"Here are a couple links to determine the dosage:
Prednisone dosage- Drugs.com
Prednisone dosage- Mayo Clinic"
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Donna Cicardo
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how much steroid to use for 11 year old
Started this discussion. Last reply by Joshua's mom Apr 26. 1 Reply 1 Favorite
Will there ever be studies other than exon skipping and such????
Started this discussion. Last reply by Sharon Hesterlee Apr 12. 8 Replies 0 Favorites
Any suggestions on how to lose weight?
Started this discussion. Last reply by Angie Evans Jan 31. 15 Replies 0 Favorites
Donna Cicardo's Page
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"Hi, is anyone taking a higher than normal dose of steroids every other day. for example if the daily dose for 130 lbs boy is 40 mg, is anyone taking 80 mg every other day. or maybe 50, 60, 70 mg I would appreciate…"
StaffSharon Hesterlee replied to Donna Cicardo's discussion Will there ever be studies other than exon skipping and such????
"
Hi Amit:
Good point--I think I was thinking of the first Summit Study that would include boys with DMD, which could potentially take place in 2013 if the safety study planned for this year is positive (and on time), but the…"
StaffSharon Hesterlee replied to Donna Cicardo's discussion Will there ever be studies other than exon skipping and such????
"Hi Donna:
I think you would have to skip exons 2-7 to put an exon 2 deletion back into frame--I'm not sure that we can do that big of a skip yet. I'm not sure what is meant by that Web site.
Sharon
"
amit gupta replied to Donna Cicardo's discussion Will there ever be studies other than exon skipping and such????"Sharon, you said three utrophin trials starting in 2013/2014. I thought Summit said they were starting trial for SMT-C1100 in 2012. Has that changed?"
"Sharon,
can you interpret on this website for skipping exon 2
http://www.humgen.nl/lab-aartsma-rus/Table%20duplications.pdf
Pat had told me you could not skip exon 2, but according to this list from Lieden, it says it has been proven…"
"Thanks Sharon, I found two for the utrophin, SMT-C1100 and TVN-102 that MDA has donated $1 million (bycylin). I am hopeful these will work. My son has BMD, so has some dystrophin, but not enough. He has duplication of exon 2, which…"
StaffSharon Hesterlee replied to Donna Cicardo's discussion Will there ever be studies other than exon skipping and such????
"Hi Donna:
There are a lot of drugs in testing and development that don't depend on exon-skipping. Some approved drugs like Viagra and Spironolactone may end up working as well or better than some of these high tech approaches--the jury is…"
how much steroid to use for 11 year old
My son is 11 years old. what is the dosage of prednisone recommended at this age with a weight of 120 lbs. and is anyone on a daily dose at this age and approximate weight.See More
"Thank you, I will look through this information. I have another friend who would be interested to read these. My son has duplication of exon 2 and Pat told me yesterday, that the exon skipping would not work:
" Duplications are…"
Peter replied to Donna Cicardo's discussion Will there ever be studies other than exon skipping and such????"Fortunatelly there are many going on.
http://www.parentprojectmd.org/site/PageServer?pagename=Connect_conference_presentations_11"
"I have my son on an amino complex type regimen. it has arginine in it. I will ask my doctor about this. What he might say is that it is beneficial on short term use and suggest taking it for one year and then go off for a period of…"
Will there ever be studies other than exon skipping and such????
Will there ever be studies for those of us whose children have outling exon duplications/deletions. I am so thankful for all the studies, and PRAY they are succesful, but often wonder are we stuck just on the sidelines? Maybe with the studies right now, they will quickly move on to those of us who do not qualify for the studies or near future treatments? How many of us are out there?See More
"Pat, Thanks for your response. This is what my worst thought was. Since it sounds like exon skipping will probably not work for my son, which drug study should I be watching. We were hoping to be in the cialis/viagra study…"
Outliers - Intermediate between Duchenne & Becker MD
The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More
Profile Information
- About me:
- I love my husband and my children and my mom, dad, and sister. I try to be there for them always. I would do anything for them.
- About my family:
- My son is funny, tries to prank you, and is a good boy.
My daughter is very lovable, stylish and loves everyone.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Alex
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City and State:
- Watauga, Texas
- Country:
- USA
Comment Wall (3 comments)
- At 11:14am on January 7, 2012,
semra inanç said… Hı donna,
Our doc wants to look at his blood and urine test for evaluating B12 metobolizm. if you can get to your son 's blood test for B12 level and your son has high level B12, you can be interested with this knowledge. Our doc wants to organic asid in his urine, and blood works for Tandem MS carnitin and aminoasit profil tests for checking yiğit's B12and methionin metabolizm. May be this is important for your son as much as my son's condition. What is your oppinion?? I would like to know answer this question?? Please share your thought with me
Best regards, And
happy new year
semra
- At 8:34am on December 13, 2011, semra inanç said…
Dear Donna,
B12 deficiency or high B12 cause some problem on the human metabolizm. My son has high level B12. my doctor has thought about B12 not come into the cell although we don't give him any supplement for increasing his B12 level. Why we don't know. Doctor has researched about it. And also my son has loose gaita sometimes diarrhea when he was earlier age. This a type of metobolic sendrome. After muscular distrophy diagnosed, Our child norolojist gave us kortizon 5 mgr./day. prednizolon. When we gave him prednizolon, he had thyroid resistance.This mean is if somebody has thyroid resistance all hormonal tissue gets down. including cortisol mechanizm. He has taken some medicine for regulating his thyroid. This pills give him more energy and fat metabolizm get fast.This is very very comlex structure. every symptom with related eachother. İn my oppinion, doctors has not enough knowledge about all gene mutation phenotypes. Lots of patients has different symptoms. Finally, I have thought that our son need specific assesment.
İf you want I can give you my doctor name. His office is in Spain. He is kPNI specialist.
Please contact to me. my e-mail adress is smrnnc@gmail.com
With regards
Semra
- At 2:38pm on December 12, 2011, semra inanç said…
Hı Donna
My son has exon 2 dupl. like your son, I have a question for you. Please could you check his medical report, he has any problem about high level B12. İf it is; This means that could be his B12 not come into his cells. My son HAS this problem. My endocrine doctor wants to know that other child who has exon 2 duplication on dystrophin gene have the problem?????
This situation could be very important for us.
I will be waiting for your answer
Thanks
Semra
physical therapist from Turkey
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