Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi Tim, Thanks for the update. We are all very interested in your work (and of course your family). It sounds like you are all " charged " up these days! Best regards, Anne, mom of Penina (CHArgE, who will be 6 in August and who just had her 2 bottom front baby teeth pulled yesterday - she was so good and cooperative, and she laughed delightedly at the weird sensation of the local anesthesia - the entire dental office was charmed!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi Tim, Thanks for the update. We are all very interested in your work (and of course your family). It sounds like you are all " charged " up these days! Best regards, Anne, mom of Penina (CHArgE, who will be 6 in August and who just had her 2 bottom front baby teeth pulled yesterday - she was so good and cooperative, and she laughed delightedly at the weird sensation of the local anesthesia - the entire dental office was charmed!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Ouch!! Kay -- You will be in my thoughts! I hope you find the answers and get this resolved soon. My friend's mom is diabetic and has something else too but I can't remember what. She has symptoms like you are describing. Michele W Aubrie's mom Update > Hello, > > For those of you new to the list who do not know me, I am a 48-year-old > charger. > > I am having some new health problems. I never had trouble with my heart and > we are not sure if this is my heart or diabetes or what. My feet, ankles, > and legs up to just below my knees are red, itchy, swollen, and have pain. > The doctor put me on a heavy dosage of diuretics, I have to keep my feet > propped up, and he did blood work. We don't know what it is yet. I don't > know if this is a charge issue or just something new. > > Kay > > If you need prayer Join my email list: > prayingforyou-subscribe@... > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Kay, I hope the diruetics work, it sounds very uncomfortable - are they sending you for tests to try and figure out what it is? Take care, ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Update Hello, For those of you new to the list who do not know me, I am a 48-year-old charger. I am having some new health problems. I never had trouble with my heart and we are not sure if this is my heart or diabetes or what. My feet, ankles, and legs up to just below my knees are red, itchy, swollen, and have pain. The doctor put me on a heavy dosage of diuretics, I have to keep my feet propped up, and he did blood work. We don't know what it is yet. I don't know if this is a charge issue or just something new. Kay If you need prayer Join my email list: prayingforyou-subscribe@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Kay, I hope the diruetics work, it sounds very uncomfortable - are they sending you for tests to try and figure out what it is? Take care, ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Update Hello, For those of you new to the list who do not know me, I am a 48-year-old charger. I am having some new health problems. I never had trouble with my heart and we are not sure if this is my heart or diabetes or what. My feet, ankles, and legs up to just below my knees are red, itchy, swollen, and have pain. The doctor put me on a heavy dosage of diuretics, I have to keep my feet propped up, and he did blood work. We don't know what it is yet. I don't know if this is a charge issue or just something new. Kay If you need prayer Join my email list: prayingforyou-subscribe@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Hi , They did blood work and we are waiting for the results. Kay Update > > > Hello, > > For those of you new to the list who do not know me, I am a 48-year-old > charger. > > I am having some new health problems. I never had trouble with my heart and > we are not sure if this is my heart or diabetes or what. My feet, ankles, > and legs up to just below my knees are red, itchy, swollen, and have pain. > The doctor put me on a heavy dosage of diuretics, I have to keep my feet > propped up, and he did blood work. We don't know what it is yet. I don't > know if this is a charge issue or just something new. > > Kay > > If you need prayer Join my email list: > prayingforyou-subscribe@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Yes its uncomfortable and hoping to be better soon. I had to wear shoes to go to church and they were tight. Kay Update > > > > Hello, > > > > For those of you new to the list who do not know me, I am a 48-year-old > > charger. > > > > I am having some new health problems. I never had trouble with my heart > and > > we are not sure if this is my heart or diabetes or what. My feet, ankles, > > and legs up to just below my knees are red, itchy, swollen, and have pain. > > The doctor put me on a heavy dosage of diuretics, I have to keep my feet > > propped up, and he did blood work. We don't know what it is yet. I don't > > know if this is a charge issue or just something new. > > > > Kay > > > > If you need prayer Join my email list: > > prayingforyou-subscribe@... > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Oh, Kay: my good thoughts are with you. We,too, keep coming up with new issues. It is not fun. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Oh, Kay: my good thoughts are with you. We,too, keep coming up with new issues. It is not fun. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Thanks to all of you. I am going out of town and flying to Savannah Ga and back this week end coming up. I probably should have said no but I was offered a scholarship to go so I am going. I fly down on Friday and back on Saturday night. It is a short flight but will be a lot of sitting around the airport. I sure hope my legs will cooperate throughout this. Kay Re: Update > Oh, Kay: my good thoughts are with you. We,too, keep coming up with new > issues. It is not fun. Martha > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Thanks to all of you. I am going out of town and flying to Savannah Ga and back this week end coming up. I probably should have said no but I was offered a scholarship to go so I am going. I fly down on Friday and back on Saturday night. It is a short flight but will be a lot of sitting around the airport. I sure hope my legs will cooperate throughout this. Kay Re: Update > Oh, Kay: my good thoughts are with you. We,too, keep coming up with new > issues. It is not fun. Martha > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Pushpa, So sorry that things are still in a difficult stage for your family. I can't imagine being in the hospital as much as your children have had to be with little Aman. I wish them & you much strength.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Update Its been a long time since I posted an update on Aman, its been a roller coaster ride since we arrived in Toronto in July and went straight to the hospital since Aman was admitted that day. He was a year old on 21st October. he has been in the hospital from birth till 17th of May, underwent laser surgeries, several intubations and a seizure, then since 7th July he has been in hospital 3 times, this time he went in on 28th September and was in ICU for a very long time. Right now though he is in the wards on the 7th floor of Sick kids, he is on bi-pap in the nights and sometimes even during the day, to add to it he has developed an infection in the kidney. On his birthday he was very sick with high fever and we had a difficult day. Pushpa grandma to Aman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi Pushpa, Thanks for the update. Happy birthday to little Aman. How fortunate that you are able to give your son and daughter in law some respite. Can you imagine how much more difficult this ordeal would have been for everyone without your strength? I hope Aman will be able to come home soon (and that the kidney infection heals quickly). Then life can normalize. In the meantime we send our very best wishes to all. BTW, I realize that you have traveled quite a bit and that you are not unaccustomed to different climates. I just wanted to send a gentle reminder in case you have not experienced a Canadian Winter (at least Southern Ontario is about 5 degrees Celsius warmer than Montreal, but Toronto gets very damp and windy)! I strongly recommend a heavy investment in winter gear. Really! Regards, Anne, mom of Penina (CHARGE, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 It is so nice to hear from you again Pushpa, I am sorry Aman has to be back in hospital. I hadn't seen posts from you in a while so I was hoping all was well at home. I think of Aman often since he and Ethan are so close in age and both in Canada. Are the doctors talking about a tracheostomy at all for Aman? I can't even believe that I am saying this now because of how opposed to it I was when Ethan was in hospital and could not be extubated. But I see now how much it has improved his quality of life. Ethan came out of the hospital on July 4, and has not been back except for choanal atresia surgery in Sept. He is growing and developing and well, healthy! The trach is a LOT of work, I won't downplay that, between night nurses, constant supervision, and difficulty getting around with the extra equipment. But it sure beats being in the hospital. And it beats watching your child stagnate at development wondering if he'll ever move on. Ethan had big reflux problems too which made it hard for him to develop, so the fundoplication played a big part in his progress too. But with the trach we know he can always breathe, and we have a sat monitor to let us know if he needs oxygen. Sorry to ramble on, maybe it's not a consideration in Aman's case, but we are here if you or Amrit or Mehta need to talk about anything. , mom to Ethan 1 year Regina, Saskatchewan, Canada > Its been a long time since I posted an update on Aman, its been a roller coaster ride since we arrived in Toronto in July and went straight to the hospital since Aman was admitted that day. He was a year old on 21st October. he has been in the hospital from birth till 17th of May, underwent laser surgeries, several intubations and a seizure, then since 7th July he has been in hospital 3 times, this time he went in on 28th September and was in ICU for a very long time. Right now though he is in the wards on the 7th floor of Sick kids, he is on bi-pap in the nights and sometimes even during the day, to add to it he has developed an infection in the kidney. On his birthday he was very sick with high fever and we had a difficult day. Pushpa grandma to Aman > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , the hospital atmosphere is indeed very stressful, and one year is a long time, we can only pray for strength to face the situation, Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , the hospital atmosphere is indeed very stressful, and one year is a long time, we can only pray for strength to face the situation, Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Anne, we are fortunate to be here with the children rather than worry long distance, but we will have to leave shortly as we are unable to get revised bookings and an extension for our medical insurance. Thank you so much for your care and concern regarding the climate, it is a big change for us after the perpetual hot weather we are used to. Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Anne, we are fortunate to be here with the children rather than worry long distance, but we will have to leave shortly as we are unable to get revised bookings and an extension for our medical insurance. Thank you so much for your care and concern regarding the climate, it is a big change for us after the perpetual hot weather we are used to. Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , its nice to hear from you too. Aman is fine with prongs during the day and bi-pap at nights, and he has been gaining regular weight and is in the normal range. Thanks for offering to speak to the children, will let them know. Its good to know that Ethan is doing well and you have taken the right decisions for him. Also noted about his motor developments and the sudden support from everyone in meeting with the medical and travel costs, we are so happy for Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , its nice to hear from you too. Aman is fine with prongs during the day and bi-pap at nights, and he has been gaining regular weight and is in the normal range. Thanks for offering to speak to the children, will let them know. Its good to know that Ethan is doing well and you have taken the right decisions for him. Also noted about his motor developments and the sudden support from everyone in meeting with the medical and travel costs, we are so happy for Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , its nice to hear from you too. Aman is fine with prongs during the day and bi-pap at nights, and he has been gaining regular weight and is in the normal range. Thanks for offering to speak to the children, will let them know. Its good to know that Ethan is doing well and you have taken the right decisions for him. Also noted about his motor developments and the sudden support from everyone in meeting with the medical and travel costs, we are so happy for Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma to Aman 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Hi Pushpa, How is Aman doing - it has been a long haul with hospital stays! has had a kidney infection before and she got very ill with it so I hear your concern here. I'm writing hoping that Aman has safely come home and is feeling better. I would love to hear how he is feeling now. Please give my love and thoughts to Amrit and Poonham. Pat Pat, , (15), (11-CHARGE) Rittgasser Keswick, Ontario Canada Update Its been a long time since I posted an update on Aman, its been a roller coaster ride since we arrived in Toronto in July and went straight to the hospital since Aman was admitted that day. He was a year old on 21st October. he has been in the hospital from birth till 17th of May, underwent laser surgeries, several intubations and a seizure, then since 7th July he has been in hospital 3 times, this time he went in on 28th September and was in ICU for a very long time. Right now though he is in the wards on the 7th floor of Sick kids, he is on bi-pap in the nights and sometimes even during the day, to add to it he has developed an infection in the kidney. On his birthday he was very sick with high fever and we had a difficult day. Pushpa grandma to Aman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Thanks Pat for your concern, Aman came home on thursday 31st october after being more than a month in hospital, with the Bi-Pap at night and prongs in the day for oxygen he is comfortable. We are leaving this week for India, and should be back next year. Pushpa grandma to Aman 1 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 why would you be tested every week? Did the DR do that? Update I posted last month as a new member. I have since found additial info that I would like input on. I have enjoyed reading the posts and they have really helped.6/21 TSH 9.06 (Range 0.32-5.00)Prolactin 36.8 (Range 3.4-24.1)Free T4 .9 (Range 0.7-1.9)6/24 TSH 4.66 (Range 0.32-5.00)Free T4 .88 (Range 0.7-1.9)7/8 TSH (3rd Generation) 6.954 (Range 0.35-5.50)Tree Thyroixing Index (T7) 7.2 (Range 6.0-11.4)Total T4 7.4 (Range 6.5-10.5)T3 Uptake 30.98 (Range 24.4-39.1)Triiodothyronine Free (Free T3) 4.3 (Range 2.3-4.2)NEW INFORMATION:I was going thru my files, and found that back in 1995, my GP at the time sent me in for thyroid labs due to enlarged thyroid from the cliical exam. I don't have the results for that.In 2001, I had lab work done due to an enlarged thyroid. TSH was 4. something and T4 was 1.somthing. Ultrasound was normal. I was very sick at this time. I lost 10 pounds over a months time (I am thin to begin with), lost appetite. Face/hand tingling, muscle twitching. Scared me to death! I recovered slowly on my own. I feel like the same thing is happening to me now, I'm just not as scared.So here I am, nine years later on Levoxyl .025. I have been taking it for about three weeks. This week I noticed tingling in my hands/face, increased hunger. My indigestion that I had the first week has mostly gone away. I understand about adrenal support.My question: Could my new symptoms mean that I am going hyper? Could the meds be causing my tingling? I had this tingling in 2001 when they sent me for labs/ultrasound on my thyroid and everything was normal. I also had a CT and MRI. All ok. Could my symptoms back then have been hyper?I will be getting the antibody tests done on 8/19 when I go see my new GP.Thank you all for reading this and giving me your advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 why would you be tested every week? Did the DR do that? Update I posted last month as a new member. I have since found additial info that I would like input on. I have enjoyed reading the posts and they have really helped.6/21 TSH 9.06 (Range 0.32-5.00)Prolactin 36.8 (Range 3.4-24.1)Free T4 .9 (Range 0.7-1.9)6/24 TSH 4.66 (Range 0.32-5.00)Free T4 .88 (Range 0.7-1.9)7/8 TSH (3rd Generation) 6.954 (Range 0.35-5.50)Tree Thyroixing Index (T7) 7.2 (Range 6.0-11.4)Total T4 7.4 (Range 6.5-10.5)T3 Uptake 30.98 (Range 24.4-39.1)Triiodothyronine Free (Free T3) 4.3 (Range 2.3-4.2)NEW INFORMATION:I was going thru my files, and found that back in 1995, my GP at the time sent me in for thyroid labs due to enlarged thyroid from the cliical exam. I don't have the results for that.In 2001, I had lab work done due to an enlarged thyroid. TSH was 4. something and T4 was 1.somthing. Ultrasound was normal. I was very sick at this time. I lost 10 pounds over a months time (I am thin to begin with), lost appetite. Face/hand tingling, muscle twitching. Scared me to death! I recovered slowly on my own. I feel like the same thing is happening to me now, I'm just not as scared.So here I am, nine years later on Levoxyl .025. I have been taking it for about three weeks. This week I noticed tingling in my hands/face, increased hunger. My indigestion that I had the first week has mostly gone away. I understand about adrenal support.My question: Could my new symptoms mean that I am going hyper? Could the meds be causing my tingling? I had this tingling in 2001 when they sent me for labs/ultrasound on my thyroid and everything was normal. I also had a CT and MRI. All ok. Could my symptoms back then have been hyper?I will be getting the antibody tests done on 8/19 when I go see my new GP.Thank you all for reading this and giving me your advice. Quote Link to comment Share on other sites More sharing options...
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