Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Hey Jaybeth my name is Sheldon and i am a Grandpa to a little angel named Laikyn and she will be 4 on April 9th. So i would like to take this oppurtunity to say " WELCOME HOME " . Why do i say welcome home because once you get to know us all we hope you will feel just like you are at home. So please come back soon. Sheldon Re: New Diagnosis Hi Jaybeth, Welcome to our group. I hope we can answer your questions. Sorry I can't help with the shoe question. Much of what you described sounded like my son. He is now 8, taking growth hormone and periactin. He is doing great. My son did not stand up until he was 18 months. he was almost 2 before he talked. We were teaching him sign language. Now, like I said he is doing great. I think you are about to become very good friends with Deb B who also lives in Toronto. Anyway, welcome to our group. Please feel free to ask anything. Ken M > > HI, > > This is my first time posting. We were just given the diagnosis > yesterday that Sydney (22 months) has RSS. Sydney is an identical > twin and her sister Leah is unaffected. They have a big sister > Charlotte who will turn 4 later in February. > > Sydney's struggle began very early when we discovered at about 26 > weeks that she was much smaller than her twin sister. The doctors > became quite worried at 27 weeks and I was admitted into the > hospital where I had at least one ultrasound, sometimes two a day. > I was able to carry the girls to 33 weeks (6 weeks in the hospital > with a 2 year old at home!) and the doctors delivered when the blood > flow reversed. Everyone assumed that we had twin to twin > transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz > and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was > in the NICU for 6 weeks and Leah just two. Sydney was gaining > weight very slowly although she breast feed from about week two on. > We just could never get much in her at once. > > Her gross motor skills were very delayed and by about 6 months > everyone was starting to get concerned. She had several tests done > but nothing was showing up. At first the doctors felt that she had > Prader Willi Sydrome but the tests all came back fine. > > She went through her most difficult period at 10-12 months. She was > actually diagnosed Failure to Thrive and it looked like we were > heading towards a g-tube. However, as a last resort our doctor > suggested domperidone and it worked wonders for her. She finally > got back on her curve (even though it was well below the 3rd > percentile) and started gaining some weight. > > When we finally got her bone age tests results back showing severe > delay (3-6 month age at 18 months) the geneticist made the diagnosis > of RSS. > > Sydney is just finally walking this month with the help of weekly PT > and her speech is really coming along over the past few months. She > is much happier now that she can move around like her sisters and > gets much less frustrated. She never did crawl so this is real > freedom for her. > > Sydney is still wearing a size one shoe, making it very difficult to > find walking shoes for her. (If anyone has any suggestions, I would > love to find a source for very small shoes.) > > At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure > that we will have many appointments over the next few months and at > this point my husband and I are just trying to gather as much > information as possible. We live just outside of Toronto, Canada. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Hi Beth In my excitement over another Canadian I forgot to mention the shoe part. Ken is very astute when he said you are about to make a new friend in me!!! LOL As said, Payless is a great place. It wasn't around when Adam was really small, we had a mom and pop shoe place here in Scarborough that sold those old fashion type of boot/shoe (you know the high, white ones made of leather?) and Adam wore those ones. However when Adam was young I never had a problem finding shoes at Zellers or Wal-Mart. Depending on where you end up being " close to Toronto " my sister knows of an excellent " old fashion " shoe place in Oshawa (but who knows you could be in Mississauga for all I know!) Let me know and I'll ask around. Debby Re: New Diagnosis Hi. Welcome to the group! Wow, sounds like you had a tough pregnancy. I can't imagine that all with a 2 yr old at home. I have a 24 mos old RSS daughter Autumn. I found out about the RSS when she was 7 mos old and joined this group. I have recieved so much help and support with everything that has gone on with Autumn since. She is now 18.5 lbs. She was 17.5 and 30.25 inches at 2 yrs and that was just 2 weeks ago! She had a lot of issues with refusal to eat/drink to the point of hospitalization a few times. She made herself so sick and unhealthy that she had a g-tube placed 3 mos ago at 21 mos.as a final resort. She was 16 lbs at that time and was 15 lbs 11 oz at 1 yr, so she was not well. She was always pale and sick and then it would make her not want to eat even less. We have tried the appetite stimulant for a year with no effect. We are starting her back on it now to see if maybe anything will happen this time but right now the g-tube is working wonders. I also have a 6.5 mos old daughter Summer who was born SGA and no catch up growth. She was IUGR adn induced for stopping her growth and low water. At 4 days was put in the NICU for reflux and malacia that made her oxygen lower drastically and seh would stop breathing and turned blue. She came home a week later and is doing so much better now at 6.5 mos although her reflux is still a little overwhelming! Her geneticiist suspects RSS with her too, but we are just working on tracking her growth now. She is doing well for her curve under the 3rd so far. I had a hard time bf her after birht too. She was so little, had a small lower jaw so very tought to latch on, and also would turn blue and pass out after 30sec to a minute of nurseing and I couldn't rouse her fore about 10-15 minutes at least. It was horrible They wanted to ng tube her but I told them to give me more time and if it didn't work, then they could. I was up around the clock and all i did was try to bf. We had to work very hard with therapists, docs, and monitors but I somehow got enough in her to prevent the tube. That was a tough time. She still doesn't take much, but she is doing well and acutally looks chunky for her small size/weight. As for the shoe question, I don't know what stores are where you live, but here in Ohio I have luck at payless and target. I have found prewalkers, size 0-4 that are narrow and just like the larger walker versions with normal soles...not the padded baby kind, so Autumn has done well with those. She is now a size 3 but started walking in a 1 I believe, or maybe it was a 0... mom to Autumn RSS 24.5 mos, Summer SGA Possible RSS 6.5 mos, and 2 big brothers Ocean 3.5 yrs, Skye 7.5 yrs > > HI, > > This is my first time posting. We were just given the diagnosis > yesterday that Sydney (22 months) has RSS. Sydney is an identical > twin and her sister Leah is unaffected. They have a big sister > Charlotte who will turn 4 later in February. > > Sydney's struggle began very early when we discovered at about 26 > weeks that she was much smaller than her twin sister. The doctors > became quite worried at 27 weeks and I was admitted into the > hospital where I had at least one ultrasound, sometimes two a day. > I was able to carry the girls to 33 weeks (6 weeks in the hospital > with a 2 year old at home!) and the doctors delivered when the blood > flow reversed. Everyone assumed that we had twin to twin > transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz > and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was > in the NICU for 6 weeks and Leah just two. Sydney was gaining > weight very slowly although she breast feed from about week two on. > We just could never get much in her at once. > > Her gross motor skills were very delayed and by about 6 months > everyone was starting to get concerned. She had several tests done > but nothing was showing up. At first the doctors felt that she had > Prader Willi Sydrome but the tests all came back fine. > > She went through her most difficult period at 10-12 months. She was > actually diagnosed Failure to Thrive and it looked like we were > heading towards a g-tube. However, as a last resort our doctor > suggested domperidone and it worked wonders for her. She finally > got back on her curve (even though it was well below the 3rd > percentile) and started gaining some weight. > > When we finally got her bone age tests results back showing severe > delay (3-6 month age at 18 months) the geneticist made the diagnosis > of RSS. > > Sydney is just finally walking this month with the help of weekly PT > and her speech is really coming along over the past few months. She > is much happier now that she can move around like her sisters and > gets much less frustrated. She never did crawl so this is real > freedom for her. > > Sydney is still wearing a size one shoe, making it very difficult to > find walking shoes for her. (If anyone has any suggestions, I would > love to find a source for very small shoes.) > > At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure > that we will have many appointments over the next few months and at > this point my husband and I are just trying to gather as much > information as possible. We live just outside of Toronto, Canada. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 I live in Whitby and work in Toronto so I am very close to you. Maybe one of these days we can get together. I have been seeing Dr. Chitayat at Sick Kids. He is our geneticist. We are waiting for a phone call today about an appointment with endocrinology so I am not sure who we will be seeing yet. I would love to know the doctors you have been seeing and your thoughts on everyone. We are getting our OT and PT through Grandview and Durham Infant Development. Sydney is also set to start speech therapy in about 2 months. I probably should have been clearer about the shoe issue. We can find the Size 1 shoes at Wal-mart/Payless/etc but the problem is that Sydney's ankles turn in quite a bit and her feet are very flat so she needs something with a lot of ankle support until they decide whether she will go into orthotics. There has been a lot of improvement since she started to weight bear, her whole leg below the knee used to turn, now it is just the ankle so they want to see what improvements she can make on her own. Anyway, she needs a lot of ankle support and I haven't been able to find any Stride Rites or similar shoes in a size one. They make size one but they are not a walking shoe. I would love to know the name of the store in Oshawa, perhaps they might have something more supportive. I did join the Magic Foundation yesterday as well. I am interested in knowing how everyone has approached the growth hormone therapy issue. What are the questions I should be asking at my appointment, when did most people start and are there any side effects that I should know about. Deb, it sounds like from your email that OHIP doesn't cover all of the cost of GHT - do they cover anything? My husband works for the City of Toronto and I work for the Provincial Government so hopefully our plans will cover it, if it is prescribed. Thank you to everyone for responding. I am sure I will have lots of questions over the next few weeks and months. It is actually somewhat of a relief to finally know what is happening with Sydney and at least now we can begin to manage and treat her rather than repeatedly testing her with no results! Re: New Diagnosis Hi. Welcome to the group! Wow, sounds like you had a tough pregnancy. I can't imagine that all with a 2 yr old at home. I have a 24 mos old RSS daughter Autumn. I found out about the RSS when she was 7 mos old and joined this group. I have recieved so much help and support with everything that has gone on with Autumn since. She is now 18.5 lbs. She was 17.5 and 30.25 inches at 2 yrs and that was just 2 weeks ago! She had a lot of issues with refusal to eat/drink to the point of hospitalization a few times. She made herself so sick and unhealthy that she had a g-tube placed 3 mos ago at 21 mos.as a final resort. She was 16 lbs at that time and was 15 lbs 11 oz at 1 yr, so she was not well. She was always pale and sick and then it would make her not want to eat even less. We have tried the appetite stimulant for a year with no effect. We are starting her back on it now to see if maybe anything will happen this time but right now the g-tube is working wonders. I also have a 6.5 mos old daughter Summer who was born SGA and no catch up growth. She was IUGR adn induced for stopping her growth and low water. At 4 days was put in the NICU for reflux and malacia that made her oxygen lower drastically and seh would stop breathing and turned blue. She came home a week later and is doing so much better now at 6.5 mos although her reflux is still a little overwhelming! Her geneticiist suspects RSS with her too, but we are just working on tracking her growth now. She is doing well for her curve under the 3rd so far. I had a hard time bf her after birht too. She was so little, had a small lower jaw so very tought to latch on, and also would turn blue and pass out after 30sec to a minute of nurseing and I couldn't rouse her fore about 10-15 minutes at least. It was horrible They wanted to ng tube her but I told them to give me more time and if it didn't work, then they could. I was up around the clock and all i did was try to bf. We had to work very hard with therapists, docs, and monitors but I somehow got enough in her to prevent the tube. That was a tough time. She still doesn't take much, but she is doing well and acutally looks chunky for her small size/weight. As for the shoe question, I don't know what stores are where you live, but here in Ohio I have luck at payless and target. I have found prewalkers, size 0-4 that are narrow and just like the larger walker versions with normal soles...not the padded baby kind, so Autumn has done well with those. She is now a size 3 but started walking in a 1 I believe, or maybe it was a 0... mom to Autumn RSS 24.5 mos, Summer SGA Possible RSS 6.5 mos, and 2 big brothers Ocean 3.5 yrs, Skye 7.5 yrs > > HI, > > This is my first time posting. We were just given the diagnosis > yesterday that Sydney (22 months) has RSS. Sydney is an identical > twin and her sister Leah is unaffected. They have a big sister > Charlotte who will turn 4 later in February. > > Sydney's struggle began very early when we discovered at about 26 > weeks that she was much smaller than her twin sister. The doctors > became quite worried at 27 weeks and I was admitted into the > hospital where I had at least one ultrasound, sometimes two a day. > I was able to carry the girls to 33 weeks (6 weeks in the hospital > with a 2 year old at home!) and the doctors delivered when the blood > flow reversed. Everyone assumed that we had twin to twin > transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz > and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was > in the NICU for 6 weeks and Leah just two. Sydney was gaining > weight very slowly although she breast feed from about week two on. > We just could never get much in her at once. > > Her gross motor skills were very delayed and by about 6 months > everyone was starting to get concerned. She had several tests done > but nothing was showing up. At first the doctors felt that she had > Prader Willi Sydrome but the tests all came back fine. > > She went through her most difficult period at 10-12 months. She was > actually diagnosed Failure to Thrive and it looked like we were > heading towards a g-tube. However, as a last resort our doctor > suggested domperidone and it worked wonders for her. She finally > got back on her curve (even though it was well below the 3rd > percentile) and started gaining some weight. > > When we finally got her bone age tests results back showing severe > delay (3-6 month age at 18 months) the geneticist made the diagnosis > of RSS. > > Sydney is just finally walking this month with the help of weekly PT > and her speech is really coming along over the past few months. She > is much happier now that she can move around like her sisters and > gets much less frustrated. She never did crawl so this is real > freedom for her. > > Sydney is still wearing a size one shoe, making it very difficult to > find walking shoes for her. (If anyone has any suggestions, I would > love to find a source for very small shoes.) > > At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure > that we will have many appointments over the next few months and at > this point my husband and I are just trying to gather as much > information as possible. We live just outside of Toronto, Canada. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 OK Whitby is great!! My other sister is in Whitby (one is Oshawa and one in Whitby) heck you are next door!! LOL I shall call my sister in Oshawa this evening and ask her the name of the shoe store but I am pretty sure it's in the Oshawa centre. I've never been there, but apparently she lives there! LOL But I will tell you Diane is a fanatic when her kids first began to walk that they had to have those expensive, ankle support high top boot/shoe. And she got them there. I am sure they would make them in a size one or at least know where to purchase them. They would be your best bet. As I said I will call her after dinner and ask. Question 2. I didn't do my genetic appts at Sick Kids. Mine were done at North York General. However, the endo you will probably be referred to is Dr. Daneman. Charlene was just saying last week, she has seen him as well and he felt the height/weight ratio was not as big for so he wasn't going to pursue anything at this point in time and Sydney is even younger! As I am sure you have gleamed from your readings there is a doctor in New York, Dr. H. that sees a high number of RSS children (over a 100). I have had the opportunity to have her " consult " with me in regards to Adam both times we went to the convention in Chicago (she donates her time to us " visiting " parents and her regular parents during the convention) and her treatment recommendations/concerns were never too far off from what Dr. Daneman has been doing. I will tell you though, that Dr. H. feels that children should have a height to weight ratio in at least the 15 th percentile so that their calorie intake and their weight can be sustained when they start GH and start to grow taller. However, she also is cautious with the really young babies that they do their " catch up " growth before starting GH. That " catch up " growth wasn't an issue when Adam started (he was 8 years old) so I don't know all about it. I'm sure someone else can fill you in. But my point is to say that even if you start by seeing Dr. Daneman now, he may not prescribe GH for several years or he might do it. Who knows, but delaying it would seem to be instep with how Dr. H. is doing things now with the babies. Ok so OHIP. Absolutely nothing of the GH is covered by OHIP. Obviously all the doctor visits are covered but the needles and the actual medication is not. So it's important to figure out if you would get coverage. Any chance you or your husband is with Great West? They insure me through the school board. Now the first time I applied under " special circumstances " (and we do this with a letter from the endo saying it is needed) Great West told me no. I was heart broken. But the drug company (Eli Lilly) approved us on their compassionate program and promised us the GH for free for as long as Adam needed it so we started right then. At the same time they assigned me a case worker who helped me get all the necessary research and documentation needed to appeal the insurance ruling; and in 3 months it was over ruled and we have been covered for 5 years now (minus those 3 months). I continued to fight the insurance company because I thought if *I* can get it covered, and thus allow someone more needy to get one of their compassionate " spots " I would do so. In September this year a " computer glitch " resulted in my being mistakenly told by Great West we were no longer covered, and after my freak out, I contacted Eli Lilly and they were immediately opening the file to start us up for free again; and then insurance called to say " oops computer glitch " (GRRR) So while GH may be your end result with Sydney, you have a long road to travel first before you get to that point. However, you guys sound like you would probably have the right insurance for it. Another point, getting back to Dr. Daneman. There is a certain maximum amount of GH children can be prescribed for their weight. I am totally going to make up this number (so no one hold me to it) but let's say it 4 mg/kg of weight. TOTALLY MADE UP NUMBERS. So in Canada the maximum is 4 mg/kg but in the States it is higher, kids there can get 6 mg/kg. So what has Dr. Daneman done? Well he has noticed Adam is running out of grow time (now that he is 13) and his growth *could* be even better, so even though he is not supposed to go over 4 mg/kg; he has Adam on 5 mg/kg. He told me it's still not as high as the US (and obviously that is safe) but more than normal. So that made me happy to know that he is that knowledgeable about things that he can confidently and smartly do that for us. So, yeh, overall I think he's a good guy, I think our appts. can be rushed and sometimes I am afraid to ask all my questions, but if you get all your questions in to the fellows (they take all the info first) then the fellow will usually tell the doc what you asked! Adam was also a patient of Dr. Khoury's for his undescended testicles surgery, and we are currently seeing a psychiatrist there on occasion, we did see a dietician there years ago (not much help) and Adam had 2 sleep studies done there (he roams all over the bed in his sleep and they said he definitely has a sleep disorder, it's just they can't do anything about it). But we really started this doctor business through North York General---genetics, neurologist etc. and they did most of the initial testing. OK this email got too long. I wanted to say to ask any and all questions you want. We love to answer and to help and chances are if one person doesn't know the answer, 3 more will pipe up that do! I'll email you later on this evening with the shoe store name etc. Debby Re: New Diagnosis Hi. Welcome to the group! Wow, sounds like you had a tough pregnancy. I can't imagine that all with a 2 yr old at home. I have a 24 mos old RSS daughter Autumn. I found out about the RSS when she was 7 mos old and joined this group. I have recieved so much help and support with everything that has gone on with Autumn since. She is now 18.5 lbs. She was 17.5 and 30.25 inches at 2 yrs and that was just 2 weeks ago! She had a lot of issues with refusal to eat/drink to the point of hospitalization a few times. She made herself so sick and unhealthy that she had a g-tube placed 3 mos ago at 21 mos.as a final resort. She was 16 lbs at that time and was 15 lbs 11 oz at 1 yr, so she was not well. She was always pale and sick and then it would make her not want to eat even less. We have tried the appetite stimulant for a year with no effect. We are starting her back on it now to see if maybe anything will happen this time but right now the g-tube is working wonders. I also have a 6.5 mos old daughter Summer who was born SGA and no catch up growth. She was IUGR adn induced for stopping her growth and low water. At 4 days was put in the NICU for reflux and malacia that made her oxygen lower drastically and seh would stop breathing and turned blue. She came home a week later and is doing so much better now at 6.5 mos although her reflux is still a little overwhelming! Her geneticiist suspects RSS with her too, but we are just working on tracking her growth now. She is doing well for her curve under the 3rd so far. I had a hard time bf her after birht too. She was so little, had a small lower jaw so very tought to latch on, and also would turn blue and pass out after 30sec to a minute of nurseing and I couldn't rouse her fore about 10-15 minutes at least. It was horrible They wanted to ng tube her but I told them to give me more time and if it didn't work, then they could. I was up around the clock and all i did was try to bf. We had to work very hard with therapists, docs, and monitors but I somehow got enough in her to prevent the tube. That was a tough time. She still doesn't take much, but she is doing well and acutally looks chunky for her small size/weight. As for the shoe question, I don't know what stores are where you live, but here in Ohio I have luck at payless and target. I have found prewalkers, size 0-4 that are narrow and just like the larger walker versions with normal soles...not the padded baby kind, so Autumn has done well with those. She is now a size 3 but started walking in a 1 I believe, or maybe it was a 0... mom to Autumn RSS 24.5 mos, Summer SGA Possible RSS 6.5 mos, and 2 big brothers Ocean 3.5 yrs, Skye 7.5 yrs > > HI, > > This is my first time posting. We were just given the diagnosis > yesterday that Sydney (22 months) has RSS. Sydney is an identical > twin and her sister Leah is unaffected. They have a big sister > Charlotte who will turn 4 later in February. > > Sydney's struggle began very early when we discovered at about 26 > weeks that she was much smaller than her twin sister. The doctors > became quite worried at 27 weeks and I was admitted into the > hospital where I had at least one ultrasound, sometimes two a day. > I was able to carry the girls to 33 weeks (6 weeks in the hospital > with a 2 year old at home!) and the doctors delivered when the blood > flow reversed. Everyone assumed that we had twin to twin > transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz > and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was > in the NICU for 6 weeks and Leah just two. Sydney was gaining > weight very slowly although she breast feed from about week two on. > We just could never get much in her at once. > > Her gross motor skills were very delayed and by about 6 months > everyone was starting to get concerned. She had several tests done > but nothing was showing up. At first the doctors felt that she had > Prader Willi Sydrome but the tests all came back fine. > > She went through her most difficult period at 10-12 months. She was > actually diagnosed Failure to Thrive and it looked like we were > heading towards a g-tube. However, as a last resort our doctor > suggested domperidone and it worked wonders for her. She finally > got back on her curve (even though it was well below the 3rd > percentile) and started gaining some weight. > > When we finally got her bone age tests results back showing severe > delay (3-6 month age at 18 months) the geneticist made the diagnosis > of RSS. > > Sydney is just finally walking this month with the help of weekly PT > and her speech is really coming along over the past few months. She > is much happier now that she can move around like her sisters and > gets much less frustrated. She never did crawl so this is real > freedom for her. > > Sydney is still wearing a size one shoe, making it very difficult to > find walking shoes for her. (If anyone has any suggestions, I would > love to find a source for very small shoes.) > > At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure > that we will have many appointments over the next few months and at > this point my husband and I are just trying to gather as much > information as possible. We live just outside of Toronto, Canada. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 hi jaybeth, wellocome home is how we all feel here. get place to get good info for your child and much support for some tiring time and for all the good times too. mom to jacob 9 rss/sga ght zantac flonase zertec and peractin Sheldon Sime wrote: Hey Jaybeth my name is Sheldon and i am a Grandpa to a little angel named Laikyn and she will be 4 on April 9th. So i would like to take this oppurtunity to say " WELCOME HOME " . Why do i say welcome home because once you get to know us all we hope you will feel just like you are at home. So please come back soon. Sheldon Re: New Diagnosis Hi Jaybeth, Welcome to our group. I hope we can answer your questions. Sorry I can't help with the shoe question. Much of what you described sounded like my son. He is now 8, taking growth hormone and periactin. He is doing great. My son did not stand up until he was 18 months. he was almost 2 before he talked. We were teaching him sign language. Now, like I said he is doing great. I think you are about to become very good friends with Deb B who also lives in Toronto. Anyway, welcome to our group. Please feel free to ask anything. Ken M > > HI, > > This is my first time posting. We were just given the diagnosis > yesterday that Sydney (22 months) has RSS. Sydney is an identical > twin and her sister Leah is unaffected. They have a big sister > Charlotte who will turn 4 later in February. > > Sydney's struggle began very early when we discovered at about 26 > weeks that she was much smaller than her twin sister. The doctors > became quite worried at 27 weeks and I was admitted into the > hospital where I had at least one ultrasound, sometimes two a day. > I was able to carry the girls to 33 weeks (6 weeks in the hospital > with a 2 year old at home!) and the doctors delivered when the blood > flow reversed. Everyone assumed that we had twin to twin > transfusion syndrome or placenta discordance. Sydney was 2p, 11 oz > and 41 centimeters at birth. Her sister was 4p, 8 oz. Sydney was > in the NICU for 6 weeks and Leah just two. Sydney was gaining > weight very slowly although she breast feed from about week two on. > We just could never get much in her at once. > > Her gross motor skills were very delayed and by about 6 months > everyone was starting to get concerned. She had several tests done > but nothing was showing up. At first the doctors felt that she had > Prader Willi Sydrome but the tests all came back fine. > > She went through her most difficult period at 10-12 months. She was > actually diagnosed Failure to Thrive and it looked like we were > heading towards a g-tube. However, as a last resort our doctor > suggested domperidone and it worked wonders for her. She finally > got back on her curve (even though it was well below the 3rd > percentile) and started gaining some weight. > > When we finally got her bone age tests results back showing severe > delay (3-6 month age at 18 months) the geneticist made the diagnosis > of RSS. > > Sydney is just finally walking this month with the help of weekly PT > and her speech is really coming along over the past few months. She > is much happier now that she can move around like her sisters and > gets much less frustrated. She never did crawl so this is real > freedom for her. > > Sydney is still wearing a size one shoe, making it very difficult to > find walking shoes for her. (If anyone has any suggestions, I would > love to find a source for very small shoes.) > > At 22 months, Sydney is 19 pounds and 74 centimeters. I am sure > that we will have many appointments over the next few months and at > this point my husband and I are just trying to gather as much > information as possible. We live just outside of Toronto, Canada. > Quote Link to comment Share on other sites More sharing options...
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