Guest guest Posted August 24, 2006 Report Posted August 24, 2006 Does anyone know if there is any connection at all with smoking during pregnancy and Charge? I have tried to get information on this but I am not finding much. Just curious... Thank you, LIZ Quote
Guest guest Posted August 24, 2006 Report Posted August 24, 2006 There is no connection cause think about it this way, how come moms who did not smoke had CHARGE kids. Chantelle (CHARGE) > > Does anyone know if there is any connection at all with smoking during > pregnancy and Charge? I have tried to get information on this but I am > not finding much. > Just curious... > > Thank you, LIZ > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote
Guest guest Posted August 24, 2006 Report Posted August 24, 2006 Liz, I have read pretty much all the literature out there on CHARGE; smoking has nothing to do with it. There are many many many of us who have kids with CHARGE who do not smoke. The conference notes from last year's conference in Miami where Conni van Ravenswaaj (sp?) spoke about the genetics; she was from the lab where they made the genetic discovery about CHARGE. I remember an explaination about the sperm being like a photocopier, making many many copies, every so often there's a " blip " on the paper, try and think of it that way with the sperm as the are produced in mass quantities... Hope this helps, PS - Meg (genetic counsellor with the CHARGE Syndrome Foundation, may jump in here if she notices and can probably explain it better than me) > > Does anyone know if there is any connection at all with smoking during > pregnancy and Charge? I have tried to get information on this but I am > not finding much. > Just curious... > > Thank you, LIZ > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote
Guest guest Posted August 24, 2006 Report Posted August 24, 2006 Thankyou for writing, yes, I think about that. I also wondered because they say smoking causes fetal injury and possible birth defects. But you are probably right, since I have not been able to find information connecting this. Liz -- Re: Charge There is no connection cause think about it this way, how come moms who did not smoke had CHARGE kids. Chantelle (CHARGE) > > Does anyone know if there is any connection at all with smoking during > pregnancy and Charge? I have tried to get information on this but I am > not finding much. > Just curious... > > Thank you, LIZ > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote
Guest guest Posted August 25, 2006 Report Posted August 25, 2006 Thank you , yes, this does help. I guess you just start thinking, " Why? and hope that it isnt anything that you did that could have caused this. We have not had a consultation with genetics specialist yet, but they did get some blood test on my son and daughter in law, and one thing that found was that my son had " and extra chromosome 20 on his 1, BUT they said they didnt know at all what that meant, only that it could be a problem. ??? I am still confused about the genetics on this condition. But what you said really makes sense. Liz -- Re: Charge Liz, I have read pretty much all the literature out there on CHARGE; smoking has nothing to do with it. There are many many many of us who have kids with CHARGE who do not smoke. The conference notes from last year's conference in Miami where Conni van Ravenswaaj (sp?) spoke about the genetics; she was from the lab where they made the genetic discovery about CHARGE. I remember an explaination about the sperm being like a photocopier, making many many copies, every so often there's a " blip " on the paper, try and think of it that way with the sperm as the are produced in mass quantities... Hope this helps, PS - Meg (genetic counsellor with the CHARGE Syndrome Foundation, may jump in here if she notices and can probably explain it better than me) > > Does anyone know if there is any connection at all with smoking during > pregnancy and Charge? I have tried to get information on this but I am > not finding much. > Just curious... > > Thank you, LIZ > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote
Guest guest Posted August 25, 2006 Report Posted August 25, 2006 Liz- Yep - I've been to lots of the conferences with and read tons of stuff and done CHARGE trainings with Meg Hefner (CHARGE Specialist Extraordinaire) and there is no known cause for CHARGE. It's just a random mutation that happens sometimes. There is no rhyme or reason to it - no relationship between all of us and our situations. I know they did find some relationship to paternal age- - but it wasn't real significant. There are lots of younger dads with kids with CHARGE. I remember that part though because I was relieved to think it may have been sperm mutation instead of a mutation of one of my eggs (silly me- looking for any way to throw away the guilt). On your son's chromosomal difference - I also had a mutation on my #10, I think. It's not anything that has impact. We all probably have lots of little blips here and there that just give us our individuality but don't cause things with the impact of CHARGE. You can rest assured that you didn't cause CHARGE - nothing you did caused it. Let go of that guilt and wonder and worry. I read the book, " Why Bad Things Happen to Good People " . It's best for me to think that difficulties are a part of life. CHARGE has to happen to someone - statistically it'll be 1 in 10,000 or so, right? So what makes me think I and my family should be immune to that? Instead of saying " why me " , I say " why not me? " and realize that I'm just as vulnerable as everyone else. This is one of those things out of our control. So we just move on and manage it. How we manage it is within our control. Oooohh - sorry for the soapbox! You asked a very simple, innocent question and off I go. But I hope you find reassurance that smoking or anything else you may have done or not done (or your spouse did or didn't do) is not related to CHARGE. Michele W Aubrie's mom 8 yrs CHaRgE and 14 yrs, wife to DJH Quote
Guest guest Posted August 25, 2006 Report Posted August 25, 2006 Hello ina, I was wondering if at any time you heard of polymicrogyria associated with Vinny's MRI* LIz -- Re: Charge Hi, Liz. My 14 month old son, Vinny, has CHARGE. He has had what they call an " abnormal MRI " and they specified prominent ventricles. The ventricles are the fluid-filled spaces that surround the spinal cord in the very middle of the brain. It is nearly impossible to predict what that will mean for him in the future, but I can tell you about him now. At 14 months, he is sitting, reaching, playing, flirting, giving great big hugs, laughing, showing great eye contact, making all kinds of fun noises (trying to talk, but no speech yet), standing with assistance, and learning to use sign language. He is an absolute joy. He spent his first 3-4 months in the NICU. He was born June 4th of last year and came home for good on September 27th. It was a VERY difficult year, filled with surgeries and so much bad news that we never thought he'd make it home. My pregnancy with Vinny was totally uneventful. He was a full-term, 8 pound baby and we knew nothing until the moment he was born. In my profession, I teach about genetic disorders that children are sometimes born with and I had NEVER heard of CHARGE Syndrome until he was born and they suspected that is what he had. Vinny wears hearing aids to address his moderate to severe hearing loss, has had his various heart defects fixed, has had his bilateral choanal atresia fixed (numerous times), has had the Nissin fundoplication, and currently eats via a feeding tube in his tummy, and has a right facial palsy in addition to a partial left facial palsy. I know it may sound awful to you now, but he really is thriving and doing well. I am sure this and will be a VERY difficult time. Be optimistic because these children are usually stronger than anyone can imagine. Please feel free to ask any questions, as there are so many knowlegdeable parents and professionals on this listserv... I wish I knew about it last year. Thinking of you and your family, ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) --- liz_dolz wrote: > My grandon was born one month ago and was diagnosed > with Charge. I had > never heard of this before. They did an MRI which is > abnormal for > possible atrophy and shows prominent perivascular > spaces. However they > dont say what this really means for the future. Does > anyone have any > information to help us understands what this really > means, if you have > a child with similar finding, and how he or she is > doing. > Thank you > > Liz Stromsnes > > > > > __________________________________________________ Quote
Guest guest Posted August 28, 2006 Report Posted August 28, 2006 Hi there, Liz. Nope. That is not a term I have been introduced to at this point. What is it? (Poly=many; micro=small; then you got me!) ina --- Stromsnes Dolz wrote: > Hello ina, > I was wondering if at any time you heard of > polymicrogyria associated with > Vinny's MRI* > > LIz > > -- Re: Charge > > Hi, Liz. > > My 14 month old son, Vinny, has CHARGE. He has had > what they call an " abnormal MRI " and they specified > prominent ventricles. The ventricles are the > fluid-filled spaces that surround the spinal cord in > the very middle of the brain. It is nearly > impossible > to predict what that will mean for him in the > future, > but I can tell you about him now. At 14 months, he > is > sitting, reaching, playing, flirting, giving great > big > hugs, laughing, showing great eye contact, making > all > kinds of fun noises (trying to talk, but no speech > yet), standing with assistance, and learning to use > sign language. He is an absolute joy. > > He spent his first 3-4 months in the NICU. He was > born June 4th of last year and came home for good on > September 27th. It was a VERY difficult year, > filled > with surgeries and so much bad news that we never > thought he'd make it home. My pregnancy with Vinny > was totally uneventful. He was a full-term, 8 pound > baby and we knew nothing until the moment he was > born. > In my profession, I teach about genetic disorders > that children are sometimes born with and I had > NEVER > heard of CHARGE Syndrome until he was born and they > suspected that is what he had. > > Vinny wears hearing aids to address his moderate to > severe hearing loss, has had his various heart > defects > fixed, has had his bilateral choanal atresia fixed > (numerous times), has had the Nissin fundoplication, > and currently eats via a feeding tube in his tummy, > and has a right facial palsy in addition to a > partial > left facial palsy. I know it may sound awful to you > now, but he really is thriving and doing well. > > I am sure this and will be a VERY difficult time. > Be > optimistic because these children are usually > stronger > than anyone can imagine. Please feel free to ask > any > questions, as there are so many knowlegdeable > parents > and professionals on this listserv... I wish I knew > about it last year. > > Thinking of you and your family, > ina, mom to Luca (3) & Vinny (14 months w/ > cHARgE) > > --- liz_dolz wrote: > > > My grandon was born one month ago and was > diagnosed > > with Charge. I had > > never heard of this before. They did an MRI which > is > > abnormal for > > possible atrophy and shows prominent perivascular > > spaces. However they > > dont say what this really means for the future. > Does > > anyone have any > > information to help us understands what this > really > > means, if you have > > a child with similar finding, and how he or she is > > doing. > > Thank you > > > > Liz Stromsnes > > > > > > > > > > > > > __________________________________________________ > Quote
Guest guest Posted August 28, 2006 Report Posted August 28, 2006 What is Polymicrogyria? The name Polymicrogyria broken down describes its characteristics... Poly - many, micro - small, gyri - folds on the surface of the brain. The brains surface normally has gyri which give it a wiggly appearance, but in PMG there are many small wiggles that can be difficult to see on an MRI or CT scan, even for an experienced radiologist. The diagnosis of PMG is merely descriptive and is not a disease in itself nor does it describe the underlying aetiology or cause of the brain malformation. There are frequent associations with other brain malformations, including abnormalities of the corpus callosum, white matter and cerebellum. PMG is not lissencephaly, but is often included because of the similarity in brain scan appearance on poorer quality scans and because many of the symptoms are similar. Most children with polymicrogyria, but not all, have some degree of global developmental disabilities or delays, seizures, feeding difficulties, respiratory problems, motor dysfunction and mental retardation. It is difficult to make a predictable prognosis for children with the diagnosis of PMG because each child is very unique in their presentation of this disorder PMG results from several different causes that are both genetic and non-genetic in nature as follows: a genetic disorder (sometimes inherited, but mainly sporadic); viral infections of the baby during the 2nd trimester (i.e. cytomegalovirus infection); insufficient blood supply to the baby's brain during the 2nd trimester (i.e. umbilical cord entanglement) including twin-to-twin transfusion syndrome; other causes which have not yet been identified. Research is ongoing into PMG, both in identifying the different types and in the understanding of the underlying causes. -- Re: Charge > > Hi, Liz. > > My 14 month old son, Vinny, has CHARGE. He has had > what they call an " abnormal MRI " and they specified > prominent ventricles. The ventricles are the > fluid-filled spaces that surround the spinal cord in > the very middle of the brain. It is nearly > impossible > to predict what that will mean for him in the > future, > but I can tell you about him now. At 14 months, he > is > sitting, reaching, playing, flirting, giving great > big > hugs, laughing, showing great eye contact, making > all > kinds of fun noises (trying to talk, but no speech > yet), standing with assistance, and learning to use > sign language. He is an absolute joy. > > He spent his first 3-4 months in the NICU. He was > born June 4th of last year and came home for good on > September 27th. It was a VERY difficult year, > filled > with surgeries and so much bad news that we never > thought he'd make it home. My pregnancy with Vinny > was totally uneventful. He was a full-term, 8 pound > baby and we knew nothing until the moment he was > born. > In my profession, I teach about genetic disorders > that children are sometimes born with and I had > NEVER > heard of CHARGE Syndrome until he was born and they > suspected that is what he had. > > Vinny wears hearing aids to address his moderate to > severe hearing loss, has had his various heart > defects > fixed, has had his bilateral choanal atresia fixed > (numerous times), has had the Nissin fundoplication, > and currently eats via a feeding tube in his tummy, > and has a right facial palsy in addition to a > partial > left facial palsy. I know it may sound awful to you > now, but he really is thriving and doing well. > > I am sure this and will be a VERY difficult time. > Be > optimistic because these children are usually > stronger > than anyone can imagine. Please feel free to ask > any > questions, as there are so many knowlegdeable > parents > and professionals on this listserv... I wish I knew > about it last year. > > Thinking of you and your family, > ina, mom to Luca (3) & Vinny (14 months w/ > cHARgE) > > --- liz_dolz wrote: > > > My grandon was born one month ago and was > diagnosed > > with Charge. I had > > never heard of this before. They did an MRI which > is > > abnormal for > > possible atrophy and shows prominent perivascular > > spaces. However they > > dont say what this really means for the future. > Does > > anyone have any > > information to help us understands what this > really > > means, if you have > > a child with similar finding, and how he or she is > > doing. > > Thank you > > > > Liz Stromsnes > > > > > > > > > > > > > __________________________________________________ > Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from your vocabulary lol please! I dont think anyone of the chargers have mental retardation actualy. Some may be developmenaly delayed due to vision and hearing, but they are still very BRIGHT kids Chantelle (27 year old CHARGEr IN college no less) -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Hi, Liz. Good news here... in the recent research, it is no longer true to say that MOST kids with CHARGE will develop mental retardation. There seems to be a higher chance at developing seizures, but there are many kids with CHARGE who never develop seizures. I have not read about a large correlation between CP and CHARGE. The thing is, there is SO MUCH VARIATION in how CHARGE presents itself. TO me, it is " easiest " to deal with Vinny's diagnosis by reminding myself that the one thing for sure all kids with CHARGE have in common is variation in symptoms. There is where I found my hope... he may not develop seizures, he may not have mental retardation, he MAY learn how to walk and talk and eat... The hardest part is waiting to see what the future holds for him. Only HE will be able to show us what he is capable of and it will happen on his own timeline. Frustrating and anxiety-producing? Absolutely. However, I can fear the worst or I can hope for the best. I choose- for Vinny's sake- hope for the best. He will write his own story of CHARGE and he will tell us his story as time moves on. We just have to sit patiently and wait, doing all we can for him in the meantime. It surely is a testament to one's patience, but if that is what he needs from us then that is what we give him. Hang in there and give yourself a hug from me, ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) --- liz_dolz wrote: > I am still trying to make sense of the Charge > diagnosis. It seems like > such a complex condition, involving so many > different parts of the body > and organs. They tell you MOST children will also be > mentally retarted. > Some will develop seizures and cerebral palsy. I am > wondering if this > is really true. I am curious how many of you out > there have found this > to be true and how many Charge children actually > have brain > abnormalities, and conditions such as polymicrogyria > or lissencephaly. > > Liz > > > > __________________________________________________ Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Thank you, ina, it always makes me feel better when I read your mail. It is true, that we must have faith, and hope for the best always. Sometimes, I can be a bit too analytical and pessimistic, and that is wrong. 's mom IS VERY POSITIVE AND OPTIMISTIC and I am more like his dad, or I should say, my son is more like me, LOL....But the important thing is that we have LOVE and CARING.and understanding. I have spent hours and days, searching for information and reading and learning about CHARGE and I think I have too much time on my hands, I need to take a break from this, because I am getting headaches and I need to stay strong to help my family. Thanks again, Liz Hugs to all you of you out there from me too. From: ina Multhaupt Date: 08/30/06 11:38:25 To: CHARGE Subject: Re: Charge Hi, Liz. Good news here... in the recent research, it is no longer true to say that MOST kids with CHARGE will develop mental retardation. There seems to be a higher chance at developing seizures, but there are many kids with CHARGE who never develop seizures. I have not read about a large correlation between CP and CHARGE. The thing is, there is SO MUCH VARIATION in how CHARGE presents itself. TO me, it is " easiest " to deal with Vinny's diagnosis by reminding myself that the one thing for sure all kids with CHARGE have in common is variation in symptoms. There is where I found my hope... he may not develop seizures, he may not have mental retardation, he MAY learn how to walk and talk and eat... The hardest part is waiting to see what the future holds for him. Only HE will be able to show us what he is capable of and it will happen on his own timeline. Frustrating and anxiety-producing? Absolutely. However, I can fear the worst or I can hope for the best. I choose- for Vinny's sake- hope for the best. He will write his own story of CHARGE and he will tell us his story as time moves on. We just have to sit patiently and wait, doing all we can for him in the meantime. It surely is a testament to one's patience, but if that is what he needs from us then that is what we give him. Hang in there and give yourself a hug from me, ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) --- liz_dolz wrote: > I am still trying to make sense of the Charge > diagnosis. It seems like > such a complex condition, involving so many > different parts of the body > and organs. They tell you MOST children will also be > mentally retarted. > Some will develop seizures and cerebral palsy. I am > wondering if this > is really true. I am curious how many of you out > there have found this > to be true and how many Charge children actually > have brain > abnormalities, and conditions such as polymicrogyria > or lissencephaly. > > Liz > > > > __________________________________________________ Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Liz, It is overwhelming to read the information on CHARGE Syndrome out on the internet. The only information I rely on is the information I receive right here from actual parents of children with CHARGE--and of course, the adults with CHARGE that belong to this list. I too very much wanted to know what aspects of CHARGE would affect my daughter. The reality is, we won't know until our children grow and develop. We just have to take one day at a time and try to be proactive based on things we know might happen. I've reititerated this story before, but I feel compelled to share it to you--as I don't know if you've heard it. During the early days of the birth of my daughter I begged anyone who would listen to me to tell me what my daughter would be like. I actually asked a doctor who was passing by, " Will my daughter be normal " ? All he said to me was this: " Love your baby " . And you know what? In the end, that's all we can do--LOVE our children. There are children who have no medical issues but have no love, and they end up having problems. If we follow through on the best medical advice we can get, and LOVE our babies, in the end, they are here for our care--they are the light of our world--and it will be OKAY!!! We won't get all the answers at once, but what our children have, is what they have. We can't go back in time, but we can plan for a great future. I have never met a child with CHARGE who has been mentally retarded. When I went to the CHARGE conference in Miami I talked with adult women with CHARGE who gave me all the hope in the world that my daughter would grow up and be my little shopping buddy, and that we would be the best of friends. I worry--for sure I worry--but most of all, I LOVE my baby God Bless and stay strong! B, mom to Zachary 5 years and Carmen 2 years (CHARGE) > > Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from your > vocabulary lol please! > > I dont think anyone of the chargers have mental retardation actualy. Some > may be developmenaly delayed due to vision and hearing, but they are still > very BRIGHT kids > > Chantelle (27 year old CHARGEr IN college no less) > > > -- > My spelling's kinda wobbly. It's good spelling but the letters wobble and > end up in the wrong places. - Winnie the Pooh > > > Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Yes, I know, UGLY! but I am just quoting the literature, you know, as I read all this stuff that is out there, and I guess I am getting too focused on this " abnormal brain MRI " that my sweet has, and of course they didn't explain much about it yet, I expect that the neurosurgeon will go into at the next appointment,but when I read about brain abnormalities, they use this word " retardation " which brings up all kinds of awful images. I know, deep inside that it doesn't really matter and like ina said, there are no 2 children with Charge that are the same. and LOOK AT YOU!! Thank you for your comment. Liz -- Re: Charge Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from your vocabulary lol please! I dont think anyone of the chargers have mental retardation actualy. Some may be developmenaly delayed due to vision and hearing, but they are still very BRIGHT kids Chantelle (27 year old CHARGEr IN college no less) -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote
Guest guest Posted August 30, 2006 Report Posted August 30, 2006 Liz, I look at the word " retardation " as really a delay--like growth retardation is really a delay in growth. No doubt, plenty of CHARGE kids have delayed growth and development, but they catch up eventually. The first 2 years are tough for sure. Things get better, I promise! B. > > Yes, I know, UGLY! but I am just quoting the literature, you know, as I read > all this stuff that is out there, and I guess I am getting too focused on > this " abnormal brain MRI " that my sweet has, and of course they > didn't explain much about it yet, I expect that the neurosurgeon will go > into at the next appointment,but when I read about brain abnormalities, they > use this word " retardation " which brings up all kinds of awful images. > I know, deep inside that it doesn't really matter and like ina said, > there are no 2 children with Charge that are the same. and LOOK AT YOU!! > > Thank you for your comment. > > Liz > > -- Re: Charge > > Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from your > vocabulary lol please! > > I dont think anyone of the chargers have mental retardation actualy. Some > may be developmenaly delayed due to vision and hearing, but they are still > very BRIGHT kids > > Chantelle (27 year old CHARGEr IN college no less) > > > -- > My spelling's kinda wobbly. It's good spelling but the letters wobble and > end up in the wrong places. - Winnie the Pooh > > > Quote
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