Letter to Dr. Chacon and Dr. Malik - What's Happening with Hopkins?

Special Note Regarding This Post:
When reading this post, keep in mind that we were told just days previous that Jessie needed surgery "within weeks." We were in a definite panic!
Kristi and I are getting concerned as to whether Johns Hopkins is the place for us to seek a second opinion. It has been almost a week since Cooks original contact with them. So we drafted another letter to Jessie's Neurologist and it is presented below.

Dear Dr. Chacon and Dr. Malik,

After talking to you both in the EMU last week, it is our understanding that Jessie needs surgery within weeks, not months. We felt a sense of urgency from you, and we assume that is because you are worried about cognitive and physical decline. Is this true? We also heard someone say that you were worried about it going to the other side of the brain. Did that mean the seizures, or the disease itself?

We know that you have been trying to contact Johns Hopkins for almost a week, to get us in for a Diagnosis Confirmation (2nd Opinion), and we appreciate that so much. With Johns Hopkins lack of response, however, we are beginning to question whether Johns Hopkins is the place to get Jessie’s diagnosis confirmed. What do you think? Are you finding it difficult to get responses back in a reasonable time frame? Are you finding them hard to work with? Do they have too many patients?

We are totally open to any other suggestions for hospitals. For our future psychological health, we need to have Jessie’s diagnosis confirmed. We were hoping that this would be by the “experts”, but we understand that sometimes experts get complacent or too busy to be effective.

Kristi and I are very much leaning toward having the surgery done at Cooks, because of the integrated Rehabilitation Wing (Unlike the Kennedy Krieger Center at Johns Hopkins), the cooperation between groups, and our family support structure being close by. Also, there are so many people at Cooks who are familiar with Jessie’s Case already and you have taken such good care of her in the past.

As you know from working with us in the past, we need a lot of communication, and we don’t feel like you are getting that from Johns Hopkins. Either that, or we are grossly misinterpreting the lack of progress in getting diagnosis confirmation appointments set up with Hopkins. Are we being too impatient? We can understand us getting ignored, but not another physician from another leading hospital. How would they treat Jessie? Do we have time to wait for Johns Hopkins at their current rate of responsiveness? Would you have better luck getting us into Boston Children’s or another facility?

Bottom Line, We need to know that we are doing the best thing for Jessie and things don’t feel that way at the moment.

Physically Jessie is doing very well right now, with the exception of her hand function. The twitching is down to about a “1” (on 1 – 5 scale), and her seizure frequency is lower. We fully expect this to digress as the steroid dose is lowered. We taper to 20mg tomorrow.

Is some form of IVig or other therapy still being considered? For a while, you were talking about trying that or another protocol from Hopkins.

Should we be meeting with the surgeons at Cooks in the interim, while we wait for another facility to agree to meet with us?

Sorry for so many questions, but it is difficult not knowing what is going on, especially after hearing that she needs surgery within weeks.

Sincerely,

Cris and Kristi Hall

http://jessiekelley.blogspot.com/