Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Hi, Rita. My name is Jodi Zwain and I am a parent of a 12 year old boy with RSS, a teacher in a school for children with learning difficulties, a member of this list serve and the Email Coordinator for the RSS Division of the Magic Foundation. (Whew!) Salem is the RSS Division Consultant for Magic. I can be reached at either z4all@..., magicrss@..., or this list serve. can be reached at magicrss@.... But my reason for writing is not to promote Magic or any other organization above and beyond this list serve. My purpose is to welcome you to our group at this site and offer whatever support you may need. (The moderator of this list, by the way, is Ken Merrithew. He tries to keep us all in line. ) You are going to find a whole new world has opened up to you. We have a range of parents participating who have experienced just about anything related, or not related, to RSS that you can imagine. Just pose a question, and someone will try to answer. You want to scream out of frustration? Well, you can do that, too. You want to boast about something wonderful - we LOVE to hear those things! Now, you have asked a question about your child " catching up " regarding OT and speech....I can give you an almost definite yes to that one. What happens is that our kids start out with such low muscle tone and hypersensitivity to touch that they fall behind their peers. But with early intervention, as you are doing, and lots of encouragement and support, they do eventually catch up. It may seem like it takes a long time, but it will happen. On a personal note, my own son who could never hold a spoon like his peers, color, play with blocks, etc. now had the best cursive handwriting I have ever seen a 12 year old boy have - and he is a real artist. As for someone in the Seattle area, I know there is someone who used to belong to this list (forgot the name) who is also from that area, but I don't remember the name. Perhaps that person is still reading messages and will see your post. I also know of another family of a RSS daughter, but they don't participate on this list serve. I don't know if the mom will want to " chat, " but I can certainly ask her. I am going to stop here because I don't want to overwhelm you. If you have not, please check out the Magic website at www.magicfoundation.org. And don't forget to email me or if you have any questions! Jodi New to the Chat Room > Hi everyone! I'm new to this whole chat room thing so please bear with me. My son, who just turned 2, was diagnosed with RSS last year and since that time I have not been in contact with anyone who can relate to me and my son or just answer simple questions that I might have from time to time. So, here are a few questions. (1) I've been taking to occupational therapy and speech therapy. He really seems to be coming along, but I wonder if he'll ever catch up with his peers? I'm from the Seattle, WA area, are there any other families with RSS from my area? Any advice or answers to my questions would be greatly appreciated. > Rita. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Oh - it's and she has already responded! That is great. Sorry I forgot your name, . I just can't keep track of everyone anymore! Jodi New to the Chat Room > Hi everyone! I'm new to this whole chat room thing so please bear with me. My son, who just turned 2, was diagnosed with RSS last year and since that time I have not been in contact with anyone who can relate to me and my son or just answer simple questions that I might have from time to time. So, here are a few questions. (1) I've been taking to occupational therapy and speech therapy. He really seems to be coming along, but I wonder if he'll ever catch up with his peers? I'm from the Seattle, WA area, are there any other families with RSS from my area? Any advice or answers to my questions would be greatly appreciated. > Rita. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Rita - I apologize that I accidently deleted others' responses to your email (I saw the word chat room and deleted, not realizing you were referring to the listserve). But I spoke with Jodi and she said several emails were posted giving you lots of info. If you join MAGIC ($25 a year) - which everyone described already so I won't go into it again. You can then call MAGIC and they will be able to provide you with the names and numbers and email addresses of all RSS families in your area. I know of one family in Puyallup, WA??. You can also receive copies of all the articles free, etc. I am hoping others already told you all this already. If you have any questions, please don't hesitate to call me at - I am the volunteer RSS Division Consultant for MAGIC (and Jodi is the email coordinator for our division, too). This list serve is NOT connected with MAGIC - so don't get confused, although many families if not most do belong. I don't know where I would be without my " list serve family " and MAGIC. Life changes entirely once you have these two families, and you become such a better advocate for your RSS child (and you feel better, too, because you can rage, vent, cry, cheer, smile, ask for prayers AND support others through the listserve!!!). Salem (, 5.2yrs, now on GHT since 10/13/00, somewhere around 34lbs & 40 " ) RSS-Support wrote: > Hi everyone! I'm new to this whole chat room thing so please bear with me. My son, who just turned 2, was diagnosed with RSS last year and since that time I have not been in contact with anyone who can relate to me and my son or just answer simple questions that I might have from time to time. So, here are a few questions. (1) I've been taking to occupational therapy and speech therapy. He really seems to be coming along, but I wonder if he'll ever catch up with his peers? I'm from the Seattle, WA area, are there any other families with RSS from my area? Any advice or answers to my questions would be greatly appreciated. > Rita. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Hi Debra. Thanks for your e-mail. It's comforting to know that I'm not alone. I agree with what you say, it seems as though all the professionals I talk to, i.e., ped doctor, occupational and speech therapists, know nothing about RSS or haven't even heard of it. It's pretty frustrating. I do plan to join the Magic Foundation. I've already received so much information. My son met with an endocronologist last year. He checked for low hormone level and found that it was normal. He also took a bone age x-ray. His bone age is about 6 months behind. The Dr. recommended that we don't do growth hormone at this time. I feel like we should get a second opinion. I want to everything I can to help Josh and I feel the sooner we do it the better. What do you think? Rita. ---------- > > To: RSS-Support > Subject: Re: New to the Chat Room > Date: Saturday, March 31, 2001 10:22 PM > > Welcome Rita > I seem to be the first one to get your email. First off, you have found the > right place. You will learn more here than you ever thought possible. My son Adam, age 8 was > diagnosed at the age of 2 but I went 6 years with no information at all. I found this > wonderful place in August and my whole world has changed. If I have a problem, need advice or > just want to vent people here are just fabulous! > > I would strongly recommend that you join the Magic Foundation. It is a non > profit organization for children with growth disorders. RSS is just one of many. > It also has a list serve like this one. But the two combined provides you with some well > rounded information. > > You can find it at www.magicfoundation.org Follow the prompts for > becoming a member. It costs 30.00( Canadian, I think it's 25.00 US) to join. Now I am reluctant to give my visa over the computer so I printed the page to join and mailed it down. > > There is an excellent doctor who sees majority RSS patients. If you happen to go back and read the support group archives (where all our emails over the years have been posted) you will see Dr. H. mentioned regularly, she is in New York (I believe). I live in Toronto, Canada so I don't have the ability to see her, but everyone shares their experiences with her and we all learn from it. > > If you are searching for a good endo. let us know. Everyone comes from all around here. > Let's see if I can get them all this time. The States, Canada, Australia, Ireland, England, Spain (he was gone for awhile but is back) we had one from Russia for awhile but haven't heard from him lately, Alaska, and Italy. Gee I hope I didn't miss anyone. They can correct me LOL > > If you go to www.magicfoundation.org you will find that you can read many > of their brochures regarding RSS without becoming a member. Once you become a member you can get access to a quarterly newsletter and the list serve. As well, a convention is coming up > in July with Dr. H. among others speaking. It will be in Chicago. So that's all coming out > and in the planning stages as we speak. > Some of the things you will need to look at down the road are increasing > calories (many have used special formula). Since my son was diagnosed at 2 I didn't have that. > Some kids require feeding pumps to ensure adequate nutrition. IF you have to go that route, > many here have been through it and can help you. Many of us have NOT had to go that route > as well. So it depends on how well your child is doing. > > Later you may be presented with the option of trying growth hormone therapy. It is, usually, > a needle a night for a number of years. There is no research suggesting the benefits of this > inclusively yet. But so many of our older kids on this list serve and on Magic have seen > wonderful gains. It sounds incredibly frightening. My son just started in January of this > year. A little late, but it should still help. We've already seen good progress and growth. > It is something that may overwhelm you and you will read about it often on > here, but being one of the most recent ones here to start it....it can be done. I am > deathly afraid of needles, Adam was not exactly cooperative, but through trial and error and > tremendous support from this group and Magic we are now successfully doing the needles > every night. My son went from screaming under a table " no needle, I'll stay small " to > reminding me that it is time for his needle and he helps with the injection. That has all > happened since January. > > Please stay with us. Ask any and all questions that you have. Sometimes, > it's sad to say, we often run into doctors who do not have the best knowledge or the best help. > You will know when it's not right and we often help each other become advocates of our > children and go and get what we want. > > Another thing you should look into is something called hypoglycemia. Again, > due to Adam's late diagnosis I didn't know about it. But he does have it and I wish I'd > known when he was an infant. Basically, due to their small size the body is not able to > regulate sugar in the blood. For infants there can be a wide range of symptoms associated with it > at varying degrees. But most importantly is that infants should have regular night > time feedings. We strive to get our kids to sleep through the night, but in this case it > often can do more harm. So be sure to ask about that the next time you see your doctor. > > As far as your question goes about " catching up " I can only speak from my experience. Adam had incredibly delayed speech (he never did have any therapy--doc's said to give it time). But when his time came (which wasn't too much later than the end range of normal) he was off and flying and his current speech assessment has his verbal skills way above his grade/age range. He's in Grade 3 now. > My experience, limited and one sided as it is, is that he did catch up. Many other parents deal with more complex speech and language issues and I'll let them answer that one for you in more detail. > > > Take care and write again soon. > > Debby (in Canada, mother to Adam 8, 39 1/2 lbs. and 11 year old > Colette--just over 5 feet > tall!!) > > rita@... wrote: > > > Hi everyone! I'm new to this whole chat room thing so please bear with me. My son, who just turned 2, was diagnosed with RSS last year and since that time I have not been in contact with anyone who can relate to me and my son or just answer simple questions that I might have from time to time. So, here are a few questions. (1) I've been taking to occupational therapy and speech therapy. He really seems to be coming along, but I wonder if he'll ever catch up with his peers? I'm from the Seattle, WA area, are there any other families with RSS from my area? Any advice or answers to my questions would be greatly appreciated. > > Rita. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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