Stunted growth from prolonged use of prednisone

Hi. My son Joseph is 15 now and has had nephrotic syndrome since he was 6yrs old. I was told there is a good possibility that he will have this as an adult and for the rest of his life. He has frequent relapses and is hospitalized a few times a year. My concern now is that his growth has been stunted by the prednisone and we are discussing growth hormone therapy. I dont know if this is a good or bad idea yet. He is in High school now and everyone notices his short stature. Kids can be very cruel. He is very strong and good hearted but his growth bothers him more than his disease.

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Well, Lisa I´m 30 years old and I´ve NS since I´m 2 years old. When I was 15 years old like joseph , my doctors also told me that there was a good chance that I would have this disease for the rest of my life. And they were right...

Josep is entering in the hard age of his disease.

My growth was indeed afected because of the prednisone. But I had a sacred period, from 10-13 years old where I had no relapses and allowed me to grow a little more. I´m only 1.70 m but it´s the standard height here in Europe.


I wouldn´t recommend any hormone therapy to your son. His body is already intoxicated with cortisone ( a powerful hormone), don´t tocxicate even more.

Try to encourage him to practise any kind of sport, but outdoors, that will improve his growth. Don´t bother if other kids annoy him. He is a good hearted kid and in the end of the day it´s what ´s most important.

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This is indeed a difficult issue. My son went through the same thing and for him it was the hardest part of the disease. He didn't grow even a centimeter for years. He was eventually able to get on a low dose of prednisone at 16 and puberty finally kicked it. He hated the fact that he was short, but worse was that in high school his voice had never changed. He is 18 and is well into puberty. But it was really rough for him. I was gung ho on the growth hormones, but we decided against it in the end. I would suggest you consult a pediatric endocrinologist and see what that doctor has to say. We ended up going to three different doctors, and followed the advice of the one we initially disliked the most. But in the end, he was right and waiting it all out was the best thing to do. Another aspect to consider is the cost. Growth hormones are so costly and many insurance companies balk at paying for them. My son had to go through several expensive tests, two required being admitted to the hospital. His results were so bad that he would have been covered under our insurance. I really suggest you look for a doctor who can help guide you through this. And incidentally, once the doctor talked to my son and explained his options, he was less concerned about his height because he knew there was still some hope in the future for him to grow.

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An endocrinologist needs to see your son about this issue and not just the nephrologist. The prednisone will stunt his growth and height is important in life. It is important for school and his future career no matter what that may be.

An endocrinologist will measure your son's bone age and determine if it matches his birth age. If his bone age is increasing, but his height is not, human growth hormone (HGH) is a good idea. The only complication is that HGH may cause a relapse and if he is already on high doses of prednisone, HGH may not work.

Your son only gets 1 opportunity to grow, make the most of it.

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I am 15 too. I have only been officially diagnosed with FSGS for about 5 months but have dealt with kidney issues for more then a year( i was first diagnosed with Minimal Change). Non the less i know how difficult it is to go about life with the disease and all the docotor and hospital visit, not to mention knowing the clinic/lab people by name. I take it your son has asked you personally to consider the drug, otherwise i'm sure it would have been the least of your concerns. I myself have not dealt with any height loss and if i did i wouldn't mind since i was tall for my age most of the time i was growing up and well being short isn't all that bad.. but i'm a girl.

If your son is going to have this disease the rest of is life then i suggest that you make the parts of it you can as enjoyable as possible. Altho what your doctor thinks should be well listened too, and finding the right treatment plan. I'm only a girl who is sick of well being sick and wish that if something simple could be done to make someone elses life more enjoyable then why not. I really do think that you should have a good long converesation with your son. Explain to him that he does have friends and family that obviously care for him the way he is, Also that he will most likely grow eventually. If i was in his possition i would feel a little defeated by my disease if i gave into trying to reverse something it did to me, and the bullies that made him truely short. also remind him he only has a few more years of being in highschool where the most of his worries are about being short.

something to consider,
emily

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Thank you Emily. He is taking the growth hormone since Nov of 07 and is growing. He goes out to the garage and keeps track of his height on the wall. No adverse side effects knock on wood. Joey goes for another biopsy 6/9 because the dr. thinks his disease has possibly changed to FSGS. Joey has had a tough time since the beginning of the year being in and out of the hospital. Joey is now steroid resistant. I am very worried. If you can send any info my way about FSGS it would be great. Take care. Hope you are feeling well. Lisa O

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Hi Lisa,
My son is 8 and has been on pregnisolone (he is now steroid dependant) since he was diagnosed with minimal change disease at age 5. He has tried cyclophosphimide, cyclosporine and lavamisil, all to no avail. He is now starting on a new medication (today) and we once again have our fingers crossed. His relapses are always around 5 or 7mg of steroid and has never been off it since his diagnosis. It had just started to become apparent that he is not growing at the rate of his mates (as if the weight gain wasnt enough to make him sad about his appearence) and his starting to complain of 'sore legs'. I hope he will be one of the lucky ones and perhaps this new medication will help. Stay in touch!

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What is the new medicine being tried?

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We are in Australia and I believe it is called something different in the USA - over here, it is called "Prograf". It is an immuno-suppresent...

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Our daughter is 8 and after seeing an endocrinologist was started on growth hormone shots. She had stopped growing on the growth chart and this worried her nephrologist. When seeing the endocrinologist he did some blood tests and some x-rays to see how much room for growth she had.

We decided to go with this treatment and she has grown 2 1/2" since August. We have actually had to decrease her dosage because now the growth hormones in her body are almost normal.

We haven't had anything bad to report about this treatment yet and are very glad we tried it. Now she's following the normal growth curve for kids her age.

It might be different for your son because he is older, but I know I didn't stop growing till about age 20 so he still could have a few good growing years left.

Kevin

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Hi ,

My daughter got MCNS at 2.5 yrs - she is now 6. She has not grown since age 3 and has proven steroid dependent and has very brittle bones b/c too. She is a particularly dangerous case, but they are currently investigating the potential for growth hormones. They obviously have to make sure that she doesnt grow too much b/c the bones will break.

We go to the special bone/endocrinologist at the end of June. Very scary . but we have to do all we can for her. She will probably do another round of cytoxan. Prograf, cyclosporine, cellcept have not worked.... nightmare.

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Joseph has taken everything but cytoxin and is now steroid resistant. Joseph is going to get a biopsy done tomarrow to see if his disease has changed to FSGS. Please send me any info or experiences with the cytoxin if possible. The growth hormone has worked out well for Joseph. Thanks for your reply.

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Lisa

Hope Joseph's biopsy went well and his diagnosis did not change.

Our 8-year old son has had MCNS for the past 2 years. He has been steroid dependent and has not gone off steroids over the last 23 months. Cytoxan did not work for him and biopsy confirmed MCNS after Cytoxan did not work. We are trying Cellcept now. Our son has also not grown in the past 2 years.

We are considering a pediatric endocrinologist consult to check the bones and to see if he should go on growth hormone.

Any further experiences you / others can share will help and be appreciated

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My son Vinnie has had MCNS since 18 months old-he is now 20 years old. Thank the Lord he has always responded to prednisone but he now is dependent on it. Because he has begun experiencing the long term effects of pred. use-diabetes, osteoporosis-we are now trying to wean off pred. and use cellsept. Neither prograff nor cyclosporin worked for him, but that seems to differ widely. We were never offered cytoxan until recently but there is concern for sterility. At one point we were concerned about growth too but he grew later. If you go with cytoxan with a teen boy, you may want to consider banking sperm.

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Joseph has been taking cytoxin for 2 months now and seems to be doing very well on it. I have not seen this kind of result for a very long time. I am hopeing this remission lasts a while. The growth hormone is also working well and joseph has adjusted to giving himself a shot every night. Good luck and stay strong.

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My dr said sterility will not be a problem because he is not going to be on it more then three months.

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I am glad to hear that cytoxan is working well!

Our 6 yr old who is steroid dependent since she was diagnosed at age 2.5 will undergo her 3rd biopsy on sept 18. she was mcns with mesangial proliferation on her first 2 biopsies.

ALL of her vertebrae in her back are showing extreme signs of weakness. the nephs at Johns Hopkins and Montefiore have never seen a case be so bone sensitive. I had to put her in a wheelchair last friday after her bone xray.

there is little left. she has done cellcept, prograf and steroids and cytoxan (max lifetime dose).... there is an outside chance for rituximab, but there is little hope. we must stop steroids completely, but she has been unable to maintain an equilibrium - if she cannot stop the protein spillage on her own, she will go into shock. hence, the previous use of steriods.

But she cannot stay on steroids b/c she is disintegrating from within. her bones are literally falling apart due to severe bone disease brought on by chronic steroid use.

we are between a rock and a hard place. she is in much pain. we have seen the BEST doctors- to no avail.

My daughter was declined growth hormones (endocrinologist suggested it could help) because SHE IS NOT IN RENAL FAILURE!! her GFR is fine and her creat is .3. What???????? THere are so many complete contradictions in her case no body can make sense of it.

Pls send prayers. I am religious and always beenvery spiritual. God seems to be turning his head away from this innocent child. I can;t help but feel some anger there. she has NEVER gotten a break. 22 hospitaliziations in 4 years and was PERFECTLY HEALTHY until aug 27 2004 when she started to spill protein.

sorry to vent. But I was so happy to see your son got growth hormones - if he has mcns, how did you get approval? does he have renal failure? if you dont mind, what is your ins company

thanks and God Bless
Duker

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My son is 14, and has been on all the drugs mentioned during the last 11yrs of fighting his NS. He has been on growth hormone therapy twice- 1yr when he was five, and two yrs ago. Both times he responded well-however, he has blood sugar issues from the prograf, and they got worse on growth hormone, so we had to stop. I fought the insurance company (Blue Cross) and even went as far as emailing the head of the Board (who is a doctor) and offered to meet him for lunch, with my son, so he could see I was not a mother wishing for a basketball player, but a mother who wanted her son to be above his projected height of five feet tall! He was shocked that I had gotten his email address, but the next day I got a phone call telling me he was approved for growth hormone! Garrett is finally in the 2% for height- below the charts for weight, as eating has always been an issue since his last course of cytoxan when he was five- lost his appetite completely-even when he is on high dose pred! He spent his whole life below the charts for height as well, so it is major to be above the line! He started high school this year, so I worry about him getting picked on, but he has enough "big" friends who watch his back! :) He is still on monthly labs, and he is at the age where he hates taking medicine so much, but after 11yrs ( last year he was on 16 doses of meds a day for two months when he had such a bad relapse) I can't say I blame him!

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My prayers are with you and your family. It has been a rough road and knowone can understand what a parent and child go through with this disease unless they experience it. Joseph only went into remission for 2 months on the cytoxin and had a very bad relapse at the same time my dad passed away in Dec of 08. He got a very bad eye infection and was hospitalized for his calcium being too low witch caused tetni in his fingers and spine. It was a rough month in Jan-Feb. Joey was hospitalized every week literely for a month and a half. He is still leaking protein but his albumin is back to normal. The Dr. is going to try retuximab very soon. My son has insurance throught the state because i cant afford it and has a great Dr here in Fl. Best wishes and i will pray for all the children that suffer from this disease every day.

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hi my name is gaurav and my biopsy confirm mcns for 2nd time my QUESTION is this that i have tried ciclosporin cyclophosmaide cellcept after i become steroid dependent, for the last 13 years i m taking this durg nothing else is working i have to take 20mg , i donot know how long i can take predislone . if any one know about lavamisole and rituximab

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