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Post by PaigesMom on Mar 6, 2005 12:21:27 GMT -5
Not a problem, I'll make a list, or just print this thread out.
Susan - I am so glad to know that George Capone is really good. I have heard that, and he is one of the main reasons I decided to go to the confrence as Paige is diagnosed ADHD Impulsive - actually by Mary Pipan, one of the other speakers there.
Ask away, whatever you want.
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Post by PaigesMom on Mar 5, 2005 10:19:18 GMT -5
I am attending a Trisomy 21 Workshop at the Childrens Hospital of Philadelphia on March 12th. There are alot of breakout sessions to choose from - I chose the following:
1. ADHD and Down Syndrome - led by George Capone , Director, Down Syndrome Program, Division of Neurology and Developmental Medicine at Kennedy Krieger and Professor of Pediatrics at John Hopkins.
2. Changing Difficult Behavior: Positive Behavioral Support - led by Mary Pipan, MD, Attending Physician, Division of Child Development and Rehabilitation, Childrens Hospital of Philadelphia.
3. Questions and Answers - Led by a parent advocate of an older child with Ds and an Invited speaker.
I know there are alot of behavioral issues/questions with our kids. If anyone has any specific question you want answered or brought up, let me know and I will be sure to ask it. I'm sure if you are thinking it, then someone else is too!!
Debbie
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Post by PaigesMom on Mar 6, 2005 12:19:18 GMT -5
CC - I swear it's true. Somedays, she's just acting so out of sorts that I say, "ok, it's time for some Tylenol" - and I give it to her.
I know there are probably alot of people out there saying, OMG she medicates her child for behavior issues, (lol), what bad parenting (lol).......
And maybe it is, but dang nabit, I swear it works, and I AM going to ask that question at the seminar ---well maybe in a little white liesh sort of way, I wouldn't want child welfare meeting me at the door, lol ---- and see what those specialists have to say.
Generic works just as well!!!
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Post by PaigesMom on Mar 5, 2005 9:50:12 GMT -5
CC -
I can offer no real answer, but I will say this. Although Paige and Christopher are pretty far apart in age, some of what you describe about speech is the same.
Paige actually talks very well, and I am thankful for that, but by no means can she say everything that is wrong with he or everything that is on her mind. She acts out severely with behaviors.
Actually the thing that gets me is probably what is getting you - Why does she seem to do so well on some days and on others she seems like she's never reached a certain point - for example, speech. She can and will talk fairly clearly 6-8 word sentences. Most people can understand her - but on other days, she is so unarticulate, she can not ennunciate sounds she did the day before, she grunts and points, throws things, has tantrums, wont eat, etc.
I ALSO GIVE HER TYLENOL - lol - WHY, I have NO CLUE. I give her a teaspoon of childrens liquid and it actually seems to help. I have also talked to my pediatrician about it - he doesn't think that she is in 'real pain', but he thinks that for some reason, Tylenol acts like a calming agent for her. He said it is sort of the same thing - some people say Motrin or Ibuprophen makes them sleepy - there is no scientific proof of this, and in fact it is a side effect that is NOT supposed to happen, but people swear it does.
Thats about all I can say, other than, I have experienced similar.
Debbie
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Post by PaigesMom on Mar 5, 2005 10:08:49 GMT -5
The problem with wheezing is that the dr. can only hear it if it's happening at that moment. It really can be a pain in the butt.
I would also suggest a pulmenologist for an evaluation. I mean they can do things like a pulse ox to see how much oxygen he is breathing, that can tell if he's wheezing, they can do chest xrays to see if he has a pneumonia or to see if he has encapsulation.
I'm wondering if they gave you the Albuterol and Flovent for a nebulizer rather than an optichamber or straight inhalers. The other thing is Orapred, which is an oral steroid, if he is truly wheezing or is having lung inflammation due to a chronic cold or reflux then it will help heal it.
Pagie aspirated formula when she was an infant. It is a very serious thing because it can cause serious pneumonia. They also did a swallow study on her which was negative at the time, because she just didn't do it at that particular time - that is what is so hard to figure out.
I know you mentioned that he had a nissen fundoplycation - is it reversed now? Is he tube fed? If he is drinking a bottle, are you sure it was an acutal nissen? If it was, he should not be refluxing, you are right, but if it was a partial nissen and he is still drinking a bottle he still could be.
I think I would start with the breathing treatments and see if they help, if not, then I would go to the xrays of sinuses and lungs, if they are clear, I would evaluate for the reflux again.
Good luck - I hope this helps some. Let us know how you make out.
Debbie
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Post by PaigesMom on Mar 4, 2005 20:22:12 GMT -5
Two thoughts come to mind from me:
Does he EVER cough, even just once or twice after he runs, jumps, plays, etc? If so, then he could very well have asthma. In my experience with Paige, who also has reactive airway disease (childhood asthma), most of the time I dont even know it when she is wheezing, and when I think she's not, sometimes she is. The sound of wheezing and also just bronchial secretions moving around while breathing can be very similar.
The other thing is you mentioned reflux. Reflux can and definately will cause in some cases depending on the severity, sinus congestion. This has happened to both of my kids.
Because of the fact that it seems to 'go away' at times, makes me wonder about a chronic reflux or asthma problem. Has he had a CAT scan of his sinus cavity?
Hope this helps.
Debbie
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Post by PaigesMom on Mar 5, 2005 9:59:30 GMT -5
Actually, it's not really that hard of a job, IF you have the patience to deal with kids.
I will be the first one to say there are people driving buses that should not be. Some drivers do NOTHING and their buses are chaotic, some are MILITANT and their buses run like boot camp, not allowing kids to be kids. I think there has to be a happy medium.
MOST kids are really good on the bus. There are always a few who will test and try patience for the driver and bully the other kids. They are also the kids that no one likes in school and the ones that the other kids dont want to be around.
In my district - and our bus company is the largest in the state - IF THE DRIVER DOESN'T SEE IT OR HEAR IT PERSONALLY, it doesn't hold water. In fact, I can not even report a kid that I KNOW did something he shouldn't have because I didnt' see it. An example is last Halloween a smart alleck threw a PUMPKIN out of the bus window and it landed on a lady's winshield and broke it. I SAW this kid bring a pumpkin on the bus, I SAW the pumpkin go out of the window thru my mirrors, but I DID NOT see him actually do it. The other kids would not tell who did it. The bus company had to pay for the lady's window, the kid still rode the bus.
So I am clearly saying that what they did to Cody was WRONG and should never have happened.
Debbie
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Post by PaigesMom on Mar 4, 2005 20:16:08 GMT -5
Oh boy ladies, I'm sorry to hear this. I have to chime in, being a school bus driver myself!! In PA, it is a priviledge to ride a school bus, NOT a right, period. However that being said, MOST school districts and transportation companies are very lenient about kids behavior, and the bus driver usually gets all of the flack from both sides. We have the right to assign a seat, but that's about all and we have to be very careful about what we say and how we say it to both kids and parents that we see everyday. What they did was absolutely ridiculous. A warning, an assigned seat for a week, something like that, but kicking him off, not a good idea. Good luck!!
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Post by PaigesMom on Mar 1, 2005 10:20:26 GMT -5
I cant even imagine - especially during that snowstorm. Although it was supposed to end around midnight, it sure seems it lasted longer - we got about 9.5" here CC, near King of Prussia, PA - how much did you end up getting?
I am so glad he is better.
Debbie
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Post by PaigesMom on Mar 1, 2005 10:03:02 GMT -5
A. -
I too read every word and feel heartbroken for you and Russell. You are right in everything you said, an IEP is only as good as the team implementing it AND our kids need to be looked at as a 'whole person', every one of them is different, not just a kid with DS that they are teaching.
I know from personal experience how attached you and your child can get to a certain teacher - Paige, although much different than Russell, also has other issues, some medical, some behaviorial (ADHD Impulsive) and it means so much to know that a teacher sees the whole picture of the child - that definately helps the learning process for the child and also puts the parents at 'some' sort of ease even about their child in school away from them. I opted to keep Paige in her last year of EI preschool rather than transition her to Kindy - one of the biggest reasons being her teacher, and the thought of losing her and having to start over again......
I wish you the best of luck, you know what he needs and YOU WILL find him the right placement, yet again.
Debbie
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Post by PaigesMom on Feb 27, 2005 9:42:37 GMT -5
That is really sweet. I hope my daughter and her dad have that 'father daughter relationship' as she gets older. Right now, she's the total love of his life and no one better say anything about her or do anything to her!! True love.
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Post by PaigesMom on Feb 27, 2005 9:45:50 GMT -5
I couldn't nurse Paige as she had no suck reflex and we really had to work even to get her to take anything from a bottle - and even then trying to find the 'right' nipple for her to grasp was challenging. Our OT was also a feeding specialist - she gave lots of great ideas on how to build her mouth muscles and get a better suck - alot of it was positioning her head, holding the bottle a certain way and also pushing up and in on both of her cheeks while she was feeding. It was sort of a juggling act - but eventually she got the hang of it.
Good luck.
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Post by PaigesMom on Feb 27, 2005 9:38:42 GMT -5
Paige has had 4 sets of ear tubes beginning at 15 months - she's 4. I have been told that it is unusual for them to fall out so quickly - that the average stay is between 12-18 months for a set of tubes. They mentioned to me that she has 'tissue' that grows behind the tube and actually pushes it out - I'm not sure if that is the same as granulation tissue.
We have had bloody discharge and have also been on Floxin drops - but this was also more like a mixed bloody discharge due to an infection.
Let us know if you find out anything. I will ask my ENT if it is the same thing, Paige goes back next week.
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Post by PaigesMom on Feb 27, 2005 9:40:43 GMT -5
Paige does the same thing. Everywhere we go. She calls other men daddy, other older women nana and other older men grandpa. I just say, 'no that's not grandpa/grandma/daddy - he/she is home/at work, etc.' and she seems to stop. I do get strange looks though.
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Post by PaigesMom on Mar 4, 2005 19:43:09 GMT -5
Thanks guys, I really appreciate all of the help I've received here, I've even received some PM's as well.
You are all just confirming some of my own thoughts on the use of the laxatives and the enemas, although ALL of the dr.'s say that it is baloney, and that everything she has been on is non addictive. The dr. wont do the colon manometry as he says it wont tell him anything he doesn't already know, but here we are again - she had the rectal manometry and was cleaned out for that, last time last Wednesday, and here we are Friday at 8pm EST, and she has not, and has not even acted like she wants or has to poop. Sooo, tomorrow is the 10th day and I start with the enemas again, and I KNOW there is poop in there, not to be gross, but more poop than should be allowed to be in a little kid. It's terrible.
I wonder if some herbal laxatives would be better? Or maybe something like Benefiber or Citrucel, although the dr. says it would be a waste of my time and money. He is still saying it is cognitive and she 'doesn't understand' what it means to poop. I told him that I might agree that she cant control the muscles in a certain way or that she has trouble realizing which muscles to use, etc. ---- but he said NO, and implied it was MR.
Who knows.
Again, thanks for your help.
Debbie
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