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Posted in: Support Discussion Forum on 11 Feb 2010 15:24:02 by Sara
Last Reply: 11 Feb 2010 12:34:58
Hoyer Lifts
I would like to hear from those of you who have used or may be using Hoyer Lifts. Did you find the lift to be very helpful? I am being encouraged to get one to use with our daughter- just very unsure as to whether I want one.

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On: 12 Feb 2010 11:08:49 By: Tini
Sara, Using a lift can save your back lots of wear and tear. I don't know your situation, our son is 220+ lbs and a lift is the only way we are able to get him moved on some days or off the floor on the occasions we miss the chair. I was familiar with using lifts from my days of being a CNA, they are very easy to use, and safe. You just need to make sure you have the sling positioned right and the lift does the rest. If you are doing the majority of the lifting, I would definately recommend. Check with Amy and the equipment exchange there may be something available for you there.
On: 20 Feb 2010 17:37:50 By: Wendy Weaver
I think the hoyer lift is a great idea. I have been a Certifed Nurses Assistant for 9yrs. I also have a son with Batten's. I have used all different kinds of lift on my patients. They are easy to use but it is a safe way to care for loved ones. So you can lift them and not hurt them by tugging in places you shouldn't plus some of them can't tell you that you are or did hurt them. This way you lift all parts of them at the same time with no tugging and pulling. In this instant you won't hurt yourself either. Because they need you to stay strong to help care for them. You can even use some lift sheets for bathing them on so they can stay secure so you can bathe them and be safe so they don't slip under the water. & you won't hurt your back. I wish you the best of luck. God bless you and your family.
On: 27 Feb 2010 08:05:01 By: Casey
Im a nursing student in Michigan. My first semester of clinicals was in a nursing home. I was intimidated by the lift until about the 4th or 5th time I used it. It works great. It's not uncomfortable for the patient either. Once you use it a few times you become quick and you save your own back.
On: 09 Mar 2010 23:03:22 By: Jo
Hi Sara, I started looking for work in disability as soon as my son Taylor was diagnosed with battens to get the knowledge and know how that I would need in the future. I have now been working in this field for 4 years. I recommend to any parent with a child with any disability to use a lift as it saves the wear and tear on your own body. If you hurt yourself you can't help them or yourself, good luck with everything
On: 18 Mar 2010 12:34:58 By: Martha
I use the hoyer lift on my 24 year old son, 160 lbs., and it works well. He likes it. He feels secure. I use it for transfers and also for when I have to change the bed, it is more comfortable for him than rolling him back and forth.

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Posted in: Support Discussion Forum on 16 Mar 2010 13:08:03 by Nancy Peruyero
Last Reply: 16 Mar 2010 13:08:03
Electric stimulation
I have a 4 year old son with LINCL. His physical therapist would like to try electrical stimulation to strengthen some of his muscles. I'm just not sure if this would have any bad effects on him and would like to know if anyone has tried this?
Thanks...

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Posted in: Research Discussion Forum on 24 Feb 2010 17:48:14 by Amiee
Last Reply: 24 Feb 2010 05:04:16
Ataluren Drug Trial
My daughter Madison is 14 1/2 years old JNCL. I was told about Ataluren today. Has anyone heard of the research involving Ataluren? It is being developed to treat nonsense mutation development disorders. I was directed to this websight... ptcbio.com I am not sure if this applies to Batten Disease. Does anyone else have any information? Thanks, Amiee

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Posted in: Support Discussion Forum on 06 Feb 2010 13:23:23 by Tony Heffernan
Last Reply: 06 Feb 2010 13:23:23
Brain Stem Seizures
hi

My daughter Saoirse has started suffering from brain stem seizures and has had several of these in the past week, which last for upto 4 hours each and place her in a coma like state, we had been in hospital whilst this was happening and we were lucky.

has anyone any experience of these?

regards

Tony

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Posted in: Support Discussion Forum on 29 Jan 2010 07:07:13 by Stephanie Anderson
Last Reply: 29 Jan 2010 13:20:49
Mucus Problems
My son Thomas (Infantile) has been producing a MAJOR amount of mucus. He is especially mucussy in the evening and thru part of the night. We give him medicine (Robitussin) to help break it up, but it really doesn't work. The mucus is SO thick that it takes forever and alot of work to get it up thru his G-tube and during that time he is gagging and swallowing air therefore, we can't release the air building up in his stomach due to the blockage of the mucus in the g-tube. Our pediatrician doesn't give me any ideas although he did give us a prescription for a medicine that will dry up secretions (seemed to worked the first few days but not anymore).

I know if someone was in the hospital and had to be given medication for mucus relief, they wouldn't pull out robitussin from over the counter.

Any suggestions or any doctors that specialize in this type of problem?

Thanks

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