Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Hi - My son, Dominic, has been on the same dosage of GHT for 1.8 years. His first endo put him on .6mg of genotropin (each day) because we were participating in a protocol study and the study dictated the dosage. We have been seeing Dr. H for 7 months and she has kept him on the .6 mg per day. So I don't think it is unusual for them to stay on it for awhile. I guess the question I would want to ask is " are you still seeing results with Mercedes' current dosage " ? Hang in there! F. (mom to Dominic 4.5 years, RSS, 24 lbs, 36 inches, GHT, periactin) -- In RSS-Support , " forhugsmom " wrote: > Hi Everyone, > > I has been a while since I have posted. > We just came back from the Endo. He refused to increase my daughter's > dosage again. It is the same as the dosage we started on last year in > April at 28 pounds. Now Mercedes 36 pounds. He is basing this on her > rate of growth. > > He was becoming angry as I questioned him about it futher and > reminded me of the side effects of too much GH, but did not mention > anything about the side effects of too little GH. > > Has anyone ever had the same dosage all year and more? > Any sugesttions? > > > > Mom to Mercedes IUGR/SGA, 36 inches and 5 years old, hypotonia, and > many RSS issues but no RSS diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 How much is Domonic growing? Liam just started GHT yesterday and we are at 0.6 of genotropin. He is 3.5 years and 34 3/4 " and 27 lbs..... Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs SGA, Hypothyriod, Epilepsy.) Starting GHT 5/19/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 - Hopefully I can help you, here. But I am confused. When you say she is at the same " dosage " for the last year, there are some issues: First and foremost, as a child gains weight, the " dose " that the child is on for ANY medication that is weight-based has to be adjusted upwards for weight increases to keep the " dose " the same. Does this make sense???? Growth hormone is prescribed in a mg/kg/day method, here in the United States. SO.... for a dose to be the " same " over a year, either the child doesn't gain any weight in that year, and hence there are no unit changes. OR.... the child gains weight, so the child is given more " units " of the medicine to keep the " dosage " of the med the same. Am I making sense so far? So, when you say that her " dose " has stayed the same -- are you referring to the actual DOSAGE amount (in a mg/kg/day format) or are you referring to the number of units (actual " amount " ) of GH she is getting. My daughter has stayed at the same DOSE of GH for the last year, because, as your doctor has said and Dr. Harbison agrees for , her growth velocity is doing really well -- so there is no reason to increase her dosage. HOWEVER, the number of units we are giving her as INCREASED every 3 months, because in order to keep her dosage the SAME, as her weight has increased we have had to increase the units. Whew. I think you will understand where I am going. So.... if your doctor has NOT increased the units your daughter is getting, despite the 8 pound weight gain, this is SHOCKING, because this would mean that he is giving her LESS AND LESS growth hormone. Write me back and let me know if you are referring to a flat dosage or units. Salem > Hi Everyone, > > I has been a while since I have posted. > We just came back from the Endo. He refused to increase my daughter's > dosage again. It is the same as the dosage we started on last year in > April at 28 pounds. Now Mercedes 36 pounds. He is basing this on her > rate of growth. > > He was becoming angry as I questioned him about it futher and > reminded me of the side effects of too much GH, but did not mention > anything about the side effects of too little GH. > > Has anyone ever had the same dosage all year and more? > Any sugesttions? > > > > Mom to Mercedes IUGR/SGA, 36 inches and 5 years old, hypotonia, and > many RSS issues but no RSS diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 --Hi , Shocking is exactly what I am saying. The dosage has stayed the same all year. It has NOT been adjusted for weight. No adjustment. No change. No increase in units. Thank you. I have eagerly been waiting the reply. I knew I was right. In fact, he does want to see my daughter every three months. He only wanted to see her every six months with her dosage at 0.5mg Nutropin AQ each night or 0.1 cc from a 2cc vial containing 10mg at 5mg/1cc. His name is Dr. Ian Ocrant. He is at Children's Hospital of Central Califronia, (formerly know as Valley Children's Hoaptial) in Madera, CA just outside of Fresno, CA It was difficult to " discuss " with him with a little one on my lap. I literaly asked him to increase the dosage based on her weight. He pointed to her growth rate " 12cm a year, that is 5 inches " . He then said, " Sound logically to you? " I then asked him isn't dosage of medication based on weight. He kept saying, " If you want to base it on just one thing.., " and trailed off. He then started talking about how kids who aren't GHD need less GH the kids who are. " too much GH can have side effects of agromegly, or diabetes.. " I was shocked because we both knew my daughter's diagnosis of IUGR/SGA requires more GH per kg of weight then GHD kids according to the clinical guidelines for treatment with GH. So then I asked him. " Is it customary to keep chidren at the dosage all year and not adjust it according to weight for children who are SGA/IUGR? " Then his face an voice changed showing he was angry and he began talking about how he was basing it on " 20 experience " , blah, blah. No wanting get him more angry, I quit asking. In looking at my own records, Mercedes has gone from 84.1 cm last April to 93.4 on May 18 2004. This is not 12cm. He said the same thing at the visit six months ago. Twenty years experience..? I doubt if he himself has been giving GH to IUGR/SGA kids for that long, especially since it was only recently FDA approved. How many 5 years with delayed bone age are in danger of agromegely? (yeah I spelled it wrong) Please forgive my rambling. I did call the pt care rep at the hospital and told them I disagreed with him not increasing the dosage according to my daughter's weight. This was later that same day. I think I will write to them too. Mercedes birthdate is 01/14/99 - In RSS-Support , " magicrss " wrote: > - Hopefully I can help you, here. But I am confused. When > you say she is at the same " dosage " for the last year, there are > some issues: > > First and foremost, as a child gains weight, the " dose " that the > child is on for ANY medication that is weight-based has to be > adjusted upwards for weight increases to keep the " dose " the same. > Does this make sense???? Growth hormone is prescribed in a > mg/kg/day method, here in the United States. > > SO.... for a dose to be the " same " over a year, either the child > doesn't gain any weight in that year, and hence there are no unit > changes. OR.... the child gains weight, so the child is given > more " units " of the medicine to keep the " dosage " of the med the > same. > > Am I making sense so far? > > So, when you say that her " dose " has stayed the same -- are you > referring to the actual DOSAGE amount (in a mg/kg/day format) or are > you referring to the number of units (actual " amount " ) of GH she is > getting. > > My daughter has stayed at the same DOSE of GH for the last year, > because, as your doctor has said and Dr. Harbison agrees for > , her growth velocity is doing really well -- so there is no > reason to increase her dosage. HOWEVER, the number of units we are > giving her as INCREASED every 3 months, because in order to keep her > dosage the SAME, as her weight has increased we have had to increase > the units. > > Whew. I think you will understand where I am going. > > So.... if your doctor has NOT increased the units your daughter is > getting, despite the 8 pound weight gain, this is SHOCKING, because > this would mean that he is giving her LESS AND LESS growth hormone. > > Write me back and let me know if you are referring to a flat dosage > or units. > > Salem > > > > > > Hi Everyone, > > > > I has been a while since I have posted. > > We just came back from the Endo. He refused to increase my > daughter's > > dosage again. It is the same as the dosage we started on last year > in > > April at 28 pounds. Now Mercedes 36 pounds. He is basing this on > her > > rate of growth. > > > > He was becoming angry as I questioned him about it futher and > > reminded me of the side effects of too much GH, but did not > mention > > anything about the side effects of too little GH. > > > > Has anyone ever had the same dosage all year and more? > > Any sugesttions? > > > > > > > > Mom to Mercedes IUGR/SGA, 36 inches and 5 years old, hypotonia, > and > > many RSS issues but no RSS diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 - Can you get to Children's Hospital of Los Angeles every 3 months? Dr. Mitch Geffner, pediatric endocrinologist who has treated many of our RSS/SGA kids who can't get to New York. Let me know and I will give you his phone number. Otherwise how about Sacramento? Dr. Prakasam, another great guy with a handful of our MAGIC RSS families up there. Well worth the drive for either of these doctors. Your gut instinct is telling you something -- you know more about the GHT treatment of RSS/SGA kids than your daughter's doctor. You need to find a doctor that can help you. I am very proud of you for doing so much research -- you are right, you have to be her advocate, this doctor is NOT the right doctor for your daughter. You can contact me off line and we can try to find a doctor close to you that has experience. magicrss@ mindspring.com > > > Hi Everyone, > > > > > > I has been a while since I have posted. > > > We just came back from the Endo. He refused to increase my > > daughter's > > > dosage again. It is the same as the dosage we started on last > year > > in > > > April at 28 pounds. Now Mercedes 36 pounds. He is basing this on > > her > > > rate of growth. > > > > > > He was becoming angry as I questioned him about it futher and > > > reminded me of the side effects of too much GH, but did not > > mention > > > anything about the side effects of too little GH. > > > > > > Has anyone ever had the same dosage all year and more? > > > Any sugesttions? > > > > > > > > > > > > Mom to Mercedes IUGR/SGA, 36 inches and 5 years old, hypotonia, > > and > > > many RSS issues but no RSS diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 -Hi this is , I was reading this post and was very interested, We started on G H about 1 month ago, I quit last week because the meds are burning,they started him on 4 units for 2 weeks and then 8 units for 2 weeks and then 2 weeks we had to start 12 units!!! All in less than a month! Gosh I wonder why such a difference? He is 5 and only 27 pounds and 36 inches wearing 12 to 18 month clothes, we stopped the meds because he said it was burning plus he was screaming his head off, I don't know if you read my last post.. on G H question but we were using Nutropin AQ and I still have a whole vial (bottle) never been touched or opened for that matter and I hate to have to throw it away knowing how much it cost and some people don't have the insurance, if you are interested in having this let me Know!!! We switch to the plain Nutropin that I am going to have to mix!!I have just gotten it shipped to me today so we will start back tommorrow after I go to training, I hope we can get back on track and that this medicine works!!! I would be pretty mad at your doc to sounds like you know way more than he does!!! Talk to you later and good luck let me know if you need this med and maybe I can figure out how to ship it!!! Thanks and hugs s mommy -- In RSS- Support , " forhugsmom " wrote: > --Hi , > > Shocking is exactly what I am saying. > The dosage has stayed the same all year. It has NOT been adjusted > for weight. No adjustment. No change. No increase in units. > > Thank you. I have eagerly been waiting the reply. > I knew I was right. In fact, he does want to see my daughter every > three months. He only wanted to see her every six months with her > dosage at 0.5mg Nutropin AQ each night or 0.1 cc from a 2cc vial > containing 10mg at 5mg/1cc. > > His name is Dr. Ian Ocrant. > He is at Children's Hospital of Central Califronia, (formerly know as > Valley Children's Hoaptial) in Madera, CA just outside of Fresno, CA > > It was difficult to " discuss " with him with a little one on my lap. > I literaly asked him to increase the dosage based on her weight. He > pointed to her growth rate " 12cm a year, that is 5 inches " . > > > He then said, " Sound logically to you? " I then asked him isn't dosage > of medication based on weight. > He kept saying, " If you want to base it on just one thing.., " and > trailed off. > > He then started talking about how kids who aren't GHD need less GH > the kids who are. " too much GH can have side effects of agromegly, or > diabetes.. " I was shocked because we both knew my daughter's > diagnosis of IUGR/SGA requires more GH per kg of weight then GHD kids > according to the clinical guidelines for treatment with GH. So then I > asked him. > " Is it customary to keep chidren at the dosage all year and not > adjust it according to weight for children who are SGA/IUGR? " > Then his face an voice changed showing he was angry and he began > talking about how he was basing it on " 20 experience " , blah, blah. > > > No wanting get him more angry, I quit asking. > > In looking at my own records, Mercedes has gone from 84.1 cm last > April to 93.4 on May 18 2004. > This is not 12cm. He said the same thing at the visit six months ago. > Twenty years experience..? I doubt if he himself has been giving GH > to IUGR/SGA kids for that long, especially since it was only recently > FDA approved. How many 5 years with delayed bone age are in danger of > agromegely? (yeah I spelled it wrong) > > Please forgive my rambling. > I did call the pt care rep at the hospital and told them I disagreed > with him not increasing the dosage according to my daughter's weight. > This was later that same day. > I think I will write to them too. > > > Mercedes birthdate is 01/14/99 > > > > - In RSS-Support , " magicrss " wrote: > > - Hopefully I can help you, here. But I am confused. When > > you say she is at the same " dosage " for the last year, there are > > some issues: > > > > First and foremost, as a child gains weight, the " dose " that the > > child is on for ANY medication that is weight-based has to be > > adjusted upwards for weight increases to keep the " dose " the same. > > Does this make sense???? Growth hormone is prescribed in a > > mg/kg/day method, here in the United States. > > > > SO.... for a dose to be the " same " over a year, either the child > > doesn't gain any weight in that year, and hence there are no unit > > changes. OR.... the child gains weight, so the child is given > > more " units " of the medicine to keep the " dosage " of the med the > > same. > > > > Am I making sense so far? > > > > So, when you say that her " dose " has stayed the same -- are you > > referring to the actual DOSAGE amount (in a mg/kg/day format) or > are > > you referring to the number of units (actual " amount " ) of GH she is > > getting. > > > > My daughter has stayed at the same DOSE of GH for the last year, > > because, as your doctor has said and Dr. Harbison agrees for > > , her growth velocity is doing really well -- so there is no > > reason to increase her dosage. HOWEVER, the number of units we are > > giving her as INCREASED every 3 months, because in order to keep > her > > dosage the SAME, as her weight has increased we have had to > increase > > the units. > > > > Whew. I think you will understand where I am going. > > > > So.... if your doctor has NOT increased the units your daughter is > > getting, despite the 8 pound weight gain, this is SHOCKING, because > > this would mean that he is giving her LESS AND LESS growth hormone. > > > > Write me back and let me know if you are referring to a flat dosage > > or units. > > > > Salem > > > > > > > > > > > Hi Everyone, > > > > > > I has been a while since I have posted. > > > We just came back from the Endo. He refused to increase my > > daughter's > > > dosage again. It is the same as the dosage we started on last > year > > in > > > April at 28 pounds. Now Mercedes 36 pounds. He is basing this on > > her > > > rate of growth. > > > > > > He was becoming angry as I questioned him about it futher and > > > reminded me of the side effects of too much GH, but did not > > mention > > > anything about the side effects of too little GH. > > > > > > Has anyone ever had the same dosage all year and more? > > > Any sugesttions? > > > > > > > > > > > > Mom to Mercedes IUGR/SGA, 36 inches and 5 years old, hypotonia, > > and > > > many RSS issues but no RSS diagnosis. Quote Link to comment Share on other sites More sharing options...
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