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#61 of 81 Old 01-14-2003, 05:14 PM - Thread Starter
 
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I'm glad the subject of medication came up here- it's one that is difficult for all of us. Many times I feel that parents of "perfect children" judge us when they hear that we have chosen to use medication for out children. ("They just need to parent more effectively, change the child's diet, or be more patient") I was very opposed to medication for my son when he was initially diagnosed. After several years, I realized that there was something going on in his brain that could be helped by some medications, and that it would allow him to lead a more fulfilling life. If he were diabetic, I would not think twice about allowing him to have insulin. But because the problems are in his mind, we scrutinze our decisions. We recently had to switch medications, and I am coming to terms with the fact that he will probably need medication to help maintain a sense of normalcy throughout his life. And that's ok, it's wonderful that the medicationis available. It allows him to live a full life instead of being locked away from society in a home.
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#62 of 81 Old 01-15-2003, 01:12 PM
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krisday-that's EXACTLY how I describe it to others, like diabetes. shematrix-Emmet is definately a danger to others-he actually choked a classmate a few months ago-at age FOUR!!!!! Abe had the signs of PTSD at age 2 because of their behavior. I'm hoping that meds will work for a couple of years til we (the parents) find alternatives-but we just couldn't wait any longer. They actually have HAPPY times now!

What meds are you guys using (if you don't mind my asking....)

We use resperial for Emmet, seroquel for Gus and they both get Clonidine at bedtime. I really hate the Clonidine, but it's a neccessary evil right now....
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#63 of 81 Old 01-16-2003, 01:47 AM
 
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Concerta, Resperdal, and Clondine.

The Clondine is for at night. Without it, she is up ALL night, crying that her brain won't let her go to sleep I ask her dr. about taking Melatonin(sp) at night instead of the Clondine. He said sure! but when I ask him what dose, he had no clue All he could say is it wouldn't hurt to try. I did some research but couldn't find anything that reassured me on the safety issue for young kids or a starting dose. Of course, with Clondine you can't stop it abruptly. To dangerous. She hasn't had any side effects from it. She has been on a low dose of it for a while. It's funny I worry about the Melatonin, considering what she is on now. Just without some guidance on taking it makes me leery. (sigh)

Concerta is for the ADHD. OMG! WHat a difference this med has made. We tried Adderall and Adderal Extended tab and that was a freaking nightmare. Every side effect a child could have she had. She also started displaying awful motor and vocal tics while on it. DId the med cause it? No, but since she was predispositoned to them it did aggravate them. I was praying that once off that med they would improve. They did to an extent, but did not go away completely... wich leads me to the..

Resperdal. Without it, she is into full blown vocal and motor tics. I tried weaning her off it, but within two days she was clearing her throat so hard and often she was bleeding. She was jerking her head so hard it hurt her neck. Also head banging out of the sheer frustration.

I hate that my daughter has to take these meds. But, I'm exteremly grateful that they do exists.With them she can lead a more normal less painfull life.

It breaks my heart when uneducated people think that parents of children on meds do it just to medicate their children into submission and make zombies out of them. Nothing could be farther from the truth. I have heard a range of opinions on to why my daughter is like she is. Oh, it's something the medical doctors came up with just to make money, she needs more discipline, she needs less discipline, I need to be a better parent..... ETC ad nauseum.

It was a long, hard, painful journey to get where we are today. We tried the no med route and it got us no where. Now with a combination of meds, behavior theraphy, good diet, counseling, and support structre in place she has improved one hundred percent. Medication alone didn't work or any of the other things tried on their own. But the combination of all that has worked wonders. I am extremely proud of my daughter. She has worked so hard this past year. She is in a classroom with her peers now and is loving every minute of it.

Sorry so long.
Brenda
nak
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#64 of 81 Old 01-22-2003, 04:32 PM
 
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Hi everyone,

I stumbled onto this thread when I did a search for dyspraxia. My 2 1/2 yo son has recently been dxed with severe verbal dyspraxia and mild sensory issues. I am trying to find others in my shoes and get some answers. Owen is also very bright and loving, so I feel extra bad for him at times, as I know when acts out, it is usually due to frustration at not being able to express his wants effectively. I am trying to be very patient with him, b/c I know he tries really hard to communicate. I am just glad that we finally know what it is we are struggling with. We have been told for awhile now that Owen was speech delayed b/c he has an overabundance of earwax! This just never seemed right to me, so I kept digging....

Anyway, glad to see we are not alone in this jungle! Here's a hug to all of us trying to creatively parent kids with different needs.
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#65 of 81 Old 01-22-2003, 04:44 PM
 
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Hi kittyb4me. I'm not familiar with dyspraxia. Would you explain what it is please? Is it a specific type of speech delay? I am glad you have found answers finally. Good for you for continuing to research until you came up with answers you were satisfied with. We are our children's biggest advocates!

Brenda
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#66 of 81 Old 01-22-2003, 04:52 PM
 
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Well, I decided to go ahead and try a small dose of Melantonin. I started halfing her Clondine on the 19th and giving her 300 mcg of the Mel. YAY!!!! It is working!!!! I'm going to continue with this for a while and then cut the half in half and see how that goes.

I would love to be able to wean her off the Clondine.

Wish us luck,

Brenda
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#67 of 81 Old 01-22-2003, 04:53 PM
 
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Verbal dyspraxia is a neurological motor planning disorder. That means that you know what you want to say, but you cannot coordiante your muscles to make the proper movements to form sounds. Owen understands everything you say to him (at least at his age level), but cannot get his thoughts back out. This can also tie in with Autism, ADHD, etc. Owen also has some sensory issues with his mouth and face, eg, HATES having his face washed, very sensitive to towel drying his hair, still drools, very picky about food and trying new things, still chews on toys, etc. We will start some intensive speech therapy (pending approval by insurance, a different can of worms!) and we are doing some Essential Fatty Acid supplementation. I have heard some very positive input about EFA supplements, and we are hoping this will help Owen. Hope this clarifies what we are dealing with. I definately feel like the low man on the totem pole though seeing what other parents are dealing with!
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#68 of 81 Old 01-22-2003, 05:05 PM
 
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Thanks for the explanation

Shoot, we are all in this together. No one families issues are any less important or challenging than anyone eleses.

Sensory issues can really be trying. My daughter has some hearing and skin sensitivity ones.

I hope the theraphy and supplements help your little guy. I can't imagine how frustrated he must get

Oh, and I hear you about the insurance! The one good thing about my daughter being in public school is she gets to go to the school based clinic for free. We still shell out over 200 bucks a month for meds though

Hang in there!

Brenda
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#69 of 81 Old 01-24-2003, 12:24 AM
 
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My ds who is now almost four, was injuried at birth by a resident physician who delivered him. He was a large baby (over 11 pounds) and got stuck in the birth canal after his head was delivered. He was without oxygen for three minutes, but thankfully, he's okay neurologically. HOwever, when the resident hurriedly pulled him out, she tore the nerves in his neck which make his left arm/wrist/hand/fingers function and he was left with a totally immobile arm.

We were told, "it's okay, it will get better in a couple of weeks"...we waited and waited and nothing happened. After about 5 1/2 months of messing around with a doctor in our town who basically wanted to use ds as a guinea pig (he's the only child in the town of 116,000 with this injury), we emailed a surgeon we'd found out about at Toronto's Hospital for Sick Kids. Ds was diagnosed as needing surgery and two weeks later, he'd had it...all 13 hours of it at the age of six months.

He just had his last followup appointment at Sick Kids and sadly, all the function he's going to get, he's gotten. His arm will just get stronger now....it was left about a hand shorter than his other one and very weak finger function, but he can feed himself, pull up his pants after going potty and push his arm through a shirt. That's all we'd hoped for actually, as some never regain this much function.

Anyway, there's my intro....anyone else out there with a child with BPI or Erb's Palsy??

Lisa
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#70 of 81 Old 02-28-2003, 06:02 PM
 
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I thought I posted to this thread already: My oldest DD is in the process of being tested for ADHD,OCD,TS, and Asperger's Syndrome.
We have our first evaluation appointment on May 13. What should we expect-any ideas?
Ooops gotta go my DD's are fighting about something
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#71 of 81 Old 03-01-2003, 12:15 AM
 
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Hi All!

Both of my children have special needs. My 2 year old, Anna, has a severe speech delay, and I am thinking she also had PDD. My son Thomas (seven months) suffered a stroke in utero and has some minor physical problems from the damage done to his brain. He also had seizures from the stroke injury and is taking phenobarbital for that.

I am glad to be here with all of you.
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#72 of 81 Old 03-01-2003, 01:35 AM - Thread Starter
 
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I just wanted to welcome all the newbies and check in.

Mommasgirls- most of the testing that we have been through is just the doctor asking us questions. A few things for the kids to do, but not much. Bring an and all records of development, a list of concerns, family history, and anything else that may be helpful for the doctor (teachers reports, etc). Also bring something to entertain your child while you speak with the doctor so she's not bored.

Treelove asked about meds- Jack is on Tenex, which is similar to Clonodine ( blood pressure med, but does not have as much of a sedative effect) for rages. It has really helped him.

Keep on keepin on, mama's and papa's!
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#73 of 81 Old 03-01-2003, 01:49 AM
 
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I am a SAHM, homeschooling mom of two sons. Ds #1 is 11 and ds #2 is 2. My oldest son has Aspergers (we just officially found this out yesterday, although it is no suprise) and the younger one is, well, TWO! It's nice that this place is here.

Jerri
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#74 of 81 Old 03-01-2003, 02:06 AM - Thread Starter
 
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JavaJerri- I also homeschool a son with AS.
Nice to see you here!
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#75 of 81 Old 03-04-2003, 06:36 PM
 
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Hey folks, I was very happy to see this thread here. I have 3 sons. They are 6yrs, 5yrs (who says you can't get pregnant nursing) and 14 months. The oldest has diagnosed Aspergers and adhd. He is on Tenex and Concerta. I definately can understand the partent who wrote about feeling bad about giving your child medication. I am a "natural" sort and it went against my first instincts. not to mention that pre-kids I thought all those hyper kids needed was better parents and to play soccer. But now I've come around (mostly) and kind of view it like if my kid had epilepsy or diabetes or some other medical condition that required daily medicine ... would I hesitate to give it to him? Would I be judged by other people for giving it to him?
My oldest has taught me so much about patience and now even though things don't turn out like you invisioned them it can be great how it is. He has really helped me to be a better mom and a better person.
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#76 of 81 Old 03-10-2003, 02:39 AM - Thread Starter
 
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By the way folks- there is actually a Special Needs folder now- it's in the Parenting folder, so it doesn't show up unles you click on Parenting from the main page.
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#77 of 81 Old 03-10-2003, 10:29 AM
 
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Yes, the new special needs sub-forum is now open and ready for posting!!

Here is the link..

http://mothering.com/discussions/for...s=&forumid=157

Welcome All!!
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#78 of 81 Old 03-10-2003, 05:52 PM
 
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moving this thread to the new subforum..

Not all those who wander are lost 
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#79 of 81 Old 03-10-2003, 07:30 PM - Thread Starter
 
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abimommy- please leave it in finding your tribe. People may not be able to find the sub-forum unles they know it is there (I didn't know it was there, and I am here a lot), and I already started a new rold call thread there.
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#80 of 81 Old 03-20-2003, 03:54 AM
 
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urm..maybe we need a sitemap...

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#81 of 81 Old 03-30-2003, 03:14 PM
 
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hello! I have a 9 month old ds with down syndrom and a 4yo dd who has developmental delays-speech, fine and gross motor skills. she attends a montessori and a developmental preschool along with speech and ot. I struggle with the services and what will be up against when she is school age (she can attend montessori for kindergarten) i always assumed my kids would nevr do any traditional educational stuff . it is strange how folks don't want to be in "the box" when they can be but when they can't fit into"the box" they are expected to. sometimes i feel so mixed up about my own personal beliefs and what is best for my children and how much i am being brainwashed. i just trudge along and make choices everyday that i believe are the best at that time. anyway welcome to everyone and I am glad to be a part of sucha fantastic group of amazing parents!
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