Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 dee, welcome to our list.. everything you said makes perfectly good sense to me. the ears, the asthma, the upper respiratory, the vocal noises, the 8 years of sleepless nights... i can't identify with the biting or chewing, but ashton does other weird things.......the noises are the worst for me. :-( nothing like hearing a cat mad at the world hollering at 2am. lmao doesnt make for a happy mommy!!! but like you said we love them dearly and endure much much much for them.... the medication roller coaster is a nightmare too. we have been there as much as other families on the list. but i am sure they will speak up. SPEAK UP!@!!!!:-) welcome to your list and please share australia with us, what kind of community supports do they have?????? take care and welcome, leah in virginia, mom to ashton ds-pdd and cameron all boy >From: ammaden2000@... >Reply- > >Subject: new >Date: Wed, 20 Jun 2001 10:02:54 -0000 > >Hi, my name is Dee, new to this group and this is my first post. For >a long while, I've felt I was going insane. I've read and heard >about children who have D.S & A.S.D, but have not been able to make >contact until now. I've been trying to read the messages, but there >are so many. Now I definitely know I'm not going insane and am very >glad to have found this group. I live in New South Wales, Australia. > >I have two beautiful children both with D.S. >My son Jordyn is 7.11 years and my daughter Jessika is 4.8 years. >Jordyn attends mainstream school and Jess starts next year. >Jordyn has the dual disability of D.S and A.S.D. >I suspected for quite some time that it was more than D.S, but >everyone was saying 'NO' until late last year. >He also has a conductive hearing loss and continuing ear problems, two >bowel diseases (requires daily bowel wash outs) needless to say >Jordyn has loads of sickness, been through many operations, tests, >hospital and doctor visits , sleep apnea which is another story, mild >asthma which is worse in winter due to U.R.I, bladder incontinence, >delayed speech, behavioural problems with aggression, obsessive >complusive disorder, wears orthotics and is going to have many >problems with his teeth. Thank the Lord, no heart problems!!! > >It was thought years back that Jordyn had add/hd and was trialled on >Dex and Ritalin - with no luck. > >Things were getting worse, so Tegretol was introduced and this made >life easier for some time, but then behaviour/aggression was getting >bad again, so med was increased. He had to have blood tests every 3 >months and that was traumatic. Finally, the med was increased as far >as it could be and he was sleepy all the time, so our paed dedided it >was time for us to visit another paed who specialises in child >development etc. > >It was soon discovered that Jordyn did have A.S.D. All though I >suspected, it hit like a tonne of bricks. I felt like I was in a >daze for weeks, but reality has a way of slapping us in the face. > >At times, it just seems there are too too many issues to deal with, >especially when there are other huge medical problems as well. > >Behaviour at school had worsened, so the paed decided to try a new >med. I've agonized so much over meds, that I think I've probably >made myself feel sick. > >Anafranil was introduced. He started loosing buckets of >perspiration, wasn't drinking as much and wouldn't sleep at night. >Because of his Hirschsprung's and N.I D (bowel diseases), loosing so >much fluid was not good. So he had to be taken off that. > >Prozac was next and what he's still on. Once the med had kicked in, >we seen a difference, but then aggressive behaviour started up again, >so the paed increased the dosage. This has done no good at all. If >anything, he's definitely more hyperactive, unfocused, aggressive, >his fingers and toes are bleeding from chewing the nails right down, >tantrums are worse, going to off to sleep is more difficult & he >wouldn't sleep more than a few hours if he wasn't medicated with >double strength vallergan, more vocal (noises), destructive and so on. >Just this morning, I started the reduction of the prozac. I want him >on one tablet a day until we see the new doctor. >The paed is going away for 6 weeks and didn't want to do anything >until she come back. I made some noise, so now she's handing us over >to two other doctors until she comes back. They are wanting to start >him on Risperdal. Jordyn is due for more bowel surgery next week, so >I'm not sure when we'll get to see the new doctor. > >I love my kids beyond any words, but these things are hard to deal >with and it's difficult for others to understand. I'm so glad I've >found this group as you will know what I'm talking about. I wouldn't >be without my two gorgeous children. It's been an incredible journey, >one of joy, stress, sorrow, pain, tears, laughter, learning strength >and courage from the mountain of challenges, sleeplessness, >experiencing a love I'd never of known about had it not been for my >little ones. >Yes, life with my two children has been a huge learning >curve, for the better of course. >Both of my little treasures are adopted. > >Sorry this is so long. >Dee mother to Jordyn 7.11yrs, Jessika 4.8yrs & Mel 22.11yrs > > > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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