His vitamin D is because his is very low. I do know from reading on this site that other kids take Vitamin D too. When you start to go to an MD doctor, they should (Dr. Wong's team will) check his vitamin d level. Then they will advise you on how much he needs. Amy, it totally sounds like you are on the right track. Good Luck, let me know how Noah is doing.
Wyatt will be 19 months in just a few days, so you're right they are very close in age. Wyatt still doesn't walk independently so we do a few things. We live in Washington State. We take him to a physical therapist about 30 minutes for home once a week. We also do the stretches I found on this site. Wyatt's muscle tone is still excellent so the stretches aren't really necessary right now, we do them just so he gets in the habit. He takes a very large amount of vitamin D, 2000 IU, (it's called drop of sunshine liquid and I get it at super supplements) which was the amount his doctor told us to give. His nutritionist also advised us to give him a liquid multi-vitamin (which I get it a drug store it's made by enfamil, I think, I get it in the baby section, next to formula.). In addition, Wyatt is very little for his age, so in order to give him more calories, I mix French Vanilla Carnation instant breakfast (2 table spoons) w/ 5 oz of whole milk. It not only has protein, but calories too. I think it's working, he's finally gaining weight. He weighs just over 21 pounds. Everything I've seen on this site and from talking to moms, around age 2 I will start on some other supplements. I'm still looking into those, I would be happy to share any information that I find.
Wyatt was diagnosed at Seattle Children's, we took him to 1 appt. in the rehab clinic and they told us there wasn't much that could be done. That was completely the opposite of what I'd read on this site. Very early on, totally by chance, Pat Furlong had come across Wyatt's story, we met her in April 2009 (she was in Seattle at a convention). We discussed Wyatt for quite awhile about his care, it was such a turning point. She asked us if we were ready to roll up our sleeves and get dirty.
I had met some Moms in the Washington group and they told me they take their kids to Cincinnati Children's. So I looked into it, and that's where we went. (Pat actually emailed them for us and they called me) We went in May and they were incredible. Usually, a family only goes once a year, but because Wyatt's weight problem was never solved we are going back in December for more tests. Once all the testing is done, then we will just go for check ups once a year, until something changes with him and then we will go more often. I hope I didn't give you too information, let me know if I can do anything else. So many people on this site have been kind and so helpful to me, if I can do that, then I'm honored. Take care.
Hi amy - Levi will be 3 in August. There are some local events/mtgs but I'm just staring this journey so I haven't attended any yet. There is a HUGE PPMD annual mtg in Atlanta at the end of June. All the researchers/doctors are there, they tell me it's a MUST ATTEND. My husband & I are going this year so we hope to meet others like us & leave w/ lots of HOPE
Yes, we've been to Chop 2X - We see Dr. Finkel he's the Director of the NeuroMuscular clinic. I hear Dr. Bonneman is GREAT & really into research, so you may want to see him. We recently got Levi's genetic tests back & they confirmed Duchenne. So far Levi has PT 1x/wk w/ early Intervention just like your son. We thought he had speech issues (because 1/3 of Duchenne boys have cognitive delays involving speech), we have a Speech therapist 1x/ wk also - but he's doing GREAT. Levi won't need that much longer:)
Water therapy is wonderful for our sons; find a Pediatric PT that does water therapy. Horseback is great too. Look for a Horse Therapy place in your area - This really helps their CORE muscles & balance. Don't try to do it ALL - it is very overwhelming. Just remember that you are not in this alone. There are many mom's just like you trying to do the best they can for their sons. We will all get through this. I hope I helped a bit & gave you some guidance as to what works for us. "Live each day like the gift that it is"
Hi Amy, I'm Joanna Johnson and my two sons, Elliott (5) and Henry (3 in June) were diagnosed with DMD in the summer of 2007. I am also a carrier. There is no other history of DMD in my family. We live in Downingtown, PA (45 minutes east of Lancaster), so we're not too close to where you are, but please reach out if you need anything. My # is 610-269-5369. We see Dr. Tennekoon and Dr. Finkel at CHOP in Philadelphia- a very positive experience thus far. Again, let me know if I can help in any way. You'll be in my prayers.
Hi Amy - Sorry to hear about the DMD diagnosis. Our 3rd son Levi was also dx recently, it's very difficult but we have a strong faith & we know God has our sons in his hands. We live in Lebanon, not too far from Wilkes Barre area. Please feel free to contact me anytme 717-949-8334. I ahve made many GREAT contacts & lifelong friends in the PPMD community. I can help answer some questions you may have or direct you to those that can.