Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 * Hi Deanna, welcome to our list too! My son is LJ and he is 6 1/2 years of age and GFCF for almost 1 year and 2 months and he has a DX of autism. You mentioned the natural laundry products, I will just be starting that. I got a flyer from Miss Robens in the mail today stating they'll be carrying them and that they are GFCF. They have an all purpose cleaner, dishwashing liquid, liquid hand soap and a laundry soap. Sorry I can't answer any of your questions thoguh. on Long Island New York * ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Hey that's great about Miss Robens carrying these products. I was wondering about companies like Shaklee or Watkins...hum. Looks like more searching in my future. Nice to be on the list. Deanna in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Hello and welcome to our group. Yes, some of the children are put on supplements. please ask the doctor which is best for your grandchild. amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Gran My son is 2yo and just recently diagnosed with CF. He spent alot of his first 2 years sick and very underweight. Our CF Dr. put him on the pediasure (if your daughter has WIC she can get it for free) and he also gets a calorie drink from the makers of Ultrase (the enzyme he is on). In the 2 weeks since he has been on the enzymes and taking these 2 drinks he has gained 2 pounds. If your granddaughter is on the Ultrase tell her mom to talk to CF dr. about the scandishakes. They have app 400 calories per 8oz drink. With the combonation of both she should start gaining weight. Christal Mom of Tristan 6ncf, Zack 2wcf and Ki'a 4monthscf? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Gran My son is 2yo and just recently diagnosed with CF. He spent alot of his first 2 years sick and very underweight. Our CF Dr. put him on the pediasure (if your daughter has WIC she can get it for free) and he also gets a calorie drink from the makers of Ultrase (the enzyme he is on). In the 2 weeks since he has been on the enzymes and taking these 2 drinks he has gained 2 pounds. If your granddaughter is on the Ultrase tell her mom to talk to CF dr. about the scandishakes. They have app 400 calories per 8oz drink. With the combonation of both she should start gaining weight. Christal Mom of Tristan 6ncf, Zack 2wcf and Ki'a 4monthscf? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Just to let you know, the Scandishakes have 600 calories when mixed with 8 oz. of whole milk, not nonfat or lowfat, but whole milk. Which is exactly what our kids need for weight gain and nutrition. Amber Nick's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Just to let you know, the Scandishakes have 600 calories when mixed with 8 oz. of whole milk, not nonfat or lowfat, but whole milk. Which is exactly what our kids need for weight gain and nutrition. Amber Nick's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 My daughter had the distended belly problem too. It should improve with the use of enzymes. Now she has the flattest tummy around this house! She is a swimmer. Yesterday she competed in 5 events at the University of Buffalo. He relay team came in third and she did her best times ever in freestyle and breast stroke. Yeah! Hugs - Kathy G. Mom to age 8 w/ CF New to list > > > Hi everyone, > > I am fairly new to this list. I have three children ages 6, 4 and > 1 1/2. My youngest has CF and was diagnosed when she was 14 days old. > Currently she does nebulizer treatments twice a day and cpt twice a > day seven days a week. She is 32 inches and just weighed in at 24 > pounds. She has two copies of delta f508 genes. > > My question is, her coloring is always pasty looking, her stomach is > always extremely distended. Does anyone else have this problem. > > Thanks, > > Jenna > > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Hi Jenna, Welcome to the list. I hope you like it. I'm sorry to hear your little one has CF. About the pasty look, has she had her iron checked? It could be anemia. and the distended stomach is very common. My daughter had it pretty bad too. The docs told us to try giving her Tums and it helped some, seemed to make her less gassy. I hope this helps a little. My daughter is 19 and she was diagnosed when she was 8 months old. She is doing very well, she is in college and is enjoying it. take care, M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 oH gosh I just read this and it sounds like she just now has the pot belly! She doesn't have it any more, it actually went away years ago when she was about 7 or 8. Sorry! she would be so embarresed if she read that about being gassy!LOL love, M Re: New to list > Hi Jenna, > Welcome to the list. I hope you like it. I'm sorry to hear your little one > has CF. About the pasty look, has she had her iron checked? It could be > anemia. and the distended stomach is very common. My daughter had it pretty > bad too. The docs told us to try giving her Tums and it helped some, seemed > to make her less gassy. I hope this helps a little. My daughter is 19 and > she was diagnosed when she was 8 months old. She is doing very well, she is > in college and is enjoying it. > > take care, > M > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 > My son was diagnosed at 26 months. At the time of his diagnosis he was only 24 pounds. So to me your child seems like they are a good size. Now that you know what is wrong with her she will start to put on the weight. Zack gained 2 pounds the first two weeks on his meds. He is now 27 pounds at 28months. I know the diagnosis is hard at first, but the important thing is to make sure she takes her meds. and she will do good. > > Date: 2003/03/29 Sat PM 10:08:28 EST > To: cfparents > Subject: New to list > > PROUD TO BE A SOLDIERS WIFE Christal mom of Tristan 6ncf, Zack 2wcf & asthma, Ki'a 4mthsncf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Hi Jenna, My son , was diagnosed at around the same time as your child. He had meconium ileus. He is now 14 months old and weighs around 24 pounds. His stomach is almost always full. Not long after I notice that his stomach is full, he has a giant poop. Boy, do they smell. You must be busy like I am. is on the Nebulizer also, twice a day. He just got taken off of his antibiotics, his throat cultures came back clear for the last 3 visits at the clinic. Where do you live? Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 2 yrs. wocf, Matty 1 yr. wcf New to list Hi everyone, I am fairly new to this list. I have three children ages 6, 4 and 1 1/2. My youngest has CF and was diagnosed when she was 14 days old. Currently she does nebulizer treatments twice a day and cpt twice a day seven days a week. She is 32 inches and just weighed in at 24 pounds. She has two copies of delta f508 genes. My question is, her coloring is always pasty looking, her stomach is always extremely distended. Does anyone else have this problem. Thanks, Jenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 hello to all. I thought i would introduce myself properly before giving any advice. I am the mother of three beautiful girls 6,5,and 4 years old. My 6 y/o and 4 y/o have CF. My 6 y/o was diagnosed when she was 4 months old. She had been sick for the whole 4 months with pnemonia,etc. That length of time did a job on attacking her lungs. She now takes 7 breathing treatments a day, steroids, plus numerous amounts of antibiotics and enzymes. It's hard to get it all in with her going to school but we do! I would never take the fun of going to school away from her. She goes to a small school and they all know she has cf. She is treated know diferent than any other kid in the school, except for when a coughing spell comes, than the school secretary freaks. My 4 yr old does very well, she has more belly problems than anything. My 5 yr old does is greatly effected, it is hard for her to understand why they are always so sick and why sometimes she has to stay with mammaw or daddy while i stay with her sisters in the hospital. We try to switch off on weekends but it doesn't seem like enough. When we are at hope she is constantly doing things do get in trouble. Some say it is for attention, but I make it a point to always give her special time with me everyday. Any suggestions on helping her would be wonderful. I have been a chairperson for Great Strides for more than 5 years now. I really enjoy fundraising. Anyone who has any ideas on a fundraiser or who may need one let me know. I do not get paid but my pay day will come when a cure is found for CF! If you are interesting in volunteering in your area contact the CFFoundation or log on to www.CFF.org. I hope to make lifetime of friends in this group. Sincerely, Maze Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 - We had a terrific wrap-around event on Friday for the CFF. Just a simple bake sale and basket raffle. We raised $758.00 from 8 - 3 PM!!! I was so excited. We held it at the local hospital. There are always hungry docs and nurses! I am a GREAT STRIDES chairperson to. Let me know how things go. Kathy G. Mom to 8 w/ CF. Re: New to list > hello to all. I thought i would introduce myself properly before giving any > advice. I am the mother of three beautiful girls 6,5,and 4 years old. My 6 > y/o and 4 y/o have CF. My 6 y/o was diagnosed when she was 4 months old. > She had been sick for the whole 4 months with pnemonia,etc. That length of > time did a job on attacking her lungs. She now takes 7 breathing treatments > a day, steroids, plus numerous amounts of antibiotics and enzymes. It's hard > to get it all in with her going to school but we do! I would never take the > fun of going to school away from her. She goes to a small school and they > all know she has cf. She is treated know diferent than any other kid in the > school, except for when a coughing spell comes, than the school secretary > freaks. My 4 yr old does very well, she has more belly problems than > anything. My 5 yr old does is greatly effected, it is hard for her to > understand why they are always so sick and why sometimes she has to stay with > mammaw or daddy while i stay with her sisters in the hospital. We try to > switch off on weekends but it doesn't seem like enough. When we are at hope > she is constantly doing things do get in trouble. Some say it is for > attention, but I make it a point to always give her special time with me > everyday. Any suggestions on helping her would be wonderful. > I have been a chairperson for Great Strides for more than 5 years now. I > really enjoy fundraising. Anyone who has any ideas on a fundraiser or who > may need one let me know. I do not get paid but my pay day will come when a > cure is found for CF! If you are interesting in volunteering in your area > contact the CFFoundation or log on to www.CFF.org. > I hope to make lifetime of friends in this group. > Sincerely, > Maze > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 congrats!! we all thank you for all your doing . You should be so proud. LOVE & HUGS, grandmomBEV Re: New to list - We had a terrific wrap-around event on Friday for the CFF. Just a simple bake sale and basket raffle. We raised $758.00 from 8 - 3 PM!!! I was so excited. We held it at the local hospital. There are always hungry docs and nurses! I am a GREAT STRIDES chairperson to. Let me know how things go. Kathy G. Mom to 8 w/ CF. Re: New to list > hello to all. I thought i would introduce myself properly before giving any > advice. I am the mother of three beautiful girls 6,5,and 4 years old. My 6 > y/o and 4 y/o have CF. My 6 y/o was diagnosed when she was 4 months old. > She had been sick for the whole 4 months with pnemonia,etc. That length of > time did a job on attacking her lungs. She now takes 7 breathing treatments > a day, steroids, plus numerous amounts of antibiotics and enzymes. It's hard > to get it all in with her going to school but we do! I would never take the > fun of going to school away from her. She goes to a small school and they > all know she has cf. She is treated know diferent than any other kid in the > school, except for when a coughing spell comes, than the school secretary > freaks. My 4 yr old does very well, she has more belly problems than > anything. My 5 yr old does is greatly effected, it is hard for her to > understand why they are always so sick and why sometimes she has to stay with > mammaw or daddy while i stay with her sisters in the hospital. We try to > switch off on weekends but it doesn't seem like enough. When we are at hope > she is constantly doing things do get in trouble. Some say it is for > attention, but I make it a point to always give her special time with me > everyday. Any suggestions on helping her would be wonderful. > I have been a chairperson for Great Strides for more than 5 years now. I > really enjoy fundraising. Anyone who has any ideas on a fundraiser or who > may need one let me know. I do not get paid but my pay day will come when a > cure is found for CF! If you are interesting in volunteering in your area > contact the CFFoundation or log on to www.CFF.org. > I hope to make lifetime of friends in this group. > Sincerely, > Maze > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Welcome , Keep up the great work!!!! Deana Mom to 12 ncf and 6 wcf Re: New to list hello to all. I thought i would introduce myself properly before giving any advice. I am the mother of three beautiful girls 6,5,and 4 years old. My 6 y/o and 4 y/o have CF. My 6 y/o was diagnosed when she was 4 months old. She had been sick for the whole 4 months with pnemonia,etc. That length of time did a job on attacking her lungs. She now takes 7 breathing treatments a day, steroids, plus numerous amounts of antibiotics and enzymes. It's hard to get it all in with her going to school but we do! I would never take the fun of going to school away from her. She goes to a small school and they all know she has cf. She is treated know diferent than any other kid in the school, except for when a coughing spell comes, than the school secretary freaks. My 4 yr old does very well, she has more belly problems than anything. My 5 yr old does is greatly effected, it is hard for her to understand why they are always so sick and why sometimes she has to stay with mammaw or daddy while i stay with her sisters in the hospital. We try to switch off on weekends but it doesn't seem like enough. When we are at hope she is constantly doing things do get in trouble. Some say it is for attention, but I make it a point to always give her special time with me everyday. Any suggestions on helping her would be wonderful. I have been a chairperson for Great Strides for more than 5 years now. I really enjoy fundraising. Anyone who has any ideas on a fundraiser or who may need one let me know. I do not get paid but my pay day will come when a cure is found for CF! If you are interesting in volunteering in your area contact the CFFoundation or log on to www.CFF.org. I hope to make lifetime of friends in this group. Sincerely, Maze Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Welcome Tiffeny! I have a almost 21 year old son Nick w/o CF and a 19 year old daughter w/cf. We're so happy to have you join in. It sounds like yours have a lot of GI problems. used to have a lot of blockages but we found out she didn't need enzymes and shes been doing fine in that area ever since! We are from Placentia Ca (Orange County) and look forward to hearing more from you. love, M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Hi Tiffeny, welcome to the list! That's great news about Whitney and I hope Paige does better soon! May I ask where your girls have been on the growth chart when the docs decided to place the g-tube. Peace Torsten > Hello! My name is Tiffeny and I live in Kentucky. I have 2 beautiful > girls with cf. The oldest is Whitney and she is 9. She had a g- tube > placed this past August and has gained around 11-12 lbs!!!! My > youngest is 7 and has had a g-tube for about 3 years now and got a > port placed this past August. Whitney does great and Paige has a > little more trouble sometimes like now, up alnight coughing and is > currently on homebound until after spring break so we can do extra > treatments I am hoping it is just the allergy time again. I am > looking forward to getting to know you guys and also looking forward > to the xtra support!!! Once I get the hang of things I will post a > pic of my babies!! Bye for now and talk to you soon!!! > > Tiffeny > mom of 2 w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 In a message dated 4/2/2003 9:30:43 PM Central Standard Time, bud10tiff@... writes: > Tiffeny Hi I am a mom of two with Cf also they are 10 and 5 I also have a middle child that does not have CF so far my two with CF have not had any digestive problems but they do take enzymes. My girls were diagnosed when my oldest was 6 and my youngest was 1. This is a wonderful group you will meet a lot of people on her that will be great support for you and help you out with any questions you may need. I'm glad you found us!! Where do you live? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 In a message dated 4/3/2003 8:56:41 PM Central Standard Time, bud10tiff@... writes: > Tiffeny > You are so right about the over whelming part. Our first year was the toughest and I know my husband was going through a depression when we found out. Me!! I didn't have time to be depressed plus I had everyone her that helped me SO MUCH!!! I don't know what I would have done without everyone on this list. The other thing that helped me was knowing I only have 2 kids with CF at least I do have one kid that doesn't have CF. I could have had 3 and talking to Rosemary who has three has also helped me because it made me think OK I should have nothing to complain about Rosemary has to deal with 3 kids. There are also good with having more then one because at least our kids have each other and they know they are not different then anyone else because they have each other. I guess what I am saying you really have to look at the positive and not dwell on the negative our it will make you CRAZY!! and what Mom around here has the time to go CRAZYYYY!!! HMMMM Maybe I should go crazy then I could have time to myself!!! LOL!! Just a thought!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi Tiffeny, your post makes much sense to me. Fiona is also a tall and slender girl. She stays at the 90th percentile for height, but slowly declines on the weight chart. Docs are very hesitant with the g-tube here, but I'll keep it in mind. I'm 6'1 " and ten years ago I weighed 160 lbs too :-)) Peace Torsten, dad of Fiona 6wcf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Welcome Pat! I have 3 children 2 wcf 1 wocf. I understand your problem with the issues of guilt, frustration and at times jealousy on the part of the child wocf. Have you tried counseling for your son? Sometimes, I feel, it is easier to talk to someone outside the house and tell their true feelings and fears. This helps them unburden themselves and not lay it upon us who may seem to have so much to deal with already. My 8yold wocf sees our " family " therapist occasionally. She does not need it weekly, my 12 1/2 you wcf does but I do push her from time to time when I think she is headed for OVERLOAD! She gets it out and feels better. Meg New to list > My name is Pat ,I have two children Dakota 15 without c.f. and > 13 with c.f. I am new to the list and would like to ask for > some advice. Over the years while my daughters disease has got worse > our son has become harder to deal with . Sometimes he blames himself > because he does not have it, and other times he gets into trouble at > school over and over and his anger is starting to scare us. I know he > loves his sister but it has been tough for him to. My daughter gets > alot of attention when she is sick, and he gets left out , it has > even got to the point where we dont let people give her stuff unless > he is included . I think alot of it is my fault because I have > spoiled my girl and I am so demanding of him.......HELP.......... > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Welcome to the list Pat. I should have some advise for you as I have the same situation, my son is 2 years older than my daughter w/cf. But if he has ever felt any jealousy for her getting extra attention due to her cf he has pretty much kept it to himself. He is pretty much an introvert anyway, he doesn't share his feelings. is always trying to hug him and tells him she loves him, he won't say he loves her back but I know he does. She really just does it to annoy him, I guess it works. Other than that they get along well and they pretty much always have. Maybe if were sicker it would be different. But she has had her share of hospitalizations and home IV's. Nick likes the home IV's because he likes to play with the used syringes ( needleless of course). Anyway, its been a long time since we did home IV's, so he has probably outgrown that. I think I am rambling. Anyway, I don't know if this helps but I wanted to welcome you to the list and I do symphasize with you. love, M mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 Hi Pat!!! I'm Katy and I am also new to the list. I also have two children, a 4 year old son (Austin) w/o CF and a 10 month old daughter (Piper) w/CF. I have started noticing lately that Austin is getting harder to deal with also. I too am demanding of Austin even though he is only 4, he has had to grow up a lot since Piper got sick. I also have a fiftteen year old brother, and he is getting hard to deal with also, I think that it is because he is a 15 y/o boy, and those dang hormones....... : ) You said that your daughters disease has gotten worse, in what way? I hope that it is nothing too serious. How have you dealt with her having CF? I guess I am still in the process of letting it all sink in (Piper was diagnosed in November). Rest assured that your son will be fine, but maybe you should try to do something special just for him. I know that most 15 y/o boys aren't too thrilled about hanging out with mom, but deep down they really are.... you know the whole macho thing...... Take care, and welcome to the list KatyMom of Austin 4 y/o w/o CF & Piper 10 months w/CF Pat wrote:My name is Pat ,I have two children Dakota 15 without c.f. and 13 with c.f. I am new to the list and would like to ask for some advice. Over the years while my daughters disease has got worse our son has become harder to deal with . Sometimes he blames himself because he does not have it, and other times he gets into trouble at school over and over and his anger is starting to scare us. I know he loves his sister but it has been tough for him to. My daughter gets alot of attention when she is sick, and he gets left out , it has even got to the point where we dont let people give her stuff unless he is included . I think alot of it is my fault because I have spoiled my girl and I am so demanding of him.......HELP.......... ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Hi! I am new to this list and fresh back from the DAN conference in DC. I have a 4 1/2 year old ASD son Joey who has been gfcf for about six months, but the science of this diet makes a lot more sense to us. I'm finishing up my spring semester of nursing school, so right now I'm just going to research this and get ready to implement it in about a month. Look forward to learning more and getting some assistance from those who have experience. My son is higher functioning, but right now his scripting is pretty intense. He seems to be at a plateau and I think this diet is what we need to get beyond it. Quote Link to comment Share on other sites More sharing options...
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