Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Hi Gail, has weighed 28 lbs. now for the last 15 months. He is doing great. Every once in a while when he gets sick he'll lose a pound or 2 but goes back up to his 28 lbs. The dr. at this point is not worried. Kelli....Mom to: , age 22, Greg, age 18, Twins: Set one- April & Ash age 15, Set two- (ds) & Tyler, age 4. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Gail, I am having the same problem.. with the weight. Landon weighs 20 lbs 4 ounces and hasn't gained in the last 6 months. He has lost some ounces. He is doing well with height. He is in the 50- 75 percentile. I know his doctor was somewhat concerned about his weight because he put him on Pediasure to put some weight on. I am hoping this is just from being so sickly this winter. He has also become very picky with foods so I just feed him what he will eat. He loves Honey Nut Cheerios and corn(not together) so if he won't eat what I have fixed. I'll try several times and then I'll just feed him something I know he will eat out of desperatio n. I truly hope this is a phase. Does Tara eat well? What is her heigth? How about ? Ashton is 24 lbs and 331/2 inches. Landon is 32 inches and 20.4 lbs so there is quite a difference there. I truly understand what you are going through. --- GVanHouten <rjvh@...> wrote: > hello fellow Mom's and friends! > I need some input, I'm worried about Tara. We had > the twins 15 month > well check last week, Tara at 9 months was 18 lbs, > at 12 month she was > still 18lbs, well at last weeks 15 month check, shes > 18.5lbs!!!!!! And > she hasn't gained in height either since 9 > months.........well the pedia > ordered a whole complete planel of lab work for her, > even urine, so I > need to get that done before I start asking all > these > questions.......but did anyone experience this with > their children??? I > started reading last night, could it be Celiac > disease??? Could this be > failure to progress??? I'm very worried! I know she > will and is smaller > than but she's not making any progress on her > own! Whats going on > > Gail.........Bobby 6, Jillian 3 1/2, and > Tara{Ds} 14 months > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Hi Gail, My was so small and still is. She was 13lbs at a year and stayed that way forever. Her height changed very slightly. They checked her thyroid and everything was fine. She eats great, but has always been very lean. She is now 3 1/2 and weighs about 25 lbs. She had her adenoids removed and tubes put in her ears in Feb. and I swear she she went from 21 lbs to 25 lbs almost overnight. She is still really skinny, but that is because she won't slow down. She eats more than her twin , and he weighs about 34 lbs at 3 1/2. I can't believe there is almost a 10 lb difference between the two. It was always about 4 lbs and 3-4 inches. Now the difference is beginning to spread! also had heart surgery right after birth, so I think cardiac babies can be skinnier. Good luck with all the tests, sometimes I think it just takes our kids longer to pack on the pounds. I hear this concern from alot of parents in my support group. Diane, Mom to Adam 8, and 3 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Hi Gail, Skylar did the same thing with her weight We did blood work & all was fine.... I heard some where that some children w/ ds dont grow as fast as others..The tests are a good idea thought to be sure everything is ok Lets us know Amber : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Hi! And Tara had no cardiac problems or surgery of any kind at birth! She did have tubes put in early March, no difference to her growth though! Funny thing though, she is progressing in gross motor, crawls all over the house, gets into draws and pulls all kinds of things apart, can sit and put round shapes in the shape sorter{new skill} and speech is very pleased with her " talking " and self feeding and drinking methods. Also, wayyyyyyy back while I was pregnant with Tara and and getting those monthly ultrasounds, the babies were ALWAYS neck -neck, in all aspects{another reason Ds was never deceted} hearing everyone's stories, did anyone suspect anything else more serious? Just wondering, IF her labs come back OK, how long do you " let her go " just hoping she starts to gain weight or height?? Gail.........Bobby, Jillian, and Tara > > Hi Gail, > Skylar did the same thing with her weight > We did blood work & all was fine.... > I heard some where that some children w/ ds > dont grow as fast as others..The tests are a good > idea thought to be sure everything is ok > Lets us know > Amber : ) > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > 1/5195/2/_/598201/_/960844441/ > ------------------------------------------------------------------------ > > http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 I think it is Celiac disease, I just have that gut feeling, hope I'm wrong. She has not gained anything in height or weight since the 9month well check....very scary, is 24lbs and in 90th percentile for height, so , they don't look like the same age for sure.Which is the least of my problems! Gail > > Gail, I am having the same problem.. with the weight. > Landon weighs 20 lbs 4 ounces and hasn't gained in the > last 6 months. He has lost some ounces. He is doing > well with height. He is in the 50- 75 percentile. I > know his doctor was somewhat concerned about his > weight because he put him on Pediasure to put some > weight on. I am hoping this is just from being so > sickly this winter. He has also become very picky with > foods so I just feed him what he will eat. He loves > Honey Nut Cheerios and corn(not together) so if he > won't eat what I have fixed. I'll try several times > and then I'll just feed him something I know he will > eat out of desperatio n. I truly hope this is a phase. > Does Tara eat well? What is her heigth? How about > ? Ashton is 24 lbs and 331/2 inches. Landon is 32 > inches and 20.4 lbs so there is quite a difference > there. I truly understand what you are going through. > > --- GVanHouten <rjvh@...> wrote: > > hello fellow Mom's and friends! > > I need some input, I'm worried about Tara. We had > > the twins 15 month > > well check last week, Tara at 9 months was 18 lbs, > > at 12 month she was > > still 18lbs, well at last weeks 15 month check, shes > > 18.5lbs!!!!!! And > > she hasn't gained in height either since 9 > > months.........well the pedia > > ordered a whole complete planel of lab work for her, > > even urine, so I > > need to get that done before I start asking all > > these > > questions.......but did anyone experience this with > > their children??? I > > started reading last night, could it be Celiac > > disease??? Could this be > > failure to progress??? I'm very worried! I know she > > will and is smaller > > than but she's not making any progress on her > > own! Whats going on > > > > Gail.........Bobby 6, Jillian 3 1/2, and > > Tara{Ds} 14 months > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 Gail, It is so interesting to me that one of the big concerns about children with DS as they get older is obesity when very early on they do what you Tara is doing. Although is only 11 months, he is atleast 22lbs and 29" tall. You have to understand that that is small for a child of mine. His twin (not DS) weighed in at 27lbs 8oz and 32" the other day when I took him in for an ear infection. Although I think he is doing very well, I can really see a diiference in how he developing physically. I really can't help but wonder if the DS just tampers with their metabolism in extremes. I sure understand your concern. I was concerned when my lost 4 oz in a month instead of gaining. Especialy because feeding at that point had become an issue and the reflux was becoming apparent. Once we got him on medication and worked on some of the feeding issues he has put on a bit. I think you are doing the right thing in having him tested. Peace of mind is important. Concerns like this are easier to deal with when you know they are not caused by illness or deficiency of some kind It is reassuring to me that if ever goes through a long period of not gaining that lots of other DS children have done the same and are still doing well. Tara sounds like she is very active and burning up lots of calories with her activity level too. The fact that she is doing so well physically in her skills is really encouraging to hear. It keeps me focused on the benefits of physical therapy and the special time we spend at home strenghthening their skills and development. Keep us informed of the results of her tests and how she is doing. Debbie-mom to , , , & -ds 11 months input please hello fellow Mom's and friends!I need some input, I'm worried about Tara. We had the twins 15 monthwell check last week, Tara at 9 months was 18 lbs, at 12 month she wasstill 18lbs, well at last weeks 15 month check, shes 18.5lbs!!!!!! Andshe hasn't gained in height either since 9 months.........well the pediaordered a whole complete planel of lab work for her, even urine, so Ineed to get that done before I start asking all thesequestions.......but did anyone experience this with their children??? Istarted reading last night, could it be Celiac disease??? Could this befailure to progress??? I'm very worried! I know she will and is smallerthan but she's not making any progress on her own! Whats going onGail.........Bobby 6, Jillian 3 1/2, and Tara{Ds} 14 months http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 Gail, Two of my friend's children have Celiacs and they were quite sick before being diagnosed. If I'm correct it is some type of allergy to wheat products. Everytime her little one w/DS would eat bread or the like he would have awful diarrhea and stomach aches. I believe he was about 2-3 years old when diagnosed. I do not know how old his sister (nda) was or the type of reaction she had to wheat but I think the loss of weight or failure to thrive would be accompanied/caused by vomiting or even more common severe diarrhea. BTW, once the culprit was eliminated from the diet all was and is going well. My had so much trouble gaining weight as an infant. We had him on a higher concentration of formula plus a glucose powder. He was born with a severe AVSD and he was very weak and could barely stay awake to feed. After his heart surgery his weight gain was still very slow. He was always about 3-5 lbs lighter than his twin brother, . Then he had T & A surgery this past March. He is now 1.5 lbs lighter than . Because of the larger tonsils and constant congestion he was so uncomfortable eating that he barely ate at meals and would not do well with a bottle. Now he wouldn't miss a meal and cleans his plate. He was 20 lbs 10 ozs. on his surgery date March 2nd. He is now 25 lbs. 8 ozs. Almost 5 lbs in 3 1/2 months. Bonnie from Long Island Mom to -10, twins and (ds)-2 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 Interesting! Tara is never sick like that. I emailed Dr. Leshin, he said to wait for the initial lab work to return, IF it's ok, then to screen for celiac deisease, IF that comes back ok also, then to have a nutricianist exam her caloric intake.........guess that's what I'll do, but getting her urine is very difficult, and I'm waiting to get that before we go to the lab! I'll keep everyone posted.......thanks! Gail.........BObby 6, Jillian 3 1/2, and Tara{Ds} 14months > > Gail, > > Two of my friend's children have Celiacs and they were quite sick before > being diagnosed. If I'm correct it is some type of allergy to wheat > products. Everytime her little one w/DS would > eat bread or the like he would have awful diarrhea and stomach aches. I > believe he was about 2-3 years old when diagnosed. > I do not know how old his sister (nda) was or the type of reaction she had to > wheat but I think the loss of weight or failure to thrive would be > accompanied/caused by vomiting or even more common severe diarrhea. BTW, > once the culprit was eliminated from the diet all was and is going well. > > My had so much trouble gaining weight as an infant. > We had him on a higher concentration of formula plus a glucose > powder. He was born with a severe AVSD and he was very weak > and could barely stay awake to feed. After his heart surgery > his weight gain was still very slow. He was always about 3-5 lbs lighter > than his twin brother, . Then he had T & A surgery this past March. He > is now 1.5 lbs lighter than . Because of the larger tonsils and > constant congestion he was so uncomfortable eating that he barely ate at > meals and would not > do well with a bottle. Now he wouldn't miss a meal and cleans his plate. He > was 20 lbs 10 ozs. on his surgery date March 2nd. He is now 25 lbs. 8 ozs. > Almost 5 lbs in 3 1/2 months. > > Bonnie from Long Island > Mom to -10, twins and (ds)-2 1/2 > > ------------------------------------------------------------------------ > eGroups members: $60 in FREE calls! Join beMANY! > And pay less each month for long distance. > 1/4122/2/_/598201/_/960894916/ > ------------------------------------------------------------------------ > > http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2000 Report Share Posted June 13, 2000 Hi Gail.... My friend has a little boy with Ds and he has Celiacs - she asked me to tell you that the motions of children with Celiacs are unmistakable. Foamy, light in colour and unbelievably SMELLY!!!! This is due to the unabsorbed foods rotting in the system. Nicki had a blood test for Celiacs as she is also really little but not exactly.....how do I put it.......slim! Since her tonsils have been removed she won't stop eating! Carolyn Mum to on, , Emma (Ds) 4 and Nicki (Ds) 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Rudy was very small until he was about 7. Up til then, he looked like a toddler. Part of the reason he was so small was that he was always sick and on antibiotics and had chronic diareaha (sp???). Anyway, he had his adnoids removed, the diareaha stopped and he immediately started gaining weight. At birth, he was 6.8 lbs and was 6.4. He lost a pound his first month and didnt catch up until he was 8. NOW, well what can I say..... he is still a full head shorter than but about 25 lbs heavier!! He isnt fat just very full!! lol Now I watch what he eats so he doesnt get heavy since he is already predestined not only by being ds but he also has a big mama!! He still does not meet the " growth chart " regulations but thats ok cause he is very healthy and happy. Thats most important right? They did do a thyroid test on him at about 5 but it came out just fine. Hope this helps. 1 mom to Rudy (ds) & 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Sadly, yes. I am glad you are going to a doctor soon. I wonder if treatment with Roche's pegylated version and Ribavirin would be the next thing for you to try? Ask your doctor. Your skin tearing sounds similar to me during my last go-round of TX. Alpha-interferon can interfere with your body's manufacturing of collagen-which gives our skin and blood vessels strength and helps keep them from tearing so easily. While you are not now on interferon, your liver could be having trouble manufacturing this-causing your skin and blood vessel problems. Keep us posted- gail input please I was diagnosed with cirrhosis 4 years ago. I have done 2 treatments with Intron and never cleared the virus. I was on a study for non-responders using colchicine and had to stop due to stomach problems. About a year ago I started getting large purple bruising. Now I am covered with bruises and my skin tears very easily. I have been wrapping my arms with ace bandages to protect my arms from injury. Easter weekend I ended up in the hospital with a gall bladder attack. I have a enlarged gall bladder, but no stone are visible. My doc thinks I have a non functioning gall bladder. Of course I have had every test possible except for the one that will see if the gall bladder is working. It seems it is an older test and no one performs this procedure any more. My question is....is cirrhosis or hcv the cause of my problems ???? I will be going back to my doc next week. I have already been told that I will need a transplant eventually.... Here are some of my latest labs. alk phos 291 sgot 141 sgpt 171 ggt 106 platelets 173 hugs, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Hello Listmembers, My new doctor from mayo was running tests on me to see if my body could stand another treatment. Just when I finished the testing,I broke my leg and needed surgery.....after that I had an ecoli infection that caused sepsis. All which put a strain on my liver and kidneys. My heart escaped any damage. The doc from mayo and my gastro want me to wait till closer to transplant time to start treatment. The plan is to be negative when I get a new liver. I would like a chance to defeat the dragon and not wait till I'm listed. My doc from mayo said that I will need a transplant even if I cleared the virus. I feel like I'm backed int a corner !!!! I will post after seeing my doc next week. Thanks for all the info and support that this list provides. hugs, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 I had the Reclast infusion, I had no problems at all. Between Medicare and my insurance, I had NO out of pocket costs saving me 500.00, my cost for Boniva. Kathy Thibeault In a message dated 6/28/2009 12:57:52 A.M. Eastern Daylight Time, MARELENEfromNJ@... writes: has anyone had the reclast infusion for osteoporosis?has anyone had the rec my liver doc he said it is fine. my thyroid doc asked me about having it. have to do new dexascan first. she told me there is now a generic for fosamax one of the reasons i stopped was the cost of the drug. saw the new movie the proposal with sandra bullock and betty white it was very funny. i will be working the summer fast forward program will find out more on wednesday. that nite i will be going to the padre pio shrine near here and i will remember all of u when i say the rosary. i am so happy i just found a watch which i like so much it has been missing for 3 weeks and finally st. anthony came down and helped me find it under a chair pad. i have been praying to him for help. the band is black hills gold which i like a lot. he usually doesn't make me wait that long. well have a good week love, marlene Live well. love much, laugh often you make a living by what you get:-you make a life by what you give. **************An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! (http://pr.atwola.com/promoclk/100126575x1221323006x1201367222/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=Jun eExcfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2010 Report Share Posted September 19, 2010 I was on Armour for almost 20 years with no probs. Then it became impossible to find around here and the Dr I had switched to had a compound made at a pharmacy that was supposed to be identical to the Armour dose I was on (30mg bid). I went hyperthyroid and ended up in ER with heart problems due to too much T3 I switched to a competent doctor and he put me on levoxyl 50mcgs once a day and a compounded T3 3.75 in the morning and another dose after lunch. Here are my results: T4 Free 1.2 (0,8-1.8) T4 total 7.3 (4.5-12.5) TSH 1.82 (0.40-4.50) T3 Free 203 (230-420) The DR wants to add another morning T3 but I am scared of T3 now plus frankly the compounded T3 is expensive already costing me $30 month. Anyone have any advice? Thanks brit Quote Link to comment Share on other sites More sharing options...
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