Guest guest Posted July 6, 2000 Report Share Posted July 6, 2000 , I am sitting at the computer typing as I am asking Lissajane how she feels she reacts to people and she says give me an example... Example is your in a group of people you dont know how do you feel...... Out of place. was her answer, but I honestly think that when put in a position that requires her to do something she tries he hardest to work it the best way she can....I read that to her and she goes I guess so......She stresses out, but she comes home and if it is something we can talk about and work out we do and she does.....I hope this answered your question. , Lissa's mom ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 That's a tough one. I found out through amnio at 8 months gestation that my daughter would have mds. She has alot of characteristics of a child with downs. I never knew the percentage of cells affected because we were told she wouldn't live. We were more concerned with her heart and survival that we didn't think of finding out more yet. I recently went to a developmental specialist, and voiced some of my concerns regarding her development. I know most parents write how great their kids are doing and they're not far behind at all. Unfortunately, I'm not one of those. My biggest fear is that they made a mistake diagnosing her with mosaicism and that she may have full downs. I asked Dr. Cooley about this and he said it is a possibility. We will be testing her in Dec., but I'm worried because it's like being told she has down syndrome again. Maybe these parents suspect something but just doesn't know what to do. You might want to ask if there was any further tests done after the birth to rule this out. Perhaps if you told her you have a child with mds, she may be a little less defensive. Just proceed with caution, as you need to know how she would react. I think if you talked about your child and just asked as part of the conversation, you may get some more answers about how to proceed. Hopefully, you get an answer and know you're trying to help. Take care, Kris mom to Sierra MDS/CAVC/TOF/VSD/mod-severe mitral valve regurg./GERD etc etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 In a message dated 11/8/2000 11:09:49 PM Eastern Standard Time, bdehoff@... writes: << t's my understanding that boys with DS are almost always unable to have children. Is this different for MDS? Thanks. >> I had heard this also! Hum, more food for thought! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 It's my understanding that boys with DS are almost always unable to have children. Is this different for MDS? My understanding is that they can have their sperm tested, they may not be affected at all, or maybe only partly, etc. That's what I was told anyway. Sharon, mother to Matt 5 MDS, and 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2000 Report Share Posted November 16, 2000 Angel: Thanks for your message about comparing mds & ds abilities. I'm still having a hard time with that issue, but I'll just concentrate on her therapies and her sense of humor. She went to the pedi today and hit, what I believe, to a big milestone. Since she's been born, Sierra's been dealing with eating and weight issues. Today, she finally hit the big marker of 20 pounds!! So she may not be hitting the developmental milestones, but to get her to 20 pounds is a major milestone for us. We've started with a new therapist group and they see a lot of emerging skills. She now goes to Gymboree twice a week and the teacher noticed a difference in her progress. Other people have told me she has made progress and seems to be getting stronger. Today, for the first time ever, her doctor said she looked great and actually looked well nourished!! Now that we are not having to worry so much about her heart, we can concentrate on her development and know we can push her to her limits. Maybe she just needed time to recover from all her medical issues. I have to keep reminding myself that she has other issues most haven't dealt with. Still it's frustrating when you see others making such good progress. Oh well. I have saved your e-mail and read it when I feel down. It has helped me alot! Thank you so much for understanding and listening. Take care, Kris mom to Sierra 22 mos. MDS/CAVC/TOF/VSD/GERD etc etc etc 11 and 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 , You are definately in my prayers! Kristy --- catknapp75@... wrote: > Hi Everyone, > It's been a long time since I've written but > I'm a faithful reader of > the listings on this site. My 19 year old daughter > has mds and we have been > going through some tough times. Annie has developed > a mental illness > (diagnosed approx. 2 1/2 years ago.) Let me tell > you, dealing with her mds > diagnosis has been mild compared to the feelings we > now must endure. Annie > had always done fairly well. She went to regular > classes all through her > school years and graduated from high school last > spring. But the last couple > of years in high school were very difficult. > Anyway, right now the doctors > are trying to find the right medicine to help her > overcome her feelings of > fear and paranoia. It is very trying. > Sorry to sound so down, but it's been one of > those days. I know it's > unlikely that anyone has experienced this kind of > trial with their own mds > children, but if so, I'd like to hear from you. In > the meantime, please keep > Annie in your prayers. > Thanks, > (mother of Annie, 19 and 21) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 : I can't say I have had any experience in this field yet, as Sierra is only 2. But I have read before, that depression is common in children with ds, particularly since they hit the teen years and are more aware of their differences. I don't know if this applies to children with mds as well? Do you have a lending library in your area? They may have more books about this. Also, are you hooked up with an area agency for developmental delays (I don't know if Annie falls into this category)? This whole MDS and full ds is confusing to me anyway, being told Sierra had mds before she was born, then 2 yrs later being told it's full ds. Anyway, if she is working with a case worker, maybe they have a parent to parent network and have another parent whose been through this. It's worth a shot. I hope you can find some answers quickly. I know how frustrating it can be trying to getting answers and help. My two sons were diagnosed this past summer with ADD (with possible bi-polar) and the other with ADHD; yet we still haven't gotten any answers of what to do now. Hang in there! Kris mom to Sierra 2 yr 9 mos., 12, 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 , Praying, Praying, Praying...!!! Hang in there! Much Love, Barb Martz Mom to Jonas 11 1/2 mo & 6 years (no subject) Hi Everyone, It's been a long time since I've written but I'm a faithful reader ofthe listings on this site. My 19 year old daughter has mds and we have beengoing through some tough times. Annie has developed a mental illness(diagnosed approx. 2 1/2 years ago.) Let me tell you, dealing with her mdsdiagnosis has been mild compared to the feelings we now must endure. Anniehad always done fairly well. She went to regular classes all through herschool years and graduated from high school last spring. But the last coupleof years in high school were very difficult. Anyway, right now the doctorsare trying to find the right medicine to help her overcome her feelings offear and paranoia. It is very trying. Sorry to sound so down, but it's been one of those days. I know it'sunlikely that anyone has experienced this kind of trial with their own mdschildren, but if so, I'd like to hear from you. In the meantime, please keepAnnie in your prayers. Thanks, (mother of Annie, 19 and 21) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 , I am so sorry that you are going through this difficult time. I will be lifting Annie up in prayer. Please know that we are all here for you to listen and support you in any way we can. I look forward to hearing how Annie is doing, and hopefully it will be a praise report! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 Hi : I'm so sorry to hear that Annie is having such a hard time. I went through a situation with my son who developed an anxiety disorder and it was terrible to see him be so consumed with irrational feelings. You are absolutely right when you say that dealing with mds is nothing compared to watching your children struggle with mental disorders. Thankfully, with the right medication and therapy is doing fine. I am sure the doctors will find a combination of medication and therapy that will work for Annie. In the meantime hang in there and know there are others praying for you and Annie. Have faith that this too shall pass. ann (Mom to mds 8 yrs old and 11.5 yrs old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 Dear , We here in the Beky household will be constantly Praying for Annie and hoping that the Doctors will soon find the right medicine that will help her cope allot better.....I Pray for strength for you, as being a mum is tiring specially when our children need us more, when they aren't well.... Please take care and hang in there........... sussan & courteney (MDS)17months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Hi , I'm in Albemarle which is about 30 mi. east of Charlotte. I would be curious to know what your experience has been with the EI programs since you're in NC. We are just getting started in the process and it seems each state is different. Hope <catknapp75@... wrote: <Hi Hope, < Welcome to the group. I don't post messages often, but I'm always <there <reading and relating to everyone. I noticed you were from NC. I live in <Durham. Are you anywhere near there? Congratulations on your new <little <one. She is adorable! I have a 19 year old daughter with MDS, named <Annie. < Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Hi Hope, I guess I'm not a good one to ask --- what are EI programs? I'm not familiar with that term. Sorry..... Write back and let me know. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 If I'm not mistaken I think she's talking about Early Intervention. That's what my son Brannon is in. a Mom to Brannon 21 mths w/mds > Hi Hope, > I guess I'm not a good one to ask --- what are EI programs? I'm not > familiar with that term. Sorry..... Write back and let me know. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hello , I see today the medical profession today are indulging in a little self deception . They announce that there is no link with the MMR jab and autism . They base their statement on the fact that the immune system does not produce a reaction in the form of producing antibodies in response to the vaccine ...they have missed the point , the immune system is damaged by the vaccine, it basically collapses allowing pathogens to grow ..more evidence on this is coming on stream from animal medicine where it's becoming increasingly evident that animal vaccines cause unexpected illness ..see my site for more on this .. http://news.bbc.co.uk/1/hi/health/7226763.stm No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.20/1260 - Release Date: 05/02/2008 09:44 Quote Link to comment Share on other sites More sharing options...
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