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DanielsDad
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- Palm Coast, Florida
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Growth Hormone therapy
Started this discussion. Last reply by Char Burke Oct 8, 2009. 8 Replies 0 Favorites
Night Splints
Started this discussion. Last reply by Archana Feb 4, 2011. 12 Replies 0 Favorites
DanielsDad's Page
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Archana replied to DanielsDad's discussion Night Splints"I live in Tampa.we have few companies like West coast brace and limbs and hanger prothestics .we had actually used both of these over the years and it helped.Of course they were been covered by my insurence plan for most part.Hope this helps."
DanielsDad replied to DanielsDad's discussion Medicaid, Level 1, Misc. Waivers...etc in the group Florida Families"We have finally gotten Medicaid for Daniel. It has taken me, losing my job, for it to happen. I am working on getting help ( of some kind) from CMS Childrens Medical Services. I will keep everyone posted if it works out as it seems, with…"
Penny Hauer replied to DanielsDad's discussion Night Splints"I have a pair of splints for you I put my # on your site please get to me so I can get them to you.Penny"
Archana replied to DanielsDad's discussion Medicaid, Level 1, Misc. Waivers...etc in the group Florida Families"I have tried for medicaid .also for SSI(for my son) but got denied for both as my income is above the set level for qualification.After being denied from many other state agency for family and children I have finally given up.I will really like…"
DanielsDad added a discussion to the group Florida Families
Medicaid, Level 1, Misc. Waivers...etc
do any of my Florida neighbors know of any financial assistance given for handicapped children that isnt based on the parents income? I have hit the wall several times trying to get assistance for Daniel, but my above poverty level income and money in a retirement account always seems to stop us in our tracks. I have heard that in other states, they are given what is called a level 1 waiver that is based on the childs income and worth instead of the parents.Has anyone had any luck of getting…See More
DanielsDad posted a discussionGrowth Hormone therapy
Is anyone started to give their sons injections for growth hormones? We are curious of the cost associated with it. We havent began yet, but it looks to be expensive even after the insurance has paid their portion. Is anybody using this treatment and how much is it costing you? Is there any assistance out there?Thank you for any answers you can give.See More
Profile Information
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City and State:
- Palm Coast, Florida
- Country:
- United States
Comment Wall (9 comments)
- At 2:08pm on February 4, 2011, Penny Hauer said…
- I have a 4000 dollar pair of night splints I will send you Caleb could not wear them he has sactile problems and they were not for him I have prayed to find someone that I could give them too. call me or give me your address and I'll get them to you asap. they will have to be adjusted to him. PT could do her is my #619 929 2427 waiting to hear Penny
- At 1:13am on May 23, 2010,
Leslie Guzman said… - Hi Daniel's dad,,
I am Diego's mom :)
We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...
Thanks for your kind attention to this,
Leslie
Here is my email and phone number: guzman.l@pg.com or (513) 765-9416
- At 4:06pm on September 6, 2009,
Heidi Kruger said… - Hi Daniels Dad, we have not done hormone theraphy. Josh can still transfer due to be shorter so we are leaving him be. As far as the night splints have you tried shriners? Josh does not wear them and never has, he hates them and can't sleep in them. But they have made them for him in the beginning so I know they can do them.
- At 5:19pm on November 23, 2008,
Jennifer Collier said… - Hi danielsdad. Haven't seen you on in a while. Things going okay for you and your family?
- At 7:42pm on October 9, 2008, Jennifer Collier said…
- Glad to see you were able to join the Florida Families!! =)
- At 3:13pm on September 30, 2008, Jennifer Collier said…
- I am not sure what to tell you! Never had a problem joining groups or anything like that. I guess try again later. =(
- At 1:25pm on September 30, 2008, Jennifer Collier said…
- Hi again! That's what i have heard about Nemours and the MDA clinics around here. I am very happy that we have decided to return to Duke. The doc there is very knowledgable about DMD, and we already have a rapport with him. After hearing you talk about the MDA here, I am very glad we made the decision to go back to Duke. After all it is Duke!!! I know what you mean about the drive north. We are originally from Michigan - the Detroit area. We still have tons of family there, so we have made the trek there several times since we moved away. I actually drove to Michigan from NC - by myself with both kids!!! CRAZY!!! I have a five year old girl named Sarah, and Ryan is three. I also have a 17 year old step-son from my husband's previous marriage.
My husband is a sales rep for UniFirst - a uniform rental company. He just sold shirts and bar towels to the new Golden Corral there. He has been in Palm Coast trying to drum up more business.
Maybe sometime we could get our families together. It seems like you've been through a lot of the things we're going to face in the future with our little guy!
I hope all is well! Talk to you soon! :)
- At 10:48am on September 29, 2008, Jennifer Collier said…
- It's so great to know there is someone else nearby. We are new to Ryan's diagnosis, and we are new to the area. We recently moved from North Carolina. We are finding that the MDA clinic here stinks!! They keep blowing me off! We have decided to return to Duke in Durham, NC where Ryan was diagnosed. In fact he has all of his appointments there this Friday. The Florida families group is located under "Groups" at the top of the page. Just go there, find Florida families and click join. There is also a great "Dad's Only" group. Funny that you're in Palm Coast, my husband spends a lot of time there for business. He's there today actually. Do you have any more kids? Keep in touch - and take care!!!
-Jennifer
- At 12:56pm on September 28, 2008, Jennifer Collier said…
- Hi Daniels Dad,
Welcome to PPMD!! We live is St. Augustine. How old is your child? We have a three year old named Ryan who was diagnosed with DMD in May. PLease join the Florida Families group!!!! Hope to see you there!
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