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Post by dizy on Mar 27, 2009 8:56:27 GMT -5
hi there!! mom to Evan 4 1/2--I was wondering if anyone has gone to a geneticist for screenings? In october I had a miscarriage at 9 weeks of pregnancy. Due to our history, my ob/gyn ordered some genetic testing done on the baby. Well, got the results yesterday and it was a male baby with down syndrome. When we had Evan, we were told we had a 1% chance of having another baby with down syndrome---when we got that information we were baffled of course--but wondered if the dr meant 100%--I know this is not the case--but we are in the process of getting in to see a local geneticist--Evan has trisomy 21--so we thought it was a fluke-y type of thing--but to have another baby with dS was just surprising--it wont ever make a difference if we do--but I had to ask around to see if anyone else had ever experience anything of the sort. I know most of this thread has been about behavioral disorders, and it is great that everyone is sharing what works for them. It is good to have supportive docs, and it sounds like a lot of trial and error. It sounds like you all make great choices for your children and go through a lot to make sure things are the best they can be. To Evan's mom wondering about genetic screening. I am certainly no expert, but the 1% number probably refers to live births. I can't remember the number, but I read that a significant number of miscarriages are in cases where there is a genetic disorder. So, I think if miscarriages were included, the percentage would be higher. I don't mean to be morbid or anything, just trying to try explaining statistics.
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Post by wrblack on Mar 27, 2009 13:51:36 GMT -5
OK, to take this thread further off topic. Even though it's getting a bit dated, and I think has some slight flaws, best basic intro to recurrence is still the Benke essay on Dr. Leshin's site www.ds-health.com/benke.htmThere are various ways of stating what is essentially a statistical observation. I rather like the one that says that already having had a baby with T21 increases the odds of having a baby with T21 by 1 per cent. So, the "risk" of having a second child with Ds is whatever mom's risk is for her age plus .01. So, if mom is 30, then risk for 30 yo is about 0.1%, or 1/1000. But plus .01 would be 1.1%, just above 1/100. But if mom is 40, risk for that age is 1/100, so 1% plus 1% equal 2%, in Vegas I think they say double down. But another way of looking at it was posted by a friend to the List just a few days ago, <<When I mention to people that there are usually no children with DS available for adoption in the US at any given time, they often ask why. I explain to them that they are usually scooped up by families that already have a child with DS, because once you realize what great kids they are you want more. Even though you have a higher chance genetically speaking of giving birth to another child with DS, the percentage is not high enough to guarantee it. That usually causes people to walk away, scratching their heads.>> -- Bob
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Post by Gina on May 7, 2009 14:53:53 GMT -5
Earlier in this thread, someone discussed that their child had taken Risperdal. Ashton started taking Risperidone about 2 1/2 months ago, which I believe is the generic for Risperdal. It has been fantastic for her behaviors, atttention, and sleeping. But she has gained weight, and I don't know when it will stop. Has anyone had their child on the medicine long term? And if they had a weight issue, did they stop gaining weight? Or did they continue to gain? I don't mind some weight gain because of all of the benefits, but a lot is not good. Has anyone tried a different medication that does the same thing without the weight problem?
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Post by sueb on Jun 15, 2009 14:57:38 GMT -5
Hi Gina: This is a very late reply to your question re Risperdal and weight gain, sorry, I've been "off the board" for a while. My 21-year old daughter, Milly, has taken this med since she was 7 yrs old, went up to 1.25 mg per day. The weight gain has been slow, but by 2007, it was making me very uncomfortable. In December 2008, we started reducing it, a hellish few months, won't go into details, but - she's down to 0.75mg, and looks totally different - she has shrunk! There are lots of different meds to try out there, some don't cause weight gain, it's very complicated, I had lots of reading to do, plus had some horrible experiences with behaviour - I would just keep an eye on the weight gain, and if it continues, perhaps look at reducing dose, or trying something different. I wouldn't do anything, though, without the support of a good psychiatrist/doctor and if possible, a behaviour specialist. It's tough.
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Post by rickismom on Aug 18, 2009 14:16:52 GMT -5
I have been off the board for a while (busy more with my blog). Ricki, my 14 year old daughter with DS, also has ADHD. How we diagnosed it can be read in an article I did for Down's Ed 3 years ago,, at: www.down-syndrome.org/practice/363/?page=1 ) It is VERY important to note that Concerta or any other medication will NOT help your child behave better. It will only get them to the point that normal behavior modification methods will help. We used to have MANY problems with Ricki,; the last half year has been pretty good. And that is only because UI have worked and worked with her on behavior.
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Post by calamityjane on Sept 16, 2009 15:07:16 GMT -5
Hello! My daughter's name is Kelsey, she's 11 now and in 6th grade. I don't log in here very often and have only posted maybe once, but I am SOOOO glad I checked in to this thread today! I just got off the phone making an appointment with Kelsey's ped because we have finally hit the wall on trying to cope with her behaviors. I hate the idea of 'drugging the spirit' out of her but her behavior is crushing the spirit out of the whole family ( and school staff ). I finally feel like we need to explore the medication alternatives. I have alot of reading and research yet to do I know. From reading this thread I have heard the name of Risperdal quite often linked with weight gain. My question is this..... Is it possible to avoid the gains through diet and exercise? How active are your kids and what are their diets like? A lot of the posts are from 2007.... How are your kiddos doing now?
I can't begin to tell ya'll how much of a relief it is to log in here and see our story repeated over and over from many mouths!
Thank you....!
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Post by michellew on Oct 23, 2009 16:52:16 GMT -5
to jenswan - don't know if you've already found the answer but melatonin is supposed to be good and very safe for helping kids sleep.
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Post by Kaylis on Feb 25, 2010 6:04:02 GMT -5
I can't speak for ADHD and Ds together, but my older son has ADHD. He's on Concerta after trying Strattera for several months. The Strattera is not related to Ritalin, but is an antidepressant that helps with ADHD often. It helped him be less impulsive, but not sufficiently. The Concerta has done nothing to his enthusiasm or personality, but it does take the edge off the impulsivity which he needs.
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Post by samanthajosmom_12 on Dec 12, 2010 21:21:58 GMT -5
my daughter i took to our ped ofice and we got papers to be tested for attdefict with hypertension- i go some time next week to go over the results of the testing- samanth a has turned into alittle monster at times. will not behave alot. she will gewt in trouble then tell me i love you mommy. my little boooger. i just want her to be a sweet little girl. we get notes from school- would not keep her hands to her self- and now we found out what that means- she has been hitting at school- i am trying to punish her bad behaviors with no tv - no elctronic games for one day but its not working. sue
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Post by Claire on Jan 17, 2011 11:52:11 GMT -5
Did you mean Respiradone or is it Risperdal? Adam is on Respiradone.
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Post by ALLISA on Feb 26, 2011 9:35:19 GMT -5
Just throwing in my 2 cents on Risperdal......my daughter (dual dx of DS & autism) has been on it for almost 4 years.....it was a miracle for us.....she had severe self-injurous behaviors, head banging, scratching, it was horrific to watch and we were helpless to stop her. It worked from day 1 and continues to be fine. She was teeny tiny when we started it, so we weren't worried about the possibility of weight gain....she has gained some....but....was needed and she is still underweight by standards. Good luck....I know how frustrating, discouraging, and saddening it is to watch our kids suffer like this !
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Post by ALLISA on Feb 26, 2011 9:38:31 GMT -5
and yes to answer some of the posts....Risperidone is the generic of Risperdal Erin has taken both ( depending on which the insurance ok'd and has been fine with both)
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Post by rickismom on May 26, 2011 17:26:47 GMT -5
Update: It has been about two years since i posted above. In the interum, Ricki, now DEFINATELY a teen, was getting highly aggressive, and even good, well-done positve behavior support plans were not working. We finally started Respirdal, and it has helped emensely. As for weight gain, maybe she is hungrier, but she also is calm enough to HEAR what I am telling her about weight gain, and for once is TRYING not to overdo....
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Post by Renee' on Jun 27, 2011 10:19:13 GMT -5
I am going to chime in too. Lauren is 12 and is having major issues now. We have tried several medications but all the stimulants have side effects and the major one is she chews her fingers so bad they bleed all over the place. We can't use them anymore. We are now trying Intuniv. It isn't a stimulant. We have only been on it 2 weeks now.
She has been off stimulants now and her weight gain has been out of control. She has heart issues so this is really bothering me. I can't get her to do much because her feet hurt her too. She has gained 16 pounds in a year being off stimulants.
I may ask about the Respirdal...
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