Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Hi Leah, My name is le. Welcome to the CHARGE list. My youngest son has CHARGE. Caleb is going to be 2 in June. Unfortunately, I don't have any advice to give you since my son has different CHARGE features from your little Sydney. I know that many here will be able to help you. It's true, all our kids are similar in ways and yet so different in others. We've all become experts in our children's health problems, and everyone is happy to help answer your questions. Someday, it will be you who will be able to answer another new parent's questions. Good luck, and stay strong. We're all here to support you. le Mom to Caleb 21month old CHARGEr, and 3 yrs. Ontario, Canada lemerri@... wrote: > Hi everyone! > My name is Leah and I have a 4 month old daughter with Charge. She spent > the first 3 months of her life in the NICU, then was put back in the hospital > for a virus after only two weeks at home. Now we are home again and ready > to embark in this crazy world of medicine and therapy!!! " Sydney, " our > little fighter was diagnosed with CHARGE at 10 days old. She has bilateral > retinal colobomas involving the optic nerve(YUK), hearing loss, facial > palsy(rt side), swallowing dysfunction, and cranial nerve problems. Sydney > also has a mickey button, a trach,and had a bilateral choanal > atresia(repaired). She has had 6 surgeries and came thru everyone like a > true fighter. > I have been reading several of the emails and found several questions > that I hope someone out there will be able to help with. Sydney is on robinul > to control her secretions (which are horrible) is there a better med. that > will not dry her out so much. Having a trach I have to be careful about her > plugging off but without the robinul they are afraid she will aspirate. > I read somewhere about others having problems with retching, she is > terrible! sometimes I am afraid she will bust her Nissen its so bad. If > anyone has a reasoning behind this please let me know. > Sydney seems to have alot of drainage from her eyes, in the morning > sometimes, they are matted completely shut. Is this a charge thing or an > infection or clogging thing. > I continually read that every child with this syndrome is different but > it seems there are also alot of similarities. Can anyone tell me what kind > of life these children lead for the majority? In reading some of these > emails it seems that they are very bright individuals that have several > hurdles to jump! I know Sydney plays and acts like a typical 4mnth old > despite the vision and hearing impairments. > I am so glad that the chargelist is available, its such a relief to know > you have others to help. > Any comments suggestions or stories are welcomed!!! > > LOOK FORWARD TO TALKING TO EVERYONE > > Leah and Adam, parents to Trevan (4)and Sydney (4mnths w/ CHARGE.) > > > ------------------------------------------------------------------------ > Get your money connected @ OnMoney.com - the first Web site that lets > you see and manage all of your finances all in one place. > http://click./1/3012/1/_/22564/_/955429938/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Leah, Your story is almost identical to ours. We have a daughter, Aubrey, who is now almost 18 months old. Her secretions have always been horrendous. We used robinul for awhile, but eventually had to have surgery to tie off and remove some of her secretion glands. We have had some luck with over the counter stuff like benedryl to help with the secretions. The retching for Aubrey was terrible in the beginning. She ended up having to have a second nissen because her first one slipped due to so much retching. However, I can tell you that she no longer has much of a problem with it. I can't speak for everyone, but I think it probably is true that most of the time they outgrow it, and I think Aubrey has. Bradley father to Aubrey (18 months ChARgE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Leah, WELCOME !! The eye thing is soooo familier, Aari is 8 and we still go through this... tho now thankfully it's just spring allergies, but when he was little it seeemed to go along with sinus infections or any little bug. As for what our kiddos will do.. you need only to look at our grown up CHARGErs here, Chantelle is about to start the University, is about to go out on his own (in a supervised home but still on his own) andrew is doing wonderfully too.. Of course all this does go with how 'bad' CHARGE is for them but with the right support our kids do well.. I'll never forget when Aari was dx'd, they handed me some outdate neonatal book and basically said he's gonna be deaf and profoundly retarded.. I looked at my baby with what seemed like a million tubes hooked up to him who lit up like a lightbulb when he realized I was there and told them BS. One thing you will learn quick is that our kids have their own agenda, they do thing how they want when they want and most of the time the docs haven't a clue (most of the time docs are into this 'worst case senario' thing) and when people give you that old " She isn't sitting up yet? " at 9 months.. don't worry.. when she does (because she will on her own time line) we'll all be here having a party with you. Again, Welcome to the family..... Casey Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Hi again, Thanks for the warm welcome- Sorry I forgot to mention our location-we are in Saginaw Michigan. We try to make it to the Mi picnic every year if possible, we missed last year. I have met some wonderful families from Michigan, but I havent found any family in my same county yet. Holly-mom of Super-Cody Saginaw MI USA CHARGEegroups wrote: > ------------------------------------------------------------------------ > Easter is easy with eGroups > Check Out Our Gift Guide Now > http://click./1/3121/1/_/22564/_/955504796/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > ------------------------------------------------------------------------ > > There are 25 messages in this issue. > > Topics in this digest: > > 1. Re: Casey > From: Turk22082@... > 2. Re: Attn. Jan > > 3. Re: Attn. Jan > > 4. Re: new member > > 5. Re: portable neb > From: QKANNE1@... > 6. Jeanne M > > 7. Eczema > > 8. Attn Leah > > 9. Re: Barb M. IEP > > 10. Re: new member > > 11. Re: Weird audiology questions...answers anyone? > > 12. Re: Attn. Jan > > 13. Re: Attn. Jan > > 14. Welcome Leah and Family > > 15. Re: new member > From: bradweis2@... > 16. Re: French or English...Help!I must choose > From: vtacharge@... > 17. RE: French or English...Help!I must choose > From: carole.landry@... > 18. Re: French or English...Help!I must choose > > 19. Iris colobomas > > 20. Re: Iris colobomas > > 21. Re: Eczema > > 22. RE:Hi I'm new to the list > > 23. Re: RE:Hi I'm new to the list > From: bearpawzx4@... > 24. WELCOME TO CHARGELAND > > 25. G-TUBES/NISSEN > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Tue, 11 Apr 2000 06:09:09 EDT > From: Turk22082@... > Subject: Re: Casey > > Casey, > > You sure sound busy. Best of everything for Weds. > > Bonnie > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Tue, 11 Apr 2000 08:15:55 -0400 > > Subject: Re: Attn. Jan > > Hi Jan, > Thanks for the help. I needed to hear that I wasn't crazy and imagining > things. People are so quick to criticize without knowing the full details of > the situation. My instinct as his mother is to delay his starting school until > next year and leave him in preschool where he can get more help and attention. > Everyone seems to think that I don't want to " let him go " . They don't know my > son, he has been fiercely independent since he was weaned from breasfeeding. > just can't be bothered with all that learning stuff. It's like he's in a > world of his own. It's hard for me to get his attention, and once I do, he just > doesn't get it. He's highly sociable, and very good with his little brother. > He has tons of energy, and his imagination never ends. He has imaginary friends > and animals. He will sit through an entire 2 hour trip just playing with his > hands and pretending they are helicopters, animals, people, etc... He has a > clean bill of health, no hearing problems or anything. He's too much like I was > at his age. Low attention span and in a world of his own. Some say I'm too > patient with him, but how can I push him harder when I remember how I hated > others pushing me. I believe can understand, it will just take him a > little longer than others. I just started both him and Caleb on Flaxseed oil. > I'm hoping it helps them both. Thanks for the advice. > le > Mom to Caleb 21month old CHARGEr, and 3 yrs. > Ontario, Canada > > BJ wrote: > > > Hi le, > > Yes I do totally understand ! My husband, before he became my ex used to > > complain about how come both of our kids have something wrong with them, and > > that other people managed to have healthy children. He could accept that > > Larry had CHARGE but when I had him diagnosed with ADHD he refused to > > believe it. I have ADD and could see so much of myself in Larry so I found > > the diagnosis easy to accept, now I believe CHARGE has a part to play in his > > behaviour problems as well as the ADHD. In the end a diagnosis is only > > important as long as it points me in the right direction for researching > > ways to help my kids. > > As far as Belinda was concerned Boy did I cop some criticism (she did too, > > when ever she became sick which was often she became this NON Person to her > > father, he wouldn't speak to her) I have spent more time at Doctors and > > hospitals with Belinda than with Larry. Her Dad said she was putting it on > > but I was the one who would sit up with her at night when she was in chronic > > pain and sweating with fevers, took here the doctors who told me her eardrum > > was about to rupture again, when she was sleeping 23 hours a day I expected > > to find that she didn't make it through the night (the Doctors could not > > find out what was wrong with her). > > le, I am a Pre School Assistant and although I have not got the > > training as a teacher I do work very closely with the teacher and I have a > > fair bit of experience working with children. I will give you the same > > advice that I have given other parents of children who have some minor > > learning difficulties, DELAY SCHOOL FOR AS LONG AS POSSIBLE. If a child > > particularly a boy (they develop slower than girls) is already having > > problems before even starting school going to school early can only > > exacerbate the problem. School Teachers are extremely dedicated but cannot > > give your child the intense one on one nurturing that is often necessary, > > they are only one person and cannot spend the time with the little ones who > > need the extra help. I have spoken to many parents of boys around the age > > of 8 who had rushed their kids off to school early and have lived to regret > > it, the schools want to repeat the sons because they are struggling and > > often only because of their immaturity. Let them grow up with as much > > nurturing as possible. Is it possible for to have 2 years of Pre > > School ? Have you tried any supplements with him i.e. Efelex or Flaxseed > > oil ?Have you tried " Brain Gym " or seeing a Kineisiologist ? Does he have > > a problem with low blood sugar ? Did you have a difficult birth with him ? > > Have you tried a Cranial Osteopath or a Chiropractor ? > > I have a friend who has a child with Spina Bifida and has major crisis with > > his health all the time, she was accused of " Munchausen by Proxy " because > > her child was sick all the time ! She was doing everything to help her > > child not harm him. The criteria for Munchausen by Proxy is a parent who > > has a sick child and knows an awful lot about medical matters. I don't know > > about you but that puts me it. We are criticised for doing everything to > > help all of our children no matter what the problem, how much criticism > > would we get if we did nothing to help our children with their difficulties > > ? > > Jan Hewitson Mum to Belinda 18 and Larry 16 > > Perth West Australia > > G-TUBES/NISSEN > > THANKS to all of you who sent information about G-tubes/Nissen vs > Suction. > I've printed all your messages and took them to Ximena's Peds. > So I think we will soon take a decision regarding this item. > Thanks A LOT. > Viviana > Paraguay > > ________________________________________________________________________ > ________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Holly, I too am from MI...Between Lansing and Grand Rapids. I've attended the last two picnics. My daughter is Brittney 7 1/2. Welcome to the list. IT's been wonderful on here. Amy mom to Brit 7, 5, 3 G-TUBES/NISSEN > > > > THANKS to all of you who sent information about G-tubes/Nissen vs > > Suction. > > I've printed all your messages and took them to Ximena's Peds. > > So I think we will soon take a decision regarding this item. > > Thanks A LOT. > > Viviana > > Paraguay > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click./1/3011/1/_/22564/_/955562404/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Leah, Jillian had the stuff in her eyes when she was born and it lasted a while. Someone told me to put a warm useed tea bag on her eye and it would help her. When she was asleep, I did that and it took care of Jillian's problem. i don't know if Sydny's case will be as simple as that but from the list I have heard of several kids with blocked tear ducts. As far as rubinol, I considered that when Jillian was a few months old and asked the list (because my pediatrician asked me to inquire on the list) and I was strongly adviced against rubinol. I have no experience because I took their advice and she grew out of the mucus problem. From what i understand, rubinol is good for cystic fibrosis kids that really have alot of problems. Our CHARGErs secretions come from a different reason, so the rubinol will dry them out. As I said, that is NOT from experience, just from what i have heard. Foley Mom to 4 1/2, (CHARGEr in heaven) and Jillian 2 w/cHaRGE, wife to Jeff, in Virginia new member > Hi everyone! > My name is Leah and I have a 4 month old daughter with Charge. She spent > the first 3 months of her life in the NICU, then was put back in the hospital > for a virus after only two weeks at home. Now we are home again and ready > to embark in this crazy world of medicine and therapy!!! " Sydney, " our > little fighter was diagnosed with CHARGE at 10 days old. She has bilateral > retinal colobomas involving the optic nerve(YUK), hearing loss, facial > palsy(rt side), swallowing dysfunction, and cranial nerve problems. Sydney > also has a mickey button, a trach,and had a bilateral choanal > atresia(repaired). She has had 6 surgeries and came thru everyone like a > true fighter. > I have been reading several of the emails and found several questions > that I hope someone out there will be able to help with. Sydney is on robinul > to control her secretions (which are horrible) is there a better med. that > will not dry her out so much. Having a trach I have to be careful about her > plugging off but without the robinul they are afraid she will aspirate. > I read somewhere about others having problems with retching, she is > terrible! sometimes I am afraid she will bust her Nissen its so bad. If > anyone has a reasoning behind this please let me know. > Sydney seems to have alot of drainage from her eyes, in the morning > sometimes, they are matted completely shut. Is this a charge thing or an > infection or clogging thing. > I continually read that every child with this syndrome is different but > it seems there are also alot of similarities. Can anyone tell me what kind > of life these children lead for the majority? In reading some of these > emails it seems that they are very bright individuals that have several > hurdles to jump! I know Sydney plays and acts like a typical 4mnth old > despite the vision and hearing impairments. > I am so glad that the chargelist is available, its such a relief to know > you have others to help. > Any comments suggestions or stories are welcomed!!! > > LOOK FORWARD TO TALKING TO EVERYONE > > Leah and Adam, parents to Trevan (4)and Sydney (4mnths w/ CHARGE.) > > > ------------------------------------------------------------------------ > Get your money connected @ OnMoney.com - the first Web site that lets > you see and manage all of your finances all in one place. > http://click./1/3012/1/_/22564/_/955429938/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Carole, Welcome to CHARGEland... I hope you find the list supportive, you'll feel like you know 100's of CHARGE families now! I'm not from Mass, about 8 hrs away in New Brunswick, Canada. I come through Mass alot in Nov & Dec though delivering Christmas wreaths! Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 New Member Hi, my name is Carole. I'm so glad I found a place I could come to. My son Mikael(), has CHARGE and is now 4 years old. I haven't had any contact with any other families who share the condition. Right now he's doing good, but he's been through 5 major surgeries and several minor ones. He's not walking yet and his speech is still limited, but he is the most remarkable child I've ever met. He's very social and happy most of the time. Is there anyone from the Massachusettes area here? I'm from Western Mass. I haven't heard of any groups, programs or anything out here. This is great to finally have a forum. Carole-Mom to Meghan (5) and Mikael (4). For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 , Welcome. I think your nephew is the youngest CHARGEr I know of. Wow! When I say this, I speak for all of us. The first few years are the roughest. Learning so much of these little ones, what surgeries need to be done, therapy, etc etc. but you've found the best support group there is. There's lots of information on here from experiences of families to booklets, manuals from the CHARGE Foundation. There's a booklet for families that I started with. This is what I started with. It helped SO much. Contact n Norbury for this. Email is: marion@... Amy mom to Brittney 7 CHARgE, 5, 3 MI New Member > Hi > My name is and I'm new here. We just found out today that my > nephew has CHARGE. At first they thought that he had Di > syndrome, they ruled that out last week and then came in today and > gave us this news. He was born on March 24, and had open heart > surgery on March 27. My sister in law doesn't have a computer, and I > know that there has to be a ton of wonderful people and places to > find online. I would appreciate if anyone would be able to forward > any information to me. I will pass it on to them at once. Thanks so > much for your help. > > > > > ------------------------------------------------------------------------ > 1.6 Million Digital Images! > Download one Today from Corbis.com > http://click./1/3356/1/_/22564/_/955600153/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 , Welcome to the list, it's so great you found us this early! Wow! Please tell your sister in law not to get too overwhelmed with doctors who tell her really negative stuff at this point. Some doctors when they read out of the textbooks, tell parents their child will be deaf, blind, mentally retarded, etc and it is simply not true. They may have some hearing/vision loss, etc, but it takes time to do accurate testing and a lot of times, once the kids get out of hospital, they do much better than originally perceived. Tell her not to be afraid to question, second question and third question the docs if she is not comfortable with something. When our daughter was born, we armed ourselves with as much information as possible, that really was how we made it through everything I think. (plus having this list was an incredible bonus) As Amy mentioned, the first important step is to get a hold of the CHARGE manual from the foundation. It will be the best 20 dollars you or your sister in law spend. Don't be shy to hit us with any questions you've got, we'll do our best to help you in any way you can. There's quite a few of us here with kids ranging in almost every age group covering most any symptom related to CHARGE, so there should always be someone to turn to. It might help if you include where you & your sister in law are from, it's always nice to have localized help as well. Someone might be able to suggest doctors, etc that have worked well for them. Please keep us informed as to your nephew's condition as you can... Welcome again to CHARGEland... Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 New Member HiMy name is and I'm new here. We just found out today that my nephew has CHARGE. At first they thought that he had Di syndrome, they ruled that out last week and then came in today and gave us this news. He was born on March 24, and had open heart surgery on March 27. My sister in law doesn't have a computer, and I know that there has to be a ton of wonderful people and places to find online. I would appreciate if anyone would be able to forward any information to me. I will pass it on to them at once. Thanks so much for your help. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 , I am fairly new to this group too. My husband who is 31 years old also was diagnosed (we think...nothing set in stone yet???) 1/02. There are several members who have children with PSC who I'm sure will give you a lot of wonderful insight. Ask, ask, ask...everyone here is so helpful and caring! ~ (wife of , PSC?, Madeline's Momma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 , Sorry that you have to be here but glad that you have found this great group. Everyone here has taught us so much. My fiance, Ian, has PSC & UC (dx 8/2000). Because he is only 36 he has also found it difficult to take so many pills a day, and is now finally getting used to the regimen, because he feels so much better than he did pre- dx. Maybe 's doc can help explain directly to him how important it is to take his meds everyday. I remember when I was that age, and it was sometimes difficult to listen to my mom...of course now (finally at age 29) I know she was right on with everything she said! *grin* Something that has helped Ian remember when he takes his pills is two of those weekly pill containers. He has a clear one for morning pills and a blue one for night pills. Because sometimes he cannot remember whether he took his pills or not ...he can always check if that day is empty or not. It has really helped! We also get all of his prescriptions from Walgreens and they have everything on autofill, so he never runs out as a result of forgetting to call in the refill! They just call us when it is time to pick them up. Something that we learned with the UC is that certain foods can trigger flare ups. He has learned the hard way what he can tolerate and what he can't. Nuts are out of the question, and so are raw veggies (when they are cooked they dont seem to bother him as much), really spicy foods and caffeine. Even small amounts of nuts bother him, at christmas he tried to sneak two Ferrer Rochets (sp?...those yummy chocolates with hazelnuts) and much to his dismay, he was up all night in alot of pain. Also stress seems to get his stomach in an uproar. The only things that seem to help calm it down are the heating pad & sometimes a Levsin (prescription med). Just keep asking questions, you will be surprised how supportive and educated the group is! Fiance of Ian PSC/UC dx 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Oh, , I am so sorry to hear about , but I am glad you found us. There are a few Moms here with children who have been diagnosed with PSC. Feel free to ask whatever questions you have to. While this is a difficult situation to be in, we here in the group are here to support and help you through. We have several people here who can give you information from the medical side, some who can empathize with you from the Mom side and those of us who actually have the disease and can give you perspective. We really do care about you because we know what you are facing, but understand this..... you are not alone in this. Janet from New Jersey **************************************************************** This e-mail and any documents accompanying this e-mail contain information which is confidential and/or legally privileged. The information is intended only for the use of the individual or entity named on this e-mail. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or the taking of any action in reliance on the contents of this e-mail information, is strictly prohibited and that the documents should be returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this regard, if you have received this e-mail in error, please notify us by return e-mail or telephone () immediately, delete the e-mail and all attachments and destroy all hard copies of same. >>> " tpd0206 " 02/12/02 10:53AM >>> My son has been diagnoised with PSC 12-2001 and UC 12-2000. He is 18 years old and a senior in high school. Currently they say liver function is normal though enzymes are elavated. He currently takes ascocal 2700mg a day and urso 1800mg per day.He feels well most of the time and I often think he dosen't realize how serious this is.Next year he goes off to school about 200 miles from home and I'm pretty worried about his health and how well he'll take care of himself. I try very hard not to question him about his well being or taking his medication. I know that its hard fo him to take 15 pills a day and i'm pretty sure that he misses many doses. It is so difficult to have a chil d that is sick as I'm sure many of you know any help you could offer would be greatly apprecated. Sincerely, s mom UC200 psc 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Prayers for your husband as well, that he will be able find strength to deal with all of this. Janet from New Jersey **************************************************************** This e-mail and any documents accompanying this e-mail contain information which is confidential and/or legally privileged. The information is intended only for the use of the individual or entity named on this e-mail. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or the taking of any action in reliance on the contents of this e-mail information, is strictly prohibited and that the documents should be returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this regard, if you have received this e-mail in error, please notify us by return e-mail or telephone () immediately, delete the e-mail and all attachments and destroy all hard copies of same. >>> " tpd0206 " 02/12/02 01:15PM >>> Thanks so much to all of those who responded to my letter about . It is such a relief to find people who can understand what this is like. Sometimes I feel like I should do the C. routine and yell out the windows MY SON IS SICK WANT SOMEONE PLEASE HELP ME. Of course most days better judgement prevails. has not shared much info with his freinds so I've been pretty quite about things. He said that he wished he had a fun disese that you could talk about at the dinner table he was hard pressed to think of a fun one. He has mainted a pretty good attiuted with all this and we have shared some bowel humor. I almost died from UC ten years ago but had a total colectomy and j-pouch and i'm fine now. My husband has a hard time understanding just where and I are coming from and I know no way to explain it. Well thanks again, Mom of UC-2000 PSC-2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Dear , 's situation sounds exactly like my son's . He too was diagnosed with PSC and UC his senior year of high school. Ironically, it was exactly 2yrs.ago this month. Whoa time flies....we were living in Hawaii at the time, but moved that June to Virginia, and by early August he was 500 miles away in college. That had to be one of the hardest things when we left him at school. Hard leaving a " healthy " child, much less one that's got this new thing that's taken up occupancy in their body. I was a crazed mother living in Hawaii and trying to line him up with a doctor close to college in Georgia....with a 6 hr time difference, that's not an easy task. Long story short, it's worked out and is totally responsible for doctor visits (every 3 months ), prescription refills, scheduling appt's around his classes etc.... The mom in me soooo wants to be there with him at his doctor visits, but I have to accept it's not logistically possible. I'll be glad to e-mail you privately and answer any questions. You are not alone and there are plenty of mom's in the group that will put their cyber arms around you, cry with you, or just be a sounding board when needed. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 Primary Sclerosing Cholangitis : PSC Support Hi this is the link with alot of information if you haven't found it already. Everyone is great with answering questions and posting things of interest. I was diagnosed with PSC, Feb 2001. I am 55 and live in Hamilton, Ohio. Love & Prayers, Ginger Today is a Gift www.TheHandcraft.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Welcome! I'm also a new comer to the group (since 2/3/02) and am still trying to learn how all of this works. I can tell you, however, that everyone has been very friendly and very willing to help out with any questions! I was diagnosed with PSC and UC in 1984, at the age of 20; I am now 38. It was real bad when I first was diagnosed but then I had years of reprieve. It wasn't until 1997 that things took a turn for the worse. My point here is...that being diagnosed with PSC/UC doesn't mean your life is means less, it just means that it is different! Enjoy life to the fullest! Again, welcome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Good morning. Just wanted to say hello and welcome. My name is Kat, I am 21 yrs. old, and I too recently joined the group (in Jan.). I was diagnosed with PSC in Oct. 2001, and am awaiting results of a procedure, to determine whether or not I have UC. Glad you're here -- these people can offer you support, encouragement, and knowledge that you can find nowhere else. - Kat (21 yrs. old, PSC Oct. 2001) > Hi. I am a sixteen year old girl who was diagnosed with PSC as well > as Ulcerative Colitis in May 2001. I just joined. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi there... welcome to the group...and let us know a little about you...your name...what yr in school...and how you are feeling... You will see that there are alot of caring people here...others with PSC ..some spouses and parents....That is who I am...I'm one of the moms here...there are many now....my son is 19 ...He has Crohns and PSC and some other auto-immune diseases....he was first diagnosed at 9...my other son is now 24 and was diagnosed at 3 with UC...he is doing really well and takes no meds for about the last 4 yrs... Ty is my 19 yr old...he takes meds...and right now is doing pretty good... let us know more about you... hope we will be able to help you and give you alot of support... Talk to you again...soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 sorry forgot to add that we all know of Klug...having been talking about him since he got his tx...and we all watch and were amazed at his recovery and getting back to his love....I think we were all pretty much glued to the TV to watch him snowboard.... what a champ... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 My name is Elesa...my husband Gene is 36 and dx @age 20 with uc and just recently(6 mos ago) with psc. We really didn't think much about it until this whole Olympic thing came up. Klug is from just a few hours away from us! We decided to see what we could find for supprt groups. We also did not know anyone who had this or had heard of anyone famous with it until now(Walter Payton too). We were shocked. My husband is in very good physical condition and so far has not had too many symptoms....mostly when he drank(before dx) he got very sick and sometimes he had swollen feet then sometimes he got this wierd red rash mostly on his ankles. I kept telling him something was wrong but until they rejected his blood for high liver enzymes did the dr's finally dx him with this. We have two daughters 1 and 3. We mainly are interested in other peoples case histories....how long from dx to transplant? What were some syptoms the condition was worsening? Thanks for your time. Take care- Elesa bbnlu@... wrote: Hi there... welcome to the group...and let us know a little about you...your name...what yr in school...and how you are feeling... You will see that there are alot of caring people here...others with PSC ..some spouses and parents....That is who I am...I'm one of the moms here...there are many now....my son is 19 ...He has Crohns and PSC and some other auto-immune diseases....he was first diagnosed at 9...my other son is now 24 and was diagnosed at 3 with UC...he is doing really well and takes no meds for about the last 4 yrs... Ty is my 19 yr old...he takes meds...and right now is doing pretty good... let us know more about you... hope we will be able to help you and give you alot of support... Talk to you again...soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 Elsea, I am 38 and was diagnosed with PSC/UC in 1984. I am just now approaching the transplant list. One of the unfortunate things about PSC is its unpredictability. Some patients have had tranpslants shortly after diagnosis, while some of us longer-timers have not. As you will see from others, I'm sure, that you will have bad times, and not -so-bad times. I have gone into long remissions in the past and am hoping for one again! Tell your husband to hang in there and do not fail to ask any questions. I am a new member and have already learned that you can ask anything and others are always willing to share what they know. Despite the fact that I have had PSC for so long, I did not realize either that there are so many others with PSC. In 1984 they said it was a "very rare" disease and when I wrote the Liver Foundation and NORD I got very little information. Now there is more info. and more patients. I have to wonder too, if it wasn't more prevalent at that time, just less awareness. Good luck to you and your husband! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 , wrote: > where can I access the model to get an estimate on how long? The models have been developed for end stage liver disease, so are not accurate in projecting survival more than 2 or 3 year in the future. The MELD score of over 18 has been shown to correlate with a 29% death rate on the waiting list over 3 months compared to 6% for those under 18. The study compared 311 patients listed as 2A - mean MELD score 27 - and 2B - mean MELD score 14. http://www.guckelberger.de/service/ilts2001/asmEvalShow.php3?action=showAbstract\ & AbsNo=37 There are models to estimate the Outcome of Liver Transplantation, http://216.19.70.245/PBC%20transplant%20model.html, and other concerns. But all are relatively short term and I don't think you are anywhere near that point. When you will get there is a guess at this point. 10 years, 20, more? While Klug and were both diagnosed at about 20, at 29 is 18 months post-tx and at 38 is still waiting to be listed. I was going to say that if you are diagnosed late in life PSC is usually slow, but I'm not sure that is a good generalization. Here again is the link to the Mayo site where you can calculate your MELD score. http://www.mayo.edu/int-med/gi/model/mayomodl-5-unos.htm Pre-tx mine was 20, now it is 6. Tim R __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Tim, Thanks for your input concerning the Mayo model. My MELD result was 6 too. I'm not sure what the score exactly means. Is this some sort of linear scale? The liver doctor said that they may put me on UDCA and see how the enzymes are affected. I didn't think of it at the time but are lower enzymes an indication of a slowing down of the disease? I would presume so, otherwise why bother with the UDCA. The matter that prompted all this investigation was a comment from the assistant surgeon last fall when I had a large tumor removed from my colon, cecum. He said my liver was not nodular, but that it didn't look quite right; you should look into the matter. So far, I feel great just finished a 5K run. Thanks again for your input! > >Reply-To: >To: >Subject: Re: NEW MEMBER >Date: Wed, 20 Feb 2002 19:59:08 -0800 (PST) > >, > wrote: > > where can I access the model to get an estimate on how long? > >The models have been developed for end stage liver disease, so >are not accurate in projecting survival more than 2 or 3 year in >the future. > >The MELD score of over 18 has been shown to correlate with a 29% >death rate on the waiting list over 3 months compared to 6% for >those under 18. The study compared 311 patients listed as 2A - >mean MELD score 27 - and 2B - mean MELD score 14. >http://www.guckelberger.de/service/ilts2001/asmEvalShow.php3?action=showAbstrac\ t & AbsNo=37 > >There are models to estimate the Outcome of Liver >Transplantation, >http://216.19.70.245/PBC%20transplant%20model.html, and other >concerns. But all are relatively short term and I don't think >you are anywhere near that point. When you will get there is a >guess at this point. 10 years, 20, more? While Klug and > were both diagnosed at about 20, at 29 is 18 >months post-tx and at 38 is still waiting to be listed. >I was going to say that if you are diagnosed late in life PSC is >usually slow, but I'm not sure that is a good generalization. > >Here again is the link to the Mayo site where you can calculate >your MELD score. >http://www.mayo.edu/int-med/gi/model/mayomodl-5-unos.htm >Pre-tx mine was 20, now it is 6. > >Tim R > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Hi Joanna - My son had Lyme Induced Autism; our entire family had Lyme and co-infections from NH. I just returned from ILADS (International Lyme & Associated Diseases Society) annual conference in New Jersey, and know many of the specialists personally. Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot blood test (Igenex is best) the patient is positive; however a negative result doesn't rule out Lyme and co-infections. Case in point: my son first had a negative Western Blot blood test. 6 months into antibiotic treatment we retested and he had a full blown positive (by CDC standards). The reason - to measure antibodies in a child who has battled Lyme for years, even a decade, their immune system may be too weak to produce antibodies. With antibiotic treatment, the child and his immune system strengthen enough to make antibodies, resulting in a full positive test result. Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, Nurse Practioner, PhD. Feel free to ontact me should you need more information. Marty spacecoastlyme@... To: BorreliaMultipleInfectionsAndAutism Sent: Thu, November 4, 2010 11:37:32 AMSubject: New Member Hi all,My name is Joanna, and my son's name is Preston who is 15 years old. We've been in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic pediatrician just had a phone conversation with the Houston homeopathy ladies 2 days ago, and my pediatrician would like Preston to have tests to check if he has Lyme. After reading for 2 days and emailing some parents, I come to here. But from what I had read, tests are not 100% accurate. Blood test is impossible for my son as he had too many traumas during his DAN! 8 years. So, pedi mentioned urine test, 1st time w/o provocation to get baseline, if it's negative, we'll do a provocation. But after reading, it seems there are many false negatives or false positives results. What tests did you do to help to diagnose Lyme?Thank you so much.Joanna (from Bay Area) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Hi Joanna - My son had Lyme Induced Autism; our entire family had Lyme and co-infections from NH. I just returned from ILADS (International Lyme & Associated Diseases Society) annual conference in New Jersey, and know many of the specialists personally. Lyme ultimately is a clinical diagnosis. If you have a positve Western Blot blood test (Igenex is best) the patient is positive; however a negative result doesn't rule out Lyme and co-infections. Case in point: my son first had a negative Western Blot blood test. 6 months into antibiotic treatment we retested and he had a full blown positive (by CDC standards). The reason - to measure antibodies in a child who has battled Lyme for years, even a decade, their immune system may be too weak to produce antibodies. With antibiotic treatment, the child and his immune system strengthen enough to make antibodies, resulting in a full positive test result. Two ILADS specialists in the Bay area are Ray Stricker, MD and Ginger Savely, Nurse Practioner, PhD. Feel free to ontact me should you need more information. Marty spacecoastlyme@... To: BorreliaMultipleInfectionsAndAutism Sent: Thu, November 4, 2010 11:37:32 AMSubject: New Member Hi all,My name is Joanna, and my son's name is Preston who is 15 years old. We've been in autism journey since he was 2 1/2 years old. We've been with DAN! for 8 years, Yasko for 1 year, Sequential Homeopathy for 3 years, and my holistic pediatrician just had a phone conversation with the Houston homeopathy ladies 2 days ago, and my pediatrician would like Preston to have tests to check if he has Lyme. After reading for 2 days and emailing some parents, I come to here. But from what I had read, tests are not 100% accurate. Blood test is impossible for my son as he had too many traumas during his DAN! 8 years. So, pedi mentioned urine test, 1st time w/o provocation to get baseline, if it's negative, we'll do a provocation. But after reading, it seems there are many false negatives or false positives results. What tests did you do to help to diagnose Lyme?Thank you so much.Joanna (from Bay Area) Quote Link to comment Share on other sites More sharing options...
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