Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 I was told my son had RSS when he turned 2.5 years old Today he is 8 years old looks like a 4.5 year old talks like a 3 year old he just started to talk he has had 7 sets of tubes for his ears because he keeps getting really bad ear infections he weighs 35 pounds still in a car seat he also has gerd and he has learning disabilities and he can not have any milk products due to a milk protien allergy He is In 2nd grade but doing preschool work he cannt read i just need some help understanding this disease i am a single mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Hi Single Mom, Welcome to our group. I hope we can answer your questions and provide some assistance. First, where do you live? Maybe some one on this list lives near you and can recommend a doctor who has other RSS patients. Second, you might want to contact the Magic Foundation. They have an annual convention coming up in July, you can meet up with over 100 families who have RSS kids and some RSS adults as well. Also, there will be a doctor there who has over 100 RSS patients herself. Contact the RSS Division rep Brock Salem to schedule an appointment to see Dr. Harbison. The web page for the Magic Foundation is http://www.magicfoundation.org is a member of this list and she may answer some of your questions also. May I ask a few questions? What have your son's doctors recommended to you? Has anyone suggested periacin -- an anithistamine that acts as an appetite stimulant? Has anyone suggested growth hormone? Have you tried boosting the calories in his food -- adding butter etc. Has anyone suggested any calorie boosters such as Polycose? Has your son's doctor recommeded a nutritionist? Is your son in the special ed program at his school? Does he have an IEP? Has he been coded? Is the school providing any therapy (Speech, O/T, P/T)? Is he in a reading program? My son is also 8 and in the second grade. Other than RSS, he is doing really well. He does not have the learning disabilities you mentioned. However, he walked and talked late. He was delayed in school for a while but has now caught up. Regarding the ear infections, many on this list have children who also have multiple ear infections, ear tubes etc. They can better advise you than I can. Please feel free to ask us any question RSS related or not. We will do our best to help as best we can. I hope this helps. Ken M > I was told my son had RSS when he turned 2.5 years old Today he is 8 > years old looks like a 4.5 year old talks like a 3 year old he just > started to talk he has had 7 sets of tubes for his ears because he > keeps getting really bad ear infections he weighs 35 pounds still in a > car seat he also has gerd and he has learning disabilities and he can > not have any milk products due to a milk protien allergy He is In 2nd > grade but doing preschool work he cannt read i just need some help > understanding this disease i am a single mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 hi i just joined this group within the last week and every one here is SO amazingly supportive....my daughter is 4 and has RSS, she has had 3 sets of tubes and i refuse to put her through surgery again for another set because they haven't helped her at all.....kyla has a few learning disabilities, she weighs 23 pounds the suggestion for magic is wonderful, if there is any way possible to go to the convention, GO this will be our first year and i am so excited there are scholarships to help pay your hotel and convention fees and fundraisers you can do to help pay your airfare if you live far away from chicago, i am putting an ad in my newspaper,doing tupperware sales as many of us here, and marykay sales so there are ways to go if you can get off work............i hope you find all your answers here, everyone here is great, so WELCOME stephanie mom of kyla 4,rss and jonathan 19 months, healthy -- In RSS-Support , " jlajjcjr95 " <jlajjcjr95@y...> wrote: > I was told my son had RSS when he turned 2.5 years old Today he is 8 > years old looks like a 4.5 year old talks like a 3 year old he just > started to talk he has had 7 sets of tubes for his ears because he > keeps getting really bad ear infections he weighs 35 pounds still in a > car seat he also has gerd and he has learning disabilities and he can > not have any milk products due to a milk protien allergy He is In 2nd > grade but doing preschool work he cannt read i just need some help > understanding this disease i am a single mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Hello, Welcome to our group. If you just hang out here and read some of the posts, you will learn so much. Also, feel free to ask ANY question, and you will certainly get an answer if someone knows it! ) We are all here to help each other, so welcome aboard and check out the MAGIC Foundation. It has so much onformation adn they are great and helpful people. It would be great if you and your son could come to the COnvention in Chicago in July. The US expert in RSS will be there adn she sees the kids on an appointment basis. Take care, Jodi R. , 3, RSS, reflux, Prilosec, J tube for nutrition. > I was told my son had RSS when he turned 2.5 years old Today he is 8 > years old looks like a 4.5 year old talks like a 3 year old he just > started to talk he has had 7 sets of tubes for his ears because he > keeps getting really bad ear infections he weighs 35 pounds still in a > car seat he also has gerd and he has learning disabilities and he can > not have any milk products due to a milk protien allergy He is In 2nd > grade but doing preschool work he cannt read i just need some help > understanding this disease i am a single mother Quote Link to comment Share on other sites More sharing options...
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