Brooke Lyons
  • Seaford, DE
  • United States
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  • Simone & Elias
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Brooke Lyons's Discussions

once you get the diagnosis, what do you do? How do you move forward?

Started this discussion. Last reply by Brooke Lyons Jun 18, 2013. 4 Replies

I am so terribly confused...actually I am running the whole gamut of emotions.  Part of me would like to stay in a bliss of denial yet I know that I can not.  How have you moved forward and fought…Continue

Exons 3-30 inframe deletion newly diagnosed info please

Started Jun 10, 2013 0 Replies

My son is 14 months old and we just got his diagnosis confirmed last week.  The doctor is saying a cautious Beckers diagnosis/borderline Duchenne? Has anyone had that or a similar deletion?  How are…Continue

CPK of 26,970, please help

Started this discussion. Last reply by Andrea Cleary May 31, 2013. 5 Replies

PLEASE help.  I will try to make this short.  My son is 14 months old had has been developmentally delayed since he was about 9 months old(when we first noticed something was not "quite right").  HE…Continue

 

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Latest Activity

Praveen favorited Brooke Lyons's profile
Apr 23
Brooke Lyons replied to Simone & Elias's discussion Outliers? in the group Outliers - Intermediate between Duchenne & Becker MD
"3-30 should actually be BMD because it is in frame. We only got our confirmed DMD diagnosis once we had a biopsy and western blot test. We have chosen to not take steroids. Ryker has been in the CAT-1004 clinical trial for for 15 months and is doing…"
Dec 28, 2017
Brooke Lyons replied to Dawn Jones's discussion still waiting on official diagnosis
"Praying for your son, and your strength as well."
May 20, 2014
Brooke Lyons joined PPMD's group
Aug 15, 2013
Brooke Lyons replied to Brooke Lyons's discussion once you get the diagnosis, what do you do? How do you move forward?
"Andrea, thank you so much for sharing Welcome to Holland with me.  What a beautifully written story that is our lives.  Thank you all for your kind words of encouragement."
Jun 18, 2013
Trinh Nguyen replied to Brooke Lyons's discussion once you get the diagnosis, what do you do? How do you move forward?
"Dear Brook, Both Andrea and Andrew' words are very true and very precious. I have learnt from them a lot. You can fight for him, you can do it since you are his mom. MOM will never give up. With share. Trinh  "
Jun 17, 2013
Andrew Kerr replied to Brooke Lyons's discussion once you get the diagnosis, what do you do? How do you move forward?
"Its very overwhelming at the beginning.  Take some time for yourself to come to terms with the diagnosis.  You don't need to jump into steroids or anything else today.  At 14 months old, there's not a lot you can do that is…"
Jun 17, 2013
Brooke Lyons posted a discussion

once you get the diagnosis, what do you do? How do you move forward?

I am so terribly confused...actually I am running the whole gamut of emotions.  Part of me would like to stay in a bliss of denial yet I know that I can not.  How have you moved forward and fought for your sons?  I feel as though my hands are tied.  I don't understand all the talk of research and science.  I want to help my son but how???  My doctor does not want to start steroids until he is at least 5.  What do your docs say?  Isn't early treatment best?  Side note, my son is 14 months.  Is…See More
Jun 17, 2013
Jessica Rownd left a comment for Brooke Lyons
"Brooke, Wyatt started walking around 13 months. He is still doing very well. At our last neurologist visit he was actually faster and stronger! He can ride a bike without training wheels but does get pretty tired. He has figured out how to limit…"
Jun 12, 2013
Brooke Lyons posted photos
Jun 12, 2013

Staff
PPMD left a comment for Brooke Lyons
"Brooke -- We'd like to connect you with our Genetic Counselor, Ann Martin regarding the questions you have about your sons diagnosis. Please feel free to contact Ann at Ann@parentprojectmd.org or 201-937-1408."
Jun 12, 2013
Jessica Rownd commented on Brooke Lyons's blog post newly diagnosed with a cautious Becker's MD, info please
"My son was diagnosed at 15 months. he is mow almost 7. He has a very large deletion also 18-41. Please message me ...I know the shock at such a young age"
Jun 11, 2013
Brooke Lyons commented on Brooke Lyons's blog post newly diagnosed with a cautious Becker's MD, info please
"Hello Amit Gupta, we had a DNA and a Chromosome microarray done.    We go back to see the doctor on Thursday, I will get more info then and hopefully have a better understanding of everything she was telling me over the phone."
Jun 10, 2013
amit gupta commented on Brooke Lyons's blog post newly diagnosed with a cautious Becker's MD, info please
"Hi Brooke, in-frame deletions beginning in the early part of the gene are somewhat unpredictable in terms of duchenne or becker...it could be either.... Not sure how the DNA test showed the amount of dystrophin...i thought ony a muscle biopsy…"
Jun 10, 2013
Brooke Lyons posted a discussion

Exons 3-30 inframe deletion newly diagnosed info please

My son is 14 months old and we just got his diagnosis confirmed last week.  The doctor is saying a cautious Beckers diagnosis/borderline Duchenne? Has anyone had that or a similar deletion?  How are your son's doing? His CK is 26,970 currently.  With being so new to everything I am trying to learn as much as possible.  My son also has these "body tremors" I call them and also what the neurologist refers to as Stereotyipies.  His hands and feet almost constantly "flap" or "wring" almost like he…See More
Jun 10, 2013
Brooke Lyons replied to Simone & Elias's discussion Outliers? in the group Outliers - Intermediate between Duchenne & Becker MD
"OMG, I am so glad that I found you!  My son is 14 months old with exons 3-30 (in-frame).  I just got his diagnosis last week.  Please give me more information, I will take anything.  How is your son doing?  I am so confused…"
Jun 10, 2013

Profile Information

About me:
Very busy mom of 3 beautiful kiddos. Newly diagnosed and nearly overwhelmed. As my husband and I are just dabbling our feet into the frightful waters of MD, I am happy to have found this site for support and information.
About my family:
we have 3 beautiful children. Our oldest girl just turned 13, yopungest girl will soon be 8 and our Tud Muffin, Ryker is 1.
Name(s) of child(ren)/individual(s) with Duchenne:
Ryker
Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
Seaford

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Brooke Lyons's Blog

newly diagnosed with a cautious Becker's MD, info please

Posted on June 7, 2013 at 2:33pm 3 Comments

My son Ryker is 14 months old.  I just spoke with his neuromuscular specialist and she confirmed via his DNA and chromosome microarray that he has exon deletions 3-30 but the DNA test is showing that he is making minescule amounts of distrophin so she is cautiously diagnosing him with becker's but wants us to understand that by the time he is 5-7 it could change to Duchennes since he has such a large deletion and he could stop producing the small amount that he is now. She said that it is…

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At 9:39pm on June 12, 2013, Jessica Rownd said…
Brooke, Wyatt started walking around 13 months. He is still doing very well. At our last neurologist visit he was actually faster and stronger! He can ride a bike without training wheels but does get pretty tired. He has figured out how to limit himself by taking breaks.
We are actually going to the PPMD conference in two weeks. I hight recommend going if you get the chance. It is my recharge for the year.
Please keep in touch.
At 9:58am on June 12, 2013,
Staff
PPMD
said…

Brooke -- We'd like to connect you with our Genetic Counselor, Ann Martin regarding the questions you have about your sons diagnosis. Please feel free to contact Ann at Ann@parentprojectmd.org or 201-937-1408.

At 5:44pm on June 7, 2013, KarstensMom said…
Hi Brooke. I just read your message about your son. My son Karsten has the same deletion as yours. He was also diagnosed young, 5 months old, it was a fluke we found out so early. He does have a diagnosis Duchenne, but I have been told it could be a severe form if Beckers. There is no way to know without a muscle biopsy. He is 6 now and doing well. I am sure you have lots of questions and concerns, I know I did and still do. I am willing to answer any questions you have about how my boy is doing and what it has been like so far, just ask. You can email me at jaime_chesnut@yahoo.com
 
 
 

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