugs that destroy white blood cells or damage bone marrow

 

Hopefully, that gives you a start and maybe someone else will chime in.

[dcmom]

SF Mom- I believe the Pneumococcal strep titers test is for antibodies to strep pneumonia, which is the bacteria that can cause pneumonia and ear infections, but not GABHS (strep throat). Theoretically one would have these antibodies if they were vaccinated or exposed to strep pneumonia. I think it is a bit of a jump to say that titer test, tests for one's ability to fight all strep. There is also a possibility that many healthy kids fail these titers (maybe the vaccine has a high failure rate? I don't believe this has been looked at). These titers may be part of a puzzle, but certainly not the whole picture.

 

If you have more information to shed light on this, please post...

[sf_mom]

Concur..... but its fairly common in PANDAS children. For example, if you believe Pandas, is SC, is RF (I do) that particular bacteria is of the strep pneumonia and NOT GABHS. BUT, because the M1 and M18 strain of bacteria is so resilient it effectively depletes all antibodies trying to fight it off and kids become reactive to any strep related illnesses and eventually any cold, virus or allergy depending on how long they've been sick. THESE are my theories only, but I assure you if my younger son has high CaM Kinase I will concretely be able to prove RF in potentially 4 boys not all genetically related. AND, RF only attacks the heart in 60% affected, similar was found in PANDAS kids.

 

-Wendy

 

SF Mom- I believe the Pneumococcal strep titers test is for antibodies to strep pneumonia, which is the bacteria that can cause pneumonia and ear infections, but not GABHS (strep throat). Theoretically one would have these antibodies if they were vaccinated or exposed to strep pneumonia. I think it is a bit of a jump to say that titer test, tests for one's ability to fight all strep. There is also a possibility that many healthy kids fail these titers (maybe the vaccine has a high failure rate? I don't believe this has been looked at). These titers may be part of a puzzle, but certainly not the whole picture.

 

If you have more information to shed light on this, please post...

[peglem]

Concur..... but its fairly common in PANDAS children. For example, if you believe Pandas, is SC, is RF (I do) that particular bacteria is of the strep pneumonia and NOT GABHS.

 

I'm pretty sure SC & RF are caused by GABHS. Maybe I need to double check that?

[thereishope]

I just wanted to add that even though you are seeing the top neuro in your area, don't take everything they say as God's word. I supposedly saw the top ped neuro in the my area, and after time, things crumbled and I will never see him again. There are also top neuro who don't even believe PANDAS exists! Go in with a good timeline since it's been 2 years since your last visit, a list of questions, and find out the best way to get in contact with the neuro directly. Perhaps he/she has an email too.

 

ps. Make an appt to get family members swabbed for strep too. If rapids come back neg, get it cultured.

 

Also, for some good current info, you can always mention www.pandasnetwork.org to them. We need to get business cards printed for that website so we can just hand it out!

[sf_mom]

You know you might be right and now I'm not sure (I've done way to much reading) and I'll need to check this morning if it falls in A or B category. I do know the M1 and M18 strain is so resilient that it wipes out the immune system so same theory applies. They have nothing left to wage the war on the bacteria in their bodies. I also think that is why some are having great success with the 'Saving Sammy' dose of antibiotics.

 

-Wendy

 

Concur..... but its fairly common in PANDAS children. For example, if you believe Pandas, is SC, is RF (I do) that particular bacteria is of the strep pneumonia and NOT GABHS.

 

I'm pretty sure SC & RF are caused by GABHS. Maybe I need to double check that?

[dcmom]

peglem- you are right, SC and RF are caused by group a strep.

 

I know lots of parents feel they have found the answer, that their child has an immune deficiency, proved by missing pneumococcal antibodies, and this is their solution to pandas. I just think we need to be careful in stating this as fact, especially to new parents on the board. I haven't had dd's pneumococcal titers done (lab error), but plan to, but all other indicators for her are that she has a strong and normal immune system- so even if she fails these titers, I don't necessarily think it is a smoking gun. As with Dr Cunningham's test, these are all pieces to a puzzle, that of course no one has figured out yet. In my heart, I really believe the basic theory that it is a genetic succeptibilty, and some specific strains of strep, that triggers this thing. Where the immune deficiency fits in, I am not sure, maybe in the ability to get well, and stay that way?

 

I think Sue Swedo used IVIG to retrain the auto antibodies. I believe no one knows exactly why/how this works, but it does for some/many. I don't think she was using IVIG to fix an immune deficiency. If one's body continues to make autoantibodies, then monthly IVIG would be the answer- but that may have nothing to do with an immune deficiency. Why kids need lots of antibiotics for so long? Maybe the strep for them has gone intracellular, or is some type of super strep (think chronic lyme's) and it just takes forever to get rid of it?

 

Anyway, these are my thoughts. Please let me know if you think I am way off base...

[sf_mom]

I concur... One thing I would add is that Madeleine Cunningham suggested to me that susceptibility might be the overall state of the immune system at time of exposure. For example, a six month old might not be able to mount the antibodies for a resilient strain of strep but a 40 year old would due to their immune development. A child's immune system is not fully developed until 5. So, there could be a genetic susceptibility or it could be 'state' of immune system development at time of exposure.

 

Our son had never been sick much prior to exposure, he was 3.75 at exposure (so underdeveloped immune system at time), first time on antibiotics was six months post exposure when he had his first TIC, no family history of Tourette's/OCD or auto-immune illnesses, all sub-classes normal, deficiencies in STREP PNEUMOCOCCAL ANTIBODY TITER... failed 10 of 14.

 

-Wendy

 

 

peglem- you are right, SC and RF are caused by group a strep.

 

I know lots of parents feel they have found the answer, that their child has an immune deficiency, proved by missing pneumococcal antibodies, and this is their solution to pandas. I just think we need to be careful in stating this as fact, especially to new parents on the board. I haven't had dd's pneumococcal titers done (lab error), but plan to, but all other indicators for her are that she has a strong and normal immune system- so even if she fails these titers, I don't necessarily think it is a smoking gun. As with Dr Cunningham's test, these are all pieces to a puzzle, that of course no one has figured out yet. In my heart, I really believe the basic theory that it is a genetic succeptibilty, and some specific strains of strep, that triggers this thing. Where the immune deficiency fits in, I am not sure, maybe in the ability to get well, and stay that way?

 

I think Sue Swedo used IVIG to retrain the auto antibodies. I believe no one knows exactly why/how this works, but it does for some/many. I don't think she was using IVIG to fix an immune deficiency. If one's body continues to make autoantibodies, then monthly IVIG would be the answer- but that may have nothing to do with an immune deficiency. Why kids need lots of antibiotics for so long? Maybe the strep for them has gone intracellular, or is some type of super strep (think chronic lyme's) and it just takes forever to get rid of it?

 

Anyway, these are my thoughts. Please let me know if you think I am way off base...

[BethM33]

Uh oh...I'm confused... :-(

Ok, the blood tests went fine, I guess... It was so hard having to basically hold him down... I feel like I've been on a roller coaster today.

They did a strep test too and said it looked like it "COULD be a faint positive." so they gave him Cefzil?

I asked what the blood tests were for and he said "Strep, etc."

I said ' I thought it was to test for PANDAS and stuff" and he said 'Yeah, that's the same thing...we're talking about the same line of things..."

HUH??? I'm SO confused.

Anyway, they said results should be back on Wednesday??? They said the neuro should call me then, but if not, then to call them and so on..

I'm so tired of waiting and waiting and waiting and not knowing anything...

Why can't a neuro just see him and say "Ok, here's what's going on." ya know?

It's emotionally draining...

To the previous poster... Yeah, he saw a neuro, but no, she did not do any sort of tests on him...she just said that's what he had...no meds were given or anything like that...She's the top neuro in the state, so I trust her judgement, but after seeing what all of you have gone through and done, I feel like I'm in an uphill battle....

***sigh**

Thanks for your support guys...

***hugs****

[mama2alex]

Did they do a rapid strep test? If so, didn't they follow up with a culture?

 

My guess on what they meant by "strep etc" is they are testing ASO and Anti-DNase B, which are strep titers. This might tell you if your son has had a recent strep infection, but sometimes they come back within normal range even though there has been a recent infection. In other words, these tests are not reliable. If they think these tests rule out PANDAS, they are misinformed and you need to find another doctor.

 

I understand your neuro is considered top in the state, but if she didn't do any tests and didn't treat him for the diagnosis she gave, I have a hard time understanding why you trust her.

 

I'm seeing a lot of red flags here, and think you should definitely consider seeing another doctor.

 

Also, I would insist on being given complete copies of all test results so you can refer to them when you need to, and also to take to another doctor, if you decide to get a second opinion.

 

Uh oh...I'm confused... :-(

Ok, the blood tests went fine, I guess... It was so hard having to basically hold him down... I feel like I've been on a roller coaster today.

They did a strep test too and said it looked like it "COULD be a faint positive." so they gave him Cefzil?

I asked what the blood tests were for and he said "Strep, etc."

I said ' I thought it was to test for PANDAS and stuff" and he said 'Yeah, that's the same thing...we're talking about the same line of things..."

HUH??? I'm SO confused.

Anyway, they said results should be back on Wednesday??? They said the neuro should call me then, but if not, then to call them and so on..

I'm so tired of waiting and waiting and waiting and not knowing anything...

Why can't a neuro just see him and say "Ok, here's what's going on." ya know?

It's emotionally draining...

To the previous poster... Yeah, he saw a neuro, but no, she did not do any sort of tests on him...she just said that's what he had...no meds were given or anything like that...She's the top neuro in the state, so I trust her judgement, but after seeing what all of you have gone through and done, I feel like I'm in an uphill battle....

***sigh**

Thanks for your support guys...

***hugs****

[thereishope]

That's a great suggestion. get hard copies of test results sent to you. Honestly, if you ever have trouble w/ the neuro in the future, if you have all test results in your posession, you can cut all ties with her.

 

Faint positive? Was that from a rapid? I wonder if the ped didn't do a good swab on him when you went a few weeks ago. Are they considering it a +, or they won't give that diagnosis (of strep) until the cuture comes back?

 

I am not a "pro" on antibiotics. So I don't know if that's a good one.

 

So, are you going to actually see the neuro or just talk to them on the phone?

[Debbie1]

Beth,

 

We went to a top pediatric neurologist who misdiagnosed my kids for years. (And apparantly he does believe in PANDAS, just didn't believe my kids fit the profile and never asked if they had strep infections recently). We went to a second neurologist (at a major hospital, head of department), who believed it was PANDAS, but was not willing to treat aggressively enough. We are now on our third neurologist (Dr. L. - thank goodness for her!)

 

Don't let anyone tell you there is no treatment for PANDAS no matter how well respected they are.

 

Debbie

[EAMom]

peglem- you are right, SC and RF are caused by group a strep.

 

I know lots of parents feel they have found the answer, that their child has an immune deficiency, proved by missing pneumococcal antibodies, and this is their solution to pandas. I just think we need to be careful in stating this as fact, especially to new parents on the board. I haven't had dd's pneumococcal titers done (lab error), but plan to, but all other indicators for her are that she has a strong and normal immune system- so even if she fails these titers, I don't necessarily think it is a smoking gun. As with Dr Cunningham's test, these are all pieces to a puzzle, that of course no one has figured out yet. In my heart, I really believe the basic theory that it is a genetic succeptibilty, and some specific strains of strep, that triggers this thing. Where the immune deficiency fits in, I am not sure, maybe in the ability to get well, and stay that way?

 

I think Sue Swedo used IVIG to retrain the auto antibodies. I believe no one knows exactly why/how this works, but it does for some/many. I don't think she was using IVIG to fix an immune deficiency. If one's body continues to make autoantibodies, then monthly IVIG would be the answer- but that may have nothing to do with an immune deficiency. Why kids need lots of antibiotics for so long? Maybe the strep for them has gone intracellular, or is some type of super strep (think chronic lyme's) and it just takes forever to get rid of it?

 

Anyway, these are my thoughts. Please let me know if you think I am way off base...

 

Hi DCmom....I think you are on base.

 

Yes...I don't know what the failed pheumococcal titers really mean...is that normal for a 9-year-old kid who had 4-5 vax as a baby but none recently? (We're not willing to re-vax and re- test the titers.)

 

Like your dd, our PANDAS dd has been a pretty healthy kid (aside from PANDAS). I believe for us, one issue is that neither of my kids gets "typical" strep symptoms (no red sore throat, fevers were always presumed to be viral), so both of my dd's likely had many untreated strep infections (although my younger non-pandas dd had lots of antibiotics due to ear infections, etc).

 

As far as having an overall immune deficiency...perhaps some of the 20% of kids from the Swedo study who were not good responders to PEX/IVIG fell in to this category?? Or maybe these non-responders (like Worried Dad) just needed Saving Sammy doses of Augmentin (or Azith) (in addition to PEX/IVIG)???

 

Why do kids need lots of antibiotics for so long?

my theories

--prevent future strep infections

--prevent other bacterial infections (which also trigger pands episodes)

--get intracellular strep which is hiding out in sinuses, other areas

--IMO PANDAS kids don't have a "normal" immune system against strep. The typical 10 days worth of abs will still leave strep in their bodies, which their immune systems will react to.