We need an immunologist

[Agnes26]

Dr. B is booked through the end of the year and not yet taking appointments for 2014. I'm looking for recommendations on other PANDAS immunologists. My daughter can't wait four months.

[beeskneesmommy]

Where are you located? I know an immunologist in Charlotte, NC. Dr. Maeve O'Connor. She is very interested in PANDAS and has recently started a clinic. Here is her link:

 

https://www.facebook.com/OConnorAllergy?ref=br_tf

Edited August 26, 2013 by Beeskneesmommy

[pr40]

does it have to be immunologist? can it be a panadas dr if you need to be seen asap?

[Agnes26]

We are in Indianapolis. We've seen Drs. K and M.

 

There is strep at school and DD8 is flaring while on Augmentin. Prior to school starting, she was 98 percent. She began having neuropsych symptoms the same day that the first case of strep was called in and they got progressively worse until DD was sent home with a fever last Thursday. Thursday, Friday, Saturday, while febrile, DD was 100 percent neurotypical. Fever broke Saturday and neuropsych symptoms ruturned Sunday. Her comprehensive culture came back normal.

 

Dr. M said it's possible that she's having an auto-immune response to strep around her. We've not seen an immunologist, so I'm thinking that's our next logical step, but I'll take any suggestions.

 

Today I have called our pediatrician, our neurologist, Dr. B's office, the head of immunology at our local children's hospital. Dr. M's nurse...I am desperate to get my daughter help.

[pr40]

why not go to dr K again? you can look at it this way, PANDAS is an auto-immune condition but recovery process is not all that mysterious and you don't need an immunologist to tell you that. Immunologist can perhaps help you get IVIG but so can dr K.

unless you suspect other auto-immune conditions like lupus, of course.

 

You may know this already, improving includes:

1) anti-inflammatories

2) long term abx

3) steorid tapers

4) IVIG

5) methylation

6) diet and life style changes

[Agnes26]

why not go to dr K again? you can look at it this way, PANDAS is an auto-immune condition but recovery process is not all that mysterious and you don't need an immunologist to tell you that. Immunologist can perhaps help you get IVIG but so can dr K.

unless you suspect other auto-immune conditions like lupus, of course.

 

You may know this already, improving includes:

1) anti-inflammatories

2) long term abx

3) steorid tapers

4) IVIG

5) methylation

6) diet and life style changes

 

 

why not go to dr K again? you can look at it this way, PANDAS is an auto-immune condition but recovery process is not all that mysterious and you don't need an immunologist to tell you that. Immunologist can perhaps help you get IVIG but so can dr K.

unless you suspect other auto-immune conditions like lupus, of course.

 

You may know this already, improving includes:

1) anti-inflammatories

2) long term abx

3) steorid tapers

4) IVIG

5) methylation

6) diet and life style changes

We are giving her Ibuprofen. We did IVIG last summer with Dr. K. It helped until her antibiotic dose was dropped from therapeutic to prophylactic and she fill off a cliff again. Since then our ped has had her on high-dose augmentin, which seems to keep her from getting strep, but not from having the autoimmune response.

 

We've never tried steroids, but I think she could probably benefit from some now. I just can't get anyone to rx them for her. Feeling like a medical hot potato today.

[cobbiemommy]

Try to call or email Dr K. He might prescribe them for you... Not sure, how many months since you have been to see him, but it is worth a phone call.

[pr40]

why not try the other things on the list as well?

gluten free and casein free is recommended for ALL autoimmune issues.

as is B12, folic acid, zinc, and magnesium.

In my understanding, treatment has to be comprehensive in most cases esp if there is a relapse.

one thing though, changing diet does not have immediate results. supplements act only a bit faster.

steroid taper is a band aid that can help right away.

[nicklemama]

Email Dr K and give him the facts. If its been less than a year since IVIG, he'll respond. My son cannot maintain on prophylactic abx either. We've since found ehrlichia and anaplasma.