Need help understanding IgG blood test results...

[momtocole1]

We talk to Dr. K. tomorrow but I wanted to ask the group about the blood test results we got back today to compare to their child's results. We are hoping that he gets categorized with an immune deficiency (aren't we all...) so that IVIG may have a better chance of being covered by insurance.

 

Results:

 

My son's result Reference Range

 

IgG subclass 1 425 423-1060

 

IgG subclass 2 349 76-355

 

IgG subclass 3 41 17-173

 

IgG subclass 4 39 2-115

 

IgG total 860 821-1835

 

As you can see lowest numbers are IgG subclasses 1, a little low on 3 and IgG total is really low.

the test states that there are new reference ranges effective 9/22/09, that is listed on the report.

 

What is concerning is that because these numbers still show in the Normal range will they see a problem?

 

Has anyone had numbers similar and it did help them get insurance coverage for IVIG.

 

He also failed 6 of the 7 strep pneumanie strains he was vaccinated against. He is 12 (next week), so when he was a baby they only vaccinated for 7 strains vs. 14 now. The immunologist at UC Irvine did not seem overly concerned that he failed so many of those strep strains...

 

His Antideoxyribonuclease-B antibodies were <50 with a normal range being <187

I have not a clue what that one even is...

He has a vitiamin D deficiency, probably because he is too afraid to go outside usually...

 

Antistreptolysin O was 87.2 which is ASO titers right?

 

Oh, I read Busters posts over and over and I just can't get my head around this stuff. We all need a research scientists in our house!

 

Thank you,

Judy...

[momtocole1]

Reposting, the results were spaced out when I entered them but they were squashed together when it posted.

 

One more time:

 

My son's result Reference Range

 

IgG subclass 1**** My son's Result was 425 Normal range is: 423-1060

 

IgG subclass 2*****My son's Result was 349 Normal range is: 76-355

 

IgG subclass 3*****My son's Result was 41 Normal range is: 17-173

 

IgG subclass 4*****My son's Result was 39 Normal range is: 2-115

 

IgG total *********My son's Result was 860 Normal range is: 821-1835

[peglem]

The IgG subclasses are all w/in normal ranges- I doubt you'll get any help there as far as immune deficiency goes.

 

Antideoxyribonuclease-B antibodies is, I think, anti-Dnase.

 

I do not know much about the strep pneumonia titers...when we saw the immunologist @ 2 yrs ago, he vaxed her twice to get those to rise. That seemed to satisfy him that everything was working okay. We've seen him again just recently and he's retested those titers again, 5 of them are low again....he wants to vax and look for a response AGAIN! He's going to have to convince me of the value of that this time.

 

I'm no expert, but I don't see any aha!s here.

 

You should supplement vitamin D!

[Buster]

Hi Momtocole1:

 

[font="Courier New"] 
                   My son's result        Reference Range

IgG subclass 1     425                      423-1060

IgG subclass 2     349                      76-355

IgG subclass 3     41                        17-173

IgG subclass 4     39                        2-115

IgG total          860                       821-1835[/font]

 

As you can see lowest numbers are IgG subclasses 1, a little low on 3 and IgG total is really low.

the test states that there are new reference ranges effective 9/22/09, that is listed on the report.

We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense.

 

He also failed 6 of the 7 strep pneumanie strains he was vaccinated against. He is 12 (next week), so when he was a baby they only vaccinated for 7 strains vs. 14 now. The immunologist at UC Irvine did not seem overly concerned that he failed so many of those strep strains...

Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on.

 

His Antideoxyribonuclease-B antibodies were <50 with a normal range being <187

I have not a clue what that one even is...

 

That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful.

 

Antistreptolysin O was 87.2 which is ASO titers right?

Yup

 

Just checking, on things -- it looks like the only cultured strep was all the way back in February.

• About 3 years ago, your ds was diagnosed with PANDAS when he was 8.
  
• In February he got a strep infection and had sores in the corner of his mouth
  
• You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse
  
• You tried motrin (advil) and this seemed to help but couldn't be sure
  
• You then tried 14 days of azith and then switched (?) to 600mg Augmentin
  
• By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing
  
• By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping.
  
• You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant.
  
• You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg Augmentin
  
• Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentin
  
• Then yesterday, things sound like they got better where he's able to wear certain shirts again
  

However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated.

 

Is this about right?

 

Buster

[momtocole1]

Dear Buster,

 

Wow, you are pretty good at summarizing things. I am going to add in a few things in bold...

 

 

Hi Momtocole1:

 

[font="Courier New"] 
                   My son's result        Reference Range

IgG subclass 1     425                      423-1060

IgG subclass 2     349                      76-355

IgG subclass 3     41                        17-173

IgG subclass 4     39                        2-115

IgG total          860                       821-1835[/font]

 

As you can see lowest numbers are IgG subclasses 1, a little low on 3 and IgG total is really low.

the test states that there are new reference ranges effective 9/22/09, that is listed on the report.

We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense.

 

He also failed 6 of the 7 strep pneumanie strains he was vaccinated against. He is 12 (next week), so when he was a baby they only vaccinated for 7 strains vs. 14 now. The immunologist at UC Irvine did not seem overly concerned that he failed so many of those strep strains...

Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on.

 

His Antideoxyribonuclease-B antibodies were <50 with a normal range being <187

I have not a clue what that one even is...

 

That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful.

 

Antistreptolysin O was 87.2 which is ASO titers right?

Yup

 

Just checking, on things -- it looks like the only cultured strep was all the way back in February.

• First Cultured positive strep was 4/03, he then had 3 other documented positive strep throat cultures and 11 documented pharyngitis episodes, at least 75% were precipitated with the impetigo sores on outer corner(s) of mouth.
   
  
• About 3 years ago, your ds was diagnosed with PANDAS when he was 8. - 1/31/06 - went to ped. for strep culture. Doc notes state "Mother states when son was put on Azithro recently all tics stopped, ?pandas?"
  
• In February he got a strep infection and had sores in the corner of his mouth
  
• You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse
  
• You tried motrin (advil) and this seemed to help but couldn't be sure
  
• You then tried 14 days of azith and then switched (?) to 600mg Augmentin He was actually on azith from April until July of 09.
  
• By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing
  
• By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping.
  
• You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant.
  
• You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg AugmentinBlood draw was pre-1000mg of Augmentin.
  
• Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentinSome things have gone well and others have not. OCD is still there but it was less intense. Very few rages, then things went downhill after recent dental work
  
• Then yesterday, things sound like they got better where he's able to wear certain shirts again
  

However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated.Symptoms have gone up 10 notches. Complais of sore throat, rapid strep was negative, may be experiencing a viral infection that is causing symptom flare up.

 

Is this about right? Yes, thank you for doing that.

 

I am still so confused on all the IgG stuff, but I'm sure immuno will explain it more. I can't believe I was actually hoping for an immune deficiency.

 

Thanks again,

 

Judy...

 

Buster

[P_Mom]

your son's immuno. work-up is beautiful!

[momtocole1]

Hi Momtocole1:

 

[font="Courier New"] 
                   My son's result        Reference Range

IgG subclass 1     425                      423-1060

IgG subclass 2     349                      76-355

IgG subclass 3     41                        17-173

IgG subclass 4     39                        2-115

IgG total          860                       821-1835[/font]

 

As you can see lowest numbers are IgG subclasses 1, a little low on 3 and IgG total is really low.

the test states that there are new reference ranges effective 9/22/09, that is listed on the report.

We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense.

 

He also failed 6 of the 7 strep pneumanie strains he was vaccinated against. He is 12 (next week), so when he was a baby they only vaccinated for 7 strains vs. 14 now. The immunologist at UC Irvine did not seem overly concerned that he failed so many of those strep strains...

Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on.

 

His Antideoxyribonuclease-B antibodies were <50 with a normal range being <187

I have not a clue what that one even is...

 

That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful.

 

Antistreptolysin O was 87.2 which is ASO titers right?

Yup

 

Just checking, on things -- it looks like the only cultured strep was all the way back in February.

• About 3 years ago, your ds was diagnosed with PANDAS when he was 8.
  
• In February he got a strep infection and had sores in the corner of his mouth
  
• You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse
  
• You tried motrin (advil) and this seemed to help but couldn't be sure
  
• You then tried 14 days of azith and then switched (?) to 600mg Augmentin
  
• By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing
  
• By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping.
  
• You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant.
  
• You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg Augmentin
  
• Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentin
  
• Then yesterday, things sound like they got better where he's able to wear certain shirts again
  

However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated.

 

Is this about right?

 

Buster

[EAMom]

I don't think the bolding worked

[peglem]

He has a vitiamin D deficiency, probably because he is too afraid to go outside usually...

 

I think this part of your post has been buried by the IgG stuff. I haven't done a lot of research on vitamin D levels because my daughter's are normal. But on various boards I've been on, vitamin D is a big issues and I think resolving this deficiency and treating it aggressively might give your child some noticeable improvements.

[Charlotte Mom]

Buster, what do you conclude? do you think momtocole1 ds has an immune deficiency that would be recognized by insurance? do you think the IVIG would help him?

[P_Mom]

Dr. Latimer also spoke about vitamin D deficiency..and that she believes it can contribute/aggravate autoimmune conditions. She wanted to have our sons checked, but, when I went for the blood draw to get all the immune things and the Cunningham test, I forgot the script.

 

Anyway, besides getting it in a multi, my kids take Cod Liver oil by Carlsons in the Winter (per Dr. K...contains vit. D), and regular fish oil in the summer(no vit D)....they are outside all the time in the summer and get plenty of Vit .D that time of year. So, for those that live the North and experience little sunshine.....supplementing with Vit. D (cod liver oil) is recommended....and, you get the added benefit of the Omega's.

[KeithandElizabeth]

Both of my children have low vitamin D and one of our doctors thought it was a result of PANDAS and not the cause. Who knows?? We live in one of the sunniest states and because my son always had such sensory issues with sunscreen, he has been in the sun often without sunscreen and he is still low on vitamin D. The doctor thought that the immune system and digestive tract was so compromised from fighting this illness that it was not processing other nutrients as well, etc......

 

Just food for thought......You just don't really know what repreceded what......

 

elizabeth

[Buster]

Buster, what do you conclude? do you think momtocole1 ds has an immune deficiency that would be recognized by insurance? do you think the IVIG would help him?

Hi Charlotte,

 

My personal opinion is that momtocole1 child could be considered to have low Igg subclass 1 and the finding with other symptoms might be consistent with CVID.

 

There is a nice chart of Igg1 plotted against age groups in normal children (see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554695/?page=2 ) While this is a small sample it indicates that Igg1 should be > 500mg/dl for a 7-12 year old. I'm not quite sure of what age group was used for "normal" in mom2cole1's child. This would be a good question for the lab and easy to check. The expected value for a 5 year old is quite different than for a 12 year old.

 

Can't say from the insurance side, but I think there's a good argument there. Definitely worth nudging the doctor to see if the clincal symptoms are consistent with a CVID diagnosis -- along with the measured Igg1 low band.

 

Regards,

 

Buster

[momtocole1]

Dear Charlotte and Buster,

 

Thank you for highlighting this Vitamin D issue and taking a closer look at the IgG numbers. I will contact the lab today to find out what age range they were using for normal. I will also post to see what others lab results have said about what is "normal". One thing I did notice specifically on my son's lab result sheet was that it notated that the normal range was just updated a few weeks ago. Don't know what that is all about. Do they look at "the communities" results during a specific period of time and adjust what is considered normal. Boy do I wish that was uniform everywhere.

 

The immuno was also arguing with me about the weak responder result on 1 of my son's strep Pnuemo serotypes. He was a "non responder" on 5 of the serotypes and a "weak responder" on 1, and one was just fine. He said we would have to re-vaccinate to get a "true" number.

 

What really bothers me is that this doc was not willing to recognize a problem here. Why do we even have lab "ranges" if a doctor is not willing to say there is a problem if the lab sheet shows one. So the doc was saying, normal is normal is normal, but the strep pneumo was not showing normal, it was showing "non-responder"on 5 of the 7 and weak on one. I am just so confused. There is NO WAY I would want to re-vaccinate.

 

In talking to Diana Pohlman there really seems to be a theme where many of these PANDAS kids show up in the "low normal" range for some or all of the IgG sublasses along with failure on the strep pneumo vacs. Both of which the Immuno we saw at UC Irvine, CA was COMPLETELY unimpressed with.

 

I know I say this so much, I sound like a broken record, but if we lived back east I think his IVIG would get covered, but he is too severe right now to get on an airplane. We looked into a train trip. 44 hours from Southern Cal to Chicago. I don't think my son could do it. He has a huge fear of any windows or mirrors or pictures that reflect.

 

I believe we will be able to get this IVIG scheduled in the next few weeks at Children's Hospital Los Angeles.

 

Thanks again to both of you and others who have commented. I love this forum.

 

Judy...

 

 

 

Buster, what do you conclude? do you think momtocole1 ds has an immune deficiency that would be recognized by insurance? do you think the IVIG would help him?

Hi Charlotte,

 

My personal opinion is that momtocole1 child could be considered to have low Igg subclass 1 and the finding with other symptoms might be consistent with CVID.

 

There is a nice chart of Igg1 plotted against age groups in normal children (see http://www.ncbi.nlm.nih.gov/pmc/articles/PMG1554695/?page=2 ) While this is a small sample it indicates that Igg1 should be > 500mg/dl for a 7-12 year old. I'm not quite sure of what age group was used for "normal" in mom2cole1's child. This would be a good question for the lab and easy to check. The expected value for a 5 year old is quite different than for a 12 year old.

 

Can't say from the insurance side, but I think there's a good argument there. Definitely worth nudging the doctor to see if the clincal symptoms are consistent with a CVID diagnosis -- along with the measured Igg1 low band.

 

Regards,

 

Buster

[KeithandElizabeth]

Judy:

 

If you still have a problem getting the IVIG in California and getting insurance to cover it, I used a wonderful Pediatric Oncologist/Hematologist here in Denver who would be more than willing to help you and get the procedure covered by insurance. Denver may be closer than the east coast or even Chicago. THis doctor would probably follow Dr. K's protocol, but is very open to your desires and is very knowledgeable about IVIG since he does it often for his cancer patients.

 

His name is Dr. Tom Smith in Denver.

 

Elizabeth