immunologist question

[ajcire]

The immunology post got me thinking.. should I be taking my son to an immunlogist? Is that something that you think should be automatically done with a pandas kid?

[tantrums]

We have a WONDERFUL immunologist. She was one of the first to diagnose. But she refers to Dr. T and took his info from us to refer other people to him. She is willing to do anything she can to help.

 

So not sure how helpful it would necessarily be.

[P_Mom]

The immunology post got me thinking.. should I be taking my son to an immunlogist? Is that something that you think should be automatically done with a pandas kid?

 

I am going to say..YES! I believe an immunological work-up is crucial on these kids.

[peglem]

Yes, but as w/ any other specialty- you'll need one that understands or at least is open to understanding PANDAS.

[Suzan]

Our immunologist was interested in learning about pandas and has several pandas patients now. She works in tandem with our neurologist. For us, she kind of leaves most treatment in the hands of our neurologist but I think her input is worth it. She also has us on allergy shots. Controversial on this board about whether to do them or not but for us it seems to be OK. We have TONS of allergies.

 

Since we also got our lyme diagnosis, I'm not sure how involved our immunologist will be. We will see....

[Megs_Mom]

Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance.

 

I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting.

 

A lot of kids here have had a deficiency over time.

[peglem]

Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance.

 

I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting.

 

A lot of kids here have had a deficiency over time.

I can't get that link to work!

[Megs_Mom]

Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance.

 

I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting.

 

A lot of kids here have had a deficiency over time.

I can't get that link to work!

 

Try this - Not sure why it is not pasting right: http://www.primaryimmune.org/publications/book_pats/patient_and_family_handbook_4th.pdf

 

or this: http://www.primaryimmune.org/publications/book_pats/book_pats.htm, and then click on the chapter that you want.

[peglem]

Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance.

 

I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting.

 

A lot of kids here have had a deficiency over time.

I can't get that link to work!

 

Try this - Not sure why it is not pasting right: http://www.primaryimmune.org/publications/book_pats/patient_and_family_handbook_4th.pdf

 

or this: http://www.primaryimmune.org/publications/book_pats/book_pats.htm, and then click on the chapter that you want.

okay, that worked! Thanks.

[ajcire]

Thanks for all your input! Should an immunologist be able to look at my son's antineurol (or whatever they are called) results from the cunningham test and mazke sense out of it? If I make an appt and they ask why I am, what is my reason? Just having concerns about his immune system? He is not a kid who gets sick often (unless we count pandas)... I am not looking for ivig. I guess if an immunologist told me that for some other reason he needed it than I would obviously have to stop and think but I am not looking for it strictly on a pandas diagnosis. My son is very mild but yup, something is still not quite right.

 

Also, should the antineurals catch the attention of the regular ped regardless of pandas or not? I can't even remember if I ever shared it with my ped. My ped is sympathetic to the pandas stuff, believes in it, says he knows strep can do some wonky things to a person, was happy to help me with doing the cunningham draw last year BUT he doesn't treat it..he feels it is out of his realm and I respect him for acknowledging that.

 

I am too frustrated at the prospect of a neurologist again...I can not travel to see one.. have a great one local to me who confirmed pandas but for various reasons don't feel he is still an option for me. Guess I am just not sure what I should be pushing and not pushing.. I am soooo grateful my son is mild but because of that it makes deciding what to do a bit of a challenge..