Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 - I am interested to hear how angel flights works for you and if we can pair up for any flights hm I seem to ge getting to the emails in the wrong order - I am still flying in/out of arizona - the treatment and flights out of pocket - is it 1 flight or 2 flights (ie change of planes twice to get to arizona and then same again another 2 planes to get back - r you the lady with kaiser as well? > > I want to thank everyone for the advice I was given. We contacted > Angel Flights and it looks like it will pull through for us. So we > will now have transporation to and from Phoenix. My insurance got back > with us and they will cover most of it provided the measurments are > more than 6mm (I'm not exactly sure how the measurments are taken). > This group is a wonderful thing and the support is amazing. Thank you > all for your help. first appointment for his DOC Band will be on > June 12. and Evan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 congratulations.....im so glad all the pieces are falling in place for you!! its nice to hear. marybeth > > I want to thank everyone for the advice I was given. We contacted > Angel Flights and it looks like it will pull through for us. So we > will now have transporation to and from Phoenix. My insurance got back > with us and they will cover most of it provided the measurments are > more than 6mm (I'm not exactly sure how the measurments are taken). > This group is a wonderful thing and the support is amazing. Thank you > all for your help. first appointment for his DOC Band will be on > June 12. and Evan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I am glad everything is working out for you. Please keep us posted. Angie and Jenna(STAR grad) Thank you >I want to thank everyone for the advice I was given. We contacted > Angel Flights and it looks like it will pull through for us. So we > will now have transporation to and from Phoenix. My insurance got back > with us and they will cover most of it provided the measurments are > more than 6mm (I'm not exactly sure how the measurments are taken). > This group is a wonderful thing and the support is amazing. Thank you > all for your help. first appointment for his DOC Band will be on > June 12. and Evan > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I will let you know more as I find out. I think it is a single plane with a personal pilot who just volunteers their time. They said that there are no limits to the number of flights that we can get. This whole thing must be a miracle. I still have to fill out a bunch of paperwork but I haven't received it yet. As for insurance, I don't have Kaiser, I have Aetna. I'll get back to you as I learn more. THanks - > > > > I want to thank everyone for the advice I was given. We contacted > > Angel Flights and it looks like it will pull through for us. So we > > will now have transporation to and from Phoenix. My insurance got > back > > with us and they will cover most of it provided the measurments are > > more than 6mm (I'm not exactly sure how the measurments are taken). > > This group is a wonderful thing and the support is amazing. Thank > you > > all for your help. first appointment for his DOC Band will be > on > > June 12. and Evan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 - So glad you're getting things worked out! I hope the travel goes well for you. You'll love the people in the CT Phoenix office. Good luck! Tammy > > I want to thank everyone for the advice I was given. We contacted > Angel Flights and it looks like it will pull through for us. So we > will now have transporation to and from Phoenix. My insurance got back > with us and they will cover most of it provided the measurments are > more than 6mm (I'm not exactly sure how the measurments are taken). > This group is a wonderful thing and the support is amazing. Thank you > all for your help. first appointment for his DOC Band will be on > June 12. and Evan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Hi - thanks for prompt reply most interested re this especially as it effects my hip pocket. again if you want to see the helmet (doc) just email me you can see it in action on my son's head and how much it does not bother him in the least. julie. > > > > > > I want to thank everyone for the advice I was given. We > contacted > > > Angel Flights and it looks like it will pull through for us. So > we > > > will now have transporation to and from Phoenix. My insurance > got > > back > > > with us and they will cover most of it provided the measurments > are > > > more than 6mm (I'm not exactly sure how the measurments are > taken). > > > This group is a wonderful thing and the support is amazing. > Thank > > you > > > all for your help. first appointment for his DOC Band will > be > > on > > > June 12. and Evan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Theresa... Glad to hear how well Jake did and what you will be doing to help our AS kids in the future with assistance dogs...keep us posted. You are in my thoughts and prayers as you grieve...I am sorry for your loss. It has been six months since my dh died suddenly and sometimes it seems as though it didn't really happen ;-( Hugs to you {{{{{{{{{Theresa}}}}}}}} Blessings, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 > > Thank you Dana and to everyone who answered my questions. It has been a > really big help. I am now the proud owner of an additional 8 > supplements and hope for a more normal upcoming week. Don't add them all at the same time! One at a time is usually best. Good luck. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 >>Would it be > o.k. for me to go ahead with virastop as long as I have candidase or candex > in place? Or do I need to get the probiotics in place first? My son never really tolerated probiotics. He did for maybe a month, very far along into his recovery. So in my opinion, probiotics are optional. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 don't kick yourself! 4 mo is a great age if she does need a band. At this age you can also repo, but honestly the band is less work and with 2 special needs kids that might be the way to go. We got in to see the specialist quickly. You might be lucky too. -christine sydney 19 mo starband grad > > Thank you all for your responses. Melody will be seeing her primary > care doctor on Tuesday and hopefully we will be getting the referal > that we need. I am just concerned about getting an appointment with a > specialist in a timely manner. I know sometimes new patient apps. can > take several months! I am also kicking myself in the butt about not > doing sometihing sooner. We started noticeing Melody's head shape about > 2 months ago. After having 2 children with special needs I just kept > thinking to myself surely nothing could be wrong. I will update as soon > as I know more. Thank you all again! > > Voni, Mommy to: Jr. (7) Legg-Calve-Perthes > Tyler (6) Mild CP > Melody (4 Months) Possible Plagio > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 Depending on who you are going with, you can sometimes bypass a neurosurgeon or cranial facial specialist and go straight to the band. We went to Cranial Technologies and had them fax our ped. our son's measurements. Then I called our ped. that same day and told them they would be getting a fax from CT and that we really want to band. Our ped. sent the prescription that same day! We got casted within that same week or the beginning of the following (don't remember which) and we got the band exactly 2 weeks later. So for us the wait wasn't that bad. Good luck with your journey. PS: If all Melody has is plagio and no tort, then the band will correct the plagio. If she has tort, then you probably would want to do PT for that and at home stretches. In the scheme of things, plagio is no big deal (especially when caught early like Melody's was). Try not to kick yourself...it will all work out. > > Thank you all for your responses. Melody will be seeing her primary > care doctor on Tuesday and hopefully we will be getting the referal > that we need. I am just concerned about getting an appointment with a > specialist in a timely manner. I know sometimes new patient apps. can > take several months! I am also kicking myself in the butt about not > doing sometihing sooner. We started noticeing Melody's head shape about > 2 months ago. After having 2 children with special needs I just kept > thinking to myself surely nothing could be wrong. I will update as soon > as I know more. Thank you all again! > > Voni, Mommy to: Jr. (7) Legg-Calve-Perthes > Tyler (6) Mild CP > Melody (4 Months) Possible Plagio > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 One thing for us: research. I had a good isea of why I should try GFCF before I did. It is a pain but I had good reason to do it and that kept me going and ultimately lead to more research of other beneficial intrerventions. wrote: > I just want to tell everyone here who shares, advises, or simply vents > that I appreciate every single one of you. Before becoming a part of > this thread, I had no idea of all the issues surrounding apraxia and > other developmental disorders, and especially how they relate to one > another or to enviromental factors everyday. My son who has just > recently been diagnosised with a mild apraxia is now in therapy, we're > on fish oil, and I'm contemplating GFCF diet. I also have a one year > old and I know he'll benefit from everything I learn here! > > One question for anyone who might relate or could advise, if you could > select one thing you do for your child that makes the most difference > in verbalizing (fish oils, therapy, diets, etc.,) what would it be? > With so many things to try sometimes it can be hard to pinpoint what is > really working for others? > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Wish I could be of more help to you. I only do the fish oils so far but I am thinking about GFCF. Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 The one thing I would do if I were just beginning would be to focus completely on the ears, congestion, swallowing and saliva. EARS must be a top priority. Targeting the ears is important..... so my number one thing for ears is.... again.... elimination of milk. I did the fish oil for many months a long time ago (4 or 5 years ago...) with zero results. Why? We were still on casien, my child was full of saliva and the fish oil couldn't combat it. We removed the milk and 'TA DAAAA!', everything..... all the therapies began to work! None of it had done much for over 9 years but after removing the milk, everything started getting a lot better and therapy became successful on a continuous basis. Janice [sPAM] Re: [ ] Thank You One thing for us: research. I had a good isea of why I should try GFCF before I did. It is a pain but I had good reason to do it and that kept me going and ultimately lead to more research of other beneficial intrerventions. wrote: > I just want to tell everyone here who shares, advises, or simply vents > that I appreciate every single one of you. Before becoming a part of > this thread, I had no idea of all the issues surrounding apraxia and > other developmental disorders, and especially how they relate to one > another or to enviromental factors everyday. My son who has just > recently been diagnosised with a mild apraxia is now in therapy, we're > on fish oil, and I'm contemplating GFCF diet. I also have a one year > old and I know he'll benefit from everything I learn here! > > One question for anyone who might relate or could advise, if you could > select one thing you do for your child that makes the most difference > in verbalizing (fish oils, therapy, diets, etc.,) what would it be? > With so many things to try sometimes it can be hard to pinpoint what is > really working for others? > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2007 Report Share Posted November 14, 2007 Steve Welcome and Thanks. Steve Crabtree <crabtrees1@...> wrote: Thankfully, I found the Hypogonadism website I am still learning about my condition and certainly everyone experience will benefit me greatly. Thanks very much for being there. As I study I will have more questions and will post them later. Regards crabtrees1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2007 Report Share Posted November 14, 2007 I posted a comment about metabolizing estrogen where I cite a good book to read. Many of us here in the forum make reference to it. Steve Crabtree <crabtrees1@...> wrote: Thankfully, I found the Hypogonadism website I am still learning about my condition and certainly everyone experience will benefit me greatly. Thanks very much for being there. As I study I will have more questions and will post them later. Regards crabtrees1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 I agree all the moms of graduates that stay on this board to help the new moms are wonderful. I am a mom of a grad and was fortunate enough to band at 4 months but know it would have been so much more difficult to band later. Keep your heads up and do what you can to help your children. We all love our kids and that is one thing I see for sure! And to all the graduate parents- we need to keep posting if we can add to the discussions and help all the newbie moms and dads. Enjoy the weekend. Tammy From: Robben <katierobben@...>Subject: Thank youPlagiocephaly Date: Saturday, March 15, 2008, 2:35 AM I was just thinking the same thing and would like tosecond that. Thank you, ! Everytime I readyour posts I am so impressed with your attituderegarding banding late. I have a nearly 9 month oldson with severe brachy and we are currently in theprocess of getting him banded (getting fitted in 11days). I have just been a mess about this wholething. It feels like I am the only one out there thateven knows what plagio/brachy is, but it is so nice tohear other moms that have gone through this wholeexperience and have good things to say. I am sojealous of the moms that were able to band at 4 or 5months. I know that 9 months is not too old, but Istill regret not doing something sooner. I wasanother victim of listening to my doctor, and everyoneelse I know, tell me that it will round out on itsown. In fact, my mother-in-law thinks I am ahypochondriac and am crazy for even consideringbanding my son, but that is a whole other topic. Thanks again for all of the support.Cincinnati, OH , 9 months- severe brachy> Hi ,> Just wanted to write to you as I see how much> encouragement you give > to other moms on this board and wanted to let you> know that I was > another mom that banded her son late. My son started> his Doc Band at > the age of 14 months and graduated at 18months. ( I> wish he could > have worn it longer but due to the life span of 4mo> of the Doc Band > he only wore it this amount of time. He actually> wore an ill-fitting > Hanger Band from the age of 5mo-10mo (long story)> and then I listened > to his dr who said nothing else could be done at> that point due to > his age. Decided on my own apx when he was 12 months> to go on my own > to C.T. Then demanded a rx so that he could wear the> Doc Band. Even > tho I banded late as well he did receive moderate> improvement, of > course not 100%, (partially my fault since I should> have went with my > gut and went w/C.T. from the get go) but def.> improvement. My son is > now 2 years old (just turned 2 on 3/1) and has been> out of his band > for 6 months and even tho little I have seen a> little bit post > rounding. I do not scrutizize his head as much as I> did when he first > graduated and only notice his flat spot in the bath> when his head is > wet and completely matted down. IMO I really dont> think it will be > noticeable when he is older. His before and after> pics are posted > under C.J. Photo Study (C photos) in case your> interested in seeing > them. Just wanted to give you some encouragement> from one late > banding mom to another!!> > Best of luck 2 you!> - Mom to CJ (2 years old, 3/1)> Doc Band Graduate, 9/2007 > > > > > >> > > I've had a very tough day. I visited the> specialist at Hanger > > today, who said that my daughter > > > 's assemetry was 15 mm. The Hanger> specialist didn't want to > > say severe or moderate, > > > just that she would qualify for a helmet. As> I've been visiting > > the site, someone said that > > > 15+mm was considered severe. However, before> this appointment, > > when I went to see the > > > referring physician, he acted like she was a> non-issue and he > said > > she was considered a mild > > > case. Being someone that is wishy-washy, I am> completely torn > > about what to do. I don't > > > know whether to hold more weight to an actual> physician, or a > > helmet specialist. Who's > > > evaluation do I put more weight on? I feel like> I'm getting > > conflicting information and it's very > > > frustrating! Is there anyone out there who did> not band their > > child and then regretted it, or > > > felt the decision was ok? I worry about little> things, like her > > being able to wear a ponytail in > > > her hair and not feel awkward about it. I just> want to make the > > best decision for her now, and > > > don't know how big of an impact it will be on> her later. Thanks > > for letting me vent.> > >> >> > > ____________ _________ _________ _________ _________ _________ _Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Thank you all! I must have been having a bad day yesterday and reading your posts have made me feel a lot better. I'm glad to help in any way I can. And I'm still going through this process, so continued advice from all the graduates is very much appreciated too. Thanks again! > > > > > > > > I've had a very tough day. I visited the > > specialist at Hanger > > > today, who said that my daughter > > > > 's assemetry was 15 mm. The Hanger > > specialist didn't want to > > > say severe or moderate, > > > > just that she would qualify for a helmet. As > > I've been visiting > > > the site, someone said that > > > > 15+mm was considered severe. However, before > > this appointment, > > > when I went to see the > > > > referring physician, he acted like she was a > > non-issue and he > > said > > > she was considered a mild > > > > case. Being someone that is wishy-washy, I am > > completely torn > > > about what to do. I don't > > > > know whether to hold more weight to an actual > > physician, or a > > > helmet specialist. Who's > > > > evaluation do I put more weight on? I feel like > > I'm getting > > > conflicting information and it's very > > > > frustrating! Is there anyone out there who did > > not band their > > > child and then regretted it, or > > > > felt the decision was ok? I worry about little > > things, like her > > > being able to wear a ponytail in > > > > her hair and not feel awkward about it. I just > > want to make the > > > best decision for her now, and > > > > don't know how big of an impact it will be on > > her later. Thanks > > > for letting me vent. > > > > > > > > > > > > > > > > > _____________________________________________________________________ _______________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 I just posted 3 photos of the little guy I talk so much about! (Showcasing his two paint jobs to date). He and his sister bring me such joy, my heart literally bursts. I'm sure you all can relate! Thanks again for the support! Jake-18m (tort resolved/rt plagio/DocBand 2/11/08) Jordan-4 > > > > > > > > > > I've had a very tough day. I visited the > > > specialist at Hanger > > > > today, who said that my daughter > > > > > 's assemetry was 15 mm. The Hanger > > > specialist didn't want to > > > > say severe or moderate, > > > > > just that she would qualify for a helmet. As > > > I've been visiting > > > > the site, someone said that > > > > > 15+mm was considered severe. However, before > > > this appointment, > > > > when I went to see the > > > > > referring physician, he acted like she was a > > > non-issue and he > > > said > > > > she was considered a mild > > > > > case. Being someone that is wishy-washy, I am > > > completely torn > > > > about what to do. I don't > > > > > know whether to hold more weight to an actual > > > physician, or a > > > > helmet specialist. Who's > > > > > evaluation do I put more weight on? I feel like > > > I'm getting > > > > conflicting information and it's very > > > > > frustrating! Is there anyone out there who did > > > not band their > > > > child and then regretted it, or > > > > > felt the decision was ok? I worry about little > > > things, like her > > > > being able to wear a ponytail in > > > > > her hair and not feel awkward about it. I just > > > want to make the > > > > best decision for her now, and > > > > > don't know how big of an impact it will be on > > > her later. Thanks > > > > for letting me vent. > > > > > > > > > > > > > > > > > > > > > > > > > > > _____________________________________________________________________ > _______________ > > Be a better friend, newshound, and > > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Good Lord, sweetie...you've been through hell and back! I don't know that much about Crohns, so I'll leave the advice to those that do, but you'll be in my thoughts. I do know that Penn State University is in Phase II clinical trials of LDN for Crohns and as far as I know, results are looking very promising for LDN's treatment of Crohns. If you go to the LDN information site, you can find out all kinds of stuff about LDN and I think about it's treatment of Crohns as well. www.losedosenaltrexone.org Take care of you and hang in there. Things will be better soon. > > Thank you to all who offered info, it was greatly appreciated. Ive > never really had any medical problems until 2 years ago i had a > hysterectomy and 2 days after coming home i got very sick couldnt > keep anything down not even water, was in hospital almost 2 months > most of it in icu, had 3 stomach surgeries in 2 weeks, had tube down > my throat drawing out infection and many more things hooked up to me, > i almost died and they had me on life support, had to do dialysis and > they took part of my colon and small bowel because my small bowel had > torn in surgery, took me 6 months to recover from that, since then i > have been fine until 6 months ago i started having stomach pain and > id go to the hospital they would keep me 3 days and send me home with > antiobiotics, this went on for 4 months, then finally an er doctor > finally ran tests and such and found out i had crohns, i was in > hospital for 10 days with nothing to eat or drink only fluids they > had me hooked up to, they said i had a vaginal fistula (which had > been draining 3 months and very painful) and a small bowel > obstruction, but after 9 days they did a small bowel follow through > and said both had healed, i have been out of the hospital 4 days now, > i am feeling okay and have been searching the net for any and all > info i can find, i had heard of crohns but didnt know anything about > it, i have a dr appointment on monday and am writing questions to > ask, i am a strong person and have beaten many things in life but > this is really scary for me because i have lost so much weight (i was > 115 pds,now 96), i have bought different foods and gotton some boost > to help put on weight, but am only able to eat a little thru out the > day, i think because of the long hospital stay and my legs get real > tired if i do too much. does anyone know if some medicines for crohns > are not good for someone who has had a hysterectomy? I am lactose > intolerant i found too, dairy products dont get along with my > stomach, any ideas on that, i love my dairy. are there any foods in > particular that i should stay away from? my sisters friend has a son > with celiac disease and she buys him gluten free products and she has > gotton some for me, some of it is okay but the bread is really dry, i > can only eat it if its toasted. any help is greatly appreciated, and > again i thank everyone and appreciate all the info. > kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Yahell strikes again! Why does it do that to hyperlinks? Let's see if this one will come out right: www.low dose naltrexone.org > > > > Thank you to all who offered info, it was greatly appreciated. Ive > > never really had any medical problems until 2 years ago i had a > > hysterectomy and 2 days after coming home i got very sick couldnt > > keep anything down not even water, was in hospital almost 2 months > > most of it in icu, had 3 stomach surgeries in 2 weeks, had tube > down > > my throat drawing out infection and many more things hooked up to > me, > > i almost died and they had me on life support, had to do dialysis > and > > they took part of my colon and small bowel because my small bowel > had > > torn in surgery, took me 6 months to recover from that, since then > i > > have been fine until 6 months ago i started having stomach pain and > > id go to the hospital they would keep me 3 days and send me home > with > > antiobiotics, this went on for 4 months, then finally an er doctor > > finally ran tests and such and found out i had crohns, i was in > > hospital for 10 days with nothing to eat or drink only fluids they > > had me hooked up to, they said i had a vaginal fistula (which had > > been draining 3 months and very painful) and a small bowel > > obstruction, but after 9 days they did a small bowel follow through > > and said both had healed, i have been out of the hospital 4 days > now, > > i am feeling okay and have been searching the net for any and all > > info i can find, i had heard of crohns but didnt know anything > about > > it, i have a dr appointment on monday and am writing questions to > > ask, i am a strong person and have beaten many things in life but > > this is really scary for me because i have lost so much weight (i > was > > 115 pds,now 96), i have bought different foods and gotton some > boost > > to help put on weight, but am only able to eat a little thru out > the > > day, i think because of the long hospital stay and my legs get real > > tired if i do too much. does anyone know if some medicines for > crohns > > are not good for someone who has had a hysterectomy? I am lactose > > intolerant i found too, dairy products dont get along with my > > stomach, any ideas on that, i love my dairy. are there any foods in > > particular that i should stay away from? my sisters friend has a > son > > with celiac disease and she buys him gluten free products and she > has > > gotton some for me, some of it is okay but the bread is really dry, > i > > can only eat it if its toasted. any help is greatly appreciated, > and > > again i thank everyone and appreciate all the info. > > kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 It needs the http:// in front. http://www.low dose naltrexone.org/ > > > > > > Thank you to all who offered info, it was greatly appreciated. > Ive > > > never really had any medical problems until 2 years ago i had a > > > hysterectomy and 2 days after coming home i got very sick couldnt > > > keep anything down not even water, was in hospital almost 2 > months > > > most of it in icu, had 3 stomach surgeries in 2 weeks, had tube > > down > > > my throat drawing out infection and many more things hooked up to > > me, > > > i almost died and they had me on life support, had to do dialysis > > and > > > they took part of my colon and small bowel because my small bowel > > had > > > torn in surgery, took me 6 months to recover from that, since > then > > i > > > have been fine until 6 months ago i started having stomach pain > and > > > id go to the hospital they would keep me 3 days and send me home > > with > > > antiobiotics, this went on for 4 months, then finally an er > doctor > > > finally ran tests and such and found out i had crohns, i was in > > > hospital for 10 days with nothing to eat or drink only fluids > they > > > had me hooked up to, they said i had a vaginal fistula (which > had > > > been draining 3 months and very painful) and a small bowel > > > obstruction, but after 9 days they did a small bowel follow > through > > > and said both had healed, i have been out of the hospital 4 days > > now, > > > i am feeling okay and have been searching the net for any and all > > > info i can find, i had heard of crohns but didnt know anything > > about > > > it, i have a dr appointment on monday and am writing questions to > > > ask, i am a strong person and have beaten many things in life but > > > this is really scary for me because i have lost so much weight (i > > was > > > 115 pds,now 96), i have bought different foods and gotton some > > boost > > > to help put on weight, but am only able to eat a little thru out > > the > > > day, i think because of the long hospital stay and my legs get > real > > > tired if i do too much. does anyone know if some medicines for > > crohns > > > are not good for someone who has had a hysterectomy? I am lactose > > > intolerant i found too, dairy products dont get along with my > > > stomach, any ideas on that, i love my dairy. are there any foods > in > > > particular that i should stay away from? my sisters friend has a > > son > > > with celiac disease and she buys him gluten free products and she > > has > > > gotton some for me, some of it is okay but the bread is really > dry, > > i > > > can only eat it if its toasted. any help is greatly appreciated, > > and > > > again i thank everyone and appreciate all the info. > > > kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Hi and welcome to our group, gothica:) (what a dramatic hospital visit you've experienced! Ouch!) I have Crohns. I use LDN. It's the best idea I've ever got in my entire life when researching it. I got my diagnose last year. They put me on prednisone. While tapering off of it, my disease returned, and I got worse than before. Started LDN in sept.07. Diets: try www.scdinfo.org by Elaine Gottschalls book at www.amazon.com and learn how to make the important SCD yogurt, which you'll find recipes on at www.scdinfo.org A lot of Crohnies are lactose intolerant. Due to the MAP bacteria (I am sure you have heard of it): Many doctors now believe Crohn's to be caused by a genetic inability to fight off a MAP infection. Go off diary except for SCD legal home made yogurt. (If you allow yourself to eat dairy, you allow for MAP re-infection.) Follow the SCD or Maker's Diet. These diets starve the bad bacteria (MAP) and re-populate the good bacteria. Don't use dangerous medications with low remission rates. Try LDN before the dangerous drugs!!! Avoid sugar, gluten (from wheat flour), avoid casein a protein from milk and all milk products. We know that people with IBD, inflamated bowel disease, often is not directly having celiac disease, but we are often sensitive to gluten. A new research in Karolinska Sjukhuset in Stockholm, Sweden shows that this is the case. So if we are sensitive to gluten, we have to avoid wheat flour. And all the flour with gluten. Avoid all that irritate your intestines. Have a note book to write down all you react to. For us Crohnies it's not easy to find out either. But there are some common rules. Milk, sugar and grains, seeds. Peel all your fruits. Avoid vegetables with long fibers. Eat: overly cooked vegetables, fruits (use the blender and make good fruit and berry juices). Avoid red meat. Use poultries. Please ask me also in private mails if there is something you need to know, with all the best from Ingrid :-) [low dose naltrexone] thank youThank you to all who offered info, it was greatly appreciated. Ive never really had any medical problems until 2 years ago i had a hysterectomy and 2 days after coming home i got very sick couldnt keep anything down not even water, was in hospital almost 2 months most of it in icu, had 3 stomach surgeries in 2 weeks, had tube down my throat drawing out infection and many more things hooked up to me, i almost died and they had me on life support, had to do dialysis and they took part of my colon and small bowel because my small bowel had torn in surgery, took me 6 months to recover from that, since then i have been fine until 6 months ago i started having stomach pain and id go to the hospital they would keep me 3 days and send me home with antiobiotics, this went on for 4 months, then finally an er doctor finally ran tests and such and found out i had crohns, i was in hospital for 10 days with nothing to eat or drink only fluids they had me hooked up to, they said i had a vaginal fistula (which had been draining 3 months and very painful) and a small bowel obstruction, but after 9 days they did a small bowel follow through and said both had healed, i have been out of the hospital 4 days now, i am feeling okay and have been searching the net for any and all info i can find, i had heard of crohns but didnt know anything about it, i have a dr appointment on monday and am writing questions to ask, i am a strong person and have beaten many things in life but this is really scary for me because i have lost so much weight (i was 115 pds,now 96), i have bought different foods and gotton some boost to help put on weight, but am only able to eat a little thru out the day, i think because of the long hospital stay and my legs get real tired if i do too much. does anyone know if some medicines for crohns are not good for someone who has had a hysterectomy? I am lactose intolerant i found too, dairy products dont get along with my stomach, any ideas on that, i love my dairy. are there any foods in particular that i should stay away from? my sisters friend has a son with celiac disease and she buys him gluten free products and she has gotton some for me, some of it is okay but the bread is really dry, i can only eat it if its toasted. any help is greatly appreciated, and again i thank everyone and appreciate all the info.kim------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Deanna, I agree this group is very helpful. It very difficult to find a good match with a doctor. Grand Rapids may have better choices. It appears that GR has an abundance of good doctors. I had to go there for an ortho who could handle the foot surgery I needed. It was worth the three hour drive. (Does Flint have anyone?) Good luck and stay strong. -Eileen in Charlevoix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Deanna -- Can you get to someone in Lansing, or Ann Arbor?? I know that there was a time that PA was dumped in with RA as a subset of RA, until they finally realized that PA is not a subset of RA and that they are two independent disease processes. My partner has RA and I think that he would agree that I seem to endure more pain with PA than he does with RA. I can really identify with your comment of the doctors. I awoke from a coma 3 yrs ago and nearly screamed as the sheet brushed across the tips of my toes on my right foot. It hurt my foot so incredibly bad. They kept assuring me there was nothing wrong with my foot. I finally got stubborn and demanded an xray before they cont'd PT. Well, the xray did not show any actual fracture, so naturally, there was nothing wrong and I was simply a whiner. It's now been 3 yrs. In the interim, they have talked frequently of fusion, but not convinced it's that bad. I cannot walk on it. I have not been able to walk on it for 3 yrs. I no longer drive, walk, hike, etc. I use a cart in groc stores. I use a crutch and my balance was so bad that I remained in a walker much longer than anyone thought I would. Finally, they took xrays again before I went south last June. The mid-foot joints are shot. Each doctor (3) that looked at the x-rays in my presence gasped as they put the x-rays up to the light, before they ever said a word to me. The orthopedics comment was that I " have an aggressive form of psoriatic arthritis " ...my mid-foot joints are bone on bone and completely eroded to the point of requiring fusion. It is still a mess. I have worn a boot all summer, after it was intended to be no more than 6 weeks, and if successful, grounds for fusion. Instead, now they are modifying my shoes to match the rounded boot bottom, to see if it is possible that it might provide me with sufficient support so that I can start walking again. Instead of 6 wks, I have had to wear the boot all summer. I know from the walking that I have done with the boot, that I can walk in the boot for no more than 2 hours before it requires rest and elevation. I am already hungry for more, although that is a vast improvement over what it has been for the past three years. Trust me!! The PA does and will do damage. You can look at the Natl Psoriasis Foundation, the Mayo Clinic and other websites that show photos of the damage PA does to the joints. I was on Methotrexate to begin with -- you are at least on this, aren't you?? I was on Enbrel -- at higher doses -- until July 2005, when they took me off all my meds in an effort to save my kidneys. I am now on Remicade, which I am having much better results with. I still take MTX. Good luck! Write any time. Cheryl M. (now in AK.) Quote Link to comment Share on other sites More sharing options...
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