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Comment by Donna Gluck on March 4, 2010 at 1:43pm

Sandy, Hoping you remember me. I am a Doctoral candidate conduction research with boys 8-12 that have DMD. Are you aware of any families that may want further information? Donna 630-353-0697 OR donnajg23@yahoo.com

Comment by Donna Gluck on November 25, 2009 at 3:09pm

Hi I am trying to locare Sandy with Il. faces. Ryan gave me your name and suggested I reach out to you. My name Is Donna Gluck and am looking for boys with DMD in Illinois for research on emotions and artistic expression. Can you help?

Comment by Nana on April 17, 2009 at 12:18am

Kathi,

Thank you for your comments and recommendations. It helps a lot to hear what is working for others and what is not. We actually were thinking about lowering Charles's dosage (or actually not increasing it- he grew quite a bit this past year and we noticed lately that his behavior is better) It helps to hear that this approach is working for your son.

We are currently trying to address dietary issues- Charles is a particular eater so it is a challenge to get him to eat what he needs each day. We will keep in mind some of your suggestions.

Thanks again,
Nana

Comment by Don Cooley on April 15, 2009 at 10:28pm

To Kurt & Nana and any others that are interested: Hopefully our experiences will be able to help someone else. My name is Kathi and we live in the South Suburbs of Chicago...We have a 13 yr old with Duchennes and 10 yr old twin girls.
When we started our son on deflazacort about 4-5 yrs ago the doctors recommended I believe 30 mg per day. We started him with this recommendation and he went from a happy go lucky kid to totally depressed and always saying he was tired. It was so bad that we considered taking him off all together...What we did was go down to 15mg per day and he felt great, had a great energy level, said he felt better than when he wasn't on deflazacort, and his moods were back to his old happy self. In speaking with other parents seems like every kid is different. I am not a doctor but I would start on a lower dose and monitor how he does...My 1st thought is this could have something to do with moods and behavior.

My second thought I think may help even better. We grew up eating meat and potatoes and not having any problems so I was amazed in our findings with our 10 yr old twin daughters. The twins were born at 27+ weeks and weighed only 2lbs...so every year we did whatever necessary in regards to pt, ot, and speech. The one twin is atletic and very smart. The other twin at age 4-5 in preschool had a major attention problem. She nearly drove the teachers crazy she didn't act out but she spent alot of time under her desk rather than in her chair. She had an impossible time focusing or paying attention. We tried brain scans and every medical test you could imagine. We also had a 2 month evaluation done at the local public school without any answers. Finally the principal at the school said that she knew that we had tried everything else so would we be open to taking her off dairy products to see if it makes a difference. At this point we would have tried almost anything. We took her off of dairy and within 2-3 weeks the teachers were asking what we did. It made at least a 60% difference in her. On a few occasions along the way we slipped up and found that within 20-30 minutes after she had any kind of dairy that she would appear to be drunk or autistic. I didn't believe it until I say it.

Now I will cut the rest of the story short but by a great recommendation we went to Barb Griffin(www.vitalhealth.org) in Orland Park for an evaluation. We didn't tell her anything including our dairy findings. She came up with her body cannot tolerate dairy or gluten. Once we adjusted her diet we now made it about 80-85% of where we should be. She has mastered reading on basically an 8th grade level, loves and goes right thru science..she still has a problem with math...but it appears more because she doesn't like it..or has no interest.

Barb Griffin has made an amazing difference in our twins life and also our son with MD.I know that there is a wait to get into her and that it was costing about $100 and insurance doesn't normally cover it. If you go this route please let me know your outcome so we can share with others...If you can't get in very soon ask them to call you with a cancellation and they will...Looking forward to hearing from you.Kathi Cooley

Comment by Nana on April 15, 2009 at 1:22am

Kurt,
Thanks for your comment. It is always good to know we are not alone in our search for better resources for our children. I am continuing to ask around for recommendations for places that conduct ADD/ADHD testing ( I like to compare a few places before I decide where to go).

We just went to our first MDA clinic at Rush. The neurologist Dr. Peter Heydemann recommended we contact the HALP Clinic through UIC directed by Dr. Mark Stein. It is a multidisciplinary clinic specializing in comprehensive evaluations for children and adults with attentional difficulties. They test at 1747 Roosevelt Rd in Chicago and at a 900 Skokie Blvd, Suite 113 in Northbrook. The contact person who can tell you more about the clinic is Brian and his number is (312) 996-4331. The website is pysch.uic.edu/clinical/HALP.htm. Brian told me that the evaluation takes approximately 4-6 hours to complete and will cost from $1100-1600. He also told me that Dr. Stein does not contract with any insurance and most patients are self paid.

We are still debating when and if we want to test Charles. He is on the high doseage weekend schedule of taking Deflazacort and his behavior is very different depending on the day of the week. We are also currently trying to decide if we want to go with a lower doseage of Deflazacort to see if that improves his behavior. I'm curious to see if any of the others who have older children have any experience with this.

Nana

Comment by Kurt Harzke on April 8, 2009 at 2:11pm

Nana,

Thanks for posting this question. We are in the same boat with Jacob (also 6 and on Deflazacort). We are just beginning the evaluation process but have yet to find someone to do a formal evaluation. We also live in the Chicago area (NW Burbs).

Kurt

Comment by Nana on April 6, 2009 at 5:47pm

My son's neurologist at our last visit suggested we get our son Charles age 6 and a half evaluated for ADD/ ADHD -due to ongoing attention, and behavior regulation issues (we are still trying to figure out how much of his behavior is because of Deflazacort and how much is just his make up). Does anyone have any suggestions on where to take him in the Chicagoland area which is good with differential diagnosis? We live right by UIC.

Thanks,
Nana

Comment by Kurt Harzke on March 12, 2009 at 3:02pm

Kristin,

Thanks again to you and Sandy for coordinating the FACES meeting. It was great to see so everyone and was a very informative session. I am looking forward to the next one.

Kurt

Comment by Kristin Hiatt on March 10, 2009 at 10:47am

We had such a great turnout at our first FACES meeting, thank you to everyone who came. We were so fortunate to have Bob visit our group and provide such a detailed explanation of the current science and research landscape and I think we all learned a lot. We are also fortunate to have so many experienced parents in our group and I know they are going to be a great resource for those of us with younger boys. Sandy and I are really excited to be leading this group but FACES belongs to everyone so we want to know what you think. What do you want to talk about? Do you want guest speakers on certain topics? Was the time and location easy for everyone? Should we just go out to dinner sometimes? While we think this forum will be the best place for group discussion between meetings please feel free to call or email with anything. Sandy and I are currently working on the date for our next meeting, sometime in May, and we are open to suggestions for topics of discussion. So please let us know what is important to you!