What kind of Dr, what kind of tests?

[pixiesmommy]

We want to do as many tests as possible pre-IVIG (if possible) and are looking for a doctor who will order them.

 

We are thinking of these various doctors and want to do some calling tomorrow, but aren't sure what is best.

 

-DAN! doctor

-Allergist/Immunologist (most look very allergy focused, not so much immuno focused)

-Homeopathic focused pediatrician (thinking they may have a different view and know of PANDAS as well)

-Rheumatologist

 

Now, what kinds of tests do we ask for? What are the specific tests we are looking for in relation to things like Primary Immune Deficiency, and other things that coincide w/PANDAS?

 

We have had (1 yr ago unless noted otherwise)-

Urine porphrin test, Selenium levels, Vitamin K levels, Testosterone/hormone levels, Kawasaki-focused EKG (2 yrs ago), MRI of brain and orbits w and w/o contrast (2 yrs ago), regular CBC panels they run, 2 different blood tests for Celiac (one was high so we did a more specific and it was normal but I still wonder...), SED rate (1 yr ago, 2 yrs ago), IGG, IGM, IGA (2 weeks ago w/Dr K)

 

Thanks for any leads you can give us!

Manda

[ShaesMom]

We want to do as many tests as possible pre-IVIG (if possible) and are looking for a doctor who will order them.

 

We are thinking of these various doctors and want to do some calling tomorrow, but aren't sure what is best.

 

-DAN! doctor

-Allergist/Immunologist (most look very allergy focused, not so much immuno focused)

-Homeopathic focused pediatrician (thinking they may have a different view and know of PANDAS as well)

-Rheumatologist

 

Now, what kinds of tests do we ask for? What are the specific tests we are looking for in relation to things like Primary Immune Deficiency, and other things that coincide w/PANDAS?

 

We have had (1 yr ago unless noted otherwise)-

Urine porphrin test, Selenium levels, Vitamin K levels, Testosterone/hormone levels, Kawasaki-focused EKG (2 yrs ago), MRI of brain and orbits w and w/o contrast (2 yrs ago), regular CBC panels they run, 2 different blood tests for Celiac (one was high so we did a more specific and it was normal but I still wonder...), SED rate (1 yr ago, 2 yrs ago), IGG, IGM, IGA (2 weeks ago w/Dr K)

 

 

Thanks for any leads you can give us!

Manda

 

Manda,

 

Have you done the IGG subclasses and Pneumococcal titers test? These relate to the immune system. You can call the Immune Deficiency Foundation and ask them if they could recommend someone in your area who specializes in the Immunology side rather than allergies. 800-296-4433. You can also go to this website and search for someone in your area: wwwjmfworld.com

 

Here is a link to the tests recommended by the Jeffrey Modell Foundation (Immune tests) I would encourage you to have the first two catagories done.

http://www.info4pi.org/aboutPI/index.cfm?s...ntent=algorithm

 

here is a link to an article on Specific Antibody Deficiency. This happens when all the Ig & Igg subclasses are normal but the person does not mount a response to the specific titers (Pneumococcal for example)

http://www.uptodate.com/patients/content/t...~/3O3rTLTTn__c/

[ShaesMom]

You need to have these tests done before IVIG because the IVIG will effect the outcomes.

[pixiesmommy]

We definitely realize we are racing against time with everything.

 

Here is what Dr K ordered 3 weeks ago, straight from the prescription pad:

Dg, Encephalopathy

 

next line is hard to read but looks like : AntiDNze & Titers

 

Mycoplasma Pneumonia I-G-G-igM

 

(Then last week ordered IGA)

 

----------

Please allow me a vent:

 

This is really like beating our heads against a wall. Pixie is out of school, My DH is out of work (to help care for her b/c she is so out of control), Dr K had thought he would get us in to IVIG this week but they are booked so we won't find out until tomorrow if it is next week or even later. She can't go back to school until she is under control (though Dr K says 3 days and she should be back at school starting an hour a day) and in the meantime we don't know if she has strep (we did get an appt with our ped today at 1:30) and she's not on any meds to help her calm down.

 

So far today we have called-

 

The ped (they answered!!) and set up appt for 1:30 to see nurse for quick strep and 72 hr culture - both

Dr K (answered) and gave info for what insurance needed from them, got info that we can't do IVIG on Thurs and should get date tomorrow

800# to recommend immunologist in our area (no answer, left msg)

Immuno we found on the PID page, who is an hour away at Children's hosp. (no answer, left msg)

Psychiatrist to get recc. for OT (no answer, left SECOND msg since he didn't return our call last week!!)

Psychologist (she doesn't know Pixie is out of school and we want to move up to twice a week therapy if possible, as well as OT- left message)

Public school system (left message asking about homebound tutor while she can't go to school)

Pixie's teacher at current school to find out about picking up work she is missing

 

Emailed-

Dr K to see what we can do, if anything, while in crisis and waiting for IVIG (per Diane's instructions via second phone call today w/them)

Pixie's teacher, both via school website and private email just to cover all bases so she realizes we are attempting to contact her.

 

So far, guess who has called/responded??

NO ONE.

 

I feel so impatient. I know we aren't the only ones in the universe going through this and we aren't the only patients these people have, etc etc. But everyone knows the crisis we are in. We are calling and calling and BEGGING for some kind of help and answering services are telling us, 'Well, they checked their messages and have your message flagged, etc etc' but STILL no return calls. I feel like "Arghhhhhhhhhhhhhhhhhhhh!!!!"

[dcmom]

I am so sorry you are having such a rough time.

 

If money isn't a huge issue, and your husband's job is secure, I would put pixie's school as last on your worry list. When you get her treatment, she should improve, and at that point you should be able to get her back to school or figure out some homebound stuff. Through all of this pandas stuff, I have realized as a parent I have to relax about school and that they will catch up when they are healed. I would try to put school out of your mind untill you get ivig.

 

I haven't done it, but many parents seem to think epsom salt bath soaks are calming. I would try a daily bath and see if it helps.

 

I think almost any immunologist can run a panel of tests for you- just go to one on your health plan, maybe at a local, decent hospital? Then, you could take a copy of those records to whoever you find at a later date.

 

If she is having IVIG in the next week or so, I think you might not have to rush on upping the therapy. For us, it was not a huge help in the midst of the worse time- but much more beneficial when daughter was stabilized.

 

I can feel your stress. Take care of yourself as much as you can.

 

Keep us posted...

[pixiesmommy]

Some progress made

 

We had a scare with her yesterday b/c she didn't want to go to ped. We are very close to having to admit her to a hospital or treatment center because when she has these episodes, she has no concept of safety for herself. (She throws herself into things, etc. and yesterday was running away from us, tripping, falling....) It's physically taxing to keep her restrained and safe and sometimes almost impossible if she is really fighting.

 

The good thing to come of this was that Dr K did take our begging to heart and schedule us for TOMORROW for IVIG!

 

Also talked to an immunologist, which we can't get in with until AFTER the IVIG, but maybe we can start a relationship with him if not run bloodwork beforehand (I'm going to print the page from the Modell site and ask Dr K what he is willing to run while we have the IV in.) We do have an appt set with him for next Tuesday.

 

Also, her therapist is back from vacation and we are going to try to start OT, which she will recommend for her to our insurance co due to the sensory and tactile issues that have increased. Hopefully some of this will resolve with IVIG, but I want to make sure we have plans in place if things don't get much better.

 

Thank you all for your support as we go through this.

 

Much love,

Manda

[bronxmom2]

Good luck with the IVIG!!!!!

[pixiesmommy]

Thanks !!

 

Oh, ETA- we also had a strep test and culture done for Pixie yesterday and they did quick tests for the rest of the family (not sure if that is enough or if we also need cultured, but we did what we could get done with just a nurse.) All of the rapid tests were neg.