Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Again welcome Lea, Let me see if I can help. Dr Cush's offices are in the Dallas area and while I don't know if they are accepting new patients, I do believe they would refer you to the best available in your area. Next, the most important advise I can give you is to get plenty of rest and free from stress. Calm, quiet, and peace are key in the very worst times of this disease and will help the body believe it is somewhat well. And lastly, I've never found any other forms of therapy or treatments that put this disease into remission other than those prescribed. Some may help a bit but a person must be VERY careful because often over the counter and herbal supplements or other medication combinations can react adversely with the medications given for the treatment of Still's. So you should always have your daughter ask before trying any other forms of treatments especially while on medications that are prescribed by her doctor. I hope this starts to help you with the many questions I'm sure will come up in your journey with this illness. Again welcome and feel free to read to your daughter or bring her to join us any time. _____ My name is Lea and my daughter is 25 and has just been diagnosed with Stills1. Is there anyone in the Dallas area on this site with Stills and who do they see as a doctor. 2. Any special advice as we are beginning this process. 3. Are there any alterative treatments that help in addition to conventional medications. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Lea Welcome not glad you had to look for us but glad you found us. Of your three wants to knows I will address number 2 only but I do know others more versed on the other ones will chime in on them. My suggestion is have your daughter and you and any one she lives with go to concealing as stills is a life changing deal. It can change, work, fun, or many other things in life. Getting that help sooner then later is never a bad idea. I have had stills from 2000 and had to stop working in Sept 2000 and was finally dx in Dec 2000. The concealing is to help all understand changes that can take place. I find it wonderful that you also want to learn about this like my mother did. Now life dose go on and for me is some ways life is better because of stills and also disappointing at the same time because of stills. I wish I would have gone to concealing back then with my then wife and kids. I believe it would have helped them understand the changes better and not only in there own lives but mine also. Not to say this is with all of you but there are some times people that will believe they understand and yet down the line it shows they did not. there is things like work and meds that also need to be understood as in what can be done how far to push your self, how much rest, how to adjust your life to stills and also as with any cronice illness there are the stages that the stills person go's threw and the same for there family's and this is why I say concealing should be on the list. so welcome and ask away as some one will most likly be able to help ya or point you to the help you seek but we also try to have some fun here also the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 , Thank you for your email. I am going to call Dr. Cush today. I had found his name yesterday and discussed this with my daughter. She is happy with her doctor but understands that at this point a second opinion might be wise. I had come across a medication called low dose naltrexone, which seems to be very effective for patients with some auto immune diseases, especially MS and crones. I asked her doctor about it and he looked in to the medication and didn't feel it would help. Have you heard anything about this. LDN is not well known - it is FDA approved but not well tested because it is so inexpensive that pharmaceutical companies won't get there money back to test it. I appreciate your comments on alternative treatments. We are certainly wanting to be very careful but want to keep our eyes open. Thank you for you site. Lea wrote: Again welcome Lea, Let me see if I can help. Dr Cush's offices are in the Dallas area and while I don't know if they are accepting new patients, I do believe they would refer you to the best available in your area. Next, the most important advise I can give you is to get plenty of rest and free from stress. Calm, quiet, and peace are key in the very worst times of this disease and will help the body believe it is somewhat well. And lastly, I've never found any other forms of therapy or treatments that put this disease into remission other than those prescribed. Some may help a bit but a person must be VERY careful because often over the counter and herbal supplements or other medication combinations can react adversely with the medications given for the treatment of Still's. So you should always have your daughter ask before trying any other forms of treatments especially while on medications that are prescribed by her doctor. I hope this starts to help you with the many questions I'm sure will come up in your journey with this illness. Again welcome and feel free to read to your daughter or bring her to join us any time. _____ My name is Lea and my daughter is 25 and has just been diagnosed with Stills1. Is there anyone in the Dallas area on this site with Stills and who do they see as a doctor. 2. Any special advice as we are beginning this process. 3. Are there any alterative treatments that help in addition to conventional medications. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 I have not heard of LDN and would go with what a doctor suggests as there are several tested medications widely used with very good results. The NIH (National Institute of Health) also has trials for newer medications that are being studied and several members of our support groups are on some of the newer medications and can chime in there if they are reading. The first step is as you have said to call the doctor and get a referral and establish a good treating rheumatologist your daughter is comfortable with. I had come across a medication called low dose naltrexone, which seems to be very effective for patients with some auto immune diseases, especially MS and crones. I asked her doctor about it and he looked in to the medication and didn't feel it would help. Have you heard anything about this. LDN is not well known - it is FDA approved but not well tested because it is so inexpensive that pharmaceutical companies won't get there money back to test it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Dear Lea and , , can you be sure Lea gets this? I am in Dallas and I am seeing Dr. Andrés Quiceno, who was a partner of Dr. Cush up until about 6 months ago. They have both gotten different offices. Dr. Quiceno is at Presbyterian Hospital-Dallas 8230 Walnut Hill Ln - Ste. 614 (Bldg.3) Dallas, TX 75231 Tel. I think he is excellent, patient, he takes time with you, and doesn't give up. Regards, Charlotte Karam ckii@... At 10:39 AM 7/16/2008, wrote: >Again welcome Lea, > >Let me see if I can help. Dr Cush's offices are in the Dallas area and while >I don't know if they are accepting new patients, I do believe they would >refer you to the best available in your area. Next, the most important >advise I can give you is to get plenty of rest and free from stress. Calm, >quiet, and peace are key in the very worst times of this disease and will >help the body believe it is somewhat well. And lastly, I've never found any >other forms of therapy or treatments that put this disease into remission >other than those prescribed. Some may help a bit but a person must be VERY >careful because often over the counter and herbal supplements or other >medication combinations can react adversely with the medications given for >the treatment of Still's. So you should always have your daughter ask before >trying any other forms of treatments especially while on medications that >are prescribed by her doctor. > >I hope this starts to help you with the many questions I'm sure will come up >in your journey with this illness. > >Again welcome and feel free to read to your daughter or bring her to join us >any time. > > > >_____ > >My name is Lea and my daughter is 25 and has just been diagnosed with >Stills1. Is there anyone in the Dallas area on this site with Stills and who > >do they see as a doctor. >2. Any special advice as we are beginning this process. >3. Are there any alterative treatments that help in addition to >conventional medications. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi I am sorry you have been so ill. There are many nice people here to help you in many ways. I am hoping you get a quick remission Liz NJ **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2009 Report Share Posted September 7, 2009 Hi , Welcome! You'll get lots of good information and feedback with this group. My daughter is 7 yrs. old and is dx'd mild-moderate autism. Some days she's quirkier than others. She keeps me on my toes, which is a good thing. You are quite right when you say that your daughter is very different from boys on the spectrum. I've always felt that way, too. Again welcome, Karmen New Member Hello, My name is Candeaux. I am a stay-at-home mom to Kailey, almost 5, with Aspergers. I joined this group because I am finding that much of the information, advice, and support in the general ASD groups are aimed toward families with boys. My daughter is so very different from any boy on the spectrum that I have ever met. If it wasn't for my diligence Kailey would never have even been diagnosed as Aspergers because professionals just don't seem to understand how high functioning ASD's present in girls. I am hoping that this will be a better place to get the answers I need in helping my daughter. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 I live in NVA, e.g. make my own cheese, forage and generally try to avoid as many processed foods as possible. My health increased considerably as a result. I hope to find more information on raw dairy available in my area. Regards L Venter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009  What part of Northern Virginia do you live?? My cousin who has a dairy goat farm lives in Orange,VA.. I was born in Fairfax,then later my family moved to Fauquier county....Now I'm in Southern California..Still have lots of friends and family in Virginia..Do you know any Pannill s?LJPS New member I live in NVA, e.g. make my own cheese, forage and generally try to avoid as many processed foods as possible.My health increased considerably as a result.I hope to find more information on raw dairy available in my area.RegardsL Venter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 Prince County. J.Pannill- wrote: >  > > *What part of Northern Virginia do you live??* > *My cousin who has a dairy goat farm lives in Orange,VA..* > *I was born in Fairfax,then later my family moved to Fauquier* > *county....Now I'm in Southern California..Still have lots of friends > and family in Virginia..Do you know any_ Pannill_ s?LJPS* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009  Ah,Manassass,VA?? Re: New member Prince County. J.Pannill- wrote:> > > *What part of Northern Virginia do you live??*> *My cousin who has a dairy goat farm lives in Orange,VA..*> *I was born in Fairfax,then later my family moved to Fauquier*> *county....Now I'm in Southern California..Still have lots of friends > and family in Virginia..Do you know any_ Pannill_ s?LJPS* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 have you contacted the WAPF chapter leaders there?http://www.westonaprice.org/chapters/#nj I did check about a year and a half ago but that is a great idea, I'll send out another email. Hopefully someone will know something. Thanks Katy ____________________________________________________________ Diet HelpCheap Diet Help Tips. Click here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Does freezing hurt even sheeps milk, which is naturally homogenized? =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-Ephesians 1:17 I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. 18 I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, 19 and his incomparably great power for us who believe. That power is like the working of his mighty strength, 20 which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms, 21 far above all rule and authority, power and dominion, and every title that can be given, not only in the present age but also in the one to come. 22 And God placed all things under his feet and appointed him to be head over everything for the church, 23 which is his body, the fullness of him who fills everything in every way.=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- To: RawDairy Sent: Mon, January 4, 2010 11:23:43 AMSubject: Re: new member Freezing DOES hurt raw milk.>> Have you thought about freezing a bunch of it? It doesn't hurt it at all. > thanks for the idea, I do have a freezer already. Wouldn't I have to dump half out so that it wouldn't crack while it's in the freezer? Katy> ____________ _________ _________ _________ _________ _________ _> Love Spell> Click here to light up your life with a love spell!> http://thirdpartyof fers.juno. com/TGL2141/ c?cp=JRDOfq7tgM_ 9JWaLCzb5jwAAJ1B WYMHb7eFlII1lSXs pwfh3AAYAAAAAAAA AAAAAAAAAAADNAAA AAAAAAAAAAAAAAAA ARwAAAAA=> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Thanks for asking. I should have mentioned it before now but I freeze them in rubbermaid containers with screw on green lids with a top that flips up / down. Only one time did I not leave enough (though I thought did) room, and the flip top thing just flipped open and a little ran down the side and froze. Yes, if it were in glass it might have broke, but it wasn't and the lid serves as a pop-off valve with too much pressure. Works very well for me. RiedellTo: RawDairy Sent: Mon, January 4, 2010 2:51:10 PMSubject: Re: Re: new member  , what type of containers do you freeze your milk in? Vickie Freezing may hurt it "some" but look at what this lady is going through to get milk. a SIX hour drive. Yeah , I think freezing it in this circumstance is totally acceptable. Normally, I wouldn't freeze milk just for the heck of it, but in her situation, I would not hesitate to freeze milk. Still a million times better than going to the grocery store 20 minutes away and buying pastuerized milk. Katy, yes, you need to leave room for expansion in your containers when you put them in the freezer. Just a few inches or so in your container, that's all. When I have frozen my milk, it does expand , it still taste just as good as if fresh. Just like picking greenbeans out of your garden. Are they good for you freshly picked and eaten right away. Certainly. But don't you want to freeze those same greenbeans for later in the year/winter. Yes, does it loose some healthy advantages, yes, but not enough to where I just wouldn't do it at all. You have to look at the WHOLE picture and I will stand by my opinion and it's worth in your case , to freeze your milk. Have a good day. From: livepsalm1 <livepsalm1yahoo (DOT) com>To: RawDairy@yahoogroup s.comSent: Mon, January 4, 2010 11:23:43 AMSubject: Re: new member Freezing DOES hurt raw milk.>> Have you thought about freezing a bunch of it? It doesn't hurt it at all. > thanks for the idea, I do have a freezer already. Wouldn't I have to dump half out so that it wouldn't crack while it's in the freezer? Katy> ____________ _________ _________ _________ _________ _________ _> Love Spell> Click here to light up your life with a love spell!> http://thirdpartyof fers.juno. com/TGL2141/ c?cp=JRDOfq7tgM_ 9JWaLCzb5jwAAJ1B WYMHb7eFlII1lSXs pwfh3AAYAAAAAAAA AAAAAAAAAAADNAAA AAAAAAAAAAAAAAAA ARwAAAAA=> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010  Thank you , that sounds like a good idea to me!!! Vickie Thanks for asking. I should have mentioned it before now but I freeze them in rubbermaid containers with screw on green lids with a top that flips up / down. Only one time did I not leave enough (though I thought did) room, and the flip top thing just flipped open and a little ran down the side and froze. Yes, if it were in glass it might have broke, but it wasn't and the lid serves as a pop-off valve with too much pressure. Works very well for me. Riedell From: Vickie <cvosbornckt (DOT) net>To: RawDairy Sent: Mon, January 4, 2010 2:51:10 PMSubject: Re: Re: new member  , what type of containers do you freeze your milk in? Vickie Freezing may hurt it "some" but look at what this lady is going through to get milk. a SIX hour drive. Yeah , I think freezing it in this circumstance is totally acceptable. Normally, I wouldn't freeze milk just for the heck of it, but in her situation, I would not hesitate to freeze milk. Still a million times better than going to the grocery store 20 minutes away and buying pastuerized milk. Katy, yes, you need to leave room for expansion in your containers when you put them in the freezer. Just a few inches or so in your container, that's all. When I have frozen my milk, it does expand , it still taste just as good as if fresh. Just like picking greenbeans out of your garden. Are they good for you freshly picked and eaten right away. Certainly. But don't you want to freeze those same greenbeans for later in the year/winter. Yes, does it loose some healthy advantages, yes, but not enough to where I just wouldn't do it at all. You have to look at the WHOLE picture and I will stand by my opinion and it's worth in your case , to freeze your milk. Have a good day. From: livepsalm1 <livepsalm1yahoo (DOT) com>To: RawDairy@yahoogroup s.comSent: Mon, January 4, 2010 11:23:43 AMSubject: Re: new member Freezing DOES hurt raw milk.>> Have you thought about freezing a bunch of it? It doesn't hurt it at all. > thanks for the idea, I do have a freezer already. Wouldn't I have to dump half out so that it wouldn't crack while it's in the freezer? Katy> ____________ _________ _________ _________ _________ _________ _> Love Spell> Click here to light up your life with a love spell!> http://thirdpartyof fers.juno. com/TGL2141/ c?cp=JRDOfq7tgM_ 9JWaLCzb5jwAAJ1B WYMHb7eFlII1lSXs pwfh3AAYAAAAAAAA AAAAAAAAAAADNAAA AAAAAAAAAAAAAAAA ARwAAAAA=> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 if they don't respond by email, call them on the phone. they are volunteers. > > have you contacted the WAPF chapter leaders there? > http://www.westonaprice.org/chapters/#nj > > I did check about a year and a half ago but that is a great idea, I'll send out another email. Hopefully someone will know something. Thanks Katy > > ____________________________________________________________ > Diet Help > Cheap Diet Help Tips. Click here. > http://thirdpartyoffers.juno.com/TGL2141/c?cp=kvU2azeSHCcb7jZrSXh4mAAAJ1BWYMHb7e\ FlII1lSXspwfh3AAYAAAAAAAAAAAAAAAAAAADNAAAAAAAAAAAAAAAAAAAYQAAAAAA= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 kudzusue@... wrote: > > > Hi! I'm nah in Georgia. > My friend Pat told me about this group. I'm about to get a milk cow! > Actually, another family will be co-owners for a while. We are organic > farmers, so this is an extention of our lifestyle. I'm a newbie, but the > cow has been hand-milked, is friendly, is already bred back, and will be > delivered in about a week. Help! > > __._, > Welcome nah! You will be just fine with this group, and your friendly neighbors in Beech Island. Congrats on your new cow! > ~Pat in Beech Island SC > Quote Link to comment Share on other sites More sharing options...
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