Replies to This Discussion

Permalink Reply by Julie Garcia on August 4, 2008 at 5:13pm

Hey there,

I have been to the Pacific Medical Health Center a couple of times.

It was the clinic of my choice back in 2002 when Dr. Deborah Gelinas was there. She is no longer there. I do like how they are organized in terms of check off sheet (if they still have this), see OT, see PT, see, DME, see MDA, see Dr., see social worker, etc. In closing they would ask what are your needs, what are your families needs. Now that I like. Do they still do this?

Do they review your child's medical reports and information and come up with a plan to maximize your child's care? I like it when the medical profession does not accept the condition as terminal, therefore there is nothing to be done. That is not a clinic I would value.

They work with the Sibling Center in SF. It is counseling provided to the sibling who has a brother or sister who is terminal. I like it when a clinic or any doctor for that matter takes in the family as a whole.

I am curious and interested to learn more about Dr. Strouber's clinic. Is that an MDA? I have never been there but always eager to know what is available to our families. What are there resources, what is there attitude, etc?

I currently take my son once a year to see Dr. Wong in Cincinatti and to the Sacramento MDA clinic which is 15 minutes from my home. We also have our son seeing the doctors at Shriners so that if there are any future surgeries needed we have them available. This would be advisable for all families regardless of what clinic they elect.

Rebecca, I don't know if you saw Dr. Craig McDonalds presentation at the conference last month. He is the main doctor at Shriners and I believe still the head doctor at the Sacramento MDA clinic. He will be part of the PTC124 clinics in Sacramento.

I would love to talk and learn more about Dr. Strouber's clinic. Have you been there? Kim Maddux may have information on this clinic. Kim knows more parents in the bay area then I do.

Hope this information helps.

Lets talk later.

Take care,

Julie

Permalink Reply by Kim Maddux on August 5, 2008 at 12:05am

Hi Rebecca and Julie - When Alex was diagnosed almost 4 years ago, we were sent to Stanford and saw the Director of Neurology twice. He bedside manner was horrible. He was doom and gloom and gave us no hope..and did not support anything we wanted to do. I asked around about other drs in the area...Most are not up on the latest research and not supportive of deflazacort. The one dr. I would consider is Dr. McDonald at Davis.

I have heard of both Dr. Miller and Dr. Stroeber but have not seen either one. I know a woman who has a son with Becker and sees Dr. Stroeber. (Her and I have not spoken in 2 years, since I had the twins - so her opinion could be different) Our friends, the Tebbs have seen him also. I know (from what these 2 moms have told me) that he is anti-steroids. The Becker boy family did not give their son steroids and seemed fine with that. Our friends, the Tebbs had their son on predisone and Dr. Stroeber took him off about a year ago (I can't remember why). Unless his attitude has changed, I hear he is not very hopeful or up on the latest... I do know that his is the doctor that attends the MDA summer camp in Bay area. I heard he has attended for years. I have heard that he is a nice and caring man...This is what has been told to me by two moms, I have never met him.

After I heard this about him, I decided that I would not see him.

Hope this helps.

Permalink Reply by Satya Karnala on October 6, 2008 at 1:16am

Hello all,

I have a 14 year old son with DMD and we also see a doctor at Stanford. Lately, we don't get any help or advice from him. Sometimes he is irritated and not up to date with what is going on in the research and would decline anything you ask for.

We are looking for a new doctor in SF Bay Area. Does anyone have any suggestions or references?

Thanks in advance.
Satya (Siddharth's dad)

Permalink Reply by Rebecca Saulsbury on October 6, 2008 at 12:14pm

Hi, Satya
As a caveat: it seems like there is no absolute "good" or "bad" doctor but all good and bad fits for your kid, yourself, your family or your philosophy. It's all so subjective.
My son Milo is almost 8, and as this thread implies, we were fairly dissatisfied at Forbes-Norris (the MDA clinic at California Pacific Med. Center in SF). We gave it one more shot and found that we had a much better neurologist (Dr. Khan). We still have Dr. Miller breeze through and he's ok, but his colleague at Forbes Norris, Dr. Mednick was horrible. Dr. Khan was a young doctor in an almost apprentice position but with lots of current info and knowledge about DMD. His manner was friendly and direct with both adults and kids. I would highly recommend him as doctor. I don't, however, know his depth of knowledge as things progress with DMD. Also, the clinic's focus is on ALS and sometimes it seems they have a slightly experimental attitude to DMD treatment (which shows an overall lack of experience, in my opinion).
I have met Dr Strouber (from UCSF MDA pediatric clinic) at the MDA camp (he is the camp doctor every summer). He seemed incredibly bubbly and kid-friendly. His manner was light and put my kid at ease. He didn't seem to have any problem with dispensing steroids (and he seemed to do a lot of it!). But that doesn't speak to Kim's point (above) of his not supporting prescribing them. If Forbes-Norris continues to be a disappointment , we plan to switch to UCSF and Dr. Strouber (or the clinic in Davis, which is really far for us). I don't believe every kid can stay on steroids, as so many have side-effects that are not worth it to them, so I don't know if that speaks to Dr. Strouber as a poor doctor. Anyone have first hand experience with Dr. Strouber, good or bad? I'm really interested if anyone replies to this!
In health and happiness,
Rebecca

Permalink Reply by Julie Garcia on October 15, 2008 at 5:15pm

I have to say if I had to select between MDA in SF or Sacramento, it would be Sacramento without a hesitation. SF has not been as open to the PPMD information I have provided them in the past. They appeared to be responsive but when I attempted to follow up they did not call back.

Sacramento supported the chair I wanted for my son and SF did not.

Julie

Permalink Reply by Neup on November 8, 2008 at 5:19pm

We had one experience w/ UCSF ... four years ago. Would be happy to elaborate in non-public forum.