Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi and welcome to the group. My name is and my son, , is the exact same age as your son. It appears that has apraxia as well. He has no words but does babble constantly although his babble is not " real " babble (which means that his babble is not making the correct sounds that children without speech difficulties make). is really drooling more now that he is babbling more. The drooling drives me nuts! also has hypotonia (weak trunk muscles, weak tongue muscle, weak leg muscles). He walked only a few days before his second birthday. I went into speech therapy with high hopes thinking that we would only need it for 6 months or so (I had no understanding of apraxia). Now it looks like I am going to have to fight the insurance company for years of therapy. HOWEVER, I am noticing tiny little magical improvements on a weekly basis and they are so fun to watch! I know in speech therapy that he is getting the time and educated attention that he needs! Stay strong and continue to do whatever you can for your little one! Both you and your husband will enjoy watching his progress. Mom to (32 months; developmental delays, apraxia, and hypotonia) and (12 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 , 's story sound so familiar. 1. Not many docs will apply serial corrective plaster casts for many reasons...But here are the most popular reasons/excuses not to. -dont know how -have been taught that bracing is just as effective. -docs workload increases 80% for that particular child for the next yr, or so. -not cost effective for the docs practice/hospital (casts cost more than bracing) -not enough American published articles on casts -not familiar with the effectiveness of early treatment (most will apply casts to a child with a severe case of scoli..they will wait until the curves are reaching dangerous degrees, then use the casting treatment as a last ditch effort at maintenance. If any of you can think of more reasons/excuses that I have forgotten, please post! 2. I know of a couple moms in this group that have children with arthrogryposis... and _____________? 3. As long as has had an mri to rule out congenital/structural anomolies, she should be a candidate for casts. 4. Check out Dr. in Erie, PA. I know thats not that close to you, but I truly am not aware of anyone casting in that area, YET.. 5. Absolutely yes...plaster casts are far more comfortable for infants/kiddos. Braces have been proven to be of no significant benefit for infantile scoliosis. , can I provide you with a video about serial corrective plaster casts produced by Dr. Mehta and her foundation ARISE in the U.K.? I can send it for free. If you decide that you would like to keep it, you can pay for it...If not, just send it back to me, so it can be recirculated to other families. Let me know, and thanks for joining our group! Sincerely, H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 Thanks for the information . Please do send us the video - my husband and I both would like to see it and share it with 's health care providers. Is that okay? Go ahead and let me know the cost and I can send you the money. was diagnosed with Prader-Willi Syndrome at three weeks of age. PWS is a genetic disorder where there is either a small deletion in one of the 15th chromosomes or there are two paternal chromosomes and no maternal. The first stage if the syndrome begins at birth with low muscle tone and little or no ability or desire to eat. The second stage begins between the ages of 1 and 6 and is life long. The children begin to feel hunger all of the time and if control is not maintained by the parents, they will become morbidly obese. Cognitive delays and behavioral issues can and usually do develop because of the childs preoccupation with eating. I usually do not share the name of our diagnosis because the information obtained by looking on the internet is so bad. It is all very dated. The genetic makeup has just been distinguished in the last ten years and the children today are doing so much better with early intervention. Again. Thank you for your information and the effort that you take with your site. It is a great benefit to many people walking in your foot steps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 , Please show the video to as many people as you can, including any health provider that will take the time. E-mail me privately with the address that you would like the video to be sent to. Like I said, if you decide that you want to keep it, you can pay for it..If not, send back. The cost is $17.50. Please make check to C.P. of Colorado, but make sure to designate it to ISOP (The Infantile Scoliosis Outreach Program). Thanks, HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Welcome to the group, ! I hope you enjoy yourself here! My anniversary is November 18, 2007 which was also my 38th birthday! From: Sent: Saturday, October 16, 2010 10:08 PM Subject: [ ] New to the group Greetings to everyone! My name is and I was diagnosed with RA on Feb. 20, 2009. Isn't interesting how we remember those life changing days...birthdays, weddings, RA diagnosis. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.