Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi everyone, we have an appointment to take to an endocronologist to look into growth hormones..any one out there have any luck with growth hormones or know anyone who has, really hasn't has any growth in years.. ANY INPUT APPRECIATED. thANKS jANE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Jane, I asked my son's doctor about this because he is so small, but we put it off because of Robbie's problems receiving injections. The dr. was telling me that there is a new drug coming out that is injected far less often. Does anyone know about the new drug? Also, what age and size is your son? Mine will be 14 in 2 weeks, he is 5 ft, 82 lbs. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi Jana, my son is 9 and 4ft. tall and weighs 68 lbs.He is in fourth grade and much smaller than all the other kids. The prednisone shut down his growth completley.Unfortunatley it was the only drug that controlled his severe systemic symtons. He is now on 5 mg. pred and I noticed his appetite has really diminished and he is looking pale. Over they years I have gotten very good on the visuals and signs that a flare might be coming on. He is now laying on the couch saying he is cold and needs a blanket, sometimes chills are a s ign too, I am going to head in and check his temp, when he gets like this I try to make sure he gets extra sleep and eats extra healthy, sometimes I have the belief I can hold off a flare this way, maybe its just being a mother that thinks this who knows????oh well.. I am really not that optimistic about the growth hormones, I haven't heard any real success stories as of yet.. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Jane, I hope that your son isn't starting to flare again. I agree with you about the sleep. When Tally starts to get that look, I tell him it's time for bed and thank heavens, he's still young enough to listen. We are down to 5 mg a day of prednisone now and have managed to reduce it by 1 mg a week until last week when I started seing signs of a possible relapse so I'm holding it here for at least another week or so. I will pray that your son doesn't relapse. I know how devestating it is to be so close and yet feel so far away. I've been lucky with Tally as his prednisone hasn't stopped his growth. His RD was surprised that he is still growing because he expected not to see growth. My son is 5. I'm heartsick thinking of a possible relapse for your son. I know how hard he has been fighting it. I'll keep you in my thoughts and hopefully, it's just his body readjusting to the lowered dose. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Jane hi i am Robbin has seen a Endrocrine dr for years due to her size at 13 shes 4ft 7in tall they do bone growth xrays about every 6 months the dr talked about growth hormones before but waiting to see how she does the cartliage he said still has enough space to grow becareful with what you choose what age is he? how tall is he? boys wait till the last to spurt up sometimes Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Jana lolol 14 and 5ft 82 pds melissa is 4ft 7in and 126pds the way she use to grow was gain weight then zoom a inch and lose the extra weight then start over again like in a pattern growth spurts every year Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 on this growth thing i heard about a procedure where they stretch the bone pin the bone and let it heal just becareful with the hormones yall god makes each one of us different so it is like messing with nature melissa was tiny she wasnt even 4ft at 11 years old she went into a growth spurt and since she turned 13 years old shes been 4ft 7in Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi my DR. said sometimes you can kind of figure on a childs height by looking at their parents ht. My husband is 6ft1 and I am 5 '4 he feels without the prednisone should be about 5 '11. actually don't they do blood work to see if the child is producing any growth hormones?? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Robin, when went into a growth spurt was she on prednisone? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 Jane no she had stopped the preds she is in a slow spot right now kids grow at different rates some medications stunt growth when i found out i did weigh the risks and for her i suggested she not be given the preds for her asthma she was doing ok my son also was on pred for his asthma he had side effects stomach headaches and he gained some weight he did hit a growth spurt after he stopped preds hes thinner also as with any medications theres a risk melissa went through the hormone test where they checked the hormones to see if shes produceing the growth hormones she is but at a slow rate the bone growth xrays help to see when the bones start to fuse melissa is behind on bone age wrist is like 2 or 3 years behind ankle is 3 to 4 years behind but depending on the growth from what i was told the child can continue to grow to early 20s even though is behind she will continue to grow til about age 21 Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Hi Robbin, This discussion prompted me to measure Robbie last night. It felt like he may be growing and he is! He is 5' 1 1/2 " , so he is gaining! I think it is because the MTX/Enbrel combination is working so well. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Hi Jane, I believe they can check the blood for growth hormone and check the growth plates and give you a pretty good idea what to expect. In our case, my husband is 6' 1 " , I am 5' 8 " , my daughter is 5 " 9 " ... they told us to expect Robbie to be around 5' 7 " ... he is hoping to make it taller then his sister! Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 JANA great how is his weight? and his age? its something to watch and keep up with i measure melissa on the inside of a closet every 6 months did my son the same way lolol i am glad hes growing Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Jana your right the bone growth xrays will also give a height on the child melissas height should be about 5ft 4 or 5ft 5 at least taller than me lolololol Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Jane, We investigated the growth hormone treatment protocal. In the long-run, we decided to forego this treatment. At least for the time being. It would require a daily injection and would need to be taken for a lot of years. There are a lot of possible benefits from it's use though. It changes the bodyand bone mass density and fat distribution, which can help with the Cushingoid symptoms sometimes created by high dose steroid maintenance treatment. It can strengthen bones. And it can help some kids who have documented growth hormone deficiency and growth retardation as a result of corticosteroids, to regain some of their genetically determined height expectancy. Even so, for some illnesses it is still considered experimental and not a standard treatment. So there might be some question about whether it would be covered by your health insurance. There was some controversy with it's use many many years ago. I know some adult JRAers whose parents had considered it and were then frightened by headlines stating that it had caused some major problems. They used to aquire it from cadavers. And there were some associated health risks. Nowadays, it's produced synthetically and is much safer. If you want to, you can get in touch with the drugmaker Eli Lily and ask for them to mail you an informational video tape and booklets that detail the answers to all your most likely questions. They also have a subsidy program and offer a sliding scale fee to help families whose insurance doesn't fully cover the costs of this extremely expensive drug. Costs even more than Enbrel, I believe. Also, keep in mind that they are currently working on newer growth hormone drugs that don't need to be taken as often as the old standbys. One in particular that is currently undergoing trials needs to be taken just once or twice a week, instead of everyday. It hasn't been released yet but should be soon. We always wanted to try to get Josh off the steroids first. And see if he might have a natural growth spurt to make up for all these years of lack of growth. And, like others here have mentioned, there are lots of cases where boys will have a major growth spurt even later than expected. As long as the bones don't fuse yet, growth is still possible. Josh hasn't had any physical signs at all yet, of entering puberty. My daughter Kayla, who's 21 months younger, already has. The steroids, or the JRA itself, may cause a delay in puberty onset. Which means that Josh will have extra time to grow. So we're not just rushing into it. I did think it was a good idea to research the subject though, just to learn more about it in case we decide later to try it. Josh, like your son, has major growth retardation. Positively associated with his long-term steroid use. It's one of the known side effects. Reversible, in inhaled steroid use for asthma treatment. Not necessarily so for JRA. It depends on how long they need the steroids and in what amounts. This is not a normal growth delay but a seperate real, tangible health issue. Some kids, with systemic JRA that remains active for many years, never come close to achieving their expected adult heights. I know 21 year olds that remain the same height as Josh. Just 4 feet tall. So I know about the concern you feel. For us, the height issue remains one of the most clearly visible reminders of my son's chronic illness. He doesn't stand out in the crowd for having mis-shapen, deformed joints or being in a wheelchair. He's different because of his height ... or the lack of it Hope this helps a little, Take care, Georgina Jitz45@... wrote: > > Hi everyone, we have an appointment to take to an endocronologist to > look into growth hormones..any one out there have any luck with growth > hormones or know anyone who has, really hasn't has any growth in years.. > ANY INPUT APPRECIATED. thANKS jANE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Again, Jane, There's a list, I'm almost positive it's right through egroups, called the Magic List. They also have a website by the same name, the Magic Foundation. It's an organization sort of like ours, one for parents and caregivers of children, who have growth disorders. Unfortunately, when I was signed on not one other child was represented there who was taking growth hormones for JRA related GH disturbance. They were taking it for lots of other reasons, though. And quite a few had success stories. Some reported no response or not quite the expected response. As a side note, Josh's rheumatologist's son has been taking it for a few years, due to Kawasaki's Disease. Take care, Georgina Jitz45@... wrote: > > Hi Jana, my son is 9 and 4ft. tall and weighs 68 lbs.He is in fourth grade > and much smaller than all the other kids. The prednisone shut down his > growth completley.Unfortunatley it was the only drug that controlled his > severe systemic symtons. He is now on 5 mg. pred and I noticed his appetite > has really diminished and he is looking pale. Over they years I have gotten > very good on the visuals and signs that a flare might be coming on. He is now > laying on the couch saying he is cold and needs a blanket, sometimes chills > are a s ign too, I am going to head in and check his temp, when he gets like > this I try to make sure he gets extra sleep and eats extra healthy, sometimes > I have the belief I can hold off a flare this way, maybe its just being a > mother that thinks this who knows????oh well.. I am really not that > optimistic about the growth hormones, I haven't heard any real success > stories as of yet.. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Jana, I don't have my files to look back on but I believe the newest one is called Nutropin Depot. I think they're currently doing pediatric trials in UCLA with this weekly injection. I posted some article about it to the group a while ago. If anyone is interested enough to want to re-read them, you can go to the main egroups website, go to the JRA List messages archives, type growth hormone in the search field on the upper right side ... and a list should pop right up. You're kind of lucky that Robbie already got to the 5 foot mark. And he does still have many years to grow, too. Josh hasn't grown hardly at all since JRA onset, either. Just very slightly. At 11 years/7 months of age, he's still just 47 1/2 - 48 inches. About the same as he was 5 years ago. And he weighs 65lbs. My younger daughter is already about 54 inches tall and weighs 72lbs. Take care, Georgina JANABECKER@... wrote: > > Jane, > > I asked my son's doctor about this because he is so small, but we put it > off because of Robbie's problems receiving injections. The dr. was telling > me that there is a new drug coming out that is injected far less often. Does > anyone know about the new drug? Also, what age and size is your son? Mine > will be 14 in 2 weeks, he is 5 ft, 82 lbs. > > Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Robbin, This procedure that you mentioned, stretching the bone, we actually watched a tv documentary about it on the Learning Channel. Or maybe it was the Discovery channel? And, the last time Josh was in the hospital, his roommate had this done. To correct a major leg length discrepency. His wasn't due to JRA but some kids with JRA do have leg length discrepencies, too. Take Care, Georgina Robbin40@... wrote: > > on this growth thing > i heard about a procedure where they stretch the bone pin the bone and let > it heal > just becareful with the hormones yall > god makes each one of us different so it is like messing with nature > melissa was tiny she wasnt even 4ft at 11 years old she went into a growth > spurt > and since she turned 13 years old shes been 4ft 7in > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Georgina yes i remember the doctor and PT measureing melissas leg length melissas is 73cms both legs Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Hi Robbin, I used to have a kid's height chart pinned up on the wall. After 's normal growth stopped it got to be a little bit discouraging. We moved it. After the first couple of YEARS of absolutely no growth I finally took the darned growth chart down! Josh still gets measured at his monthly rheumatology appts. That's reminder enough. He's basically still the same height as when he got JRA back in kindergarden. And now he's in 6th grade. Nature hadn't intended it to be this way. Unfortunate side effect of illness and/or medication was the culprit. But life goes on. The prednisone worked when nothing else would. He might not have survived without it. Being short is definitely better than being dead Take Care, Georgina Robbin40@... wrote: > > JANA > great how is his weight? and his age? > its something to watch and keep up with > i measure melissa on the inside of a closet every 6 months > did my son the same way lolol > i am glad hes growing > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Georgina your right i dont mind melissas height i am use to the height its something in the family we dont make fun of that we make sure she is well rounded in knowing words we over look just keep josh on the right track and let him know theres more to JOSH than height theres the real josh inside that body :-) Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 Hi Georgina, Thanks for the information, Nutropin Depot is the one. I am going to go back and re-read those articles. We won't do anything if Robbie keeps growing like he has just started to, and yes, we are very lucky. I think Robbie is very close to a medicated remission which is allowing him to grow! Thanks again, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 Hi Jana, I'm so happy to hear this good news about Robbie Hopefully things will stay stable and continue improving and it won't be a necessary option. It's good to know, though, that there are some options available. Just in case. Not 100% reliable but still available for us, if all else fails. Like Robbie, Josh still has more than a few years left to see if he can catch up for lost time. Let's keep our fingers crossed Take care, Georgina JANABECKER@... wrote: > > Hi Georgina, > > Thanks for the information, Nutropin Depot is the one. I am going to > go back and re-read those articles. We won't do anything if Robbie > keeps growing like he has just started to, and yes, we are very lucky. > I think Robbie is very close to a medicated remission which is allowing > him to grow! Thanks again, Jana Quote Link to comment Share on other sites More sharing options...
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