Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Judy; I'm so sorry to hear of this dilemma you're in. How about taking him to the grocery store and let him pick out what he wants to eat. This is only an idea. I did see a special on this on a show like 20/20, maybe a few months ago. It is as if the kids are anorexic or something like that. I do not know what they had the kids do, but if there was anyway you could contact them and find out about the show they aired? Only a thought.... How about a Naturopath check him out real thoroughly, ..... Are his teeth ok? Sore throat? I will pray for the right thing to come to you soon! This little guy needs help, fast! My prayers are with you and yours! Need answers > > We have a two year old, that will not eat. And we've had him to a doctor on > many occasions. They are now running ear-test. He will look at food on his > plate and push it to the side. Or when given food in his hand will throw it > down or want to hand it back to us. We have tried even making a game out of > eating food. He will however drink from his cup,the milk, water, juice, but > refuses cereal, potatoes mashed or baked ( but will eat French fries. ) he > refuses any sort of meat, chopped ground or otherwise. He will eat crackers, > and very little bread, and prefers dry cereal. We have an awful time getting > fruits down him..and baby -food we might as well save our money and not buy > any. > > We've been taking all the doctors advice, and nothing is working. He is not > a > small child. He turned two this June, and weighs 39 lbs. He is very active, > and not fat, just solid. > He is learning to talk more. We feel that he is slow in talking, but mature > in other ways. He understands what we tell him..and knows all his toys, > many by name, And when we ask him to go get a certain one, he does this. He > can say car, bike, but not truck or swing, but knows which one we are > talking to him about. He tries to say water. The doctors think he is behind > in > speech, because he won't put words together to make sentence. Butr we doubt > this. > > In our opinion we think that he is doing okay, except for the eating > problems. We don't want to put him back on the bottle all day, or all baby > food. > ( doctor said to take it away all food, that when he begins to get hundry he > will eat. Well it didn't work, we had a crying child on our hands, and he > wouldn't sleep..I'm not so sure that was a good idea. > > Are there other children in this same situation? And what can we do for > them? > > Jarrett will eat sometimes a cracker with peanut butter, but will often > times refuse this and even a jelly sandwich. We've tried pudding, > ice-cream..and cooked apples, and other fruits raw. He just looks at it and > shoves it away. It's as if he has no idea, that he is allowed to put it in > his mouth. We have taken bites, and showed him how good it taste and .he > laughs at us, and goes on playing. We have done what a doctor said for so > long were just tired of trying to figure this eating disorder out. A doctor > has told the parents to ignore until he gets so hungry he > will eat..Why he would go hours days, in a crying spell, if we give to him > just > milk. We can't even consider potty training because right now he don't have > enough solid foods for him to properly go. It is very frustrating to sit > back and not know what more can be done. His mother today in in tears. We > fear that they might have to.. in time hospitalize him. That > is a great worry on the parents right now. > I've raised six children of my own and we never had this problem, so it is > hard for me to tell my daughter what to try. And she is now beside herself, > as to what to do. > > Sincerely a very concerned family.. > > > > > > > ------------------------------------------------------------------------ > Best friends, most artistic, class clown Find 'em here: > 1/7078/13/_/378/_/964117283/ > ------------------------------------------------------------------------ > > Get HUGE info at http://www.cures for cancer.ws, and post your own links there. Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by visiting http://www.bobhurt.com/subunsub.mv > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 It appears that this child is only tempted to eat an oily food. He may be grossly deficient in essential fatty acids in the omega3 oils. Try high lignan flax oil or extra virgin olive oil or cod liver oil. Is he being given only processed foods? Commercial baby foods are a disaster and it makes sense if he avoids them. Why not give him some fresh fruits and vegetables rather than processed food. The same foods you eat only puree'd if he can't take solids. Arnold Gore Consumers Health Freedom Coalition Need answers > > We have a two year old, that will not eat. And we've had him to a doctor on > many occasions. They are now running ear-test. He will look at food on his > plate and push it to the side. Or when given food in his hand will throw it > down or want to hand it back to us. We have tried even making a game out of > eating food. He will however drink from his cup,the milk, water, juice, but > refuses cereal, potatoes mashed or baked ( but will eat French fries. ) he > refuses any sort of meat, chopped ground or otherwise. He will eat crackers, > and very little bread, and prefers dry cereal. We have an awful time getting > fruits down him..and baby -food we might as well save our money and not buy > any. > > We've been taking all the doctors advice, and nothing is working. He is not > a > small child. He turned two this June, and weighs 39 lbs. He is very active, > and not fat, just solid. > He is learning to talk more. We feel that he is slow in talking, but mature > in other ways. He understands what we tell him..and knows all his toys, > many by name, And when we ask him to go get a certain one, he does this. He > can say car, bike, but not truck or swing, but knows which one we are > talking to him about. He tries to say water. The doctors think he is behind > in > speech, because he won't put words together to make sentence. Butr we doubt > this. > > In our opinion we think that he is doing okay, except for the eating > problems. We don't want to put him back on the bottle all day, or all baby > food. > ( doctor said to take it away all food, that when he begins to get hundry he > will eat. Well it didn't work, we had a crying child on our hands, and he > wouldn't sleep..I'm not so sure that was a good idea. > > Are there other children in this same situation? And what can we do for > them? > > Jarrett will eat sometimes a cracker with peanut butter, but will often > times refuse this and even a jelly sandwich. We've tried pudding, > ice-cream..and cooked apples, and other fruits raw. He just looks at it and > shoves it away. It's as if he has no idea, that he is allowed to put it in > his mouth. We have taken bites, and showed him how good it taste and .he > laughs at us, and goes on playing. We have done what a doctor said for so > long were just tired of trying to figure this eating disorder out. A doctor > has told the parents to ignore until he gets so hungry he > will eat..Why he would go hours days, in a crying spell, if we give to him > just > milk. We can't even consider potty training because right now he don't have > enough solid foods for him to properly go. It is very frustrating to sit > back and not know what more can be done. His mother today in in tears. We > fear that they might have to.. in time hospitalize him. That > is a great worry on the parents right now. > I've raised six children of my own and we never had this problem, so it is > hard for me to tell my daughter what to try. And she is now beside herself, > as to what to do. > > Sincerely a very concerned family.. > > > > > > > ------------------------------------------------------------------------ > Best friends, most artistic, class clown Find 'em here: > 1/7078/13/_/378/_/964117283/ > ------------------------------------------------------------------------ > > Get HUGE info at http://www.cures for cancer.ws, and post your own links there. Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by visiting http://www.bobhurt.com/subunsub.mv > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Or just turn the kid upside down and oil him thataway. JR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 So you may become one of us. Whatever happens know that you will make it. I am on my third icd. I will not tell you that I didn't have problems with the other two as I did. But let me tell you that my first one that was installed was only 250 that they had every done. So as you can see from t he list of people that as a long time ago and things have greatly improved. I am 55 year old female on ss disability do cardiac and other major health problems. I am married but live basically alone all the day and have my own room at night in the other end of the house. I have a dog and a cat. Someday are easier than others and someday are just plain hell. The most important thing is I am alive and living. Please expect there to be some mood swings and please expect some life style changes. All of these will be up to you and your own condition and your body. I am not allowed to drive as I pass out from VT. I have never been shock free for a long period of time. I have to be the biggest baby in this group I have had a very hard time adjusting to my live in companion but considering my options I am glad I have it. I can cook and keep house, no real heavy work. I do my own laundry. I depend on others for trips to the store and shopping. I garden and camp with my children. I swim with someone with me. I prefer baths to showers as I have a fear of falling with no one here. I have informed my neighbors and my local fire department. I attend a local support group but found it ackward and depressing. This Zap board has been the answer to my prayers and I have made some wonderful friends here. They have picked me up and pout me back together many times when I have fallen apart. Remember that we will all support you through this. If you would like a more personal response e-mail at iipistacio@.... The shocks are a whole new way of life and they take some getting use to but t hen think of the alternative. Hoping for the best Your Sister Zapper Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Hi; There is a great support Board with a great group of folks at www.zaplife.org - check out the newsletter, chat times and most importantly the BBS - that is where everyone posts questions and answers. A great group of people, implant atients, caregivers and nusres! I was 40 when I ws implanted 14 mos ago, I had mine implanted under the muscle which is a much harder recovery... But I was driving 2 days later - I think that had to do with my age and living in a rural area. Some people, depending on the state they live in, cannot drive for 6 mos! I have never lost conciosness, so that ws not an issue in California. I cannot put your arm above your shoulder for 1 month, this is so the leads will heal properly in the heart. It is difficult to sleep for awhile, so use lots of pillows and try to get comfortable! You cannot not lift more than 2 pounds for about a week. I was cooking dinner etc the 2 days after surgery. If you have any more questions, contact me directly or visit Zaplife.org! ~guin mcgeeon10th@... wrote: > Hello! Boy, am I glad you people exist! I do not have an ICD > implant > but I am scheduled for an electophysiology study on December 7th and > my EP is talking about putting one in. I'm plenty nervous about > this, > especially how it will impact my life. I live alone (O.K. I have a > cat) without much in the way of a support net. How difficult was it > for someone in similar situation to prepare meals, bathe, go shop,etc? > I'm on S.S. Disability so going to work not an issue. I am male, late > 50's, live on 3rd floor (plenty of stairs)cardiomyopathy with bad > back. VERY NEW to computers so please excuse any mistakes. Any help > much appreciated!! > > > Please visit the Zapper homepage at > http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Dear Mcgeeon: I have IEM not your ailment but wanted to let you know I have gained 6 yrs I would not have had without the unit. Love, Jeannie need answers > Hello! Boy, am I glad you people exist! I do not have an ICD > implant > but I am scheduled for an electophysiology study on December 7th and > my EP is talking about putting one in. I'm plenty nervous about > this, > especially how it will impact my life. I live alone (O.K. I have a > cat) without much in the way of a support net. How difficult was it > for someone in similar situation to prepare meals, bathe, go shop,etc? > I'm on S.S. Disability so going to work not an issue. I am male, late > 50's, live on 3rd floor (plenty of stairs)cardiomyopathy with bad > back. VERY NEW to computers so please excuse any mistakes. Any help > much appreciated!! > > > > Please visit the Zapper homepage at > http://www.ZapLife.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Guin: Thanks for the response. I feel better knowing I'm not reliving a Startrek episode "where no man has gone before". I appreciate the practical comments about the pillows;because I have symptomatic heart failure, I use several pillows now. I don't drive because I don't have a vehicle and its just as well, I have some problems with lightheadedness and wouldn't want to jeopardize the safety of others. I live in a major midwest city with an excellent transportation system, so I get around most places I would like to go. It sounds like (IF they go ahead with a ICD) I need to prepare in advance for several days of very limited activity. I have a strong feeling if they don't install one now they will sooner or later. Thanks for your help. The one thing I would miss is picking up my cat. She weighs 13 lbs! Guin Van Dyke wrote: Hi; There is a great support Board with a great group of folks at www.zaplife.org - check out the newsletter, chat times and most importantly the BBS - that is where everyone posts questions and answers. A great group of people, implant atients, caregivers and nusres! I was 40 when I ws implanted 14 mos ago, I had mine implanted under the muscle which is a much harder recovery... But I was driving 2 days later - I think that had to do with my age and living in a rural area. Some people, depending on the state they live in, cannot drive for 6 mos! I have never lost conciosness, so that ws not an issue in California. I cannot put your arm above your shoulder for 1 month, this is so the leads will heal properly in the heart. It is difficult to sleep for awhile, so use lots of pillows and try to get comfortable! You cannot not lift more than 2 pounds for about a week. I was cooking dinner etc the 2 days after surgery. If you have any more questions, contact me directly or visit Zaplife.org! ~guin mcgeeon10th@... wrote: > Hello! Boy, am I glad you people exist! I do not have an ICD > implant > but I am scheduled for an electophysiology study on December 7th and > my EP is talking about putting one in. I'm plenty nervous about > this, > especially how it will impact my life. I live alone (O.K. I have a > cat) without much in the way of a support net. How difficult was it > for someone in similar situation to prepare meals, bathe, go shop,etc? > I'm on S.S. Disability so going to work not an issue. I am male, late > 50's, live on 3rd floor (plenty of stairs)cardiomyopathy with bad > back. VERY NEW to computers so please excuse any mistakes. Any help > much appreciated!! > > > Please visit the Zapper homepage at > http://www.ZapLife.org Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Jeannie, Thanks for the insight. My cardiologist told me more cardiomyopathy patients die from sudden malignant arrythmias than from the developing heart failure itself. I guess this is cutting age therapy, implanting ICD's before a major first event in high risk individuals. I understand they hope to clarify where I fall with the EPS. One thing, excuse my ignorance but what does IEM stand for? Curt oplbeach wrote: Dear Mcgeeon: I have IEM not your ailment but wanted to let you know I have gained 6 yrs I would not have had without the unit. Love, Jeannie need answers > Hello! Boy, am I glad you people exist! I do not have an ICD > implant > but I am scheduled for an electophysiology study on December 7th and > my EP is talking about putting one in. I'm plenty nervous about > this, > especially how it will impact my life. I live alone (O.K. I have a > cat) without much in the way of a support net. How difficult was it > for someone in similar situation to prepare meals, bathe, go shop,etc? > I'm on S.S. Disability so going to work not an issue. I am male, late > 50's, live on 3rd floor (plenty of stairs)cardiomyopathy with bad > back. VERY NEW to computers so please excuse any mistakes. Any help > much appreciated!! > > > > Please visit the Zapper homepage at > http://www.ZapLife.org > > Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 Dear Curt: I have Idiopathic electrical Malfunction resulting in Sudden Cardiac Death. That jargon means I get a power surge then short my heart out. Yes, malignant arrhythmia but no heart damage yet. I have had 155 shocks so I'm lucky to have my unit working for me. I was 42 when it hit. Love, Jeannie need answers > Hello! Boy, am I glad you people exist! I do not have an ICD > implant > but I am scheduled for an electophysiology study on December 7th and > my EP is talking about putting one in. I'm plenty nervous about > this, > especially how it will impact my life. I live alone (O.K. I have a > cat) without much in the way of a support net. How difficult was it > for someone in similar situation to prepare meals, bathe, go shop,etc? > I'm on S.S. Disability so going to work not an issue. I am male, late > 50's, live on 3rd floor (plenty of stairs)cardiomyopathy with bad > back. VERY NEW to computers so please excuse any mistakes. Any help > much appreciated!! > > > > Please visit the Zapper homepage at > http://www.ZapLife.org > > Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 Hello mcgeeon10th@... !! Chin up! Other than driving I haven't heard much about restrictions which you take on after implantation. With the exception of those you had prior to surgery of course. I have had my zapper since Nov. of 96 and do just about what I want to. I hike, hunt go camping and canoeing, etc. If you shoot a rifle or shotgun consider having your defibrilator implanted in the opposite shoulder from the one you mount your firearm to. Any hard contact on my buddy is like slamming your finger in the door, so don't let your grandson poke you in the chest with his finger. He will be the only one laughing at grandpa's funny face. Karl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Dear lynn,I am surprised you have not received several posts yet, has been acting up lately,days to weeks have passed since posts have appeared.My son is systemic and the risk for eye inflamation is like 1% but due to this wonderful group of people I have learned a whole lot.You will get many posts from other parents that have more experiance in this,but since it has been several hours since I first read this post I will give you some basic info.Yes ,I am sure it is scarey,if I had to guess your daughter has pausi JRA and is ANA positive,which means she is more likely for eye inflimation.Your daughter needs to see an opthimoligist every 3 months.If left untreated it can lead to permenant damage.They treat it with steroid drops.Most times as long as you get regular exams everything is ok.Some children have eye problems even when the arthritis is under control.You may have to administor differant drops for long periods of time.Just a little advice for such a young child.You may have to try giving an adult drops of visine or saline to let your daughter watch.My son went through a few boughts of pink eye because of hatred of the drops. when his sister age 5 caught it she would hold her lower eye lid down while laying down and her brother got jelous,after that he did the same thind and we finally got it taken care of.Whatever you do be persistent,it is very hard,but she will get used to the drops.Try explaining in basis words that she will understand,It may sound cruel,but I have got to tell my son that he has to take a tums a day to prevent his bones from getting brittle and breaking due to prolonged use of steroids.He does not like them at all,but just like everything else he will get used to it and accept it as part of his daily routine.It is very hard to take care of a chronicly ill child,but remember God does not give us anything we can not handle.We all have old souls,a young soul couldnt handle it.We all feal terrible thinking we past this on to our children,but most likely our special children will grow up to have a great impact on others.Becki and 3 systemic lyn2574 wrote: > My name is Lynn Glosson and I have a 3 year old with jra,I took her > to the eye doctor today and they said her eyes were inflamed and this > really scared me.I was wondering if anyone could offer any help.Thank > you. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Lynn Glosson Hello Lynn, eye inflammation is not uncommon with jra. Did the doctor say whether it was iritis of Uveitis? I have had both of those though my 34 years of living with jra. Its bothersome to live with, but so long as treated properly, she'll be fine. I know for a 3 year old it is hard to explain to them. Get her some sunglasses to wear, it will help reduce the suns irritation of her eyes. I hope that helps. prayers and good thoughts. Rusty Limbs On Fri, 05 Apr 2002 23:01:21 -0000 "lyn2574" <Lyn2574@...> writes: My name is Lynn Glosson and I have a 3 year old with jra,I took her to the eye doctor today and they said her eyes were inflamed and this really scared me. I was wondering if anyone could offer any help. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 Lynn, Don't panic. I too have a three year old (or she'll be three in May) with Still's. She has been to the eye doctor with inflammation. All from this great disease. No need to start worrying. It all comes with the territory. With still's you get inflammation everywhere. You can have it in any thinkable place. Just make sure to keep going back to the dr, every 6months for checks. You do need to watch it, but it is nothing to panic about. Don't feel scared, I learned the hard way. My daughter wakes in the middle of the night holding her eyes, screaming that they hurt. A cool wet washcloth seems to do wonders for her. It at least comforts her for some odd reason. I wish you all the best. Lot's of luck. Love to all, Casaria (mom) & Tasie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Lynn- My daughter just turned 3 and she was diagnosed with iritis, a form of uveitis, a few of months ago. I understand the panic. I do think you should be concerned (but not panicked) and find out all you can about the condition, because it can be very serious -- treated or untreated. I suggest you check out www.uveitis.org, and particularly www.uveitis.org/Enhanced/Md_info/md_JRA.htm. Do you know what type of uveitis your child has? There are different types depending on what part of the eye is swelling. Certain types are harder to treat than others, e.g. posterior as opposed to anterior swelling. Also, you should find out what level of swelling is present. It's rated by the number of white spots visible, e.g. 1+. According to the research I've read, uveitis is especially difficult to control in kids with jra, and there are high percentages of jra patients who develop serious vision problems from cataracts (50-70%) to glaucoma to permanent vision loss (actually total vision loss only occurs in about 12% of cases). The first line treatment is steroid drops and usually drops to dilate the pupils. Long term use of the steroids can cause cataracts and glaucoma, too. They can also do injections into the eye. Oral steroids may be tried if that doesn't work. Methotrexate or other immunosuppressive medications can also be used. Higher dosages than is used to treat arthritis may be necessary. There do appear to be those on this list who have had uveitis sporadically for years with no serious ill effects. So that's good news. My daughter's inflammation was controlled quite quickly, although there's a very long weaning process from the steroid drops. She just stopped taking them about a week ago and we go back in a week to make sure she didn't flare again. She is on methotrexate for her arthritis, and we've recently increased the dosage, so I believe that is helping. Although the methotrexate is a relatively new addition to 's medication, and I wasn't thrilled about starting it, I am now more convinced than ever it was necessary. I'm still in the learning process myself, and to me, the possibility of a loss of vision is too horrible to contemplate. I'm trying to find out all I can so I won't find myself in the position of having to address a vision problem that's already occurred, but can instead prevent one from happening. Sorry for rambling on. Good luck, and let us know how things are going. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Diane, I do hope that 's upcoming eye exam goes well. You guys will definitely be in our thoughts. I must say, too, that your thoughts (condensed below) express exactly how I feel about our experiences with JRA. Thanks for putting it, so eloquently, into words : ) Aloha, Georgina I'm still in the learning process myself ... I'm trying to find out all I can so I won't find myself in the position of having to address a ... problem that's already occurred, but can instead prevent one from happening. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 I want to thank everyone who offered there help about my daughters eyes.She is doing alot better,all the spots and inflamation is gone.Once again thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 So glad to hear thank Lyn, hugs for the little cupie doll!!! Rusty Limbs On Wed, 17 Apr 2002 16:39:56 EDT Lyn2574@... writes: I want to thank everyone who offered there help about my daughters eyes.She is doing alot better,all the spots and inflamation is gone.Once again thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 , I know you are very concerned right now. I am so sorry that you and the girls are having to go through all of this. I have two children both that are adopted so before we even had children I was having my own health problems with infertility and surgeries and many medical visits. We adopted both of our children as newborns and assumed they were normal healthy babies. Both proved us wrong on the healthy but as normal and ornery as all kids. My daughter was found to have a liver cyst at 1 week old and we had to do surgery to remove it, We were told that she had a good chance if they did not get all of it that she would later have Cancer. They hoped that they got it all. She also has had severe sinus infections that have required several surgeries with high fevers every month for 18 months. We thought we knew everything about her sweet little body and then she was found to have Kidney reflux with3 kidneys and 3 ureters. is 12 now and doing very well. She plays baseball, makes good grades, has lots of time on the phone and drives me crazy as a preteen 12 going on 16. We would have never thought at the time she would have made it this far. But she did and we are attempting to make each day a day to remember. Then our son Lucas who has PID and is 6 years younger than our daughter came along and again he was supposed to be a normal newborn. He had an infection at 1 week and the rest is history. He is now mostly well but we have been on many roller coasters trying to figure out what is wrong and put a name on the picture we are seeing. We do not have the genetic information to determine that it something to do with our genes being passed down. It is like detective work because CVID is a catch all when our kids do not fit into all the other categories. Duke is a very reputable Hospital. Before you go it might be worthwhile to call the Social Work office or Chaplains at Duke and ask if someone can talk to you. Duke will put the pieces of the puzzle as best as they can to see the whole picture with your girls. There are many pieces of the puzzle but two very important ones are there physical health as well as their and your emotional health to be able to work together and help them grow and become strong within themselves. What you have described as problems are what I have seen throughout this group in each of our kids. Variations are very few. Most of our kids have persistent sinus infections, pneumonia's, asthma, they either have some developmental delays or not. They may have Sensory Integration issues. Behavioral issues, ear infections, bladder or kidney infections, bowel infections or irritations that cause diarrhea or tummy aches and keep our kids from eating and therefore they do not thrive. They are prone to severe infections and allergies, but many times we can hold them off with good skills that we develop by knowing what triggers them as well as quick persistent medical care. Antibiotics are helpful but can also cause problems with the gut or allergies. IVIg has been wonderful but is defiantly not the cure-all. It has side effects, is given to rapidly or in too low or too high a dose at the wrong schedule. What you need to know is that Duke is a regional research center. They put the Research together and then attempt to see what will help your daughters the most. It sounds like you could use some help with the emotional side of all of these challenges. The girls may need to talk to a counselor as well so that they can come to terms with how there lives are and grieve the losses and look at each day as a new day. If they are not eating then they are very weak if they are weak then they are probably not feeling like doing anything. There are things in life that we can change and others we need to live with and make the best day to day moments out of it. Our fear and attitudes make life the most challenging. We all can have joy in the worst of circumstances if we can atleast look for it in the silver lining. Joy, laughter and fun are what cause healing both emotionally and physically. This has been proven over and over again with Cancer patients. I know it does not feel like you should be laughing and having fun but I have learned through my kids that I need to set the tone and they will lead. You will need to get some help with this from a counselor or Social worker. You do not want to lose this time even for one day. No matter what the outcome is at Duke make the most of the ride over. Find something each day to help the girls have fun and make memories. Make banana splits with lots of sprinkles whether they eat them or not, draw funny pictures or sad pictures, sing songs, turn off the TV and go for a ride to the mountains or the beach. As they move around they may become hungry and with every bite they may be able to take just one more bite. I tell you these things because I have been there and have found that I just little old me can make a big difference in how our kids see the world even if there world is full of pain and disappear. Please do not take this as a criticism in any way. I know how hard it is when you have such overwhelming fear and watch your children suffering. Just do one of these things today and I think you will see a ray of sunshine gradually emerging out of the clouds. We are all here to talk and I have found this group an incredible support even I mostly just listen. BARBIE (Lucas 6, CVID, hypogeum, dysgamm, Sensory Integration Dysfunction, Bipolar, Etc.) 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Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 > > Hello to all, > > This is and I have some questions andwas hoping that someone could help me with the answers. As you all know my daughters and Kelsey both have CVID and have an appointment with Dr. Meyers at Duke. Well I was wondering if anyone out there could kinda tell me what to expect out there. I am really nerves about this, because this past Friday at the girls immno. appointment they made it sound like the girls where going out there to be picked apart. They said that seeing the immno. out there was just a shoe in the door. I am really scared. They have not gained any wieght now in 2-1/2 yrs. The girls do have hypoglacemia Will Duke call in other doctors if they think that another doctor needs to see them? Are the doctors and nurses out there friendly and good with kids? and Kelsey have several other things going on besides CVID. They both have RAD (reactive airway disease), Ketotic hypoglycemia, failure to grow and thrive, GERDS, and the doctors say that they are malnurished, was also born with Vesicerretual Reflux on both sides of her kidneys If anyone has any suggestions or can help me please do. Thank you Chirstina. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hi ! We have been down this road with Blake. Yes getting the Immuno. Dr. ar DUKE IS " just getting your foot in the door " . We took Blake there in 1998. He too was failure to thrive. He had not gained an ounce in 3 yrs. He had to have a NG down his nose for 8 months because he REFUSED to eat orally.He still did not gain weight. They eventually placed him on TPN. But the Dr. at DUKE did see that he needed it. We go into DUKE through a Gastroenterologist, Dr. Treem. He did a lot of work with Blake. While there we aited very patiently for the Immuno. to come and do a work up on Blake. That was our main reason for going, but we also nneded to find the source of Blake's weight problem, sooooo, we took Dr. Treem. After Blake was found to have a bad bacterial infection, then and only then, were we " quickly " graced witht the Immunologists appearance. Boy were we glad. Blake was already showing signs of the bacteria on the outside of his body. He got this bad rash and itched form head to toe. Laurie Myers was in charge of Blake's immuno. follow up. She was the one that comfirmed his problem. Because Blake had gone soooooo long before beoing properly treated for his CVID and T-Cell Diff. it caused the bacterial infection to start manifestion on the out side of his body as well. While there he was seen by the Pulmonology people. Blake was born Extremely premature so he has what is called Asthma with Bronchopulmonary Dysplasia. We thought that this was a problem of prematurity. Surely he had out grown it. Well. from their stand point, " Not by a long shot! " They did full lung CT's on him and were very horrified by what they saw. His lungs were very " sick " . We were told that the blood infections that he had endured through the years had done so much damage that it was to the place of irrepariable. Blaek was even followed by the Infectious Disease people there. They came suddenly when the found out the name of the Bacterial Infection. Serratia. This is mostly a Hospital germ. So they concluded that he probably " caught " this during one of the many tests the ran on him. And then because Blake's blood sugar was so unstable the endocrinologist came in. Mostly because. they knet that mom was Type one Diabetic and needed to take meds for this. Sooooo, they kept a check on this! So, yes you will be seeing all the Drs. that are involved with EVERYTHING that is " wrong " with the girls. But this IS good. This way you can get full blown coverage and answers. The Drs. were wonderful with Blake and the nurses anr absolutley wonderful too. We had one nurse that tended to him, when he had come back from a test he was coughing his head off. He went into a full blown asthma attack. Well she noticed that his NG Tube was lpuued out more than usual. She immediately ordered a Chest X-ray. And the results. When the person put his NG Tube in she forgot to make sure it was in the right area, that it was in his lung! If it had not been for her quick thinking, it really could have been bad. He was sent back to have the tube removed and replaced correctly. You will be made to feel comfortable there. We live 7 hrs. away. The Gastro. even made arrangements for us to have a place to stay and get rest from being with Blake around the clock. We were there for 3 weeks. But came back very satisfied with the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 , Hello, this is Sandi. You have received some excellent advice from the other ladies!! I just wanted to add in that you should always listen to you gut. When you feel a " red flag " pay attention to it. Don't let any Docs persuade you otherwise. Your Mother's instinct will take you a long way in the road to wellness. Hang in there. Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 , I have two boys with Shwachman-Diamond syndrome and your daughters' symptoms sound a lot like my boys. has SDS and CVID... I know someone with a daughter that Has CVID that sees doctors in the DUKe area..she lives in Apex, NC. I live an hour from there in Danville, VA. Have they ever tested your children for fat malabsorption? That is a symptom of SDS (of course it is also a symptom of CF adn celiac) what abotu CBCs? Have they ever done those on your daughters? i wish I could help you-- there could be a lot going on with them.. hopefully the specialists at Duke can figure it ou an give you answers. God Bless, Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 xannax is the problem it may even have stopped working as you can reach tolerance quickly believe my i happened tp me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 how does it feel when you take one do you feel anything anyway they are nasty drufs you should come off them they eventually stop working they did for my i am so depressed now i camt work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 How do you know it's not the switch from Klonipin to Xanax that is causing the problem? On Feb 1, 2004, at 11:18 PM, lisaspeechpath wrote: > My husband suffers from anxiety/panic disorder..as well as > depression...he has had this diagnosis for 6+ years. My husband > switched from Celexa and a minimal dose of Clonipin (sp?) to Lexapro > and Xanax after 6 years on the others. This was done because he > decided (finally) to seek counseling for increased depression (we > moved and primary care physicians just kept refilling the > scripts...) and the new doc recommended tryng this new drug because > My husband did not like the side effects of Celexa..namely the fact > that he was hot all the time...not something welcome in Florida) > Anyway.. 3 weeks after starting the Lexapro/Xanax combo he had MAJOR > anxiety attacks (something he never had on Celexa..ever) We were on > vacation at the time and it effectively destroyed our vacation and > christmas with family. the docs solution was to double the dose of > laexapro and xanax xr..and to give him regular xanax for > breakthroughs....everything seemed so-so until the other day when he > started having breakthroughs again..moderate ones..enough to derail > several evening and weekend plans. > He put in a call to his doc who (hopefully) will call first thing > tomorrw... > I just wanted to know what you all think..I am only an observer but > I think the medicine isn't working..he went from no attacks on > Celexa to moderate-major problems. > Has anyone out there had this when switching to Lexapro?? > thanks in advance > lisa > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 > How do you know it's not the switch from Klonipin to Xanax that is > causing the problem? > > I don't...but he was only on 1/4 pill of Klonipin/day. That is an extremely low dose..his doctor said it may not have even registered much in his bloodstream. My husband also thinks the Xanax may be the culprit..but it is hard to tell when you have 2 new drugs i am just looking for help...I don't know anyone on both of these meds. Quote Link to comment Share on other sites More sharing options...
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