Interesting lab results

[bronxmom2]

When I saw Dr. Bouboulis about 3 weeks ago-- a month post-PEX-- he ordered a whole bunch of bloodwork for my son-- the immunoglobulins and pneumococcal which Latimer had ordered earlier, as well as many others which had never been done on him before-- cardiovascular/lipids, Hematology, lyme, and many others.

 

Anyway, on this new round of bloodwork, he shows a IgG deficiency-- low on IgG 1, IgG 4, and the IgG total. Low enough that Dr. B. is confident that insurance will cover monthly IVIG-- which we are hoping to get started immediately.

 

In addition, his T HELPER cells are LOW and his T SUPPRESSOR cells are HIGH.

 

That is very interesting to me.

 

He also failed 10/14 pneumoccocal, same thing as before. But all the numbers are lower than they were in the original bloodwork, done in September before the PEX. The pneumoccocal serotypes are lower, and the IgGs are lower-- they've gone from low normal to deficient.

 

This is great, for insurance purposes, because we now have the documented deficiency. But it does make me wonder if PEX does render them a little more vulnerable.

 

The other thing is that his ASO number is now.... 145. It was 600 before PEX.

 

I know we debate the relevance of this number, but for my kid I think does correlate to PANDAS symptoms.

 

He is still symptom-free, and I am enjoying his company like crazy... though it's hard not to scrutinize his every move. I personally am convinced that it WILL come back without follow-up IVIG.

 

By the way he has really chapped lips and canker sores.

 

My thoughts are with all of you!

[Debbie1]

That's great news! So Dr. B. is willing to do IVIG even though he is symptom free?

[bronxmom2]

Not only that...He's insisting on it!

What an amazing doctor.

[coco]

Yes, Dr B. is amazing. Just got off the phone with him a few minutes ago and he reviewed where we are with my dd (just did ivig #3 yesterday) and we will probably up the gamma dosage for our next sessions. FYI, there's a publication here in CT called CONNECTICUT MAGAZINE and they had the annual TOP DOCS issue, and Dr. B made the list, again...he had it in 2001 as well. So glad to hear of your experience with him.

[melanie]

Yes, Dr B. is amazing. Just got off the phone with him a few minutes ago and he reviewed where we are with my dd (just did ivig #3 yesterday) and we will probably up the gamma dosage for our next sessions. FYI, there's a publication here in CT called CONNECTICUT MAGAZINE and they had the annual TOP DOCS issue, and Dr. B made the list, again...he had it in 2001 as well. So glad to hear of your experience with him.

 

 

is he an immunologist?

[bronxmom2]

Yes, Dr B. is amazing. Just got off the phone with him a few minutes ago and he reviewed where we are with my dd (just did ivig #3 yesterday) and we will probably up the gamma dosage for our next sessions. FYI, there's a publication here in CT called CONNECTICUT MAGAZINE and they had the annual TOP DOCS issue, and Dr. B made the list, again...he had it in 2001 as well. So glad to hear of your experience with him.

 

 

is he an immunologist?

 

 

Yes, and you should go to him! He WILL find your son's immune deficiency, and give him the IVIG for the Immune Deficiency and not PANDAS.

[nevergiveup]

Bronxmom2,

 

Way to go!! You fight hard for your kid. I am thrilled for you. Do you know what in network insurance he takes?? UHC? Can he treat kids in Ohio if we make the trip to see him?

 

Coco,

 

What dosage now??? Was it based off of symptoms or blood markers!

 

I need to go to Connecticut! Thanks so much for posting!

[peglem]

Bronxmom2,

 

Way to go!! You fight hard for your kid. I am thrilled for you. Do you know what in network insurance he takes?? UHC? Can he treat kids in Ohio if we make the trip to see him?

 

Coco,

 

What dosage now??? Was it based off of symptoms or blood markers!

 

I need to go to Connecticut! Thanks so much for posting!

I was told by UHC that I can see any in network provider in the country and be covered. You can go to myuhc and find out what doctors are in network.

[coco]

Bronxmom2,

 

Way to go!! You fight hard for your kid. I am thrilled for you. Do you know what in network insurance he takes?? UHC? Can he treat kids in Ohio if we make the trip to see him?

 

Coco,

 

What dosage now??? Was it based off of symptoms or blood markers!

 

I need to go to Connecticut! Thanks so much for posting!

 

Nevergiveup,

 

The increased dosage is based on the fact that my dd is handling the 1.00 gram per kilo monthly w/o side effects, and also in the hopes that it will help decrease symptoms. We did not speak about what the specific increase will be yet. Her next treatment is early January and he said we will decide based on the next 30 days to see how her symptoms are. He also switched her (a week ago) from zithro to high-dose augmentin and she seems to be doing better on that, but it has only been a week. He was reassuring tonite saying, "It takes time" over and over again, and reminded me to look for improvements month to month, vs, day to day or week to week. Hard to do, granted, but worth trying! It might help my own sanity!

[nevergiveup]

Thanks Peglem!! Your one of my hero's. You also fight so hard for your daughter! My thoughts and prayers will be with you when you see Dr. L. I recommend staying at the Mariott Convention Center in Bethesda. Call you can usually get a discount rate. My dd loved this hotel. Right next door to Dr. L's office.

[peglem]

Thanks Peglem!! Your one of my hero's. You also fight so hard for your daughter! My thoughts and prayers will be with you when you see Dr. L. I recommend staying at the Mariott Convention Center in Bethesda. Call you can usually get a discount rate. My dd loved this hotel. Right next door to Dr. L's office.

Oh, I'm so glad you told me that! I've been focusing so much on how to get her there, but had given some fleeting thought to where we would stay and how would I know what hotels are close to the office. Its been so long since I've driven in winter weather (we panic in rain down here!) that I really wanted to minimize driving, especially in an unknown area.

 

And thanks for the compliment, but I would not be able to fight without everybody here. I swear, doctors think I'm so smart and knowledgable- but almost everything I know came from here! I pass all the research on to her pediatrician- who is eating it up like the best treat he ever had! His help and support has been amazing as well (he's our angel doctor!)

[dut]

Hello.

 

Do you know if Dr B will do telephone consults if the ped. we have here is willing to do bloodwork ordering etc?

[sf_mom]

Way to go on the ASO Titers and follow-up IVIG post PEX. As for the Strep Pneumoccocals my son also had deficiencies in 10/14 but is responsive in almost all serotypes post IVIG - 4 are between 1 and 2, 1 is below 1, the rest are protective. We are tracking them post IVIG to see what happens and potentially determine if another IVIG is needed.

 

I believe you saw an immediate response in the ASO because this thing 'STREP' is intercellular. IVIG will clean up any remaining strep missed in the blood or deposits in the BG and keep him healthy.

 

My son has always had really chapped lips post illness two years ago. I told Dr. K when those chapped lips are resolved I'll know he is better!!!!

 

-Wendy

 

When I saw Dr. Bouboulis about 3 weeks ago-- a month post-PEX-- he ordered a whole bunch of bloodwork for my son-- the immunoglobulins and pneumococcal which Latimer had ordered earlier, as well as many others which had never been done on him before-- cardiovascular/lipids, Hematology, lyme, and many others.

 

Anyway, on this new round of bloodwork, he shows a IgG deficiency-- low on IgG 1, IgG 4, and the IgG total. Low enough that Dr. B. is confident that insurance will cover monthly IVIG-- which we are hoping to get started immediately.

 

In addition, his T HELPER cells are LOW and his T SUPPRESSOR cells are HIGH.

 

That is very interesting to me.

 

He also failed 10/14 pneumoccocal, same thing as before. But all the numbers are lower than they were in the original bloodwork, done in September before the PEX. The pneumoccocal serotypes are lower, and the IgGs are lower-- they've gone from low normal to deficient.

 

This is great, for insurance purposes, because we now have the documented deficiency. But it does make me wonder if PEX does render them a little more vulnerable.

 

The other thing is that his ASO number is now.... 145. It was 600 before PEX.

 

I know we debate the relevance of this number, but for my kid I think does correlate to PANDAS symptoms.

 

He is still symptom-free, and I am enjoying his company like crazy... though it's hard not to scrutinize his every move. I personally am convinced that it WILL come back without follow-up IVIG.

 

By the way he has really chapped lips and canker sores.

 

My thoughts are with all of you!

[coco]

Hello.

 

Do you know if Dr B will do telephone consults if the ped. we have here is willing to do bloodwork ordering etc?

 

dut,

 

Yes, I am sure Dr. B would consult. Call his office...he has two, one in Stamford on Mondays and Wednesdays. Darien on Tuesdays and Thursdays. Stella is the name of his receptionist and she is very helpful and sensitive to your time urgency.

 

coco

[dut]

coco... thanks for that info :-)