Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic specialist has just gone there. We are thinking of taking Jake to see him there, that's what has been recommended. Can anyone give advice or hints to make this an easy trip? > Thanks - > Barb Barb Thats where Barb takes . Wyllie was their dr. martinccf@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Barb, We go to CC also. We took MaKenzie there in Jun '00 to see about surgery and they told us about the diet. (Our other Dr dismissed it as not an option for her ! She started the diet in 5/01 and we have been very happy with them! Dr. Wyllie is our Dr. as well. She is very good!! One tip: You can call the Mc house the night befor eyou arrive and try to get a room. We have not had any trouble getting in and it is some much easier than staying in a hotel room!! And cheaper! Good luck! Jeni, Mom to MaKenzie 2 & Bo 5 Re: Cleveland Clinic > Hi Barb, > > Hannah has began going to CC for about two yrs. now. That is where > her diet was initiated in Jan. We are very happy with things out > there. The Keto dietician is fantastic! Dr. Elaine Wyllie is our ped. > epileptologist. She is also very good. How far of a drive will you > have? How old is Jake and what would he be having done there? Gail--- > In ketogenic@y..., " swoyer " <swoyer@m...> wrote: > > , to be a pain....please forward to epilepsy-kids.... > > > > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic > specialist has just gone there. We are thinking of taking Jake to > see him there, that's what has been recommended. Can anyone give > advice or hints to make this an easy trip? > > Thanks - > > Barb > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 We would have to fly from Boston. We would be seeing Marvin Natowicz, a highly regarded metabolic specialist who recently went there from Mass General in Boston. Just my luck ( Anyway, he specializes in diagnosing " rare " diseases....and whatever else fits in that category, he's also a pediatric neurologist....had at least an 8 month wait here. I think he also has some specialty in autism. Suspicion on Jake is that epilepsy is the tip of the iceberg, as they like to put it - doctors are stumped and feel there is an underlying, difficult to diagnose and treat, progressive brain disease at work here. Not very encouraging. They want Marvin's opinion before we do a brain biopsy, which is under consideration. Jake will be 6 in November. Flying is not a treat, to say the least. I panic the whole time that he'll have a grand mal. Oh, the things we mothers have to do!!! We are feeling out the logistics to see how do-able the trip is. Barb Swoyer, Jake's mom Re: Cleveland Clinic > Hi Barb, > > Hannah has began going to CC for about two yrs. now. That is where > her diet was initiated in Jan. We are very happy with things out > there. The Keto dietician is fantastic! Dr. Elaine Wyllie is our ped. > epileptologist. She is also very good. How far of a drive will you > have? How old is Jake and what would he be having done there? Gail--- > In ketogenic@y..., " swoyer " <swoyer@m...> wrote: > > , to be a pain....please forward to epilepsy-kids.... > > > > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic > specialist has just gone there. We are thinking of taking Jake to > see him there, that's what has been recommended. Can anyone give > advice or hints to make this an easy trip? > > Thanks - > > Barb > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 How far from the airport? Can I take a cab or do I need to rent a car? Re: Cleveland Clinic > > > > Hi Barb, > > > > Hannah has began going to CC for about two yrs. now. That is where > > her diet was initiated in Jan. We are very happy with things out > > there. The Keto dietician is fantastic! Dr. Elaine Wyllie is our ped. > > epileptologist. She is also very good. How far of a drive will you > > have? How old is Jake and what would he be having done there? Gail--- > > In ketogenic@y..., " swoyer " <swoyer@m...> wrote: > > > , to be a pain....please forward to epilepsy-kids.... > > > > > > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic > > specialist has just gone there. We are thinking of taking Jake to > > see him there, that's what has been recommended. Can anyone give > > advice or hints to make this an easy trip? > > > Thanks - > > > Barb > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > > > List is for parent to parent support only. > > It is important to get medical advice from a professional > keto team! > > Subscribe: ketogenic-subscribe > > Unsubscribe: ketogenic-unsubscribe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Barb swoyer, Since you live in Mass, how about trying Hopkins Hospital in Baltimore, Md? have you heard of that Hosp? or have u gone there before? U could drive there from Mass and not have to worry about flying? just a suggestion. susan swoyer wrote: We would have to fly from Boston. We would be seeing Marvin Natowicz, ahighly regarded metabolic specialist who recently went there from MassGeneral in Boston. Just my luck (Anyway, he specializes in diagnosing "rare" diseases....and whatever elsefits in that category, he's also a pediatric neurologist....had at least an8 month wait here. I think he also has some specialty in autism.Suspicion on Jake is that epilepsy is the tip of the iceberg, as they liketo put it - doctors are stumped and feel there is an underlying, difficultto diagnose and treat, progressive brain disease at work here. Not veryencouraging. They want Marvin's opinion before we do a brain biopsy, whichis under consideration.Jake will be 6 in November. Flying is not a treat, to say the least. Ipanic the whole time that he'll have a grand mal.Oh, the things we mothers have to do!!!We are feeling out the logistics to see how do-able the trip is.Barb Swoyer, Jake's mom Re: Cleveland Clinic> Hi Barb,>> Hannah has began going to CC for about two yrs. now. That is where> her diet was initiated in Jan. We are very happy with things out> there. The Keto dietician is fantastic! Dr. Elaine Wyllie is our ped.> epileptologist. She is also very good. How far of a drive will you> have? How old is Jake and what would he be having done there? Gail---> In ketogenic@y..., "swoyer" <swoyer@m...> wrote:> > , to be a pain....please forward to epilepsy-kids....> >> > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic> specialist has just gone there. We are thinking of taking Jake to> see him there, that's what has been recommended. Can anyone give> advice or hints to make this an easy trip?> > Thanks -> > Barb>>>> "The Ketogenic Diet....a realistic treatment option, NOT just a lastresort!">> List is for parent to parent support only.> It is important to get medical advice from a professionalketo team!> Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 On Thu, 25 Oct 2001 08:45:15 -0400 "swoyer" writes: How far from the airport? Can I take a cab or do I need to rent a car? Barb... IVe been taking to CCF for over 6 years. Wyllie is also bryans doc. She is the one that blew his Dx!!! I dont know anything bout this guy you have to see. most of my experience with them has been good (other then Wyllie). the airport is bout 30 minutes from CCF. I have never done it but i know that if you stay at the Guest House (the one someone else referred to) they have a shuttle. Also call the ron mac house. I think they may be able to arrange a pick up if you are staying there. I was not able to stay with them last time I went (they had a waiting list) so they sent me to a hotel down the road who gave me a discount and only charged 55 a nite. There was also a time when I talked to a social worker at the hospital who gave me vouchers for a cab ride from the airport to the hospital, and also gave me meal vouchers!! she was wonderful!!! Ok...the number for CCF..... 1800 CCF CARE Ron Mac House Just call them....the volenteers at Ron Mac have most of the phone numbers you need!!! any questions?? oh... CCF has a website...do a search..might find a map. cya barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 I don't know about the airport. We drive from IN ( about 5-6 hours, depending on stops) You could check an online travel site or maybe the CC website has that info. Sorry I can't help much! Also, someone ad said there was a hotel close. THe Mc house is within walking distance or they have a free shuttle that runs back and forth and its only $12 a night and you can use the kitchen downstairs and some rooms have refrigerators. They have a great website that tells about it. Jeni Re: Cleveland Clinic > > > > > > > Hi Barb, > > > > > > Hannah has began going to CC for about two yrs. now. That is where > > > her diet was initiated in Jan. We are very happy with things out > > > there. The Keto dietician is fantastic! Dr. Elaine Wyllie is our ped. > > > epileptologist. She is also very good. How far of a drive will you > > > have? How old is Jake and what would he be having done there? Gail--- > > > In ketogenic@y..., " swoyer " <swoyer@m...> wrote: > > > > , to be a pain....please forward to epilepsy-kids.... > > > > > > > > Has anyone been to Cleveland Clinic? Our MassGeneral metabolic > > > specialist has just gone there. We are thinking of taking Jake to > > > see him there, that's what has been recommended. Can anyone give > > > advice or hints to make this an easy trip? > > > > Thanks - > > > > Barb > > > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > > resort! " > > > > > > List is for parent to parent support only. > > > It is important to get medical advice from a > professional > > keto team! > > > Subscribe: ketogenic-subscribe > > > Unsubscribe: ketogenic-unsubscribe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Barb, I'm thinking of you guys. Hope everything goes well on the trip and the metabolic Dr. will be able to find something encouraging. Best wishes Saro swoyer wrote: We would have to fly from Boston. We would be seeing Marvin Natowicz, a highly regarded metabolic specialist who recently went there from Mass General in Boston. Just my luck ( Anyway, he specializes in diagnosing "rare" diseases....and whatever else fits in that category, he's also a pediatric neurologist....had at least an 8 month wait here. I think he also has some specialty in autism. Suspicion on Jake is that epilepsy is the tip of the iceberg, as they like to put it - doctors are stumped and feel there is an underlying, difficult to diagnose and treat, progressive brain disease at work here. Not very encouraging. They want Marvin's opinion before we do a brain biopsy, which is under consideration. Jake will be 6 in November. Flying is not a treat, to say the least. I panic the whole time that he'll have a grand mal. Oh, the things we mothers have to do!!! We are feeling out the logistics to see how do-able the trip is. Barb Swoyer, Jake's mom Quote Link to comment Share on other sites More sharing options...
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