RE: Parents with Children of special/high needs children support thread
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RE: Parents with Children of special/high needs childre... - 10/1/2008 2:23:27 PM
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ladyingrace1979
Posts: 356
Joined: 3/14/2008
From: Fresno CA
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Tamera, I will be praying for Luke.
Donna, we also called our dd's a turtle shell. I just praise God she doesn't have to wear it anymore. I know it was God's hand. Doctor's said she would be in it until about 16 or so. Shows how much they know!
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/1/2008 3:21:01 PM
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myka
Posts: 797
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Tamara, I'm praying for you and Luke, too.
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RE: Parents with Children of special/high needs childre... - 10/2/2008 6:22:34 PM
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flyboy2610
Posts: 92
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Our 11-1/2 year old daughter has Aspergers. We love her to the max, but she can be very wearing to live with. She tends to the end of the spectrum that is populated with kids who just can't seem to outgrow early childhood behaviors.
We are constantly having to tell her "Use your sixth grader voice." She has this little hop/run thing she does all the time where she holds her hands in front of chest like a bunny rabbit.
She has an IQ in the mid 120's, and excels in math and science. She learned to play the violin in 4th grade, and did very well at it. She can explain electrical theory, and she knew the difference between convex and concave when she was three. She was speaking in full sentences, using proper grammar, by her first birthday.
Some days it's like living with a very intelligent two year old.
She is currently on Strattera, and an anti-depressant. She is in the process of getting on disability, which will automatically enroll her in the Nebraska kids Medicare system, so she can get some group therapy we simply can't afford and our (joke of) insurance won't cover. She is also in the early stages of puberty, so those hormonal disturbances are also in play at this stage.
Our nine year old son had a homework assignment where he was supposed to answer questions about himself. One of them was "What is your biggest pet peeve?" He wrote his sisters name! 
The bright spot is that most Aspy kids eventually learn to manage their behaviors, and go on to lead productive independent lives.
Until then, it can be a bumpy ride!
_____________________________
If the women don't find you handsome, they should at least find you handy.
Red Green
If you're going to live like there's no hell..... you'd better be right.
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RE: Parents with Children of special/high needs childre... - 10/3/2008 6:33:53 AM
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iampiper13
Posts: 57
Joined: 5/31/2008
From: Maryland
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Tamera, any updates?
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/3/2008 3:46:50 PM
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Mrs.Wifey
Posts: 5093
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From: The Gorgeous plains of Colorado
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Tamara, they have an antibiotic injection they could give him. Maybe that would be better?
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RE: Parents with Children of special/high needs childre... - 10/3/2008 3:50:00 PM
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Auben
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From: Where pines tower and cranberries float
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I don't see that listed on his product sheet, Ryanne. I just talked to the pharmacist on the phone and she said because the dosage is high this is his best chance right now (anything else would have too much carb filler). She also had a couple of practical suggestions to cover taste and texture that we will try out.
If he still can't keep it down by Monday I may ask her if an injection is possible. Thanks for the info.
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Parents with Children of special/high needs childre... - 10/3/2008 3:53:08 PM
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Mrs.Wifey
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On a product sheet of things Luke can have? Or that the pharmacist has?
I'll be praying for him, abx are icky no matter how you disguise them/
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RE: Parents with Children of special/high needs childre... - 10/3/2008 4:12:53 PM
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Auben
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From: Where pines tower and cranberries float
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I have 2 big packets of information. One of them is on products that he can use (that includes toothpaste, sunscreen and other topical products). The other is even longer and includes carbohydrate contents for common drugs. I have to stay under .1 grams so most suspensions, liquids, or syrups are out of the question (they use carbohydrates as fillers or sweeteners to increase the palatability).
When I have questions I can email or call the pharmacist. She's amazingly knowledgable and organized. Drug companies do not have to list small amounts of filler (most fillers being carbohydrate) so often she has to call them and request their specific information for medical reasons. Most drug companies will share that in those situations.
At the end of the month he's going to the dentist for the first time. You wouldn't believe the headache it is to figure out what we can use and what we can't. That reminds me, I need to bother the pharmacist again about the flouride treatment (the hygenist and I went over the listed ingredients and it looks good but the pharmacist will have to call to be sure). We'll probably have to bring our own toothpaste for the cleaning.
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Parents with Children of special/high needs childre... - 10/3/2008 11:59:46 PM
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nicole6598
Posts: 4102
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Tamara hugs and prayers for you!!!
Flyboy welcome to the thread I hope that you can find the support and encouragment you need 
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Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 10/4/2008 12:08:55 AM
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uponeagleswings
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From: Out here in the desert
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((Tamara))- I hope you get something worked out! The ketogenic diet is so tricky- you're doing a great job. I don't know if its an option for antibiotics, and it may be a LAST resort, but you can get many medications formulated as a suppository. Usually they're more petroleum based than sugar/carbohydrate based, so it may be possible as a last resort. I'm sure your pharmacist would know if it would be an option for your little guy.
I'll be praying for you guys.
_____________________________
Stacy The Story "A violet is not an impaired daisy."
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RE: Parents with Children of special/high needs childre... - 10/4/2008 12:28:32 AM
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myka
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quote:
I have 2 big packets of information. One of them is on products that he can use (that includes toothpaste, sunscreen and other topical products). The other is even longer and includes carbohydrate contents for common drugs. I have to stay under .1 grams so most suspensions, liquids, or syrups are out of the question (they use carbohydrates as fillers or sweeteners to increase the palatability).
When I have questions I can email or call the pharmacist. She's amazingly knowledgable and organized. Drug companies do not have to list small amounts of filler (most fillers being carbohydrate) so often she has to call them and request their specific information for medical reasons. Most drug companies will share that in those situations.
I wouldn't think that the injections would have the carb filler/sweeteners because there wouldn't be the need for those.
I remember when I realized that certain benadryl meds have soy protein... I didn't think to check for it before taking the med.
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RE: Parents with Children of special/high needs childre... - 10/4/2008 7:11:03 PM
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Homegrownkids
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BlessedMama and flyboy... how did you know your child has this? My dd, age 6, sounds similar. She was trying a very low dosage of ritilin, but she acts weird on it, so she has a doc. appt. this coming week. I want to see if I can put her on Concertta. My dd catches onto school work pretty good, but she acts younger than most kids her age. She has a lot of energy and impulsive behavior. She is 6, but she gets along the best with a 3 yr old that lives down the road. Her sister was sort of like this also, she is 13 now and we can deal with her and live with her medication free. She has her moments, but for the most part I think she grew out of whatever it was she had. But, our 6 yr old needs something because it really affects how people treat her and get along with her.
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God heals!
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RE: Parents with Children of special/high needs childre... - 10/4/2008 7:25:03 PM
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nicole6598
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Tamara I am glad that he seems a little happier. I will keep praying for him and you!
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Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 10/4/2008 8:10:38 PM
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iampiper13
Posts: 57
Joined: 5/31/2008
From: Maryland
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quote:
ORIGINAL: nicole6598
Tamara I am glad that he seems a little happier. I will keep praying for him and you!
Yeah what she said!
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/4/2008 8:12:32 PM
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iampiper13
Posts: 57
Joined: 5/31/2008
From: Maryland
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fyi: On the Sunday Oct.5 episode of Extreme Home Makeover they will be doing a home of an SMA family!
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/5/2008 3:03:37 PM
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flyboy2610
Posts: 92
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My wife did a lot of research, and she began to suspect that Asperger's was our daughters problem. She took her to some specialists that did various tests, and confirmed it.
My wife has spent her working life dealing with adults and children with special needs, so she was already pretty up on such things even before I met her.
_____________________________
If the women don't find you handsome, they should at least find you handy.
Red Green
If you're going to live like there's no hell..... you'd better be right.
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RE: Parents with Children of special/high needs childre... - 10/5/2008 5:45:25 PM
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ladyingrace1979
Posts: 356
Joined: 3/14/2008
From: Fresno CA
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Just a quick prayer request. On Wednesday I have an appointment with a psychologist to talk about one of my twins. She isn't talking in class and not participating as much as she should and it's affecting her work. Pray that I can explain the situation and we can get some help.
Thank you,
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/5/2008 7:49:11 PM
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iampiper13
Posts: 57
Joined: 5/31/2008
From: Maryland
Status: online
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I also have a Prayer request, Callie has caught her first cold of the season and we've bumped her treatments to every 4 hours. She'll see the doctor tomorrow.
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 10/5/2008 7:50:57 PM
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nicole6598
Posts: 4102
Joined: 11/3/2006
From: Australia
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Praying for both those situations!
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Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 10/5/2008 9:30:38 PM
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ladyingrace1979
Posts: 356
Joined: 3/14/2008
From: Fresno CA
Status: online
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Dear Lord,
Please bless Callie and heal her from this cold. Give her comfort and ease in breathing. Give strength to her dad and wisdom to her doctors. We pray that this cold season would be mild for her and for all our kids that struggle with respiratory issues. Thank you for holding our little ones close and us too.
In Jesus name,
Amen
I will be praying for you both,
In His Grace
Kim Q
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RE: Parents with Children of special/high needs childre... - 10/6/2008 9:44:40 AM
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Auben
Posts: 1611
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From: Where pines tower and cranberries float
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Praying for Callie.
_____________________________
Tamara
~Everywhere is walking distance if you have the time~
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Between me, Luke, and the cold virus we've made the house rather unlivable. 
my soldier! 
and other than the no eating/drinking he's in a good mood for a change.
