RE: Parents with Children of special/high needs children support thread
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RE: Parents with Children of special/high needs childre... - 9/1/2008 8:20:08 PM
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manda59
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quote:
ORIGINAL: Homegrownkids
he will be getting his front teeth fixed due to decay:(
How old is Noah?
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RE: Parents with Children of special/high needs childre... - 9/1/2008 8:57:21 PM
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NotDoneYet
Posts: 289
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From: Virginia
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quote:
ORIGINAL: nicole6598
NDY- I have done a few elimination diets with my son. AT the moment we are not having dairy, its not as hard as what I thought. I grumbled a bit before I started because I was so overwhelmed at it all but it isn't that hard now I know what I am doing. I do miss my cheese though!  What do they or you suspect the food allergies are? What are her symptoms?
Right now, I have NO idea...she seems to have a lot of stomach aches, diarreha (however you spell it), occasional vomiting...I'm thinking she's probably got a dairy problem, but I'm also thinking maybe something else...oh well, the doc appt is on Thursday...I hope for her sake we can get it straight soon...but it'll make daycare a pain...our daycare provider also provides all their meals. I guess I'd just start packing her breakfast, lunch and snacks. Fortunately, she's been with the same daycare provider for the past 2 years, so I'm sure she'll help us.
NDY
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RE: Parents with Children of special/high needs childre... - 9/1/2008 9:03:26 PM
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nicole6598
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Homegrown-So it wasn't the breast milk was it? Is that what Sarah said?
Its pretty easy to change your diet. It may cost a little more to eat different and take a little more thought, but its doable. What have they suggested you need to try? what do you eat at the moment? I have changed my diet so many times this last year because of gestational diabetes, 3 elimination diets etc, I am nearly a pro!
NDY- Dairy is pretty easy to substitute. I have been using soy butter (margarine) and rice milk. You can get almond milk, soy milk too. And almond butter too I think! They will probably make her do the hydrogen breath test if you think its dairy. She will have to fast for 6 hours, and the test is about 2 hours long. I can't get Nath to do it yet that's why I am cutting dairy out of my diet. I am sure your daycare provider will help out! Just have to make sure you look for all the "secret" ingredients in things, milk products are in ALOT of things!!
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RE: Parents with Children of special/high needs childre... - 9/1/2008 9:03:41 PM
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Homegrownkids
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He is 18 months old, Manda.
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RE: Parents with Children of special/high needs childre... - 9/2/2008 1:41:09 PM
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reach
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Hi Nicole,
I was wondering if you had heard anything about the results on your babies tests.
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RE: Parents with Children of special/high needs childre... - 9/2/2008 6:13:09 PM
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nicole6598
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Hi reach- nope we haven't. The doc said he would call if there was a positive result. So there has been no call, I am assuming no allergy to gluten. He didn't have the dairy test, but I am off dairy at the moment. Should get the date to see the gastroentologist next week. Thanks so much for asking!
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RE: Parents with Children of special/high needs childre... - 9/2/2008 6:26:09 PM
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Mrs.Wifey
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Not all people do the Hydrogen breath test, we have had all sorts of allergy testing done and that is apparently not one that is commonly done in the US. I think that is probably because it isn't testing for a true allergy to milk protein, but to lactose. Lactose problems in babies are so rare that it's probably better as a last resort test.
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RE: Parents with Children of special/high needs childre... - 9/2/2008 7:19:20 PM
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myka
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quote:
They will probably make her do the hydrogen breath test if you think its dairy.
I thought I had heard of the hydrogen breath test before. As Ryanne said, it is for lactose intolerance, which is very unusual for infants and babies to have. When someone is lactose intolerant, their digestive system gives off certain gases that can be measured--allergies are different than that. True allergies are immunoglobulin (Ig) mediated. The tests that are usually used to diagnose allergies are the RAST blood test, a skin scratch test and another skin test. When we had allergy testing, the girls had the third kind of test. However, the "gold standard" of allergy issues is the elimination diet.
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RE: Parents with Children of special/high needs childre... - 9/3/2008 6:48:29 PM
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NotDoneYet
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From: Virginia
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Well, we go to the allergist tomorrow...
We went to the eye doctor today...turns out that my little one has severe astigmatism, is near-sighted and has a lazy eye. We ordered glasses (she looks SO cute) and go back in 6 weeks. If the glasses aren't helping with the lazy eye, we'll proceed to patching...
Good Grief!!!! Oh well...the pulmonologist is next week....
NDY
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Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/3/2008 7:01:31 PM
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myka
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quote:
If the glasses aren't helping with the lazy eye, we'll proceed to patching...
Is this your 3 year old? My family has extensive problems with 'lazy eye' -- probably a genetic tendency, so I have done quite a bit of research about that also. My older two did patching (didn't help with the eye problem); the little one had strabismus surgery at 13 months. She is the only one who doesn't currently have a problem and her vision is normal. However, her problem was only muscular; I would say that with the sight problems (myopia, astigmatism), glasses should correct the problem.
I really don't think that patching corrects the ultimate problem and doesn't encourage normal vision.
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RE: Parents with Children of special/high needs childre... - 9/3/2008 9:48:33 PM
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NotDoneYet
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From: Virginia
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quote:
ORIGINAL: myka
quote:
If the glasses aren't helping with the lazy eye, we'll proceed to patching...
Is this your 3 year old? My family has extensive problems with 'lazy eye' -- probably a genetic tendency, so I have done quite a bit of research about that also. My older two did patching (didn't help with the eye problem); the little one had strabismus surgery at 13 months. She is the only one who doesn't currently have a problem and her vision is normal. However, her problem was only muscular; I would say that with the sight problems (myopia, astigmatism), glasses should correct the problem.
I really don't think that patching corrects the ultimate problem and doesn't encourage normal vision.
Yes, this is my 3 year old...
She doesn't have obvious crossing (at least not to me)...but what do I know :)
We'll see what happens...patching worked quite well for me...now, the only time you can tell that I have a lazy eye is when I'm really, really tired...then my eye tries to take a really good look at my nose!
NDY
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Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/4/2008 1:13:38 AM
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nicole6598
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So is that hereditary, the lazy eye? My husband has it, glasses have helped him. We did suspect it with Nath when he was first born but he seems to be fine now.
I have a date!! Dec 4th is the date for the gastroentologist. So I have a few months up my sleeve to get him the Hydrogen Breath test which they would want him to have. I think it will fit in nicely with the timing I will be in the city anyway due to the renovations in our home!
NDY keep us updated on the other appointments you have :)
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RE: Parents with Children of special/high needs childre... - 9/4/2008 5:05:57 PM
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NotDoneYet
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The allergy tests ALL came out NEGATIVE! So...next stop is a Gastroenterologist. It's a strange situation, because even with the GI problems, she's a normal size and weight. The allergist is thinking GERD/reflux and maybe some sort of intestinal problem...Thank goodness our pediatrician is not one to give up!
We're waiting for the glasses...we'll see...I'm hoping we find the solution...
Prayers appreciated!
NDY
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Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/4/2008 8:49:42 PM
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nicole6598
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NDY that's great that your Ped is so helpful (mine wasn't, but my GP was). I did speak to someone and they said they thought they had to do 3 lots of tests before they confirm a negative result if the symptoms of an allergy were still present. I don't know if that is true or not.
How long til you get to see a Gastronetologist?
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RE: Parents with Children of special/high needs childre... - 9/5/2008 7:35:00 PM
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NotDoneYet
Posts: 289
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From: Virginia
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quote:
ORIGINAL: nicole6598
NDY that's great that your Ped is so helpful (mine wasn't, but my GP was). I did speak to someone and they said they thought they had to do 3 lots of tests before they confirm a negative result if the symptoms of an allergy were still present. I don't know if that is true or not.
How long til you get to see a Gastronetologist?
I have to talk to our ped. She has an appointment with a pulmonologist next week...I'll call at the end of next week when he gets the reports from the Allergist and Pulmno docs. It'd probably be a couple of weeks...We are blessed to have a satellite clinic from the children's hospital right down the road...and all her specialists are there (except the eye doc, she's across the street).
The allergist wants to re-test in 6 months...we're gonna reach our out of pocket max by december at the rate we're going :)
NDY
_____________________________
Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/5/2008 8:38:22 PM
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manda59
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From: Hampshire, UK
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quote:
ORIGINAL: NotDoneYet
The allergy tests ALL came out NEGATIVE! So...next stop is a Gastroenterologist. It's a strange situation, because even with the GI problems, she's a normal size and weight. The allergist is thinking GERD/reflux and maybe some sort of intestinal problem...Thank goodness our pediatrician is not one to give up!
Have you ever considered having a food intolerance test done on her? Where they take a pin-p rick of blood and test it against various foods?
An intolerance is different from an allergy in that the symptoms appear when there are a build-up of antibodies in the system - giving a delayed reaction rather than an immediate one.
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"Once again....drum roll please! Manda is right"
doinkdom, October 2008
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RE: Parents with Children of special/high needs childre... - 9/7/2008 9:25:19 PM
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nicole6598
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Hi just a quick stop in as i am not at home at present, I am staying with my mother in the capital city.
We took Nath to the children's hospital and I couldn't stay there awake as it was past midnight by the time we were to be seen, and I was going on 4 hours sleep total the night before, so hubby waited there instead of going the next day.
Jeanie has said I should post his symptoms to see if anyone has ideas. the doctor we saw said nath's waking in the night is behavioural and that he should be able to pass wind unaided.
frequent waking in night sometimes hourly
screaming.crying
archesback
twists and turns een when holding him
pulls legs up to chest
in day he is ok until he has a burp he can't get out, then he will cry and get angry until it is out usually you have to pick him up to burp him for a few minutes.
constant wanting to breast feed
you can hear the milk sloshing around in his belly
you can hear the noises in his throat and belly when he has wind
won't settle until he has wind out of him
by 4 or 5 in the morning has so much wind he is unbearable, I usually have to hold him in a funny position over my shoulder or on my lap and then his wind comes out of his bottom like a machine gun, he will then go to sleep.
he also gets blue around his top lip when he is laid down to change nappy etc and will scream and scream til he is up and then usually within a few minutes will burp
so if anyone has any ideas, feel free to share. thanks
< Message edited by nicole6598 -- 9/7/2008 9:39:59 PM >
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RE: Parents with Children of special/high needs childre... - 9/7/2008 11:09:06 PM
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Mrs.Wifey
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Nicole, at this point I would say to wean him from nursing since a proper elimination diet is so hard. I would put him strictly on a diet of poultry, pork, vegetables, fruit, potatoes, and rice. No dairy, soy, beef, wheat, nuts, or citrus fruits.
Of course, I am not a doctor but since your doctors are being less then helpful....
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RE: Parents with Children of special/high needs childre... - 9/8/2008 12:48:36 PM
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myka
Posts: 820
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quote:
he also gets blue around his top lip when he is laid down to change nappy etc and will scream and scream til he is up and then usually within a few minutes will burp
Has this one been checked out? I'm wondering if it is a positional thing with him, more like a neurological issue.
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RE: Parents with Children of special/high needs childre... - 9/8/2008 7:25:56 PM
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nicole6598
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Hi sorry just got a chance to update now.
The Paed said to wean and do controlled crying and see if that helps him and if not he will investigate further for me.
Last night he wasn't fed and my mum did the controlled crying. It took 45 mins (lots of 10 mins at a time) and he was asleep, slept for 3.5 hours. He woke again and the it took 30 mins and he slept 5.5 hours!!!!!!!!!!!!!!!!!!That hasn't happened in months!!!!!!!!!!!!!!!!!!!!!!!
He slept on his belly and wasn't wrapped. So maybe it was the position, maybe he wanted to sleep on his belly? We will be doing this for 10 days... Thanks for your advice and tips everyone.
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RE: Parents with Children of special/high needs childre... - 9/9/2008 9:28:23 AM
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Mrs.Wifey
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Gabby has always been a tummy sleeper because of her reflux... not only that, but it just seems more comfortable. Sleeping on your belly is a "prone" position. It does not surprise me at all, that at a year old he wants to sleep on his belly.
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RE: Parents with Children of special/high needs childre... - 9/9/2008 1:46:10 PM
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Auben
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My oldest had digestive issues and was very colicky as an infant a friend with 7 children showed me how to lay him on his stomach to get some relief. I'd carry him face-down across my forearm.
I hope they can narrow this down soon, Nicole. Poor little guy.
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RE: Parents with Children of special/high needs childre... - 9/9/2008 1:56:01 PM
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myka
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Hmm. All my kids were early to roll over and then they slept on their bellies. When dh was a baby, he had colic and his mom (a nurse) laid him on his belly on a warm compress.
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