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alicia Female wi. rapids wi. United States: Favorite

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About me:: I am a stay @ home mother of three. Two girls and one boy

About my family:: I live here in beautiful Wisconsin, with my husband Lelan and three amazing children,BrierRose Lene` 7, Deacon Xzavior 3, and Nastaja Soliel, who will turn 1 in Feb. Deacon was dx with BMD in May of 08. Dr. Wong changed his dx to DMD in Dec. 08 We have no family history of this, and I don't know if I'm a carrier yet.

Name(s) of child(ren)/individual(s) with Duchenne:: Deacon

Age(s) of child(ren)/individual(s) with Duchenne:: 0-3

City:: wi. rapids wi.

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Am I overreacting, or just over protective?

Posted on July 16, 2008 at 10:42am 7 Comments 0 Favorites

Yesterday I took the kids to a little shop in town, somewhere we go farely often. Apparently one of the workers was babysitting ,who I am asuming to have been her grandaughter, the kids were all playing around togther. A few times I saw the little girl,3 years old or so, push Deacon, so I suggested to him to get in the cart, but like any 3 yr. old wanted to stay by his big sister, so I let him. The kids hide in a clothing rack, and when the grandmother tells them to get out, Deacon takes a… Continue

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At 2:02pm on July 31, 2009, Windy Jackerson said…: Hi all. My son was diagnosed this past September with DMD but now we are not so sure. He did not have any del/dup but had a point mutation at splice site exon 50. I registered with Duchenne connect and spoke to a counselor there who told me that it would be hard to diagnose my son at this point with DMD but possibly it could be BMD, but time would tell. He has not had a muscle biopsy. I was told it was not necessary since his DNA testing came back positive in the sequencing. This all so confusing to us. She also told me that a child who has del/dup would 100% of the time have DMD. Can anyone shed some light into this. He had developmental delays early on and his CPK was 18,000 when it was first checked. He never crawled and started walking at 18months. He will 3 in March. He has gained strength but is still weak getting up from the floor. He is not using the gowers movement. He does not have any learning disabilities, he is quite intelligent! I also had DNA testing and I am not a carrier. If anyone's son was diagnosed with Becker, can you please contact me so we can talk. We just really need answers. We have not taken him to the MDA clinic as of yet but are planning to very soon. We live outside of Orlando, Fl. Any help would be appreciated. Thanks and God Bless!!

At 11:00am on April 5, 2009, Jill Keenan said…: Hi Alicia! Just wanted to see how things are going for you all? How is Deacon doing on the steroids? Hope he adjusted well and that you aren't seeing too many side effects! I'm soooo sorry to hear that the dx was changed!!!!!! That must have been quite a blow!!! At least you can know that Dr. Wong will take such good care of your son! If you would have stayed where you were, Deacon would not have been given the chance to start steroids so early, if at all!! And you wouldn't have the correct diagnosis!
Take care and hang in there!
Jill

At 5:39pm on January 13, 2009, Vicky Williamson said…: Alicia, Trempealeau is about 20 miles north of La Crosse so we probably live about 125 miles away from Wisconsin Rapids. That would be quite a trek for a bake sale. Thank you for offering! Vicky

At 1:48pm on October 20, 2008, donna said…: what is the name of the angel holding the boys hand?

At 12:35am on September 25, 2008, Jill Keenan said…: Howdy ho, Alicia! Hope you and yours have been well. Just wanted to give you an update on Wyatt's biopsy. Dr. Wong called about 2 wks ago to tell us that he has 25-50% dystrophin and put him in the mild to moderate bmd!! We were so thrilled! We were thinking at best he would be considered a severe bmd but most likely a moderate dmd. We had heard that the minimum amt. you needed for dystrophin to be useful was 3-10%, so this is way beyond our wildest dreams. We are just over the moon, to say the least! She told us that he has hypotonia (low muscle tone) as well, which is makes him seem to presenting with md symptoms now. I had never heard of hypotonia so am trying to study up on it now. When we return in Feb. to Cincy, Dr. Wong said she wanted to run tests to see what is causing the hypotonia. Hope we can get some answers but are just overjoyed with the bmd diagnosis=) Just wanted to share our news with ya--I bet you are getting anxious to get to Cincy, huh? I am --so she can help interpret your dna and biopsy tests, and whatever esle you had done but couldn't get great help in deciphering what it meant.
Anyway, take care and I'll chat with ya later! Jill

At 10:30am on August 27, 2008, Julie Gilmore said…: Hi Alicia,
Mitchell has Graston won't even try to explain it as there is an international site that shows the technique with videos :
http://www.grastontechnique.com/Slide_Show.html
We go twice a week, and it has really helped Mitchell.
Your son is still quite young, so at this stage it would only offer a slight benefit, however as he gets older (and once his heels start lifting off the floor) that will be the time that Graston will really pay off.

It has long been found that keeping the heels on the floor keeps boys walking longer. Our chiro has just done Graston on a child with DMD whose heels were a good 2" off the floor. After each graston session his heels "dropped" anywhere from 1/2" - 1". Now bearing in mind this was on a child who had not had their heels on the ground for some time, so I'm confident that early intervention with Graston before the heels lift too much will prove very successful at keeping the tendons from contracting prematurely.

Our son has been non ambulant for 3 years now, but the improvement to his contractures was remarkable - it has increased Mitchells range of motion, which combined with regular stretches has made a big difference to him.

Hope that helps,

Jules

At 9:09am on August 15, 2008, Julie Gilmore said…: Hi Alicia,
was leaving a message for Jill and noticed your post re chiros. We have had Mitch at the chiro's for 6 months but not for "cracking" - for Graston. If you want to know more drop me a line and I'll give you more info. Mitch is the first DMD boy to have the treatment (that any practioners know of) and we have been really happy with the results. :-)

At 5:17pm on August 14, 2008, Jill Keenan said…: Haven't heard anything about Chiropractors in regards to md. But it's funny that you mention that b/c I just went out with a friend of mine whose hubby is a chiropractor and she was telling me some interesting stuff he does with regards to nutrition. He is a health nut! She is going to drop off a book for me today that he wants me to read, so I'll let you know what I think. I can also ask him about adjustments for our boys and see what he says. (Although, I don't think he has any md patients.) It can't hurt to ask.

At 4:40pm on August 14, 2008, Jill Keenan said…: I just saw on the "Dr. Wong Visits" group, that you have your first appt. in Dec. I am so happy for you. She is one smart cookie and I think you will come away with the feeling that you are in good hands with a doctor who knows her stuff--and will find the answer if she doesn't know it=) Good luck!

At 12:47pm on August 5, 2008, Jill Keenan said…: Alicia,
I sooo "enjoyed" the conference! I was, however, on information overload. I tried taking noted but man, those presenters talk at lightning speed, so I gave up after the first day and just occasionally jotted down info. here and there. It was great to meet so many parents and talk and share our stories. I was really interested in what the researchers said about upcoming trials but was disappointed that things just aren't moving fast enough!! I want a GREAT treatment yesterday. Most clinical trials will be starting in a year and some can be completed quickly (one researcher said w/in 18 mos) others will take longer (maybe 3 yrs.). But I am soooo very grateful that things are on the horizon and that researchers are dedicated to finding something for our boys. Most agree that treatment will be a cocktail of several drugs that target certain areas. We heard about some promising drugs and can't wait to see these progress to viable treatments for our boys. The one that I think is the most promising will be utrophin. This will work for ALL the boys and it is something our bodies produce already. I hope you can go next year--you will learn so much and I would love to meet you!
Have you gotten an appt. date to see Wong yet? Were you able to press your original dr. for info. about the specific mutation? Our next appt. with Wong is Feb. 17. It would be great ifwe happen to be there at the same time=)
Hope all is going great in your neck of the woods and that you are feeling and doing well with all of this md stuff. Jill