Comments for Einstein Syndrome: Down Syndrome with a Positive Attitude http://einstein-syndrome.com Down Syndrome with a Positive Attitude Thu, 29 Jul 2010 20:48:04 +0000 hourly 1 http://wordpress.com/ Comment on Constipation in Down syndrome by Jess http://einstein-syndrome.com/health_medical/constipation/#comment-2054 Jess Thu, 29 Jul 2010 20:48:04 +0000 http://einsteinsyndrome.wordpress.com/?page_id=121#comment-2054 @ Sherry Thanks Sherry. It also always smells the same. No matter what she eats. I'm just worried there is more going on than just what we can see and fix with simple remedies. The lactulose has enabled more to slip out than before but she still wont relieve herself by pushing it out. She's associated it with pain so she'd just rather hold it all in than attempt to go herself. We have our regular GP she see's but I believe we need a specialist who deals with these issues in DS children. We're in NW indiana, I've searched online and cant find a listed doctor who deals with this. Any suggestions anyone? @ Sherry Thanks Sherry. It also always smells the same. No matter what she eats. I’m just worried there is more going on than just what we can see and fix with simple remedies. The lactulose has enabled more to slip out than before but she still wont relieve herself by pushing it out. She’s associated it with pain so she’d just rather hold it all in than attempt to go herself. We have our regular GP she see’s but I believe we need a specialist who deals with these issues in DS children. We’re in NW indiana, I’ve searched online and cant find a listed doctor who deals with this. Any suggestions anyone?

]]> Comment on Constipation in Down syndrome by sherry http://einstein-syndrome.com/health_medical/constipation/#comment-2053 sherry Thu, 29 Jul 2010 17:04:55 +0000 http://einsteinsyndrome.wordpress.com/?page_id=121#comment-2053 I'm not a medical doctor just a mom of a 21 yo with DS, Autism and GI problems. In my opinion this child needs to see a gastroenterologist asap. The poop is having to travel around an impaction I would guess which is why laxatives are not working and why you are only seeing smudges. It's possible to eventually see actual diarrhea coming out around an impaction also. I’m not a medical doctor just a mom of a 21 yo with DS, Autism and GI problems. In my opinion this child needs to see a gastroenterologist asap. The poop is having to travel around an impaction I would guess which is why laxatives are not working and why you are only seeing smudges. It’s possible to eventually see actual diarrhea coming out around an impaction also.

]]> Comment on Constipation in Down syndrome by Jess http://einstein-syndrome.com/health_medical/constipation/#comment-2052 Jess Thu, 29 Jul 2010 15:41:37 +0000 http://einsteinsyndrome.wordpress.com/?page_id=121#comment-2052 I have an almost 7 yr old step daughter. She is still in pull ups and I dont see potty training any where in the near future. She will go pee on the potty but that is it. He tummy is constantly hard and she's always sitting on her heal and rocking. She just will not go. We've done enema, supposidories, and now she's been on lactulose for almost 3 weeks. She will not push anything out. There is constantly poop in her pull up, she's so backed up I believe it just pushes itself out. But its always very little, more like just smudges. We are at our whits end. Any suggestions? I have an almost 7 yr old step daughter. She is still in pull ups and I dont see potty training any where in the near future. She will go pee on the potty but that is it. He tummy is constantly hard and she’s always sitting on her heal and rocking. She just will not go. We’ve done enema, supposidories, and now she’s been on lactulose for almost 3 weeks. She will not push anything out. There is constantly poop in her pull up, she’s so backed up I believe it just pushes itself out. But its always very little, more like just smudges. We are at our whits end. Any suggestions?

]]> Comment on Einstein Syndrome by Romy http://einstein-syndrome.com/einstein-syndrome/#comment-2041 Romy Sat, 24 Jul 2010 03:19:01 +0000 http://einsteinsyndrome.wordpress.com/?page_id=20#comment-2041 My beautiful baby brother will turn 30 next Saturday! I remember my parents bringing him home from the hospital worried, stressed and without the joy I'd been expecting a new baby to bring. But his unlimited ability to love and laugh brightened up my parents fears. Everyone is so proud of our handsome, polite and friendly young man. He reads, works, is a fabulous ballroom dancer, swimmer and always wanting to help others. A few years ago he surprised us all by getting himself a girlfriend, asking out a young lady whose parents my parents had met at a support group for families with Down Syndrome children. He phoned her and asked her to a movie and restaurant without making much of a fuss about it at all. a few weeks later they were holding hands and proclaiming they would be together forever! It's so nice to see him have a companion and look towards building his own future. His girlfriend is a very capable young lady whose parents fought hard to have her taught in the mainstream school system where she learnt to read and write and she did so well she even has her drivers licence and is a very capable and careful driver. My parents regret they did not push my brothers teachers more but a few years ago they got him a tutor and within months he had learnt letters and was on his way to reading fluently. People with DS are very special. They are full of love and they are wise and smart. Don't underestimate them. Sure, some things are hard for them, but there is so, so much they can do if they are loved. My beautiful baby brother will turn 30 next Saturday! I remember my parents bringing him home from the hospital worried, stressed and without the joy I’d been expecting a new baby to bring. But his unlimited ability to love and laugh brightened up my parents fears. Everyone is so proud of our handsome, polite and friendly young man. He reads, works, is a fabulous ballroom dancer, swimmer and always wanting to help others. A few years ago he surprised us all by getting himself a girlfriend, asking out a young lady whose parents my parents had met at a support group for families with Down Syndrome children. He phoned her and asked her to a movie and restaurant without making much of a fuss about it at all. a few weeks later they were holding hands and proclaiming they would be together forever! It’s so nice to see him have a companion and look towards building his own future. His girlfriend is a very capable young lady whose parents fought hard to have her taught in the mainstream school system where she learnt to read and write and she did so well she even has her drivers licence and is a very capable and careful driver. My parents regret they did not push my brothers teachers more but a few years ago they got him a tutor and within months he had learnt letters and was on his way to reading fluently.
People with DS are very special. They are full of love and they are wise and smart. Don’t underestimate them. Sure, some things are hard for them, but there is so, so much they can do if they are loved.

]]> Comment on God, Do You Care? by Repost: The Bible is Powerful « The Works of God http://einstein-syndrome.com/inspiration/god_cares/#comment-2034 Repost: The Bible is Powerful « The Works of God Mon, 19 Jul 2010 10:12:05 +0000 http://einsteinsyndrome.wordpress.com/?page_id=80#comment-2034 [...] can read the whole article here: God, do you care) Here’s the situation. Moses is at the burning bush. God wants him to go to Pharaoh, and Moses [...] [...] can read the whole article here: God, do you care) Here’s the situation. Moses is at the burning bush. God wants him to go to Pharaoh, and Moses [...]

]]> Comment on 2. Beware of Creeping Low Expectations by Cole http://einstein-syndrome.com/2010/03/03/2-beware-of-creeping-low-expectations/#comment-2011 Cole Fri, 02 Jul 2010 17:53:56 +0000 http://einstein-syndrome.com/?p=734#comment-2011 Christine- I don't have words of wisdome but am in a similar position- we are getting the same issues with our girl who is 16 mos old. If you find some advice that speaks to you- please share! Christine- I don’t have words of wisdome but am in a similar position- we are getting the same issues with our girl who is 16 mos old. If you find some advice that speaks to you- please share!

]]> Comment on 1. Embrace your Calling by Cole http://einstein-syndrome.com/2010/03/03/embrace-your-calling/#comment-2009 Cole Fri, 02 Jul 2010 17:33:20 +0000 http://einstein-syndrome.com/?p=747#comment-2009 This post really spoke to me Miriam- thank you. I'm struggling right now with that balance of high expectations and Abby's struggle with gross motor and how her day is put together around this in terms of therapy and school. This post really spoke to me Miriam- thank you. I’m struggling right now with that balance of high expectations and Abby’s struggle with gross motor and how her day is put together around this in terms of therapy and school.

]]> Comment on 2. Beware of Creeping Low Expectations by Christine http://einstein-syndrome.com/2010/03/03/2-beware-of-creeping-low-expectations/#comment-1996 Christine Thu, 24 Jun 2010 15:48:36 +0000 http://einstein-syndrome.com/?p=734#comment-1996 Getting scared! I love your blog!!! However, I find my expectations are getting lowered based on what my daughter can do. For example she is 15 months and no where near crawling. She fights it!! She also isn't signing despite my signing and showing baby signing times since she was 9 months old. Kids that are younger than her with Ds are signing and crawling and some are even walking. I know that every child has their own time table and I really work with her, but I"m getting worried. I don't want to lower my expectations but at the same time I need to be realistic too. I can't MAKE her do what she won't do. I do work with her and don't work full-time. I also know that the more she gets behind, the more she gets behind and it's this giant snow ball effect. Do you have any words of wisdom for me? Thank you! Getting scared!
I love your blog!!! However, I find my expectations are getting lowered based on what my daughter can do. For example she is 15 months and no where near crawling. She fights it!! She also isn’t signing despite my signing and showing baby signing times since she was 9 months old. Kids that are younger than her with Ds are signing and crawling and some are even walking. I know that every child has their own time table and I really work with her, but I”m getting worried. I don’t want to lower my expectations but at the same time I need to be realistic too. I can’t MAKE her do what she won’t do. I do work with her and don’t work full-time. I also know that the more she gets behind, the more she gets behind and it’s this giant snow ball effect. Do you have any words of wisdom for me? Thank you!

]]> Comment on Feeding an infant by Liora http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1994 Liora Wed, 23 Jun 2010 10:45:43 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1994 Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life...stupid me consented) but then I started asserting myself. No more formula. I'll nurse her. No I won't pump it out so you see "how much", I'm not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine. In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You'll be glad you did!! Liora in Beijing Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life…stupid me consented) but then I started asserting myself. No more formula. I’ll nurse her. No I won’t pump it out so you see “how much”, I’m not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine.

In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You’ll be glad you did!! Liora in Beijing

]]> Comment on Thyroid Treatment by Pamela Feres http://einstein-syndrome.com/health_medical/thyroid__/#comment-1987 Pamela Feres Sat, 19 Jun 2010 23:58:48 +0000 http://einstein-syndrome.com/?page_id=399#comment-1987 I have two boys 20 years old and 4 years old with DS. Both were on Thyroid. BUT once I used zinc and iodine for a period of time their need for thyroid went down from 5 pills to 0 pills for my 20 year old and from 3 pills to 1 pill for my 4 year old. As well I am looking into Fanconi syndrome more and more because it seems when you have mineral losses, short stature and many other "Fanconi syndrome" problems it may be a kidney problem that creates much of the problems with health and intellect. I give rehydration drinks, cordyceps an organic mushroom that helps kidneys heal, B12, B6, Zinc, iodine, and now potaba (potassium and special B suppliments, both my boys are doing so much better. When something is called syndrome it means unknow etiology! Searching for the etiology and why our kids have purple hands and feet which is now...cured by potaba! In fact many other abnormalities in health need to stop being ignored in our kids so all these clues can be put together to find out what is really going on. IT is not simply a down syndrome thing....that doctors say to us!!! I have learned NOT to accept this and search for doctors that can look past their nose to find answers to the health issues in my kids! PKU desease was a problem of intellect! It has been discovered that protein breakdown is the problem and the intellectual problems with these people can now be supported adequately with proper diet. Fragile x was found to be a problem with proteins as well.....maybe soon they too will have better intellectual capacity with this knowledge. Cheers to research and finding answers for our angels to be healthy, happy and as BRIGHT as can BE! May all these clues that us as mom's find be the beginning of new found answers! I have two boys 20 years old and 4 years old with DS. Both were on Thyroid. BUT once I used zinc and iodine for a period of time their need for thyroid went down from 5 pills to 0 pills for my 20 year old and from 3 pills to 1 pill for my 4 year old. As well I am looking into Fanconi syndrome more and more because it seems when you have mineral losses, short stature and many other “Fanconi syndrome” problems it may be a kidney problem that creates much of the problems with health and intellect. I give rehydration drinks, cordyceps an organic mushroom that helps kidneys heal, B12, B6, Zinc, iodine, and now potaba (potassium and special B suppliments, both my boys are doing so much better. When something is called syndrome it means unknow etiology! Searching for the etiology and why our kids have purple hands and feet which is now…cured by potaba! In fact many other abnormalities in health need to stop being ignored in our kids so all these clues can be put together to find out what is really going on. IT is not simply a down syndrome thing….that doctors say to us!!! I have learned NOT to accept this and search for doctors that can look past their nose to find answers to the health issues in my kids!

PKU desease was a problem of intellect! It has been discovered that protein breakdown is the problem and the intellectual problems with these people can now be supported adequately with proper diet. Fragile x was found to be a problem with proteins as well…..maybe soon they too will have better intellectual capacity with this knowledge.

Cheers to research and finding answers for our angels to be healthy, happy and as BRIGHT as can BE! May all these clues that us as mom’s find be the beginning of new found answers!

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