Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi , Please do not be " scared off " from having other children. I mean, of course this is a rather personal decision, so I can only share my story: We have 5 children altogether (yes, same dad and same mom.) Our 1st born son developed neurotypically (in fact, was advanced.) Then, along came our daughter, who to our devestation was born severely affected by a rare chromosome duplication of chromosome 18. After her birth, my husband and I were both tested for genetic mutation although none was found. It was determined that this was an isolated/sporatic incident ( " a fluke " ) and that subsequent pregnancies should be unaffected. HOWEVER, that said, let me also explain a bit about genetics: When dealing with these, there is no such thing as a 100% guarantee! Although people may be tested for some genetic conditions which are readily identifiable, other mechanisms do exist. One must keep in mind, for instance, that only a few cells in our bodies can be tested and since our entire bodies are made up of these, there could still be a possibility of " gonadal mosaism " (a few cells within the female/male reproductive system that are affected.) Though this may mean little or nothing for the parent, it has a potential to affect an offspring more seriously. The humane genome is in the midst of being mapped, but there is so much that remains unknown. Certain differences, such as ASD's (Autism Spectrum Disorders) are thought to have strong genetic roots (as many of us can trace similar traits we see in our children back to other relatives: dad, uncle, grandpa, ourselves) but at this point, there is no definitive test to find out whether or not a person is/will be affected. Couple this with SO many other factors that could be causitive/influencing, such as enviromental triggers. All of our other children were genetically tested and found to have a 'normal' chromosome makeup. So, along comes one of our sons, who shows signs of delay... What the heck?!?! Although he is not at all as developmentally afflicted as his sister, we did notice that he was " different " from his N/T siblings. We actually requested a second genetic test, but that, too, turned up 'normal' results. So our 2 children who have learning differences, are they affected because of a predispositon for an ASD? Who knows! Would I change things? Well, of course! Given a choice I would wish that no one would have any struggles, but I can honestly tell you I would not change THEM: I LOVE my children with every inch of me! Our N/T children challenge us, albeit differently, but just as tryingly; sometimes moreso! A friend once put this to me: " EVERYONE has some form of difference: It may be that a person is near-sighted or far, obese or thin, have curly hair or straight, have dark skin or light, blue eyes or brown, etc. Some differences are more noticable than others; while other differences are not as noticable, but have a grave potential for harm: A predispostion to Cancer, Diabetes, etc. Bottom line: We are all unique. And, with that comes individualism in the way we handle life's obstacles. I've learned a lot from my children: How to be less judgmental and more supportive of others; even if our views differ. There are many famous persons who have been known to have learning differences who have positively impacted society because their uniqueness have provided insight beyond any previously encountered! And, so with that, I can tell you, for ME, personally, the only regret I would have had would have been not taking a chance and having a family because I love each and every one of them for who they are. Should you be concerned? Well, as a parent, I think it will always follow that we will worry over our children. Yet, despite all of our talents, flaws (mine included), etc. I love all my children equally. IMHO - Velvet > > Hello I noticed that some of the post I have read are from person whom > not only have a child with Autism but have another child with AS or > other special needs is this common? As I to have another child with > special needs besides my 3 year with FHA should I be worried for my > youngest child or other children I may have? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Velvet, Does your daughter have full trisomy 18? My daughter has a deletion on the Q arm of the 18th chromosome, or 18Q-. Small world. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 We have five kids and four of them have special needs. Only our oldest is NT. My second son has AS. The youngest four have Bipolar Disorder--as do I. My mother and her mother also had it. We've been diagnosed with Familial Bipolar Disorder--which is, unfortunately, more than 80% heritable. I don't know if I would have had children if I had known in advance that they had such a high risk of inheriting a serious mental illness. Even though it's totally not my fault, I still feel a degree of guilt. AFA the Asperger's goes, my husband and son have it. Two of my other children have autistic spectrum 'traits,' but not enough to be diagnosed with anything. When our third son started showing autistic traits, our psychiatrist told me that if you have one child with autism, other children in the same family have a 15% chance of also being diagnosed. My son with AS also has Tourette's-- and another son has physical tics, but not verbal ones, so he misses a Tourette's diagnosis by a hair. Then there's the ADD/ADHD. Four of the kids take meds for that and are affected to varying degrees. As you can see, it's possible that my husband and I should have thought twice before we reproduced! ;-) We didn't start getting all these diagnoses until *after* we already had the kids though. Having so many kids with special needs has changed the purpose of my life. I used to be an Air Force officer--now I'm a mom who spends her time dealing with doctors and therapists and the schools. You know what though? I love these people to distraction. They're all bright and shiny. Sometimes they have to try harder than other people, and sometimes I have to try harder than some other moms, but I wouldn't be without them for a minute. So I'm glad I didn't know then what I know now. I might have decided not to have children--and that would have been most unfortunate. Sue C. > > Hello I noticed that some of the post I have read are from person whom > not only have a child with Autism but have another child with AS or > other special needs is this common? As I to have another child with > special needs besides my 3 year with FHA should I be worried for my > youngest child or other children I may have? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Hello , Our daughter does not have a trisomy, rather a more rare duplication called Tetrasomy 18p (which, from what I have gathered, is less serious than full trisomy.) OMGoodness! Yes, it certainly is a 'small world.' When I read your question this morning I noticed the name, " kaityplusone " which then rang a bell. I took a peek at the other support group (chromosome disorder) and see that we are both members there! WOW! To top this off, another mom I correspond with (a lady in England) has a child with the same duplication my daughter has PLUS another child with Aspergers! Are you familiar with the genetist, Dr. Cody? I once poised a question to her: Whether or not there might be a connection between chromosome 18 and autism and she explained that it could be that we are more pre- disposed to ASD's. Hmmm, go figure, now there are 3 of us with similarities! Please keep in touch! Velvet > > Velvet, > > Does your daughter have full trisomy 18? My daughter has a deletion on > the Q arm of the 18th chromosome, or 18Q-. Small world. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 I have a child with autism, and a child with seizure disorder -- doctors seem to do the 'hmmmmm' thing and start writing notes as soon as they learn of this. The two are related, but not enough to be of any help, if that makes sense? I know it increases the risk my autistic child will have seizure, but I'm still praying that the odds are in our favor. But, on the other hand, I have two totally neurotypical children too kidswithautism wrote: > > Hello I noticed that some of the post I have read are from person whom > not only have a child with Autism but have another child with AS or > other special needs is this common? As I to have another child with > special needs besides my 3 year with FHA should I be worried for my > youngest child or other children I may have? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 *Donna* My oldest (7) girl has a seizure disorder as well, after looking into AS I'm starting to think she may have it too. She will be doing something and just start talk about things that has nothing to do with what is going on and most of the time it things that should not be said or not at that time. We just thought is was her meds plus they said she was ADHD but we never saw that nor did we see any of the sign and systems in her. My youngest boy (3) is the one with HFA my 1st kids is fine barely ever even gets sick and is a straight A student and loves to learn new things. My youngest girl (20 months) is speech delayed but ECI strongly feel she is choose not to talk because her brother (my 3 year old ) make enough noise. but they come and work with her just to try to get her to talk. When I was told about my 3 year old had HFA i asked if we should be worried about the other kids they said it really doesn't hit families it only hit one person in a family I'm thinking there is a link between all of our kids. On 11/10/06, Donna B <donnabzy@...> wrote: > > I have a child with autism, and a child with seizure disorder -- doctors > > seem to do the 'hmmmmm' thing and start writing notes as soon as they > learn of this. The two are related, but not enough to be of any help, if > that makes sense? I know it increases the risk my autistic child will > have seizure, but I'm still praying that the odds are in our favor. > > But, on the other hand, I have two totally neurotypical children too > > kidswithautism wrote: > > > > Hello I noticed that some of the post I have read are from person whom > > not only have a child with Autism but have another child with AS or > > other special needs is this common? As I to have another child with > > special needs besides my 3 year with FHA should I be worried for my > > youngest child or other children I may have? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 I am so glad that you posted this topic. My first born child was born with Down Syndrome and a severe heart defect. She lived for 13 months and then passed during her fourth open heart surgery. Our next pregnancy resulted in early miscarriage. My third pregnancy resulted in my son who has Asperger's. My fourth pregnancy was a blighted ovum (empty sac) which resulted in miscarriage. My fifth pregnancy was going along great. We had seen the baby several time on U/S and we even passed the NT scan and then the baby died at 13 weeks gestation. We are so devastated and are ready to give up reproducing. I just feel so badly for my AS son because I really think a sibling would help him out for so many reasons but I feel like I am not capable of reproducing a NT child. This does not run in my family so I am at a loss. Has anyone researched MTFHR (mother's not being able to absorb folic acid/ blood clotting disorder). A lot of mother's in one of my Down Syndrome support groups have MTHFR and have multiple children with special needs ranging anywhere from ADHD to Spina Bifida. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Dear Heidi, My goodness, you certainly have been through a great deal. My sincere sympathy for your losses. No, I have never heard of " MTFHR. " I have heard of blood clotting disorders, but don't know much about these. I imagine that you have been through all of the typical tests by this point, but I was wondering about Rh blood compatibility as I grew up with a girl who lost 3 pregnancies due to this. When she was finally tested and treated, her 2 subsequent children were born without difficulty. Again, I am sorry for your loss. Sending good thoughts your way! Velvet > > I am so glad that you posted this topic. My first born child was born > with Down Syndrome and a severe heart defect. She lived for 13 months > and then passed during her fourth open heart surgery. Our next > pregnancy resulted in early miscarriage. My third pregnancy resulted in > my son who has Asperger's. My fourth pregnancy was a blighted ovum > (empty sac) which resulted in miscarriage. My fifth pregnancy was going > along great. We had seen the baby several time on U/S and we even > passed the NT scan and then the baby died at 13 weeks gestation. We are > so devastated and are ready to give up reproducing. I just feel so > badly for my AS son because I really think a sibling would help him out > for so many reasons but I feel like I am not capable of reproducing a > NT child. This does not run in my family so I am at a loss. > > Has anyone researched MTFHR (mother's not being able to absorb folic > acid/ blood clotting disorder). A lot of mother's in one of my Down > Syndrome support groups have MTHFR and have multiple children with > special needs ranging anywhere from ADHD to Spina Bifida. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Velvet- Thanks so much for acknowledging my post. I always feel like such a thread killer! :-) I don't have RH factor I know for sure I was tested for that. We also did basic genetic testing and that was all normal. I guess it's just one of those things. - Heidi > > Dear Heidi, > > My goodness, you certainly have been through a great deal. My > sincere sympathy for your losses. > > No, I have never heard of " MTFHR. " I have heard of blood clotting > disorders, but don't know much about these. > > I imagine that you have been through all of the typical tests by > this point, but I was wondering about Rh blood compatibility as I > grew up with a girl who lost 3 pregnancies due to this. When she was > finally tested and treated, her 2 subsequent children were born > without difficulty. > > Again, I am sorry for your loss. Sending good thoughts your way! > > Velvet > > > > > > I am so glad that you posted this topic. My first born child was > born > > with Down Syndrome and a severe heart defect. She lived for 13 > months > > and then passed during her fourth open heart surgery. Our next > > pregnancy resulted in early miscarriage. My third pregnancy > resulted in > > my son who has Asperger's. My fourth pregnancy was a blighted ovum > > (empty sac) which resulted in miscarriage. My fifth pregnancy was > going > > along great. We had seen the baby several time on U/S and we even > > passed the NT scan and then the baby died at 13 weeks gestation. > We are > > so devastated and are ready to give up reproducing. I just feel so > > badly for my AS son because I really think a sibling would help > him out > > for so many reasons but I feel like I am not capable of > reproducing a > > NT child. This does not run in my family so I am at a loss. > > > > Has anyone researched MTFHR (mother's not being able to absorb > folic > > acid/ blood clotting disorder). A lot of mother's in one of my > Down > > Syndrome support groups have MTHFR and have multiple children with > > special needs ranging anywhere from ADHD to Spina Bifida. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 My son and husband are both positive for MTHFR. It was explained to me to be a genetic marker that could cause the body not to make enough glutothione (which helps the body to get rid of heavy metals) and can effect the Krebs Cycle that all cells go through, effects homocystine levels. A lot of people in the population test positive for it and never have problems getting rid of heavy metals. This is suppose to be another link to the autism puzzle. All the best, Jill " And all things, whatever you ask in prayer, believing, you will receive. " Matt 21:22 Quote Link to comment Share on other sites More sharing options...
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