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Regina Female Chadds Ford, PA United States: Favorite

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Started this discussion. Last reply by Regina May 28, 2013. 4 Replies 0 Favorites

Started this discussion. Last reply by Anessa Fehsenfeld Jan 14, 2010. 13 Replies 0 Favorites

Started this discussion. Last reply by Paul Johnson Jun 10, 2009. 12 Replies 0 Favorites

About my family:: I am married with 2 children, Marissa (5) & Jordan (7). My son was diagnosed w/a deletion at 8-11 in June 2008. We are devestated, but are comforted somewhat by all of the positive information on this website. My son had no developmental delays, and if I hadn't noticed in February that his 4 year old sister went up the steps faster than him, I would probably still be unaware of what was going on. We are anxious to get to Children's Hospital of Phila in August, and start doing everything we can to battle this disease.

At 8:56am on July 12, 2014, Christine Marie Pierce said…: I just read your profile. Lance was diagnosed at 7 and has a deletion at 19.. it is extremely rare. He is now 15 as I said. If your son is doing well now... get him under those lights! Really. There are no ill side effects. It's like laying under a tanning bed except without the tan! It's hard to believe the little red lights are doing anything. but they are! Our doctors are pretty excited about lance's PROGRESS!

At 8:53am on July 12, 2014, Christine Marie Pierce said…: Regina, Yes, it is very much worth the drive. We live 45 minutes away and make the trip 3 x a week when we are doing treatment. The more muscle and health your son has, the better the results. Lance loves the light therapy. It makes him feel strong. He is 15 and his heart and lungs are perfect I'm glad to say. His spine is still straight and although he does not walk on his own, he still transfers out of his chair with my assistance. It is well worth the visits. Good luck and let me know if you need more information.

At 8:14am on July 18, 2012, Katherine Blake said…: hey Regina -

I'm the one from Ridley Park! Drop me a line at blakek@aafes.com. I don't get to get online with this too much, but don't want to miss out on a fellow Delco friend!

Katherine

At 12:55pm on June 18, 2012, Debbie Wagner said…: Hi Regina! I saw your message and would also love to chat with you sometime. When is a good time to call you?

Debbie

At 10:13pm on April 6, 2012, Tammy said…: Hi Regina, I am very curious to see what your son's ck levels were after your last post, as well as how you thought CHOP was (children's hosp of Phila)...we have an appt with them in late may, my son was just diagnosed a few weeks ago at 2 1/2....thanks!

At 6:55pm on January 27, 2012, amit gupta said…: hi regina, i saw your posting on the cpk board and wnated to know how his cpk is now? i know it varies a lot, but since you talked about it going down from 27000 to 8000 due to Juven, I am curious. Please reply via email to richagupta@yahoo.com...

We have an 8 yr old with deletion of 6-29. Hope your son is doing well.

Thanks.

Amit

At 4:08pm on February 3, 2010, Laurie Paschal said…: Hi Regina,
Yes, we'll be in Cincy the 16th-18th. We're arriving late afternoon on the 16th in Dayton, but are staying at the Holiday Inn in Covington. We have appointments most of the day on the 17th until late afternoon. On the 18th we just have Dr. Wong in the morning. Our flight home is around 5pm. My cell is 936-520-1560. Give me a call and maybe we can meet up for dinner one night or during a break at the hospital.

Laurie

At 12:58am on December 15, 2009, Char Burke said…: HI Regina,
I saw a comment about GH therapy on the outliers group section. Our son, age 7, is on GH therapy. I wanted to explain something to you. Will, our son, had a GH test and he was producing adequate GH. However, he is on deflazacort - going on 3 years now and he has fallen off the growth curve. Well, b/c of this, he was diagnosed with constitutional delay - short stature. Our medical RX co. did approve the GH therapy for him based upon the fact that he was now off the growth curve. I hope this makes sense....it does not have to be a situation where you don't have inadequate GH levels....Dr. Rutter is the best endocrinologist to go to at Cincinni Chldren's. She is studying how GH therapy is helping to maintain muscle cells and have long term effects on heart and lungs. Char Burke

At 5:02pm on August 8, 2009, Jessica said…: Hi Regina. MY son was diagnosed so early because he had a random blood test for a wheat allergy at 9 months. He only had the test because I asked for it since my father and brother have a wheat allergy known as celiac. His pediatrician also ran his liver functions and they were abnormally high. I then went to a liver specialist had him have a liver ultrasound and this doctor ran more blood tests. They found then his cpk to be high 6600. I then went to neurologisgt he said he seemed fine a bit hypotonic (floppy) but pretty normal for his age.
He said I will rerun cpk in one month. They did it was 9900, he then ordered the genetic test it took one month to get the results. He was found to have in frame deletion exon 13, predicted phenotype becker. I just attended the first ever Becker md conference in Boston last weekend. Did you also attend?

At 9:36pm on May 14, 2009, Jacobs Mommom said…: Hi Regina:

Can you give me your email address and I will get you up to speed on the event and the meeting we are having May 31st.

Paul's event is October 31st and ours is October 3rd and raindate is October 10th. Paul is going to help with ours and I'm going to help as much as I can with theirs.