New to all of this (2 wks). My nephew, 2 1/2 was just diagnosed with exon 45 deletion. Trying to learn all I can. Any recs for the best muscle clinics to consult. What supplements are most DMD boys taking? Are many boys actually taking losartan?
I should think Dr. Flannigan would be the one to see locally for your nephew. Many on here go to Dr. Wong, (like us) but she is in Cincinnatti. Supplements? Calcium, Vit D, a multi vit,, CoQ10, many are taking Protandim and also creatine and L-glutomine. My son is actually taking Losartan now and has been for the last 7 months, He is 7. He started on an ACE - Enalapril at 5. He has no heart involvement yet and it is my hope that these heart meds delay it.
so sorry that you had to find us! You need to connect with Angela (Jack's mom...last name is Eluding me at the moment...sorry Angela!). They live in Aurora I think...but definetly the Denver area. They are VERY involved and do big fundraising events for DMD and are very active with Jack's school. Go to groups and find the Colorado group, there should be several from the Denver area for you all to connect with. Does your nephews family live in the Denver area?
As for Dr's I agree with Karen. Dr. Flanigan is in SLC, UT and he is good. Otherwise I would say the next closest 'speciality clinic' would be Cincinnatti. That is were we go from Louisiana! If you do travel to see a specialist, there are many ways to get free flights, etc...just search the board or ask...we will answer!
This is a great place for information. AT 2.5 y/o, I would not rush out and start anything until you see a specialist and get some baseline data on his medicine free condition. THat is just kind of a bias of mine. I would start working on getting him lots of natural calcium though...milk, cheese, yogurt, etc....
Sorry to hear about your nephew. In the last year we have found helpful information and kind hearts here at PPMD. Hopefully you will too.
My husband and I have only been at this for one year, our son's diagnosis was Oct 2007. But within that year we have learned a lot. I have to concur with Karen and Lori, make sure your nephew is going to a valid Duchenne expert. We see Dr Flanigan and he qualifies. Others go to Dr Wong and I understand she is great.
Obtaining, then following solid medical advice is key. Flanigan has our son on the standard steriod dose and nothing else. Our son, Alexander, is 10 and has a partial deletion on exon 44 (missing 2 of the 3 neucleotides each exon has), which causes 44 to "lean on" 45. If we had not gone straight to Flanigan when we firs recieved the diagnosis it could have taken way more time to find out that info. Flanigan's office # 801-587-9540-Alison (his direct assistant), Janie (she sets appointments) is reachable at 801-587-9824.
My two sons were diagnosed this year. My oldest 7 yr old takes C0q10, 1200 mg Vit.d Omega 3,6,9 and a multivitamin. He is starting Deflazacourt in January. I am introduicing the supplements one at a time, but my next is creatine.
My wonderful sister who rocks has made a group called "Aunts full of Love" she would to hear from you. She, like you is very concerned and loves her sister and her nephews very much. She can relate.
We live in Canada, we see a neurologist, nutritionist, cardiologist, and physical therapist. We also live in Ottawa, which is the capital of Canada and has one of the best childrens hospital in the world. Good luck to your sister, tell her to join. It has been a godsend for me.
God bless ya dear!!
Sorry to hear of your nephew, we found out about Kelvin in January . Kelvin is on Protandim - 1/2 pill (ground up and mixed with the extra green tea extract that I open up a capsule and use 1/2 capsule, the I put a little applesauce on a spoon, make a groove in it, then put 1/2 the mixture, the cover it slightly, then I do the same for the other 1/2 of the mixture) Kelvin has no trouble with this, Arginine 750 mg, Glutamine 5 g, Creatine 2.5 g, Miralax (amount depending on how his bowel movements are - I haven't used it for months lately) (I mix the Arginine, Glutamine,Creatine and Miralax with 8 ounces of flavored drink - they are all non flavored powder - I use 1 packet of a drink mix, mixed in water), extra green tea extract, Liquid Multi Vitamin, Caltrate 600mg/Vitamin D 400mg 1 per day and he takes a chocolate Calcium/Vitamin D at night for more Calcium and Vitamin D, CoQ10 100 mg (he chews and swallows the capsule), Omega 3-6-9 DHA 320/EPA250 Liquid, Noni Juice 1/2 oz, (mixed with about 4-6 ounces of Rootbeer), Deflazacort 15mg (this is a half of a pill, I divide the 1/2 and put the 2 pieces - 1 at a time, in Gogurt or Applesauce, I just put the Gogurt on a teaspoon and then put the 1/4 of the the pill in it. Sorry to ramble on, I have this information on my page for Kelvin. Kelvin is doing fantastic (well, it appears). His doctors have said, whatever I'm doing for Kelvin, I should keep at it. He wears braces at night after I massage and stretch him. I based my decisions on what folks do on here, as well as what doctors say and also what doctors have said about what they'd have their kids if their child had DMD. Take care, Michelle