Need Cunningham contact info

[fuelforall]

God, I'm sorry, Nancy.

I wish I had some good news to report but...

My son has big time sensory integration disorder. Dr Mark suggested this and we suspect he's right. This is probably part PANDAS related. But we're going to try to get some OT in a gym for him because he is generally responsive to such things. He can't live in his body and so it affects behavior big time.

 

Hang in there, hope the steroids kick in.

 

Michael

[NancyD]

That is something I have been thinking about lately (that is, seeing if I am a carrier) and plan to get myself tested. I have never had a strep infection that I know of but I could be a carrier. It is just the two of us -- she rarely sees her dad.

 

Today I had endless meetings with doctors and service agencies, all while dd was in crisis. Before I left she finally broke down in my arms and started crying (after being so combative and screaming most of the day), telling me how scared she is. My heart is breaking for her!!!!

 

I cannot begin to imagine what it must be like to be in our children's shoes day in and day out. To live with their daily fears and anxiety, obsessions and behaviors, gastro problems, tics, sleepless nights, immune dysfunction, angst over seeing one doctor after another, and being prodded, probed, and picked on...

 

It really breaks your heart!

 

Nancy

 

p.s. I asked the doctor and they may have some of her blood frozen from the day before starting prednisone, so we might be able to do another Cunningham test.

Edited May 11, 2010 by NancyD

[memom]

Nancy,

 

My heart goes out to you and your daughter. I think the most difficult part is that if you are alone in this struggle it makes it that much harder. It is so hard anyway to understand and manage the day to day care when they are in an exacerbation, but to not have someone else to run things past, or to take the load off makes it that much harder.

 

Here's hoping you have good help in your journey, and that we can be an understanding group of support. I'm glad you have Dr. Latimer on your side.

 

Ellie

[tpotter]

I'm praying for you. I went through something similar, but nowhere as bad, with my, then 15 y/o DS. But, we didn't know until several months later that it was even PANDAS. Became suicidal (he's had other outbursts, where he wanted to kill us, and the rest of the family had to leave the house overnight.) After the 1st hospitalization (anxiety meds did nothing), we got very lucky, several months later, and found Dr. K (we use Dr. L. now, because she is so much closer, and both are equally great.) We found him because of our other, more "classic" PANDAS kid. Because of him, we finally have a dx, and are being treated properly.

 

Good, good luck.

[Ellen]

Nancy, you and your daughter are in my thoughts. Hang in there.

 

Ellen

 

That is something I have been thinking about lately (that is, seeing if I am a carrier) and plan to get myself tested. I have never had a strep infection that I know of but I could be a carrier. It is just the two of us -- she rarely sees her dad.

 

Today I had endless meetings with doctors and service agencies, all while dd was in crisis. Before I left she finally broke down in my arms and started crying (after being so combative and screaming most of the day), telling me how scared she is. My heart is breaking for her!!!!

 

I cannot begin to imagine what it must be like to be in our children's shoes day in and day out. To live with their daily fears and anxiety, obsessions and behaviors, gastro problems, tics, sleepless nights, immune dysfunction, angst over seeing one doctor after another, and being prodded, probed, and picked on...

 

It really breaks your heart!

 

Nancy

 

p.s. I asked the doctor and they may have some of her blood frozen from the day before starting prednisone, so we might be able to do another Cunningham test.

[forjpj]

Stay strong Nancy!! We are here to help you!! Sending good vibes your way!! Do you think you might end up at Georgetown for the pex soon? I'm sure your mind is swimming...Try to get some rest!! Tell your DD hi!!

[NancyD]

Thank you all for your good wishes, thoughts, and prayers. They are REALLY helping me through this, particularly since I am doing this all alone. DD had a good night -- at her request they gave her a dose of risperdal to calm her down from last night's meltdown. It will only be used as needed. She is much calmer this morning and accepting of the next phase of her treatment. In fact, she wants to go immediately so she can do what she needs to do to go home. It's the uncertainty of not knowing what to expect, when she is going, and feeling like they will strip her of all her rights and choices that frightens her.

 

So far all the test results are within normal range except ASO, though it's only slightly elevated (~250). We're still waiting for Anti-DNASE B to come back. I'm not sure they did all the immune tests they were supposed to. I have to check. Also waiting for yeast levels. If someone can, please cut and paste here the list of immune tests including sub-classes. I don't have them with me and it will be days before I can get home.

 

Sarah, yes we plan to do pheresis there at Georgetown hopefully next month. Maybe we can get together? We have a telephone consult with Dr. L June 1 and we'll see if she wants to move forth. I'm pretty sure she will. I just pray insurance will cover it. Naturally, the team at Children's does not support it. I will give my Sarah your message.

 

Than you all!

Nancy

[Megs_Mom]

I bolded the ones that I generally feel are important to rule in or out. Also, has she had an igenex Lyme panel done? You can order the kit from the website, and then have it run & overnight it yourself (kind of like Cunningham's).

 

Thyroid Profile, T4, T3 uptake, Free Throxine Index

Tyhroid antibodies, Thyroid peroxiadas TPO ab, Thyroglobulin antibody

 

CBC with Diff (this has a long list of sub groups, but this order should automatically include all, such as WBC, RBC, Absolute Gran, Lymph, etc)

Sed Rate

Immunoglobulins, Quantitative (IgG, IgA, IgM)

Ceruloplasmin

RA Factor

Anti Nuclear Antibody (ANA) Reflex

ANA Titer & Pattern

Cold Agglutinins

Diptheria Antibody, IgG

Cryoglobulin Evaluation

IgGsubclass 1, 2, 3, 4

Influenza A Virus Ab, IgG

Influenda B Virus Ab, IgG

Strep Pneumoniae Serotyples, IgG (14 subtypes)

Tetanus Toxin Ab, IgG

[forjpj]

Yes, let me know when you go to Georgetown. I would love to meet up with you, and sit with your daughter some, if you like, so you can get a break!

[NancyD]

I bolded the ones that I generally feel are important to rule in or out. Also, has she had an igenex Lyme panel done? You can order the kit from the website, and then have it run & overnight it yourself (kind of like Cunningham's).

 

Thyroid Profile, T4, T3 uptake, Free Throxine Index

Tyhroid antibodies, Thyroid peroxiadas TPO ab, Thyroglobulin antibody

 

CBC with Diff (this has a long list of sub groups, but this order should automatically include all, such as WBC, RBC, Absolute Gran, Lymph, etc)

Sed Rate

Immunoglobulins, Quantitative (IgG, IgA, IgM)

Ceruloplasmin

RA Factor

Anti Nuclear Antibody (ANA) Reflex

ANA Titer & Pattern

Cold Agglutinins

Diptheria Antibody, IgG

Cryoglobulin Evaluation

IgGsubclass 1, 2, 3, 4

Influenza A Virus Ab, IgG

Influenda B Virus Ab, IgG

Strep Pneumoniae Serotyples, IgG (14 subtypes)

Tetanus Toxin Ab, IgG

 

Oh you are so wonderful, Meg's Mom. This is just what I needed. Thank you so much!

 

Nancy

[NancyD]

Yes, let me know when you go to Georgetown. I would love to meet up with you, and sit with your daughter some, if you like, so you can get a break!

 

I would love that if you are available, Sarah!

 

Nancy