Treatment

[KaTrina Slaughter]

Hi,

We are in the military.  Hence, moving every 2-3 years.  It's time for orders again.  Wondering if anyone has any thoughts on Johns Hopkins or can recommend a hospital/doctor near Monterey, CA.  Our biggest problem is finding a doctor willing to try Soliris or do the dual transplant (Kidney/liver).  Looking for suggestions or advice.  Have to make a decision next month.  Trying to make the right one.  Feel like we have been pushed onto the next hospital because no one wants to take the risk of the dual transplant (and not looking for a doctor that just wants to experiment) or not sure about Soliris because they don't know enough about it (although I have printed every article on here about it). :)  Please HELP!!!!

[Paula Blanchard Lamigo]

I don't know anything about Johns Hopkins, but we are in the military and I take Devin to Children's National Medical Center (CNMC) in Washington DC. Dr, Kanwal Kher is our doctor & they do quite a few transplants there since all they do is children. Also, Inova Hospital in Fairfax, VA has some long term patients that have aHUS~but I don't know anything about if they do transplants or not. You might want to research both hospitals~I don't know if that would be too far for you or not, but we live south of DC & Baltimore is about 1.5 hours for us. I don't know if this helps you at all, but it might give you some other hospitals to consider/research.

Regards,

Paula Lamigo

[KaTrina Slaughter]

Thank you. :) We were looking at being seen at the Naval Hospital and after talking to them they said that Johns Hopkins would be there back up. But wasn't too keen on the Naval Hospital, as we would be their 1st pediatric PD patient. And our doctor here in Norfolk, didn't seem to confident in them. I believe she mentioned the Children's Hospital as well. I will now expand my research.
Thanks for the help. I'm not from up here, so any suggestions are great. Have a good weekend.

Paula Blanchard Lamigo said:

I don't know anything about Johns Hopkins, but we are in the military and I take Devin to Children's National Medical Center (CNMC) in Washington DC. Dr, Kanwal Kher is our doctor & they do quite a few transplants there since all they do is children. Also, Inova Hospital in Fairfax, VA has some long term patients that have aHUS~but I don't know anything about if they do transplants or not. You might want to research both hospitals~I don't know if that would be too far for you or not, but we live south of DC & Baltimore is about 1.5 hours for us. I don't know if this helps you at all, but it might give you some other hospitals to consider/research.

Regards,

Paula Lamigo

[Paula Blanchard Lamigo]

When we first re-located back to this coast from Southern CA, I contacted both Walter Reed & Bethesda and neither had any experience with aHUS patients & didn't feel comfortable with handling Devin's case. They told me at the time they would Tricare me out to either Children's National or to Inova in Fairfax. I contacted both of those hospitals & gave a list of all the pediatric nephrologists on staff at both places to Devin's pediatric nephrologist at the time, Dr. Ora Yadin at UCLA. She highly recommended CNMC and knew Dr. Silverstein & Dr. Kher. Since Devin is not at the point where he needs a transplant & is not on dialysis, I don't know how the transplant department is, but they are a well renowned hospital and I do know that they have experience with lots of transplants there. I would look into both places and call them if you can, Caroline Wilson is the pediatric nurse at CNMC and she can give you a feel for the physicians there.
If I may ask, what hospital did you go to in Norfolk? We will be relocating in another two years possibly and we looked into that area, but didn't know what hospital to research.

Regards,

Paula

[KaTrina Slaughter]

We use Children's King Daughter (CHKD), Dr. Restanio. :) She is awesome!! She won't transplant Syd. She reccommends the dual transplant, because she is not familiar or comfortable enough with the Soliris to make a decision either way.
Don't go to Jacksonville. Doctors there weren't that good. I'm just saying. Good nurses, but wasn't happy with nephrology team.
What part of California were you in? That is the other place we are looking at. Monterey, to be specific.

Paula Blanchard Lamigo said:

When we first re-located back to this coast from Southern CA, I contacted both Walter Reed & Bethesda and neither had any experience with aHUS patients & didn't feel comfortable with handling Devin's case. They told me at the time they would Tricare me out to either Children's National or to Inova in Fairfax. I contacted both of those hospitals & gave a list of all the pediatric nephrologists on staff at both places to Devin's pediatric nephrologist at the time, Dr. Ora Yadin at UCLA. She highly recommended CNMC and knew Dr. Silverstein & Dr. Kher. Since Devin is not at the point where he needs a transplant & is not on dialysis, I don't know how the transplant department is, but they are a well renowned hospital and I do know that they have experience with lots of transplants there. I would look into both places and call them if you can, Caroline Wilson is the pediatric nurse at CNMC and she can give you a feel for the physicians there.
If I may ask, what hospital did you go to in Norfolk? We will be relocating in another two years possibly and we looked into that area, but didn't know what hospital to research.

Regards,

Paula

[Paula Blanchard Lamigo]

When I was pregnant, we were in San Diego, when Devin was diagnosed, we were at Edwards AFB in the Mojave (north of LA), so they sent us to UCLA. I don't know any of the hospitals up north in Monterey. But, I can say that UCLA is AWESOME!!! That is good to know about Jacksonville, did you ever consider Orlando? Would that have been an option for you? We were up to 95% sure we were getting orders to there & then they got pulled. I researched the hospital there & asked Dr. Yadin about the physicians on staff at the time, from what I recall, she knew one or two of them & said they were very good. I can't remember the name of that hospital though.

From what I remember of northern CA (hubby has family up there), you are going to want to be close to whatever hospital you find since the traffic is horrible! Am I correct in assuming you are a navy family? If so, doesn't the navy allow homesteading? With Syd's condition, shouldn't that be taken into account? Will Dr. Restanio put in an urgent letter to the EFMP program stating how important it is that you don't relocate or relocate to XYZ area to accommodate Syd's needs? I know that Dr. Kher put in Devin's file that we update every two years that it is important that Devin has consistent coverage because of his rare syndrome & that switching doctors might not be conducive to maintaining his health in the long run. Right now, we have two more years here & one more move until Dwaine can retire. We are currently deciding if the more important thing is to stay in the area, no matter what new orders dwaine receives.

Paula

[KaTrina Slaughter]

We can homestead. Problem is, no one wants to even consider doing Soliris. And they can't do the dual transplant here or Florida. Right now I am trying to research and find a doctor willing to consider doing one of the procedures. I understand about not moving doctors, but what is the point in staying somewhere that you aren't that fond of when all they can do medically is maintain the status quo.
We have thought about going back to Texas where we have a house, but my son (8) has said under no condition are we to split up for longer than a deployment. And Daddy had better be coming home to wherever we are. :) (Gotta love 8 year old logic).
We have it in my husband's record that we have to be in the best place medically for Syd. And even in choosing orders we have been talking with the detailer for the last year, to make sure they understand why we are choosing the orders that we are choosing. If I thought Syd could get the care she needed here in VA than I would consider staying. But I already know that they can't do the dual transplant here, and because Soliris is so new and not FDA approved, Dr. Restanio won't entertain it. Basically they have said treatment wise, it's my and my husband's decision. And they will do their best to help us research doctors that can perform that treatment. I am so frustrated right now that I don't know what to do. :) So the easiest thing, is to move and try a fresh perspective. I'm enough of a bulldog, that I usually have the doctor on board with how I am use to having things done. Allowing for some changes but not a lot. With aHUS being so rare, not too many doctors want to mess with getting it wrong, so as long as they feel they can blame any mishaps on me, I guess they are comfortable doing what I want.
That's why I warn against Jacksonville. Doctor wasn't listening and when the labs came back screwy, he didn't do anything, and Syd ended up flat lining and going with oxygen for about 15 mintues. Causing major damage.
I didn't get to check out doctors in Orlando, too far away from Jacksonville. They did send us to Gainesville to be evaluated for transplant. I later found out that Gainvesville listed Syd because they knew we were moving and would be some one elses problem. :( So I have nothing good to say about Florida.

Paula Blanchard Lamigo said:

When I was pregnant, we were in San Diego, when Devin was diagnosed, we were at Edwards AFB in the Mojave (north of LA), so they sent us to UCLA. I don't know any of the hospitals up north in Monterey. But, I can say that UCLA is AWESOME!!! That is good to know about Jacksonville, did you ever consider Orlando? Would that have been an option for you? We were up to 95% sure we were getting orders to there & then they got pulled. I researched the hospital there & asked Dr. Yadin about the physicians on staff at the time, from what I recall, she knew one or two of them & said they were very good. I can't remember the name of that hospital though.

From what I remember of northern CA (hubby has family up there), you are going to want to be close to whatever hospital you find since the traffic is horrible! Am I correct in assuming you are a navy family? If so, doesn't the navy allow homesteading? With Syd's condition, shouldn't that be taken into account? Will Dr. Restanio put in an urgent letter to the EFMP program stating how important it is that you don't relocate or relocate to XYZ area to accommodate Syd's needs? I know that Dr. Kher put in Devin's file that we update every two years that it is important that Devin has consistent coverage because of his rare syndrome & that switching doctors might not be conducive to maintaining his health in the long run. Right now, we have two more years here & one more move until Dwaine can retire. We are currently deciding if the more important thing is to stay in the area, no matter what new orders dwaine receives.

Paula

[Paula Blanchard Lamigo]

Where in Texas? Devin's first episode occurred there when we brought him back for a family reunion & so he could be baptized. He got sick in Victoria (where my parents live now), but he was life-flighted to Santa Rosa in San Antonio. Another good experience~but I have to admit, at the time it was treated like HUS. They do transplants there, but I don't know if they handle dual transplants. Another good hospital is in Houston (can't think of the name of it right now, but I assume they are one of the best. One of the other family's has to travel there with their son from Louisiana for his dialysis & checkups. (He already has had a failed kidney transplant). If I think of the name of the family & the hospital I will email it. Nevermind, my tired brain remembered it~Texas Children's Hospital.

Good to know about Florida, since we still hadn't ruled it out. Now I will! :) Another good source might be to contact the team at University of Iowa~sorry, it's late & I have company, so names escape me at the moment. Anyway, they might be able to help you in your quest to find a hospital that could either perform a dual transplant or a kidney transplant + use of Soliris. Sorry I couldn't help you more, I'll think about it tonight & get back to you in a day or so if I have any other ideas that might be of any help.

[KaTrina Slaughter]

You've been a big help already. We were in Katy, TX right outside Houston when she was orginially diagnosed. Treated as HUS as well. I am not opposed to going back there. Have kept in touch over the years.
Thanks for talking to me. I know it's late and company is way better than dwelling on this. Have fun and a good rest of the weekend.

[Paula Blanchard Lamigo]

KaTrina Slaughter said:

You've been a big help already. We were in Katy, TX right outside Houston when she was orginially diagnosed. Treated as HUS as well. I am not opposed to going back there. Have kept in touch over the years.
Thanks for talking to me. I know it's late and company is way better than dwelling on this. Have fun and a good rest of the weekend.

[Paula Blanchard Lamigo]

University of Maryland Medical Center is another huge transplantation hospital. They are known for the heart/liver dual transplant. If Baltimore or the MD area seems to be the area, that might be another hospital to consider. The family that travels from LA to Houston are the Billingsleys~Aida & Gene. Their son is a teenager now. Would you still be moving this year, or are these orders for next year?

[Paula Blanchard Lamigo]

Here's a link to UMMC's pediatric transplant team site: http://www.umm.edu/transplant/ped_transplant_team.htm

Pediatric Nephrologist Mona Khurana, MD~ she is a peds nephrologist at Children's National Medical Center in DC. She is another good source of info regarding transplants at Children's.

Hope some of this information helps you.

[KaTrina Slaughter]

Paula,
You've been a big help. We get orders in Sept for move sometime in May/June timeframe.
I just found out today our doctor here is going to send us up to Boston, MA to get the opinion of a specialist there. Seems like the train of getting Syd moving forward just hit hyperdrive. :) I'll keep you posted.

Paula Blanchard Lamigo said:

Here's a link to UMMC's pediatric transplant team site: http://www.umm.edu/transplant/ped_transplant_team.htm

Pediatric Nephrologist Mona Khurana, MD~ she is a peds nephrologist at Children's National Medical Center in DC. She is another good source of info regarding transplants at Children's.

Hope some of this information helps you.