Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Due to many things my son's diet has greatly expanded. He is on a gluten-free, casein-free, dye-free, preservative-free diet but he still has wonderful things to eat and choose from. We are also involved in OT with sensory integration and this has greatly helped us also. The Sensory Learning Program (www.sensorylearning.com) really put him over the edge. He will eat about anything we ask him to, speaks in sentences, etc. Supplements have also been a great help in improving his overall health, speech, and developmental gains. --- sherry silvern <srsilvern@...> wrote: > Welcome! > Funny you should talk about how your child eats only > crackers, cereal and yogurt. If we didn't use > applesauce with every meal, our son would have > probably eaten only applesauce, crackers, and > cheerios. I got recipes for crackers and started > making them at home with healthier stuff in them > (veggie crackers with real veggies, wheat germ, > etc.) 'cuz I knew Josh would eat an entire roll of > Ritz if I'd let him! > > Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Hi: Welcome! I noticed you said your child will only eat yoghurt and crackers. This is actually pretty common w/our kids. One thing you may want to look into is moving slowly toward the gluten/casein (dairy) free diet other posts have been talking about, or looking into digestive enzymes ( de Felice's book, Digestive Enzymes and Autism). Many kids w/PDD and SI and other diagnoses have trouble digesting wheat (or anything with gluten) and dairy foods but in a really difficult " Catch 22 " , they self-eliminate just about everything else. Then you end up with a situation where the very foods they crave are the very foods that are hurting them the most. Another thing you might want to explore is the fact that many of these kids have systemic yeast problems that prompt them to crave gluten and dairy and/or sugar (all of which feed the yeast - and the yeast gets busy consuming everything, including the nutrients your child's body is supposed to be absorbing). Bottom line: a lot of folks w/tough diagnoses have seen their kids improve - even to the point of losing the diagnoses - once they have solved the " gut " problem. It is a lot of information to absorb/learn and a lot of reading and sometimes a long road, but so worth your time. Good luck! Josie tonieire <galhub1@...> wrote: I'm new too. Our story is the same as yours, PDD initial diagnosis but now apraxia with sensory issues. How is your son with eating? Ours will only eat one flavor of Trix yougurt and various dried crackers and cereal. God help us if Trix ever goes out of business. We can't seem to get him to eat anything else. He's seeing a ST and OT which is helping grately. His sensory issues are comming along and he is even trying to say some words. We mostly use sing language which was our best discovery. It's slow moving but its moving!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Patti, I am sorry to hear about the loss to your body. I am sure that must be traumatic. My first tumor was in one of my kidneys. It had not spread so all I had to do was to have it removed. As if that were easy. The second was Hodgkin’s disease. I went through 6 months of chemo with this one. The chemo did heart and lung damage leaving me somewhat disabled at the age of 42. The good news is I am still doing ok at age 48 except for the limitations of the disability. Like you I watch my diet. Most of all I try to make every day meaningful. Which is easy when married to the world’s greatest woman for the past 27 years. Every day when I get up I tell myself that today is the best day of the rest of my life and then start planning how to make it so. I wish you well, Tom watergoddess <energywater4u@...> wrote: > Hello Tom Welcome to our group. Congratulations on winning twice. I would like to learn from you, how did you do it? I have BC with bone metz and I am trying each day to do right with my diet and keep ahead of this invasion to my body. I don't find it to be easy, but, then no one ever said it would be. I had an amputation of breast, no chemo/radiation,16mo ago. So far so good! Be blessed patti/chicago Hi, My name is Tom. I am a two time survivor of cancer. I look forward to learning a lot from the group. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 welcome cindy. thanks for sharing any info you have and we are here to help chris cindyroyster <cindyroyster@...> wrote: Hi! I am new to the group. My son was initially diagnosed with pdd almost a year ago but since his diagnosis is believed to be apraxia with some sensory issues. He is progressing wonderfully. I joined the group so that I could exchange information with other parents and hopefully learn alot more. I look forward to hearing from all of you. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Carolyn, Great to hear that you are doing so well. Keep improving! We want to hear about you going for you first three mile run for a few years next. Lol Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 --- Hi Carolyn and welcome!! I have learned alot from this group; mostly just reading others posts. I also love to meditate and it helps before going to sleep. Sorry you have gone through so much pain. God Bless, Sue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 --Hi Carolyn, Welcome! You have an inspiring story. You have really been through alot. So glad you are doing better now. I think I read that people with lupus could not take Enbrel and the other biologics....have you heard this? glad to have you with us Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 > > My son, 15.11 years old was told by his doctor that he has delayed > > growth. The appointment was one month ago during a routine sports > > physical by his regular doctor. > > > > My son is tiny, 5'2, around 90-94 pounds, completely hairless. His > 18 > > year old brother reached puberty around age 11. He is 5'9 and as > far > > as I can tell, he's shy of telling his mom everything, lol, > > everything works for him. The younger one was always small. We > never > > thought anything of it. He played all of the sports, currently in > > cross country and wrestling. Hes not at all agressive but he has > the > > drive to keep him in sports. > > > > The doctor ordered x-rays and discussed blood tests. This scared > him > > because it takes four people to hold him down for his childhood > > shots. I told the doctor that I would go home and discuss this with > > my husband and mull over what information I could find out. > > > > We got the results from the x-rays and a doctors appointment next > > Tuesday morning. According to the x-ray tech, His chronological age > > at the time was 15.10. Estimated bone age using standards compiled > > by Greulich and Pyle us approximately 14 years. Standard deviation > > for patient's chronological age is approximately 12 months. > > Impression: The patient's estimated bone age of 14 years is within > > two standard deviations of his chronological age of 15 years, > > although near the lower limits of normal. Then hand written it > says: > > Still has time to grow. > > > > Here are my questions: > > Do we have anything to worry about? > > Actually his bone age is 22 months younger than his chronological, > > more than the deviate 12 months. But if I go by what is said in the > > impression, it looks like hes only 12 months deviant. Is the 22 > > months deviant right? > > > > We never thought anything was wrong before. Now he's terribly > > worried. I just don't want to put off anything that could be helped > > now. > > > > Thank you, > > Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Welcome ! There is hope here for you! Get into the files and READ! Barb [ ] New member > > Hello all I am new here,was sent here and am grateful to the lady > that gave me the link. > > I am an ex-dental nurse living in the UK who is suffering from > FMS/CFS have been sick and disabled for at least 8 years. > > I have worked for many crazy dentists in my time. not joking, > seriously, dreadfully mad people. > mad as hatters (I wonder why) > > I am not mad, fortunately, lol! > but definitely a wee bit eccentric, in the nicest possible way, at > least thats what people tell me! LMAO > > no seriously, I did have a strange episode which prompted me to leave > my profession about 20 years ago, but dont have any problems of that > nature now. > English people are supposed to be eccentric anyway lol > > nowadays all dental staff over here wear gloves and masks all the > time, and many have air conditioned surgeries. > I was not just exposed to mercury but blood as well, risking aids > and HepB, no one wore gloves or masks when I was working. > > I bet theres tons of mercury in the air conditioner filters. > The aspirators they use when they drill out fillings, have an > exhaust, and the mercury vapour which is released by the aerosol > effect of the high speed drill, is sent straight back into the room > again, so its not only being sprayed around the room by the drill, > but also by the aspirator. > > the surgery would have been chock full of the stuff, breathing it > in, settling on everything and everyone. > > I worked chairside for ten years, no mask, no gloves, and also I had > the job of filling up the amalgam machine with mercury every single > day. > sometimes it would spill, its slippery heavy stuff, and it splits > into thousands of tiny globules which bounce and split again and run > about everywhere, it moves very fast, thats why its sometimes called > quicksilver. > We had carpet > on the floor. They say you should get special crystals to get rid of > it from carpets, I asked for this many times but the dentists would > not waste their money on it, so I was sitting above a carpet full of > mercury every single day. and guess who empties the aspirator bottle > full of mercury and saliva at the end of the day? > > When amalgam fillings were being done (dozens of them in each day) I > had to fill the amalgum gun with the soft mercury and silver amalgam, > which the dentist then pushes into the teeth, I was handling this > stuff in its unhardened state hundreds of times a week. > > my wedding ring and engagement ring had pinholes in them where the > mercury had bitten into the metal. > > They say that dental workers homes are full of mercury too, it comes > in on your clothes and hair and settles into the furniture and > carpets, even your bed. > > I just wish I could really prove the link with CFS, once and for all! > > I would sue those Dentists a***s off, honestly, why should I be so > poor and disabled, when all the while these dentists have great > insurance policies, no harm would be done to them. The dentists I > worked for did not take proper precautions to protect their staff. > much too stingy and tight, they were all alike as peas in a pod that > way. I would say that makes them liable. > > Its bad enough being sick and losing everything I had, let alone > having to scrimp and scrape just to get by, possibly for the rest of > my life. > Its a huge cover up, they are fully aware what has been going on and > they are all scared s***less. > Dentists and doctors and the whole medical proffession, terrified > they will be held responsible for their monumental cock-up. > > I have an aunt who still works as a dental nurse. she has > fibromyalgia, she helped me research mercury poisoning and chelation > for a while. Her FMS is improving so she lost interest. > > Meanwhile I found a really good GP. and twisted her arm about mercury > testing. she phoned the hospital and they said no way will you ever > get mercury testing for CFS/FMS on the NHS. But neither of us would > take no for an answer and she got me in with a neurologist. > He was very sympathetic and sad, and tried to direct me away from > mercury testing, but I argued and he finally gave in. > The tests came back as 1/3 of the amount that they would consider > dangerous. > Of course the NHS tests are no good because you dont excrete > mercury. If its lodged in your organs it wont show up in your blood, > the whole point is that it stays in the body and the body cant get > rid of it, so it stands to reason it wont show up in a normal blood > test. > I intend to talk to my GP about that as well when I am well enough, > actually she is an pretty amazing doctor, (I could murder some I have > seen) you never can guess what she will come up with, she is > academic, a maverick, quick to get things sorted and has quite an > open mind as well. When I saw her the first time she said I know > nothing about your condition. When I saw her the 2md time she had > visited the ME clinic in great yarmouth and referred me there. I know > she is only an NHS doctor, but I am delighted with her helpful ways. > > I kind of gave up on investigating chelation for a little while back > then, but recently I met someone on the > net who is chelating. She is going to get some testing done for me > using DMS (? I am not sure if I have it right), but she is guiding me > slowly along and I trust her, she seems to really know her stuff. > I am seeing a dentist on 11th Oct to discuss amalgam removal and I > will take it from there. > > I also worked as a receptionist in a Natural Therapy centre, where I > used to receive homeopathic treatments, aromatherapy and massage, I > read all of their library books and learned quite a bit. I am also a > Reiki master and I have been pisco-vegetarian for 25 years. diet is > good although I have been advised to cut out the fish entirely now, > and I seem to be taking the right supplements, and drinking enough > bottled water. > Lack of money could be a bit of a problem, though. > > Glad to have found this site, > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 This post hits close to home since I was diagnosed with delayed puberty around that age. I was finally diagnosed with hypogonadatropic hypogonadism. I'm 31 now. I would fight like mad to get the most knowledable doctors to treat your son. It might also help to offer some type of counseling. Looking back I wish I had gone to see a therapist as a kid. I n my opinion I think everyone needs therapy at some point in there lives. But seriously he needs to be treated quickly so he can try to go through puberty at the same time as the other boys. I'm available to talk further on the subject if you'd like off list. another gay man My e-mail is johnmeyer10@... --- mcrescione <crescione@...> wrote: > > > > My son, 15.11 years old was told by his doctor > that he has > delayed > > > growth. The appointment was one month ago during > a routine > sports > > > physical by his regular doctor. > > > > > > My son is tiny, 5'2, around 90-94 pounds, > completely hairless. > His > > 18 > > > year old brother reached puberty around age 11. > He is 5'9 and as > > far > > > as I can tell, he's shy of telling his mom > everything, lol, > > > everything works for him. The younger one was > always small. We > > never > > > thought anything of it. He played all of the > sports, currently > in > > > cross country and wrestling. Hes not at all > agressive but he has > > the > > > drive to keep him in sports. > > > > > > The doctor ordered x-rays and discussed blood > tests. This scared > > him > > > because it takes four people to hold him down > for his childhood > > > shots. I told the doctor that I would go home > and discuss this > with > > > my husband and mull over what information I > could find out. > > > > > > We got the results from the x-rays and a doctors > appointment > next > > > Tuesday morning. According to the x-ray tech, > His chronological > age > > > at the time was 15.10. Estimated bone age using > standards > compiled > > > by Greulich and Pyle us approximately 14 years. > Standard > deviation > > > for patient's chronological age is approximately > 12 months. > > > Impression: The patient's estimated bone age of > 14 years is > within > > > two standard deviations of his chronological age > of 15 years, > > > although near the lower limits of normal. Then > hand written it > > says: > > > Still has time to grow. > > > > > > Here are my questions: > > > Do we have anything to worry about? > > > Actually his bone age is 22 months younger than > his > chronological, > > > more than the deviate 12 months. But if I go by > what is said in > the > > > impression, it looks like hes only 12 months > deviant. Is the 22 > > > months deviant right? > > > > > > We never thought anything was wrong before. Now > he's terribly > > > worried. I just don't want to put off anything > that could be > helped > > > now. > > > > > > Thank you, > > > Kathleen > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Hello, . This is a terrifying time but you have every reason to expect a full and complete recovery for Jakob so hang in there and just keep one foot in front of the other for now. Our son is three and just completed a clinical trial therapy. has AML, we finished up his protocol in July and he is also in remission. Our kid's with DS seem to have a bit more patientce being cooped up, I hope this is the case for you. Lean on Child Life in the hospital !!!!! That's why they are there and they were lifesavers for us. Not just with Josh but they really helped out our other three kids also. - Rossdenisemccallister <denisemccallister@...> wrote: Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi ! Welcome to this little wonderful group! This group from what I have seen is WONDERFUL, and great SUPPORT (Expecically the support) and if you have ?s they try to answer ASAP! Once again welcome to the group! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Welcome, . My son is 4 and was diagnosed with high-risk ALL at age 3 on 10-29-03. His protocol is CCG1961c. He entered Long Term Maintenance (LTM) Aug. 3. Kids with DS often are very sensitive to Methotrexate and some other drugs, and has been neutropenic many, many times through treatment. He has had many complications, including malnutrition, and it has been a rough road for us. However, I say this not to discourage you but to encourage you. Today, 's road is far from over (he won't be off treatment until late spring 2007), but he is growing, has hair again, is back in preschool, and we are discovering, as many cancer parents call it, a "new normal." Hang in there. There's a great list for parents of kids with ALL that I'm on. It's very active and supportive, and so far two of us have kids with DS. If you go to www.acor.org, and then click on mailing lists, and then search under A, you'll see ALL-KIDS. I think you can click on that for instructions how to subscribe. Also, do you have a caringbridge website for him? That's a great way to keep people up to date on without having to say it over and over again, and a neat way to journal through the experience (cheap therapy). You can set it up (free) at www.caringbridge.org. Finally, Keene has a great book, "Childhood Leukemia," if you don't already have it. That's all my tips, except for the biggest and best: take one day (and sometimes one moment) at a time, and lean on your faith if you can. Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-cwww.caringbridge.org/in/kylefacts [ ] New Member Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Yes, Keene book is invaluable. Candlelighters will send you a copy, follow this link: http://www.candlelighters.org/freebooks.stm - Rossbdehoff@... wrote: Welcome, . My son is 4 and was diagnosed with high-risk ALL at age 3 on 10-29-03. His protocol is CCG1961c. He entered Long Term Maintenance (LTM) Aug. 3. Kids with DS often are very sensitive to Methotrexate and some other drugs, and has been neutropenic many, many times through treatment. He has had many complications, including malnutrition, and it has been a rough road for us. However, I say this not to discourage you but to encourage you. Today, 's road is far from over (he won't be off treatment until late spring 2007), but he is growing, has hair again, is back in preschool, and we are discovering, as many cancer parents call it, a "new normal." Hang in there. There's a great list for parents of kids with ALL that I'm on. It's very active and supportive, and so far two of us have kids with DS. If you go to www.acor.org, and then click on mailing lists, and then search under A, you'll see ALL-KIDS. I think you can click on that for instructions how to subscribe. Also, do you have a caringbridge website for him? That's a great way to keep people up to date on without having to say it over and over again, and a neat way to journal through the experience (cheap therapy). You can set it up (free) at www.caringbridge.org. Finally, Keene has a great book, "Childhood Leukemia," if you don't already have it. That's all my tips, except for the biggest and best: take one day (and sometimes one moment) at a time, and lean on your faith if you can. Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-cwww.caringbridge.org/in/kylefacts [ ] New Member Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 >syndrome and Dyspraxia. Unfortunately he's 13 years old now and so >it's maybe too late to help him with diet/+ enzymes etc. He chose to I've heard many people say if you can get an older child to cooperate they can benefit just as much from diet/enzymes/sup's, it just takes longer to get to the point where you see benefits. >be a vegetarian about two years ago and eats soy products quite a lot Many people have soy issues too, try to encourag him to switch as many of those to rice or almond varieties and see if this helps for a bit. the HNI Pep. will help with digestion of soy too (others will have much more to say on that one, I'm still trying to figure out how to get the enzymes into my boys who can't swallow pills yet) but perhaps a different enzyme is what he needs? >I hadn't realised that facial flushing could be a sign of >allergies/intolerances my son had this almost constantly (or at least >it would happen evry day) and i never knew why. You describe my boys exactly, we've found most of their issues doing elimination diet, I'm considering IgG test to find what we haven't found yet... >lots of antibiotics. Asthma since seven yrs. His sister(10) has Asthma has strong correlation with cows milk, I've heard time and time again that asthma is gone once they get rid of cows milk. >I'd had the info earlier...doctors here (UK) say not to bother trying >to suss out allergies as they change all the time in childhood. Though that is true, addressing whatever food issues they have now will help now, if they go away or change later than you can figure that out then. For my my allergies got worse with each exposure and I never 'grew out' of them. I have hope that with info from this group and others I can get my boys to the point where they can process things properly... A good book on the subject of elimination/rotation diet to identify food issues is Doris Rapp, 'Is this your child?' I checked it out from my local library... - near LAX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi, my son is 13 with autism. I started the diet when he was about 11. He did great!!! slipped off the diet for a year and it was the biggest mistake of my life, I'll never do that again. But we're back on the diet as of last spring and he is doing great! I am going to try enzymes. I did try the papaya digestive enzymes which did absolutely nothing. I am going to try the ones everyone tries here soon. Anyway I say try the diet, and expect to not see results for a good 2 or 3 months, but keep it up, remember to check for hidden gluten the website I think is www.gfcfkids.com has a list of acceptable and unacceptable foods and additives. and hidden gluten tips. check it out it's great! > > >syndrome and Dyspraxia. Unfortunately he's 13 years old now and so > >it's maybe too late to help him with diet/+ enzymes etc. He chose to > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 Hi , You and I are at very similar times right now. My (7), will be finishing Consolidation on Tuesday. She too is diagnosed with ALL, standard risk. She went into remission after one week. The induction phase was tough as the steroids made her diabetic, but as soon as she went off the steroids the diabetic problems went away. Now, we are looking at steroids again for 5 days a month for the next two months starting Tuesday. I suppose this will lead to the Diabeties returning. She is a real trouper. She take everything in stride and rarely complains. Her walking has suffered the most as she can not do any kind of step at all with out falling down. The Chemo took away the reflexing in her legs and her balance stinks. Last week was the first time that she showed any kind of reflexing returning to her legs, so that is a good sign that she may walk better soon. Maybe, as the drug that took it away is scheduled to come back again next week. Augh. Anyway, if you just want to compare notes, I am here. Karchner mom to Logan(9), ,(7)DS and Levi(4) [ ] New Member Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 Thank you for the warm ,and helpful welcome. Jakob started his consolidation on Tuesday .We started with a spinal tap with chemo and then a 4 hour infusion of methotrexate. Jakob only got half the dosage because he is Down syndrome with the understanding that if he did not get mouth sores they would in 3 weeks give him the full dosage. Needless to say we were in the hospital until Friday and I was calling the Doc on Saturday because of mouth sores and and a rash. They were also a little concerned because Jakob washed the chemo out of his body without the " rescue " drug which makes them think that the dosage was not high enough. Well we will see. He goes back to clinic again on Tuesday to start his 7 days of of steroids again a an injection of Vincristine. What a nightmare to say the least. Well I hope you all are doing well and that God will be kind to us all. { mom to Jakob 35 months DS } Karchner <karcrest@...> wrote: Hi , You and I are at very similar times right now. My (7), will be finishing Consolidation on Tuesday. She too is diagnosed with ALL, standard risk. She went into remission after one week. The induction phase was tough as the steroids made her diabetic, but as soon as she went off the steroids the diabetic problems went away. Now, we are looking at steroids again for 5 days a month for the next two months starting Tuesday. I suppose this will lead to the Diabeties returning. She is a real trouper. She take everything in stride and rarely complains. Her walking has suffered the most as she can not do any kind of step at all with out falling down. The Chemo took away the reflexing in her legs and her balance stinks. Last week was the first time that she showed any kind of reflexing returning to her legs, so that is a good sign that she may walk better soon. Maybe, as the drug that took it away is scheduled to come back again next week. Augh. Anyway, if you just want to compare notes, I am here. Karchner mom to Logan(9), ,(7)DS and Levi(4) [ ] New Member Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 , When Missy took the methotrexate she got the full dose and yes she got really bad mouth sores and it went right through and her buttock would lose skin and she would bleed. Then they cut her back to 3/4 dose and the mouth sores got better but she still got them pretty bad. She would get 16 double doses of the recovery drug (lecovrine) and still didn't neutralize the methotrexate. She had to be on hydration for at least 6 days after treatment to flush it out of her system. So maybe he does need a larger dose. Missy use to get a 24 hour infusion of Methotrexate and 6 hour infusion of 6-MP. She got this every other week for 6 moths. Then she went on maintenance for 2 years. Missy will be 18 in March and she was diagnosed just a few months before she turned 5. So she is a long term survivor. Kay Mccallister <denisemccallister@...> wrote: Thank you for the warm ,and helpful welcome. Jakob started his consolidation on Tuesday .We started with a spinal tap with chemo and then a 4 hour infusion of methotrexate. Jakob only got half the dosage because he is Down syndrome with the understanding that if he did not get mouth sores they would in 3 weeks give him the full dosage. Needless to say we were in the hospital until Friday and I was calling the Doc on Saturday because of mouth sores and and a rash. They were also a little concerned because Jakob washed the chemo out of his body without the " rescue " drug which makes them think that the dosage was not high enough. Well we will see. He goes back to clinic again on Tuesday to start his 7 days of of steroids again a an injection of Vincristine. What a nightmare to say the least. Well I hope you all are doing well and that God will be kind to us all. { mom to Jakob 35 months DS } Karchner <karcrest@...> wrote: Hi , You and I are at very similar times right now. My (7), will be finishing Consolidation on Tuesday. She too is diagnosed with ALL, standard risk. She went into remission after one week. The induction phase was tough as the steroids made her diabetic, but as soon as she went off the steroids the diabetic problems went away. Now, we are looking at steroids again for 5 days a month for the next two months starting Tuesday. I suppose this will lead to the Diabeties returning. She is a real trouper. She take everything in stride and rarely complains. Her walking has suffered the most as she can not do any kind of step at all with out falling down. The Chemo took away the reflexing in her legs and her balance stinks. Last week was the first time that she showed any kind of reflexing returning to her legs, so that is a good sign that she may walk better soon. Maybe, as the drug that took it away is scheduled to come back again next week. Augh. Anyway, if you just want to compare notes, I am here. Karchner mom to Logan(9), ,(7)DS and Levi(4) [ ] New Member Hi My name is and I have a son Jakob who is Down syndrome. Jakob was diagnosed with ALL on August 19,2004 and is in remission. We are starting our Consolidation phase of treatment on Tuesday and I am very afraid for him. We have him in a research study and a computer actually chose what treatment he would be givin. As I understand it it is standard treatment but the administration of the drugs are different. I live in Rhode Island and Jakob is in a Childrens Hospital that does have links to Boston but still I guess it's the mom in me that is so worried.I didn't know Jakob was going to be Down syndrome I had refused testing because it really didn't matter. He is 34 months old and VERY ACTIVE LOL. I am just praying we make it through 2 and a half years of treatments. Thanks for listening to my rambling. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 In a message dated 10/31/2004 12:23:59 PM Eastern Standard Time, thornofaradia1@... writes: Do all letters go through the group address, or personal address? Or is it optional? I will still respond to all. Again I'm really sorry for rambling on. Thank You though. Hi Welcome to the group. You can go into options and have all the mail sent directly through e-mail or just read them when you sign on to the group. it sounds like you had a very irrational doctor there. Believe me, doctors are not Gods like they think they are and I should know that having been in the medical field myself. Many of them make mistakes and have lousy bedside manner. I don't know where you live but you have many other options to try and would benefit to find a doctor who listens to you as a person then just quoting a textbook. Please do not give up. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Dear Tina, first of all I'm glad you found us and give your son a kiss from all of us. We are a great group if I do say so myself...lol. Everyone is compassionate and supportative of each other, so go ahead and vent all you want. That's what we are here for. I write long letters too, and I've found out that most member like them, either that or they are just being nice to me. Either way, sometimes it takes a long letter to get it all out and tell your story. Secondly, I'm so glad you got a new doctor! I know you have probably read some of our emails and finding the right doctor is one of the hardest parts of having EM. It's so easy to just settle for a doctor when you are sick and don't feel like shopping around and seeing more medical people. But in the long run it pays off and you are so much better off with a doctor who actually listens to you and actually cares. There are just too many sad and horror stories of people who weren't their own health advocate and end up in horrible situations. So be proud of yourself that you put your foot down and got a new doctor. As far as your emails go, if you just hit reply to a email you want to answer and the whole group will see the email. If you want to email to someone directly and personally, you just find their email address usually at the top of the page and send your email to them, mine is fran@... That is when you just want to write to one person. Don't worry about doing it " wrong " because no one will bite your head off if you make a mistake. We are here to support each other, not become computer whizzes. So don't worry about mistakes., Ok. Just write as much as you want. Finding the right doctor is important, but then finding the right medication becomes the next battle. I know it seemed to take me forever and I'm sure the group was getting tired of my whining...lol. I had a lot of severe reactions to the new drugs and the old ones just didn't seem to work. After going crazy and almost ending up in the hospital several times, I found Arava to be the one to help me the most. It has increased my energy level and helped me somewhat with the pain. The pain is the hardest part for me to deal with, but I have a lot of other problems too, so it goes on and on. I have to take strong narcotics or I'd never get through the day or the night. Luckily, I've been able to stay at the same dosage for 3 years, so I feel like I'm on a good level and I can still function, most of the time...lol. It's great that your family is supportative and on your side. That makes things much easier, but it's true it is hard for them to truly understand what you are going through. We would be the same way I guess, though I swear I try to empathize with everyone so I never hurt anyone's feelings. I've felt too brushed off by people in the past and know how badly it can make you feel. it's hard enough to be sick, but when someone doesn't understand or thinks it's " all in your mind " then that's just too much. At least here, almost every time, someone will have gone through what you have or will be going through it then. So at least you can reach someone who is understanding and hopefully can offer suggestions to help. Anyway, I wrote a book too with this email, and my hands are killing me now. I'm glad you found us and keep on reading up on your disease. That way you have some idea if you doctor is on the right tract. Lots of us are on anti-depressants, like you said it's really easy to get depressed dealing with this. The other thing that is great about anti-depressants is they also help lower the pain levels by raising your sereotoin levels. Anything that helps with pain is usually a good thing. Well take care and glad you joined. Write anytime and Welcome. Love, Fran ---Original Message----- From: Tina [mailto:thornofaradia1@...] Sent: Sunday, October 31, 2004 8:41 AM Subject: [ ] New Member Hi everyone, I can't begin to express how fortunate I feel finding this group. Actually my son found you for me,and I'll never stop thanking him for being so thoughtful. I've never met anyone with psoriatic arthritis, and know only one person with psoriasis. I have both, niether of which has ever been less than severe. Right now, I'm worse than I've ever been. I've always been a fighter, and try very hard to be positive about everything. But it's become increasingly difficult these last few months. I've had psoriasis,for about 20 yrs. It's never really been unbearable, just something to hide when possible, and the pain is tolerable most of the time. A few years ago, I started losing control of my hands and lost all feeling in my fingers. My doctor sent me to a Neurologist, who diagnosed the PA. At that time, I couldn't seem to find out much about the condition, other than what a handful of doctors were telling me.I heard everything from I'd be in a wheelchair within 10 yrs. to that my internal organs would eventually shut down.It was pretty frightening. Like most people, I refused to except this. I then went to a dermatologist, who told me nothing could be done. Then a Rheumatologist who told me not enough was known about this condition, other than to treat it like RA and hope for the best. They started giving me Methotrexate injections every other week, pain meds, and more meds to help me sleep. The side effects would range from annoying to devastating, but since it did seem to help quite a bit, it seemed well worth it. Last year things changed. Nothing seemed to work anymore. The doctor upped the Methotrexate doses,and changed my shots to every week. He gave me steroid creams,steroid pills,and 2 more creams on top of that.Nothing helped. He then decides I'm depressed. Who wouldn't be? Constant pain, lack of sleep, and frustration tend to do that to a person. So here come the antidepressants, and stronger painkillers. I really don't like being unable to function, so I did the big no-no and started questioning the doctor about his choices of treatment and the long term effects they're going to have on me. He then informs me that I've lost touch with reality, and hands me a presription for an anti psycotic drug and recommends Inhouse observation. Needless, to say I threw a huge fit, and decided that I no longer have a doctor. So now with no treatment at all I've landed on crutches to help me walk and bad days have turned to worse days,and nightime is a real joy. But, I've decided that this is a good thing after all, because I've started looking for other options, instead of just relying on the doctors to give me the answers. I can't do much right now, other than search the internet.(when my hands are willing) And after reading the letters from this group,and just finding out every bit of info I can, I'm going to start over. I have an appt. set up with a highly recommended dermatologist this week, and will be able to go in a little better informed, and not afraid to ask any questions I feel neccesary. Sorry I ended up writing a book for you all. I've never been able to do anything like this before. I have a good family and some very good friends, but when I do talk about it, they become very uncomfortable. Except my mom, she knows what it's like, because she has RA. But she has way too much going on, and we'll never be on that level with each other anyway. I'm so happy to talk to people that know what this life is like. Kind of bittersweet. I finally know I'm not alone, not imagining these awful things, and someones there who really, really understands. I would absolutely appreciate beyond belief any letters or info, anyone might have for me. And hands willing, will respond A.S.A.P. to all. I don't understand exactly how all this works yet. Do all letters go through the group address, or personal address? Or is it optional? I will still respond to all. Again I'm really sorry for rambling on. Thank You though. Blessed Be, T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Merry Meet,Tina, and welcome I myself am new as well, I only joined last week, but already, this place has educated me to a point where I fired my first Rhumy and have an appt set for a new one. Learn all you can, become informed, because alot of doctors are not. Keep to your faith. Crystal >From: " Tina " <thornofaradia1@...> >Reply- > >Subject: [ ] New Member >Date: Sun, 31 Oct 2004 13:40:33 -0000 > > > >Hi everyone, I can't begin to express how fortunate I feel finding >this group. Actually my son found you for me,and I'll never stop >thanking him for being so thoughtful. I've never met anyone with >psoriatic arthritis, and know only one person with psoriasis. I have >both, niether of which has ever been less than severe. Right now, I'm >worse than I've ever been. I've always been a fighter, and try very >hard to be positive about everything. But it's become increasingly >difficult these last few months. I've had psoriasis,for about 20 yrs. >It's never really been unbearable, just something to hide when >possible, and the pain is tolerable most of the time. A few years >ago, I started losing control of my hands and lost all feeling in my >fingers. My doctor sent me to a Neurologist, who diagnosed the PA. At >that time, I couldn't seem to find out much about the condition, >other than what a handful of doctors were telling me.I heard >everything from I'd be in a wheelchair within 10 yrs. to that my >internal organs would eventually shut down.It was pretty frightening. >Like most people, I refused to except this. I then went to a >dermatologist, who told me nothing could be done. Then a >Rheumatologist who told me not enough was known about this condition, >other than to treat it like RA and hope for the best. They started >giving me Methotrexate injections every other week, pain meds, and >more meds to help me sleep. The side effects would range from >annoying to devastating, but since it did seem to help quite a bit, >it seemed well worth it. Last year things changed. Nothing seemed to >work anymore. The doctor upped the Methotrexate doses,and changed my >shots to every week. He gave me steroid creams,steroid pills,and 2 >more creams on top of that.Nothing helped. He then decides I'm >depressed. Who wouldn't be? Constant pain, lack of sleep, and >frustration tend to do that to a person. So here come the >antidepressants, and stronger painkillers. I really don't like being >unable to function, so I did the big no-no and started questioning >the doctor about his choices of treatment and the long term effects >they're going to have on me. He then informs me that I've lost touch >with reality, and hands me a presription for an anti psycotic drug >and recommends Inhouse observation. Needless, to say I threw a huge >fit, and decided that I no longer have a doctor. So now with no >treatment at all I've landed on crutches to help me walk and bad days >have turned to worse days,and nightime is a real joy. But, I've >decided that this is a good thing after all, because I've started >looking for other options, instead of just relying on the doctors to >give me the answers. I can't do much right now, other than search the >internet.(when my hands are willing) And after reading the letters >from this group,and just finding out every bit of info I can, I'm >going to start over. I have an appt. set up with a highly recommended >dermatologist this week, and will be able to go in a little better >informed, and not afraid to ask any questions I feel neccesary. Sorry >I ended up writing a book for you all. I've never been able to do >anything like this before. I have a good family and some very good >friends, but when I do talk about it, they become very uncomfortable. >Except my mom, she knows what it's like, because she has RA. But she >has way too much going on, and we'll never be on that level with each >other anyway. I'm so happy to talk to people that know what this life >is like. Kind of bittersweet. I finally know I'm not alone, not >imagining these awful things, and someones there who really, really >understands. I would absolutely appreciate beyond belief any letters >or info, anyone might have for me. And hands willing, will respond >A.S.A.P. to all. I don't understand exactly how all this works yet. >Do all letters go through the group address, or personal address? Or >is it optional? I will still respond to all. Again I'm really sorry >for rambling on. Thank You though. > > Blessed Be, T. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Hi T and welcome to the group. I was sorry to read about your story so far but hopefully from now on things will improve for you. Sounds to me like your doctor could be the one who has lost touch with reality. There are some very knowledgeable people on the list, most with experience of dealing with the disease personally or through members of their family and some with a medical knowledge to back that up. Good luck in the future with this, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 --- Hi Tina, Sorry to hear you've had such a hard time. Welcome to the group. This is a very special group with alot of good answers to any kind of question. I was lucky to find a good Rheumy on my first try. He is very compassionate and informative. Even when I'm having a good day on my appt. visit I still let him know how I've been for the month-bad flares, etc. When I first went to him he would come in the exam room and ask me how I was doing and I would say " fine " like a little robot. And I wouldn't get much help or ideas from him. He worked like crazy to get me started on Arava and then on Enbrel when we found out it needed to be pre-approved by my husband's insurance. So I hope you can find another Rheumy. My Derm is also a good Dr. and also aggressive for my disease. I will be praying for you. Ask any questions. God Bless, Sue in Michigan. In , " Tina " <thornofaradia1@y...> wrote: > > > Hi everyone, I can't begin to express how fortunate I feel finding > this group. Actually my son found you for me,and I'll never stop > thanking him for being so thoughtful. I've never met anyone with > psoriatic arthritis, and know only one person with psoriasis. I have > both, niether of which has ever been less than severe. Right now, I'm > worse than I've ever been. I've always been a fighter, and try very > hard to be positive about everything. But it's become increasingly > difficult these last few months. I've had psoriasis,for about 20 yrs. > It's never really been unbearable, just something to hide when > possible, and the pain is tolerable most of the time. A few years > ago, I started losing control of my hands and lost all feeling in my > fingers. My doctor sent me to a Neurologist, who diagnosed the PA. At > that time, I couldn't seem to find out much about the condition, > other than what a handful of doctors were telling me.I heard > everything from I'd be in a wheelchair within 10 yrs. to that my > internal organs would eventually shut down.It was pretty frightening. > Like most people, I refused to except this. I then went to a > dermatologist, who told me nothing could be done. Then a > Rheumatologist who told me not enough was known about this condition, > other than to treat it like RA and hope for the best. They started > giving me Methotrexate injections every other week, pain meds, and > more meds to help me sleep. The side effects would range from > annoying to devastating, but since it did seem to help quite a bit, > it seemed well worth it. Last year things changed. Nothing seemed to > work anymore. The doctor upped the Methotrexate doses,and changed my > shots to every week. He gave me steroid creams,steroid pills,and 2 > more creams on top of that.Nothing helped. He then decides I'm > depressed. Who wouldn't be? Constant pain, lack of sleep, and > frustration tend to do that to a person. So here come the > antidepressants, and stronger painkillers. I really don't like being > unable to function, so I did the big no-no and started questioning > the doctor about his choices of treatment and the long term effects > they're going to have on me. He then informs me that I've lost touch > with reality, and hands me a presription for an anti psycotic drug > and recommends Inhouse observation. Needless, to say I threw a huge > fit, and decided that I no longer have a doctor. So now with no > treatment at all I've landed on crutches to help me walk and bad days > have turned to worse days,and nightime is a real joy. But, I've > decided that this is a good thing after all, because I've started > looking for other options, instead of just relying on the doctors to > give me the answers. I can't do much right now, other than search the > internet.(when my hands are willing) And after reading the letters > from this group,and just finding out every bit of info I can, I'm > going to start over. I have an appt. set up with a highly recommended > dermatologist this week, and will be able to go in a little better > informed, and not afraid to ask any questions I feel neccesary. Sorry > I ended up writing a book for you all. I've never been able to do > anything like this before. I have a good family and some very good > friends, but when I do talk about it, they become very uncomfortable. > Except my mom, she knows what it's like, because she has RA. But she > has way too much going on, and we'll never be on that level with each > other anyway. I'm so happy to talk to people that know what this life > is like. Kind of bittersweet. I finally know I'm not alone, not > imagining these awful things, and someones there who really, really > understands. I would absolutely appreciate beyond belief any letters > or info, anyone might have for me. And hands willing, will respond > A.S.A.P. to all. I don't understand exactly how all this works yet. > Do all letters go through the group address, or personal address? Or > is it optional? I will still respond to all. Again I'm really sorry > for rambling on. Thank You though. > > Blessed Be, T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Hello I am new member too. You should look also www.lymenet.org <http://www.lymenet.org/> in flash discussion. _____ From: Alice [mailto:alice@...] Sent: Sunday, November 21, 2004 1:23 AM Subject: [ ] new member Hello, I'm a new member here. I have just been told that I have lyme disease. I've had it for 30 years and suffered a dozen or more symptoms over the years. Reading some of the post here has me more concerned than I was when I found out. I am not happy I have Lyme, but thrilled to find out I am not crazy and my illnesses were not " in my head. " I will be reading past post to help me understand this awful disease better. I'm glad I've found this group. Alice Quote Link to comment Share on other sites More sharing options...
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