Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hey Jo! Congrats on the 43 years with hubby and welcome to the group. ===== judy in austin __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 There are a couple of Canadians on this list serve and I'm sure they will be responding to you soon. I don't know of many support groups that meet together but most of the people on this list serve share information, questions, concerns and joys. You should also check out the MAGIC Foundation which has a RSS division, they are a wealth of information. How old is your child and what are your main concerns right now? Pattie (Jon RSS - 8 years old) > Hi, we have just been informed that our child has RSS, are there any > support groups in Ontario Canada? We are still learning about RSS > and need help and support, thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Lauri - The only nonprofit organization for RSS families in North America is the MAGIC Foundation. Go to their website. www.magicfoundation.org. Call them tollfree right away at 800- 3MAGIC3 and ask them to mail you all the introductory RSS information. Membership is only $35 a year/Canadian, and there is tons of info. (I am a volunteer with MAGIC). We do have quite a few Canadian families (and some on this listserve). MAGIC can hook you up with the names and email/phone numbers of them as well. Read through the MAGIC RSS literature. Read through old postings here on this listserve. And future ones. You will learn a lot.' How old is your child, and is it a son or daughter? Things will be fine. It can get scary and overwhelming at times, but truly, on a scale of 1-10 for medical disorders, I personally think RSS is pretty low on the list for " seriousness. " Your child will struggle to gain weight (but there are lots of tips to help and some medical interventions if need be), your child will be shorter-statured (unless you choose to do GH), you will need to deal with school issues but that may be a ways off if your child is young, and you will get an amazing child who you just love to death!!!! I am glad you found us here. S. (, just turned 7 - RSS, and Tyler, almost 6, non-RSS) > Hi, we have just been informed that our child has RSS, are there any > support groups in Ontario Canada? We are still learning about RSS > and need help and support, thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Hi there I apologize for not seeing this email sooner. We live in Toronto. Where are you? Unfortunately, there are no support groups here, however I am here !!!! Let me know where you live and I'll give you some details. My son is 10 1/2 now, I found out he had RSS when he was over 2 years old. We've been doing GHT for 2 years now. If you need any help with *the Canadian system* I'm glad to help. Again, I apologize for the late reply. I am soooo behind in my emails. Debby new > Hi, we have just been informed that our child has RSS, are there any > support groups in Ontario Canada? We are still learning about RSS > and need help and support, thank you. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Hi there I apologize for not seeing this email sooner. We live in Toronto. Where are you? Unfortunately, there are no support groups here, however I am here !!!! Let me know where you live and I'll give you some details. My son is 10 1/2 now, I found out he had RSS when he was over 2 years old. We've been doing GHT for 2 years now. If you need any help with *the Canadian system* I'm glad to help. Again, I apologize for the late reply. I am soooo behind in my emails. Debby new > Hi, we have just been informed that our child has RSS, are there any > support groups in Ontario Canada? We are still learning about RSS > and need help and support, thank you. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 HI No you don't need an IUI to get pg with an abdominal. Those that have it done pre-pg generally do not have any issues with fertility because they usually leave a hole around the same size as it would be during normal ovulation. Some have had problems conceiving but that might be due to other factors or they have had IF problems in the past. I don't know about limits on c-sections you can have, although I don't think doctors like to perform more than around 4 (but don't quote me on this as I'm not sure). As far as laproscope, yes there are doctors out there who do do the surgery via laproscope, although this is the exception rather than the norm right now. There are even doctors that can do a sort of modified abdominal from inside the vagina, by cutting up through the vaginal walls. The norm though is to have a ceaser like cut to have the abdominal placed. Where are you situated? There might be a doc that does it laproscopically in your area. HTH Shona nikkit32712 wrote: I'm new to this group and I want to know do you need an IUI to get pregnant with an abdominal cerclage and what is the limit on the nubmer of c-section that you have and is it done with a laproscopy like surgery? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 HI No you don't need an IUI to get pg with an abdominal. Those that have it done pre-pg generally do not have any issues with fertility because they usually leave a hole around the same size as it would be during normal ovulation. Some have had problems conceiving but that might be due to other factors or they have had IF problems in the past. I don't know about limits on c-sections you can have, although I don't think doctors like to perform more than around 4 (but don't quote me on this as I'm not sure). As far as laproscope, yes there are doctors out there who do do the surgery via laproscope, although this is the exception rather than the norm right now. There are even doctors that can do a sort of modified abdominal from inside the vagina, by cutting up through the vaginal walls. The norm though is to have a ceaser like cut to have the abdominal placed. Where are you situated? There might be a doc that does it laproscopically in your area. HTH Shona nikkit32712 wrote: I'm new to this group and I want to know do you need an IUI to get pregnant with an abdominal cerclage and what is the limit on the nubmer of c-section that you have and is it done with a laproscopy like surgery? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 That sounds a lot like my 29 month old. However, Asher sounds like his doing a little better than my . He still can't hold up his head. He has started crawling on his back in the last couple of months. did have a heart murmur at birth and then it went away, and then it came back, and then it went away. . . . 's murmur was small it just took it awhile to heal all the way. also hasn't gained any weight all summer. So I started giving him just 1 1/2 ounces more of Pediasure a day -- and low and behold, he gained a pound this month. Welcome to the group and I wish your family the best, Sue Ann New Hi,I tried to send a post a while ago and I think I did it wrong b/c it never came up on my screen. So, if you did get the post and this is a repeat, I apologize. I'm writing b/c my 33 month old son has been dxed with a congenital myopathy, possibly mitochondrial. He has had stomach problems ("fragile" stomach - bleeds easily), feeding problems related to hypotonia as well as reflux, since birth. Asher has had p.t. therapy from the age of 1 to now and it has helped him tremendously, but he still tires more easily than other kids, doesn't have the strength of other children his age nor the coordination and balance. Ash has also had sensory integration problems and speech problems but that has all resolved with o.t. and s.t.Our current concerns: 1. continued muscle weakness 2. hyperflexibility of joints 3. started toe-walking 4. seems to tire easily 5. constipation 6. lack of any weight gain since 24 months of age (infact, he even lost 2 lbs) 7. absent reflexes in lower extremities. And, I think that's it. Oh yeah, drs have recently begun to hear a heart murmur and now we need to see a cardiologist (crossing my fingers and toes that this is only an "innocent" murmur - I get scared that the myopathy might be affecting the cardiac muscle). All our paperwork is with Shoffner being reviewed to see if he will evaluate and do a muscle biopsy.Do any of the above sound like your kids? The weight loss or failure to thrive stuff is the part that's most scary right now. Ash is also quite bright (put the United States puzzles together by himself a few days ago!), and cute, cuddly, and very loveable (although he is in his 2's, so he knows how to throw a good tantrum!).Please let me know what thoughts you have about Ash - do these things sound familiar?Anne R Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 That sounds a lot like my 29 month old. However, Asher sounds like his doing a little better than my . He still can't hold up his head. He has started crawling on his back in the last couple of months. did have a heart murmur at birth and then it went away, and then it came back, and then it went away. . . . 's murmur was small it just took it awhile to heal all the way. also hasn't gained any weight all summer. So I started giving him just 1 1/2 ounces more of Pediasure a day -- and low and behold, he gained a pound this month. Welcome to the group and I wish your family the best, Sue Ann New Hi,I tried to send a post a while ago and I think I did it wrong b/c it never came up on my screen. So, if you did get the post and this is a repeat, I apologize. I'm writing b/c my 33 month old son has been dxed with a congenital myopathy, possibly mitochondrial. He has had stomach problems ("fragile" stomach - bleeds easily), feeding problems related to hypotonia as well as reflux, since birth. Asher has had p.t. therapy from the age of 1 to now and it has helped him tremendously, but he still tires more easily than other kids, doesn't have the strength of other children his age nor the coordination and balance. Ash has also had sensory integration problems and speech problems but that has all resolved with o.t. and s.t.Our current concerns: 1. continued muscle weakness 2. hyperflexibility of joints 3. started toe-walking 4. seems to tire easily 5. constipation 6. lack of any weight gain since 24 months of age (infact, he even lost 2 lbs) 7. absent reflexes in lower extremities. And, I think that's it. Oh yeah, drs have recently begun to hear a heart murmur and now we need to see a cardiologist (crossing my fingers and toes that this is only an "innocent" murmur - I get scared that the myopathy might be affecting the cardiac muscle). All our paperwork is with Shoffner being reviewed to see if he will evaluate and do a muscle biopsy.Do any of the above sound like your kids? The weight loss or failure to thrive stuff is the part that's most scary right now. Ash is also quite bright (put the United States puzzles together by himself a few days ago!), and cute, cuddly, and very loveable (although he is in his 2's, so he knows how to throw a good tantrum!).Please let me know what thoughts you have about Ash - do these things sound familiar?Anne R Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 I had gotten pregnant 2x the same month I quit the BC pills and both ended in a miscarraige early. I have heard that it may have been caused fromthe hormones not being regular yet nad that we should wait a cycle or 2 to TTC. After my last MC I never went back on anything and am now curently 9 1/2 weeks pregnant and all is well. The baby had a heartbeat at my last doc appointment. Not everyone has a MC coming off the BC pills like I did and I am not even positive that is why I had them but it was something to think about. Good Luck and I hope you concieve soon and have a healthy happy baby HUGS, ROBIN, NY Age- 41 Due Date- July 27th, 2004 OPEN RNY 10-18-02 378/246/170??? DR.EDWARD HIXSON SARANAC LAKE, NY Mom to: & 7 1/2 year twin boys and Madison age 4 1/2 yrs. Miscarraige August 2001 Miscarraige August 2003 Married to Pup: 15 years this Halloween : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Welcome to the group. Always nice to add more people! I " m Trish, mom to three kiddos. You can see in my sign. line the allergies there. I too, have some allergy- although it is brand new- as of Fri after experienceing an anaphlyctic reaction! YIKES-scary! Anway, I think you'll really enjoy things here. Jump in and ask questions or share your opiniion! Trish (CO) Kayla (5)- No allergies (4)- E/A (2)- anaphlyatic to egg, severely allergic milk, peanuts, all tree nuts, soy, other foods E/A including dogs & cats. Asthma & eczema New > Hello. My name is Marshall. I am a mother of three beautiful > children, 2 have food allergies. I myself have food allergies as > well. It's great to know that other parents have come together to > help each other out with this difficult life style. I am looking > forward to hearing all of your great ideas. My 2 children with f/a > have just been recently diagnosed. At 9 months old I was diagnosed > after going into a/shock from eating coconut. Now my f/a mostly > affect my asthma. My son also has severe seasonal allergies and > asthma. My youngest daughter also has asthma. I myself have severe > seasonal allergies and asthma as well. I have been blessed that my > oldest daughter only has mild seasonal allergies and no food > allergies. Thanks so much for allowing us to join your group. God > Bless. Marshall > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Welcome to the group. Always nice to add more people! I " m Trish, mom to three kiddos. You can see in my sign. line the allergies there. I too, have some allergy- although it is brand new- as of Fri after experienceing an anaphlyctic reaction! YIKES-scary! Anway, I think you'll really enjoy things here. Jump in and ask questions or share your opiniion! Trish (CO) Kayla (5)- No allergies (4)- E/A (2)- anaphlyatic to egg, severely allergic milk, peanuts, all tree nuts, soy, other foods E/A including dogs & cats. Asthma & eczema New > Hello. My name is Marshall. I am a mother of three beautiful > children, 2 have food allergies. I myself have food allergies as > well. It's great to know that other parents have come together to > help each other out with this difficult life style. I am looking > forward to hearing all of your great ideas. My 2 children with f/a > have just been recently diagnosed. At 9 months old I was diagnosed > after going into a/shock from eating coconut. Now my f/a mostly > affect my asthma. My son also has severe seasonal allergies and > asthma. My youngest daughter also has asthma. I myself have severe > seasonal allergies and asthma as well. I have been blessed that my > oldest daughter only has mild seasonal allergies and no food > allergies. Thanks so much for allowing us to join your group. God > Bless. Marshall > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Welcome to the group. Always nice to add more people! I " m Trish, mom to three kiddos. You can see in my sign. line the allergies there. I too, have some allergy- although it is brand new- as of Fri after experienceing an anaphlyctic reaction! YIKES-scary! Anway, I think you'll really enjoy things here. Jump in and ask questions or share your opiniion! Trish (CO) Kayla (5)- No allergies (4)- E/A (2)- anaphlyatic to egg, severely allergic milk, peanuts, all tree nuts, soy, other foods E/A including dogs & cats. Asthma & eczema New > Hello. My name is Marshall. I am a mother of three beautiful > children, 2 have food allergies. I myself have food allergies as > well. It's great to know that other parents have come together to > help each other out with this difficult life style. I am looking > forward to hearing all of your great ideas. My 2 children with f/a > have just been recently diagnosed. At 9 months old I was diagnosed > after going into a/shock from eating coconut. Now my f/a mostly > affect my asthma. My son also has severe seasonal allergies and > asthma. My youngest daughter also has asthma. I myself have severe > seasonal allergies and asthma as well. I have been blessed that my > oldest daughter only has mild seasonal allergies and no food > allergies. Thanks so much for allowing us to join your group. God > Bless. Marshall > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi , Welcome! It's a great group, with lots of sharing and information. DonnaShane - asthma - allergic to dairy, eggs, pickles, and olives. Minnesota New Hello. My name is Marshall. I am a mother of three beautiful children, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi , Welcome! It's a great group, with lots of sharing and information. DonnaShane - asthma - allergic to dairy, eggs, pickles, and olives. Minnesota New Hello. My name is Marshall. I am a mother of three beautiful children, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 hello thank you for the invite to the group I am a type 2 the only thing I'm taking right now is avandament 2/500 2 times a day. can anyone let me know if they are on it & how it's working Quote Link to comment Share on other sites More sharing options...
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