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Glen, Emily, and Gabriel Stephens
lundi 16 février 2009 20:40
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Neuromuscular Electrostimulation Therapy
I wanted to be sure that it was not just wishful thinking on our part before I posted about a therapy that we are doing with Gabriel. But the results are quite astonishing. Gabriel’s clinical therapists have been working for 2 ½ years to try and counter his dramatic ciphosis (curvature caused by weak muscles in the back and tonal muscles in the front). Well, we were just about to advocate beginning oral medication to weaken the tone of the muscles in the front. The unfortunate side-effect of oral medication, as we have all experienced, is that it globally weakens the tone. It is extremely hard to target groups of muscles independent of other muscle groups. Well, we decided to try a therapy technique on a regular basis that we experimented with late last year (2008). It is called neuromuscular electrostimulation (NMES). It involves placing electrodes on the skin directly over the targeted muscle group. A small battery powered control unit controls the impulses. The impulses are very soft and fairly short in duration. Each treatment is about 1 hour long. The control unit and electrodes are inexpensive compared to other equipment or therapies we as a group have tried. A therapist is consulted as to the correct settings on the battery powered control unit. Gabriel has two, one hour sessions a day. Once you place the electrodes and turn on the control unit, the session is completely passive. An
Guest
jeudi 12 février 2009 03:13
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To Amutha
My name is Padma. I live in Arlington,VA, usa. I have 3 1/2 years old daughter who has been diagnosed with AGS. I saw your email in AGS website. So I thought of contacting you. Please free to email me . Email address: beltway_05@yahoo.com
Amutha
mercredi 11 février 2009 23:36
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Hai everyone, I have a 3 month old son who have mostly all the symptoms for AGS. He is my only son and we have been in hospital most of the time after his birth.He had reflux, did fundo and G-button surgery, have elevated WBC in spinal, calcification,fever, seizures,etc,etc.I need your help. I live in United States currently.my doctor did not know how to send the blood to England for AGS confirmation. We would like to know how and where to send it, the cost to do it and any other things that I should know of. Really I am blind folded, never heard about AGS before, do not know what to do.Please contact me thru my email so that I can proceed further. Thanking everyone in advance.
Tracey Dicely
jeudi 22 janvier 2009 01:05
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My mother works with a young woman who is burying her 2nd infant child who had this disease.
Debbie and Pat Sinnott
lundi 5 janvier 2009 06:19
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On March 27th 2007 we found out our son(Dane Patrick) had Leukodystrophy. At first Dane was having a few eating problems and was diagnosed with MSPI (Milk, Soy, Protein Intolerance). After he wasn’t getting any better and the many calls we made to the doctor’s office, they finally did a brain ultra-sound. This was followed by more tests that confirmed his diagnosis. Dane is now 2 years old and was finally diagnosed with AGS. Some of the doctors thought he wouldn\'t make it this far. He does have several problems but he is a fighter. After a lab in Germany (Dr. Crow) pin pointed the gene for Dane we sent in our bloodwork. It was confirmed that my husband and I both have a abnormal gene on Trex 1. We have no prior family history and Dane is our only child. We visit our Genetic doctor this Wednesday (1/7/09) to go over more details. I think our doctor stated that the Trex 1 was related to AGS. Does anyone know how many cases of AGS are in the US and what doctors are you seeing? Thanks, Debbie, Pat and Dane Sinnott Omaha, NE
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