Round 2 IVIG- Day 2 and confirmation of recent labs
So after a night of very little sleep, we headed to Children's with little brother in tow. Paige headed to soccer camp and the boys and I took on the hospital.
Day Two started OK- the nurse checked his IV and was able to get blood from it as well as flush it, but Hunter complained that it hurt. You take the chance of the IVIG going SubQ instead of IV if it is occluded, but we remembered that he complained the second day last round and it was fine (most likely just sensitive). So she started the drip and everything flowed just fine.
We did receive our labs back late yesterday afternoon. Hunter's IgA was 80 (reference range 44-
189). So even though it is on the lower end, it is not in the dangerous range for reaction to IVIG containing IgA. I felt so much better after hearing those results.
I also asked our pediatrician to run the strep titers since we hadn't had them run in awhile. Hunter had strep last February, so over a year ago. The reference range for Anti D Nase Strep is 0-77. When you have an active infection, the number goes above the reference range, and then should drop over time (within a few months).
Anti-DNase-B, or ADB, detects antigens produced by group A strep. This test is often done concurrently with the ASO titer, and subsequent testing is usually performed to detect differences in the acute and convalescent blood samples. When ASO and ADB are performed concurrently, 95% of previous strep infections are detected. If both are repeatedly negative, the likelihood is that the patient's symptoms are not caused by a post-streptococcal disease. To understand Hunter's system, here is a definition of antigens:
Antigen— A substance that can trigger a defensive response in the body, resulting in production of an antibody as part of the body's defense against infection and disease. Many antigens are foreign proteins not found naturally in the body, and include bacteria, viruses, and toxins (source: Encyclopedia.com).
So if he hasn't had an active strep infection in over a year, Hunter's levels should be way lower than 77. He has always run about 100-110.
His lab from Friday?
189.
And for the first time ever, his ASO titer registered at 114;
it has always been 0.
I don't know how else to demonstrate the fact that PANDAS exists. His little body is over-reactive and continues to create antibodies from an illness that occurred last February.
And that is why I whole-heartedly believe in the Autoimmune Disorder Diagnosis (...Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body- (Wikipedia.com)).
You can call it PANDAS, you can call it an Autoimmune Disorder, you can even call it Autism...
but the root of it all lies in the over-reactive immune response.
Sitting here, I came to the revelation that I am not worried about the efficacy of the treatment. Immunosuppression is the chosen and proven treatment.
I KNOW it would work...
now I just wonder if it is too late.
 |
| What's better than movies all morning? My kids think the hospital is amazing. |
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| Soccer camp! Three hours of pure fun- haha, she is going to be wiped out this week. |
We did receive our labs back late yesterday afternoon. Hunter's IgA was 80 (reference range 44-
189). So even though it is on the lower end, it is not in the dangerous range for reaction to IVIG containing IgA. I felt so much better after hearing those results.
I also asked our pediatrician to run the strep titers since we hadn't had them run in awhile. Hunter had strep last February, so over a year ago. The reference range for Anti D Nase Strep is 0-77. When you have an active infection, the number goes above the reference range, and then should drop over time (within a few months).
Anti-DNase-B, or ADB, detects antigens produced by group A strep. This test is often done concurrently with the ASO titer, and subsequent testing is usually performed to detect differences in the acute and convalescent blood samples. When ASO and ADB are performed concurrently, 95% of previous strep infections are detected. If both are repeatedly negative, the likelihood is that the patient's symptoms are not caused by a post-streptococcal disease. To understand Hunter's system, here is a definition of antigens:
Antigen— A substance that can trigger a defensive response in the body, resulting in production of an antibody as part of the body's defense against infection and disease. Many antigens are foreign proteins not found naturally in the body, and include bacteria, viruses, and toxins (source: Encyclopedia.com).
So if he hasn't had an active strep infection in over a year, Hunter's levels should be way lower than 77. He has always run about 100-110.
His lab from Friday?
189.
And for the first time ever, his ASO titer registered at 114;
it has always been 0.
I don't know how else to demonstrate the fact that PANDAS exists. His little body is over-reactive and continues to create antibodies from an illness that occurred last February.
And that is why I whole-heartedly believe in the Autoimmune Disorder Diagnosis (...Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body- (Wikipedia.com)).
You can call it PANDAS, you can call it an Autoimmune Disorder, you can even call it Autism...
but the root of it all lies in the over-reactive immune response.
Sitting here, I came to the revelation that I am not worried about the efficacy of the treatment. Immunosuppression is the chosen and proven treatment.
I KNOW it would work...
now I just wonder if it is too late.
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