Need Cunningham contact info

[NancyD]

Can someone please post or PM me with Kathy Alvarez' contact info ASAP? DD14 was hospitalized on Tues in severe exacerbation of her PANDAS. Now that things have calmed down a bit and we have completed tests (I.e., complete immune and hormone workup, thyroid, ASO/Anti-DNASE B, liver, yeast, etc), it just dawned on me that I should have contacted Kathy to send me a new kit. But I don't have her contact info with me on my iPhone at the hospital. Looks like we could be here for a while. We started her on a steroid burst Friday night and so far no adverse effects. Thanks everyone!

 

Nancy

[P_Mom]

Cunningham's contact info. Praying for you!

 

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

[thereishope]

Sending prayers your way!

[monarchcat]

Kathy's phone and email:

 

Kathy 405-271-2133 ext47460

 

Kathy-Alvarez@ouhsc.edu

 

So sorry to hear you are in such a crisis.... you guys are in my thoughts.

 

Suzanne

[bgbarnes]

Kathy's phone and email:

 

Kathy 405-271-2133 ext47460

 

Kathy-Alvarez@ouhsc.edu

 

So sorry to hear you are in such a crisis.... you guys are in my thoughts.

 

Suzanne

You can have them draw blood and freeze it until the kit gets there if you really want the most accurate result at hte height of an exacerbation!

Thinking of you and your family!

Prayers are with you!

Brandy

[forjpj]

I'm so sorry! We will be praying for you! Tell her her friends from Dr. L's office are praying for her!!

Sarah

[NancyD]

Thanks so much, everyone!! I should have thought to freeze her blood earlier in the week but with all that has been going on I have been running on empty. I'll email Kathy now. If the steroid burst works that will be huge. Dr. L wants us to hold off doing another infusion for now (last one was mid March) and we plan to do pheresis over the summer. DD was quite violent, threatened to kill me, and she has been psychotic-like. Then she pierced her lip using a needle and earring (neither were sterile). She was rushed to a local hospital where she spent the first few nights traumatized in a locked-up ER psyche unit while we waited for a bed at Children's Hospital. It was 3 days without any treatment...and child friendly, it was not! She was finally transferred by ambulance to Children's Hospital where she is now getting the treatment she needs. She is doing everything she can to avoid counseling but with all she has gone through over the years (between the ASD and PANDAS) she could really benefit from some intensive counseling. Once the medical team feels she is completely stable on the prednisone she will be moved to a psyche unit for more intensive treatment (no psyche meds!). Will keep you posted.

 

Nancy

[saidie10]

So sad to hear sending positive thoughts your way.

 

Thanks so much, everyone!! I should have thought to freeze her blood earlier in the week but with all that has been going on I have been running on empty. I'll email Kathy now. If the steroid burst works that will be huge. Dr. L wants us to hold off doing another infusion for now (last one was mid March) and we plan to do pheresis over the summer. DD was quite violent, threatened to kill me, and she has been psychotic-like. Then she pierced her lip using a needle and earring (neither were sterile). She was rushed to a local hospital where she spent the first few nights traumatized in a locked-up ER psyche unit while we waited for a bed at Children's Hospital. It was 3 days without any treatment...and child friendly, it was not! She was finally transferred by ambulance to Children's Hospital where she is now getting the treatment she needs. She is doing everything she can to avoid counseling but with all she has gone through over the years (between the ASD and PANDAS) she could really benefit from some intensive counseling. Once the medical team feels she is completely stable on the prednisone she will be moved to a psyche unit for more intensive treatment (no psyche meds!). Will keep you posted.

 

Nancy

[NancyD]

Thank you for all the good thoughts! I just spoke with Kathy. Unfortunately we missed the window of opportunity for the Cam Kinase test. Can't do it while on steroids as it lowers the numbers. Darn!

[thereishope]

Don't fret too much about that. Just concentrate on getting her better now. Is there a plan in place?

Edited May 10, 2010 by Vickie

[NancyD]

Vickie,

 

She is aleady on 1000 XR Augmentin 2x daily and prednisone 30 mg 2x daily. Then once stable, intensive in-house counseling with other girls her age. Followed by plasmapheresis in June or whenever we're cleared for it. That is as far as we have gotten.

 

Nancy

[marilina]

I am close to you Nancy, although from Italy .

[colleenrn]

Nancy,

I am so sorry. I am thinking of you and your daughter. Hang in there!

Colleen

[Mary M]

Please know you are in my thoughts...no one should ever have to experience what we experience with our children. May the medical profession be guided with wisdom and compassion.

[matis_mom]

Vickie,

 

She is aleady on 1000 XR Augmentin 2x daily and prednisone 30 mg 2x daily. Then once stable, intensive in-house counseling with other girls her age. Followed by plasmapheresis in June or whenever we're cleared for it. That is as far as we have gotten.

 

Nancy

Nancy,

I am sorry to hear what your family is going through. Hopefully plasmapheresis will do the trick. I don't remember your family stats, but have you ruled out any carriers/activite infections in other family members? This is paramount in you are going for plasmapheresis.

Hope things settle quickly and the emotional wounds heal promptly.

 

Isabel