Interesting lab results

[nevergiveup]

Coco, Month to month makes sense. Its the only way to survive. Mom's are so much with their dd's that we notice each slight set back. My husband helps keep me grounded by reminding me how far she has come over the last 7 months since her relapse on May 5th. I even know the day, it was that sudden and that severe. So I know our kids are diagnosed with CVID, and I need to consult Dr. B about dosage and timeframe. My kid is getting regular CVID treatment, maybe a slightly higher dose than our immun doc would give just becuz she knows my childs history. Does Dr. B think that becuz your dd doesn't create an immun response (flu like symptoms) from each infusion that she needs more??? Or is it because she can handle more he wants to give more?

[momofgirls]

Hi guys we see Dr B as well. He is a very good doctor and very much wants to help our kids. Definately worth a phone consult! Can someone explain the T cell testing that was done by dr b? He didn't do this particular test for my daughter but I would like to understand dr b's thoughts on this test.

[LNN]

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.

 

I'm just curious - shouldn't you expect numbers to be much lower following pheresis? Isn't that the point of doing it? Does this really show a true underlying deficiency or just that the pheresis did its job?

 

I understand the fear of things coming back. I really do. But if you did pheresis to get rid of things and it did, why are you pursing monthly IVIG so soon afterward?

 

I'm not trying to criticize. I'm just trying to understand your thoughts and those of Dr B.

[coco]

Coco, Month to month makes sense. Its the only way to survive. Mom's are so much with their dd's that we notice each slight set back. My husband helps keep me grounded by reminding me how far she has come over the last 7 months since her relapse on May 5th. I even know the day, it was that sudden and that severe. So I know our kids are diagnosed with CVID, and I need to consult Dr. B about dosage and timeframe. My kid is getting regular CVID treatment, maybe a slightly higher dose than our immun doc would give just becuz she knows my childs history. Does Dr. B think that becuz your dd doesn't create an immun response (flu like symptoms) from each infusion that she needs more??? Or is it because she can handle more he wants to give more?

Nevergiveup,

 

My dd in addition to pandas was diagnosed with Selective Antibody Immune Deficiency, which he feels strongly should be corrected with monthly ivig. She does not create an immune response, so that should hopefully fix the problem. Additionally, I believe he feels that as long as the child is tolerating (no adverse side effects) from the dosage, he is willing to increase it based on behavioral symptom improvement as each 30 days pass, or lack of improvement. We will run some new blood work on her after the next session to see how she looks then. When the dark circles under her eyes disappear I will do the JIG!

 

Someone who posted after this note (sorry, can't remember name right now ) has a question about why Dr. B proposed ivig so quickly after PEX. I asked him the IVIG vs PEX scenario questions and he explained that even if you do PEX, which completely cleans the blood of all bad antibodies, you need to add in good antibodies with monthly ivig. Hope that helps.

 

coco

[nevergiveup]

Coco,

 

 

Yes. Dark circles gone! I know its probably not a diagnostic measurement for docs but I can tell you it is a key indicator for moms!!!!

 

BronxMom2

 

This is the second time I have heard about tcells and these kids. Once from Shannon in ref to Dr Sleasman at _USF with Murphy. Do you have any info on this? Is IVIG considered treatment for low t cells? I have been told that a t cell deficiency is uncurable. Is this what Bouboulis is measuring or is he measuring the way the t cells behave? And is there a name for this immune issue? Thanks

 

Coco, Month to month makes sense. Its the only way to survive. Mom's are so much with their dd's that we notice each slight set back. My husband helps keep me grounded by reminding me how far she has come over the last 7 months since her relapse on May 5th. I even know the day, it was that sudden and that severe. So I know our kids are diagnosed with CVID, and I need to consult Dr. B about dosage and timeframe. My kid is getting regular CVID treatment, maybe a slightly higher dose than our immun doc would give just becuz she knows my childs history. Does Dr. B think that becuz your dd doesn't create an immun response (flu like symptoms) from each infusion that she needs more??? Or is it because she can handle more he wants to give more?

Nevergiveup,

 

My dd in addition to pandas was diagnosed with Selective Antibody Immune Deficiency, which he feels strongly should be corrected with monthly ivig. She does not create an immune response, so that should hopefully fix the problem. Additionally, I believe he feels that as long as the child is tolerating (no adverse side effects) from the dosage, he is willing to increase it based on behavioral symptom improvement as each 30 days pass, or lack of improvement. We will run some new blood work on her after the next session to see how she looks then. When the dark circles under her eyes disappear I will do the JIG!

 

Someone who posted after this note (sorry, can't remember name right now ) has a question about why Dr. B proposed ivig so quickly after PEX. I asked him the IVIG vs PEX scenario questions and he explained that even if you do PEX, which completely cleans the blood of all bad antibodies, you need to add in good antibodies with monthly ivig. Hope that helps.

 

coco

[sf_mom]

There is a couple of reasons: PEX does not completely rid the body of all the 'bad blood', there is a potential of deposits in the brain that IVIG will resolve, IVIG modulates the bone marrow and PEX does not.

 

In our case its RF in my son's friend, undiagnosed KD in our older son, KD in our younger son. There is a study out of Japan that claims they located the exotoxin of the S. Pyogenes in 100% of the patients during the acute phase. That is a strain of strep that inclusive of the M1, M3 and M18 (same as the strain they located in RF). With that particular strain it creates a toxin that makes the individual very sick because the individual doesn't have enough anti-toxin to get well, IVIG also acts as an anti-toxin (per study). In these particular patients the exotoxin was found in the BLOOD agars......... why PEX is so immediately successful. So, unless ALL the blood is exchanged or the patient is able to fight off what little is left in blood the potential of relapse is high. Hence IVIG.

 

I hope that helps....... tried to make it understandable.

 

-Wendy

[LNN]

there is a potential of deposits in the brain that IVIG will resolve, IVIG modulates the bone marrow and PEX does not.

 

That is a strain of strep that inclusive of the M1, M3 and M18 (same as the strain they located in RF). With that particular strain it creates a toxin that makes the individual very sick because the individual doesn't have enough anti-toxin to get well, IVIG also acts as an anti-toxin (per study). In these particular patients the exotoxin was found in the BLOOD agars......... why PEX is so immediately successful. So, unless ALL the blood is exchanged or the patient is able to fight off what little is left in blood the potential of relapse is high. Hence IVIG.

 

-Wendy

 

Thanks. Do you have citations for each of the above? I've never heard anything of "deposits in the brain" or about IVIG modulating bone marrow. Would like to read the studies.

[sf_mom]

Dr. K was the one who told me about the deposits in the BG as well as modulating bone marrow. I believe Dr. B has told similar to his patients and others can confirm. As for the IVIG acting as an anti-toxin its in the study: http://www.springerlink.com/content/l34qj830548q4q46/ and unfortunately you might not have access to entire article. I had it printed off by one of our Dr's but I will quote directly.

 

'the well known efficacy of intravenous human y-globuline which may contain some levels of anti-toxin'

 

IVIG is the known treatment for KD.... It is my understanding almost or every antibiotic has been tired intravenous with no success for KD. IVIG in conjunction with steroids has also been an effective treatment for KD. I am not sure if long term antibiotic or antibiotics in conjunction with IVIG has been effective for KD. Dr. K has tired IV antibiotics with no success in PANDAs unless its within hours of on-set.

 

-Wendy

 

 

 

 

there is a potential of deposits in the brain that IVIG will resolve, IVIG modulates the bone marrow and PEX does not.

 

That is a strain of strep that inclusive of the M1, M3 and M18 (same as the strain they located in RF). With that particular strain it creates a toxin that makes the individual very sick because the individual doesn't have enough anti-toxin to get well, IVIG also acts as an anti-toxin (per study). In these particular patients the exotoxin was found in the BLOOD agars......... why PEX is so immediately successful. So, unless ALL the blood is exchanged or the patient is able to fight off what little is left in blood the potential of relapse is high. Hence IVIG.

 

-Wendy

 

Thanks. Do you have citations for each of the above? I've never heard anything of "deposits in the brain" or about IVIG modulating bone marrow. Would like to read the studies.