Deficient in Vitamin D, Growth Hormone, Testosterone

[peglem]

momto2pandas

 

post Today, 10:30 AM

Post #11

 

Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

 

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms?

 

 

I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that?

 

She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else...

[earnestfamily7]

Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

 

 

Faith,

 

This is an integrative MD who is not an immunologist but knows a lot more about immunology than most MD's. His wife apparently is also an MD with quite a bit of immunology knowledge. He did quite a work-up, almost felt like an AIDS panel (to me, in terms of lots of things I've heard of), cytomeglavirus, epstein barr, mycoplasm, herpes, pylori, and so on. Given my health situation, he and I were both surprised how they were all negative.

 

Michael

 

 

mati'smom,

would this be evident to the doctor, re the immune system not competent? or something that would have to be deduced, looked into further? if that were the case, wouldn't one have symptoms of these things, something to show for it? could there be those infections present, but not necessarily have symptoms, however vague?

 

Faith

 

If I understand correctly what some of the autism researchers and parents believe correctly, viruses like cytomegalovirus, epstein barr and the entire cascade of HHV's can, like the heavy metals those kids have problems with, hide in tissue. During that period the patient will sometimes test negative but if successful attempts are made to release those toxins from their binding sites, the patient will test positive and this is considered a good thing. It also brings us back to the biofilm theory which I'd be willing to bet my next paycheck will become a key in treating not only autism spectrum disorders and other autoimmune diseases but PANDAS as well. I've said for four years that PANDAS is like an episodic placement on the autism spectrum.

 

Gat's mom.

intereting.... after we found out that our son had PANDAS a few years ago he was seeing a psychologist, a speech therapist and an OT specialist at a center that specializes in helping kid with special needs and the treated a lot of children w/ autisim.... in my son's initial workups/tests there the psychologist said that some of Jordan's tests might place him on the spectrum but he was not autistic....

[momto2pandas]

momto2pandas

 

post Today, 10:30 AM

Post #11

 

Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

 

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms?

 

 

I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that?

 

She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else...

 

 

I am not really an immunologist, but it sure sounds like an immunodeficiency to me. My understanding is that some immunodeficiency patients can be managed with just antibiotics as far as having symptomatic illnesses is concerned - so maybe she's like that. I also believe that many of the commonly given tests for infections/infection history are essentially IgG tests, so if she isn't creating IgG appropriately in the first place, or is clearing it, then she might not have positive tests for pathogens that she actually has been infected with. Here is an example: http://www.labtestsonline.org/understandin...s/cmv/test.html

 

Have you checked out primaryimmune.org?

[peglem]

momto2pandas

 

post Today, 10:30 AM

Post #11

 

Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

 

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms?

 

 

I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that?

 

She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else...

 

 

I am not really an immunologist, but it sure sounds like an immunodeficiency to me. My understanding is that some immunodeficiency patients can be managed with just antibiotics as far as having symptomatic illnesses is concerned - so maybe she's like that. I also believe that many of the commonly given tests for infections/infection history are essentially IgG tests, so if she isn't creating IgG appropriately in the first place, or is clearing it, then she might not have positive tests for pathogens that she actually has been infected with. Here is an example: http://www.labtestsonline.org/understandin...s/cmv/test.html

 

Have you checked out primaryimmune.org?

I do think she has an immune deficiency and so does her pediatrician...A very curious thing as well- she actually tested low IgE...like undetectable, because low "normal" range is very low in the first place- but I really can't find any info on what that means! I know high IgE usually means allergies. Anyway, we will be getting IVIG...will be interesting to see the results. I have been to primaryimmune.org, there just doesn't seem to be a category that really fits my kid, which, I guess is the reason the docs have such a tough time figuring out what to do with her.