Rhiannon Ramkissoon Female Moreno Valley, CA United States: Favorite

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Gallstones?

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Gut motility problems/Erythromycin

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Oprah

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Becker Parents

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HerSelf First

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Duchenne Smiles

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Adolescence (age 7-12)

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Ninja Warrior: Carter Blaze

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Carter's Montage

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About my family:: My husband Chris and I are the proud parents of Carter who is 7 (Born 2-2-2004). He was diagnosed at 3 1/2 and has a deletion of exons 45-48 which is in-frame and predicts a BMD phenotype. Unfortunately, he's progressing a little faster than BMD should and is considered to have a 'mild duchenne' or intermediate phenotype. We are hoping he will be ambulatory into his late teen years, he currently uses a manual wheelchair for long distances and started bringing a scooter for outside at school (2nd grade) to preserve his energy. In addition to DMD Carter has other medical problems: he was born with an intestinal obstruction that required surgery at 3 days old and has short bowel syndrome and life threatening food allergies to milk and peanuts. He is also growth hormone deficient and has been on growth hormone treatment since he was 2y10m old. He's been on Deflazacort since he was 4 1/2.

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

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City and State:: Moreno Valley

Country:: California

Rhiannon Ramkissoon's Blog

Scooter

Posted on January 12, 2011 at 5:07am 4 Comments 0 Favorites

Carter will be 7 on February 2nd. We got a prescription for a scooter back in November from his local neurologist after talking to his PT/insurance.. Cincinnati recommended power assist wheels for his manual chair, but our PT said they probably wouldn't get approved. School also says he has to have an aide with him if he's using a manual chair. He doesn't need it all the time, only for recess and trips outside the classroom. He still has good strength but fatigues easy and is coming…

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Six Years Ago..

Posted on February 5, 2010 at 3:00pm 4 Comments 0 Favorites

February 5th, 2004 we discovered just how difficult and rewarding this parenting thing can be. It was the one of the hardest and happiest days of my life.

My pregnancy was…

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SSI Appeal and back on Growth Hormone

Posted on October 9, 2008 at 1:00am 0 Comments 0 Favorites

We decided in January to go ahead and apply for SSI for Carter. We had been told several times in the past that we should apply due to his other health problems, but honestly didn't want to deal with the hassle. After lots of frustration fighting with Medi-cal over his health coverage we decided that we'd probably be better off if he had SSI and thus would keep his Medi-cal coverage. So, I made the call and started the application process.

Jan. 14th of this year was our first… Continue

Carter's GH Stim test results

Posted on September 17, 2008 at 7:12pm 0 Comments 0 Favorites

Well, it's official; Carter is growth hormone deficient.

We got the results of his stim test today and between the 8 draws they did over the course of the test his highest peak was 4.73 (anything under 10 is considered 'failing' and means they are growth hormone deficient). So, we will be starting back on growth hormone treatment as soon as insurance reapproves it.

Endocrinology Appt. today

Posted on August 26, 2008 at 12:03am 1 Comment 0 Favorites

Carter had a follow up appointment with endocrinology today. He's been seeing them for 2 years now for his short stature/SGA and to monitor his growth hormone treatment. His Dr. left the hospital and this was our first time meeting the new one. Turns out she was previously at Cincinnati Children's with Dr. Wong and worked with the DMD boys. She just moved here last month to take this position. Told us that had we seen Endo while we were in Cinci it most likely would have been her. I am beyond… Continue

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At 2:12am on August 13, 2011, Penny Hauer said…: Rhiannon it was so good looking at Carters pics again how is he cute as ever. I found a dog for caleb a trainner in Arizona now all I have to do is find 5000 have you ever had a fund raiser? if so what did you do and ideas would help.Is carter doing well? I hope so Caleb went to wheelchair camp this week and school starts the 22nd. his dog will be ready in dec and we are excited I was hoping we could get together this summer but summer is nearly over does Carter play baseball the miracle league in del Mar is starting soon I know there are some kids that travel from up your way Later tell Chris Hi and Carter too. Penny

At 10:44pm on July 20, 2011, Manuel Antonio Quintero said…: So sorry I mised this replay... please feel free to ask me any thing my son is doing great stop walking sudenly for and overdose of botox but never touched him wit GH or steroides and never regret my desition he is 18 now...

At 4:37pm on May 24, 2011, Wyatt's Mommy, Melissa said…: Hi how are you. I have been so busy with the new baby I haven't really had a lot of time to catch up on PPMD. I would love to tell you all about my PGD experience. It was wonderful and so worth it. My Carter is amazing (your Carter is adorable, that smile of his could move mountains, he's just gorgous) everytime I look at Baby Carter I think PGD was so worth it, when I have a very minutes, I would love to share our story. Best wishes.

At 7:22pm on May 6, 2011, Manuel Antonio Quintero said…: Just to clarified Manny is my son my name is Gloria, Manny does not write nor read I am he's advocate in all, mean while we are waiting to hear from a friend and find out if the can bring the scooter to you, I will nee to have the exact location that its going to be delivery to< my son just to enjoy it and socially acceptance with inn kids is much softer ...some how transition its better for our kids.

At 1:42pm on May 6, 2011, Manuel Antonio Quintero said…: I have i scooter that you can use if you accepted my son does not use it any more, he will be more than happy to give it to you , insurances are a pain and my son is 18 already we have provide for him every thing, I will tell you one or two things on GH and food related if you don't mind , let me know about the scooter .....

At 3:05am on January 28, 2011, Penny Hauer said…: what a journey you have had but I can tell your little guy is very loved. he is so so cuteyou are very lucky to be able to see Dr Wong we are in Ca and on med_cal and no chance of going there beleive me I would like to talk to someone Caleb is having trouble with heart beating fast and they the clinic here doesnot take it serious. but life goes on and the love never stops Penny

At 10:11pm on March 22, 2010, Lisa Anderson said…: I am glad to hear he is doing well! Connor is doing well. He sees the neorologist for the second time in August. We go to Chapel Hill. There is not much treatment for Connor right now. He is having some mild behavior problems at school. We are having him tested to rule out any autism or learning disabilities but the psychologist he has been seeing feels that it may be that Connor realized he was a little different before any of us even did. He has built some "securities" that are now beginning to hinder him. But the good thing is we now have an idea and his teachers are really working with him to build his confidence and help him to not be so "withdrawn". Please keep in touch. I think it is great to meet someone similar.

At 8:54pm on February 24, 2010, Lisa Anderson said…: Hi, I just wanted to introduce myself. My name is Lisa. My son Connor is 7 and was diagnosed in Aug with most likely BMD. I think I saw on another post that your son and my son have the same deletion 45-48. Just wanted to touch base.

At 5:32pm on July 14, 2009, Tamara "Michael's Mulisha" said…: Yes, he compalains about his legs hurting after he has been playing or swimming for a longer period of time. With the heat right now, all we do is swim. It hurts him to straighten out his legs after swimming. Then he gives it some time and they relax and feel better. He is in martial arts but obviously he is not as advanced as the other kids. He just thinks its cool to kick or punch the pads like he is Kung Fu Panda. His teacher knows his condition and never pushes him on certain things. He gets to test for his next belt on Friday and we are very proud of him.

I found this guy on this website that is 25 years old with BMD. He seems to be doing really good. He played sports in school and says he had pressure from his peers (they can be so mean) but he wanted to keep playing for fun so he did. He now works for ESPN. Anyways, its interesting to talk to an older guy with the same disease.

How is Carter doing? What kind of things does he go through at this point?

At 12:41pm on July 14, 2009, Tamara "Michael's Mulisha" said…: Well Im an oldie graduating in 94. But I didnt start having kids until I was 28. Lets just say I was busy having too much fun to think about settling down with a guy and having kids. LOL. I will be the oldest mom in the kindergarten classs Im sure.

When is the next time you go to Dr. Wong? We wont be there until next April. Im waiting for the scheduling center to call me with all the dates. This time we are going to go after Kings Island opens up. Its that huge rollercoaster park. Michael loves rides so we want to make his trips as fun as we can. We just take him and leave my other son with my mom and will do the same with the new baby. Its too hard to concentrate on the Doctors and all the waitng time with more then one kid in tow. When you meet my other son, Ty, you will know what I mean. He is my wild child.
How far are you away from Brea? Cant wait to get together with you. I think the boys would love it.