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Story of my teenaged son (Read 7189 times)
ruth
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Re: Story of my teenaged son
Reply #15 - 04/16/11 at 15:33:39
 

Thanks for all the ideas.  Still can't quite figure some of this out, I do think the dizziness he experiences is related to blood pressure rather than vertigo.  Maybe dizziness is the wrong way to describe it, it's an ongoing challenge to help him identify and describe what he is feeling.  

My mother has Menieres, I have tinnitus, and I was treated for vertigo a few years ago by a kinestherapist (that was in Belgium, not sure what it translates into in English).   He only mentioned the tinnitus recently, so I'm not sure how often it is happenning. It's one of those weird things that you learn to ignore, and I have enough trouble getting him to talk about how he is feeling.  

He is having a lot of trouble with bloodshot eyes, one in particualr, at the moment, flaring up repeatedly.  I will ask about eyedrops next week, I know we can get ketotifen eye drops here, but not the oral medication.
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Josie
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Re: Story of my teenaged son
Reply #16 - 04/17/11 at 00:04:18
 
Hi Ruth ,

I am sure you mentioned the tinnitus before Wink I get it as an early sign , it goes away with anti histamines Wink

I will let you know what my rash is felt to be Wink Its spreading . A new dot on my thumb this morning .  

If he feels happy talking online I would be happy for him to have my facebook as the chat is a very good way of he chatting without feeling he has to continue and it gives him safety of disatnce . I will also happily copy all converstaions to you , so you know what is being discussed . Just a thought Wink

many hugs
Jose
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ruth
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Re: Story of my teenaged son
Reply #17 - 04/17/11 at 01:23:05
 

Thanks Josie for your offer, that's kind of you. I think if he had a diagnosis he might be amenable to some sort of online support, even just reading some other people's stories, but for now I don't think he would feel comfortable with it.  I am also still trying to walk that fine line of letting him just get on with being a teenager, and not allow his health to dominate life.  When I back off a bit I find he is more inclined to come to me with things he has noticed, when the moment is right for him.
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Josie
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Re: Story of my teenaged son
Reply #18 - 04/17/11 at 03:38:10
 
Hi Ruth ,

I understand Wink its a fine line for all of us . Needing to talk but wanting to get on with things . The offer is there Wink if he feels having an outside person who understands something he wants Wink

Jose
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Joan
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Re: Story of my teenaged son
Reply #19 - 04/17/11 at 18:00:06
 
I don't know where you are, but in the U.S., Zaditor (ketotifen) eye drops are over the counter.  I've seen them at Walgreens.
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ruth
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Re: Story of my teenaged son
Reply #20 - 04/17/11 at 19:44:39
 
Thanks Joan. I'm in Singapore, I know I can get them from my doctor (doctors dispense medications etc here, probably questionable for ethical reasons but it's convenient not to have to make a trip to the pharmacy). I will also check our local chemist, they may be OTC.  Out of curiousity, do you know if they have only a localised effect (on the eyes) or if some would be absorbed into the blood stream and maybe have a little systemic effect?
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Josie
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Re: Story of my teenaged son
Reply #21 - 04/18/11 at 00:14:00
 
Hi Ruth ,

The topical treatments of ketiofen and gastrocrom do have some absorbtion . Nasalcrom in particular is a good route as when it is taken orally a large amount in processed out of the blood in the first pass through the liver . The blood from the stomach goes there next .

So in real terms , the dose given nasally is not far short of the oral dose when the blood gets to the tissues .

The oral route is good for bowel problems .

many hugs
Jose
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ruth
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Re: Chasing Shadows
Reply #22 - 04/21/11 at 14:07:04
 

I've been posting on Judy's thread but bringing my comments here again so as to leave that conversation to get back to judy's son and his story.  I had a couple of lightbulb moments yesterday, well maybe tealights, not earthshattering but thoughts that help me persist in thi frustrating jrney.  one very cocnrete idea I had, not radical at all, but will help for us.

Cameron has only just gone onto regular medications recently, up ntil now he has taken meds for symtpom releif as required, except after some of his very bad episodeds a few years ago.  He's pretty good now about taking them morning and night, but every so often he forgets, and goes a couple of days without any, and  it's only a few days later I will realise.  He hates talking about how he is feeling, hates focussing on his symtpoms, and as a teenaged boy doesn't like me quizzing him and checking up on him.  And ususally when I ask he has had them and it annoys him to think that I don't trust him or soemthing.  I am going to get one of those weekly medication boxes, with little boxes for each day to sort the tablets into. I had always thought they were just for old people with memory problems and dementia, but it will actually be a good prompt for him, and more importantly I can check whether he has taken them without having to ask him and annoy him.  Simple and obvious, but took me a while to think of it.

The other thing I thought about yesterday is shadows. I am thinking this 'condition' that causes all the things he feels, whatever it is, is castin a shadow - that's all we can see for now, the shadow. To me this shadow looks an awful lot like it's being cast by a MCAD, it looks just like the shadow it would cast, but until we can get a look at the actual entity casting that shadow we can't be certain that's what it is.  Sometimes it's cloudy and the shadow becomes a bit indistinct or disappears altogether, and I find myself wondering whether I imagined it, only to have it reappear quite clearly.  So when I find myself thinking I am chasing shadows, which is how this fees often, I am, but that doesn't mean it's a waste of time, I just having to keep looking for the '3D reality' casting that  shadow and know that I'm not imagining it.  I also have to remember that while we only see the shadow, other things can cast a shadow that looks very similar if not identical, and we have to stay open to that.  

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judy
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Re: Story of my teenaged son
Reply #23 - 04/21/11 at 18:37:30
 
Hi Ruth,
          Yes that tryptsase thing is a problem, we have an abnormal result 6 times but none of them have been taken in that few hours. Jarrods range from 2.5 - 3.7. I have now got a form to get this done at emergency when he has an attack. It was hard to get because his are all at night. In a way I cant wait for a next attack so we can get that test (isnt that awful) but I just want a diagnosis. I believe a diagnosis will go a long way in the way we are being treated at the moment.
Was cameron a happy baby, Jarrod was always screaming in the first 3 months. Some days from 3pm until about 10 pm he wouldnt shut up.
But then It was summer then and a very hot summer it was too.
Jarrod is very sensitive to touch on his head, my hairdresser seems to notice this, it can be very mild or really bad. He also has this very distinct smell on his scalp. Everyone can smell it except my doctor who seems to have blinkers on, makes excuses for a  lot. It seems to be the same smell we all have except stronger. Thank god you can only smell it when really close.

anyway take care
Judy
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ruth
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Re: Story of my teenaged son
Reply #24 - 04/22/11 at 02:32:30
 

Hi Judy,

For Cameron I would really like to have the 24hr urine test, but so far it hasn't been offered, and I haven't pushed it, yet. I think the serum tryptase being within range has thrown them off but I would liek toknow what his histamine levels would show, as he is constantly itchy.  He wasn't a really unhappy baby, not the screaming for hours type of unhappy, but probably irritable, and has always been prone to having a short fuse as a child.  I think he had a bit of a reflux problem, and wasn't too bad as long as I held him. I even sometimes found myself sleeping on the couch holding him, so that I could keep him upright, he would sleep that way but not lying down.  My other 2 are pretty placid in nature, but Cameron was much more volatile and inclined to angry outbursts. We have had a lot of that over the last few years, which I put down to hormones, but over the last few months he has been really good - could be the hormones settling, but I also wonder if the change in diet and generally better health with less severe reactions has helped.  

The sensitive scalp thing is interesting, Cameron for many years couldn't tolerate the hairdresser using the clippers, something about the feel of it on his neck.  He tolerates it now, but he is gernerally sensitive to touch. He says he is always itchy. Yesterday I ran my hand over his upper arm and he reacted and said just touching it makes him itch.
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judy
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Re: Story of my teenaged son
Reply #25 - 04/23/11 at 02:42:25
 
Hi Ruth,
           I was reading about your son not wanting the attention. Jarrod is like that too, he hates any attention and wouldnt tell teachers if he did become ill. I find out about a  lot of things later like that so called anaphlaxis thing.I found out after the 3rd episod like this. He just had blood test on an extremely hot day, we were cooking tea and he came up to us and said  I need water now, with a hoarse voice ,clutching his throat , said he was dizzy and other arm on his tummy and squating down. Gave him water , settled down was still dizzy though. When everything was quiet he said You know what happened before thats happened twice before.

Has Cameron got that smell on his head like I described. Jarrod has been sensitive like you said at times too. Hes really flinched sometimes when I touch him on his arms .

Another interesting thing Ive recently thought might be involved is he cant seem to stand things on his stomach. Can't stand wearing jeans, prefers tracksuit pants or something elastic banded, even then he pulls them way down, likde I used to do when I was pregnant. The latest hairdresser appt he couldnt stand that cape around his neck said it was too tight, which it wasnt.

Jarrod always went to to the toilet a lot, just little bits and I thought that was just him. His urine has got this real foul smell sometimes too. When the tryptase came back normal I was absolutely devestated. I finally got my doctor interested enough to read some information. He was the one that ordered the 24hr urine, and we really had hope on this one when I read some other stories on here about the bladder problems. That tryptase , still got hope on that now I found his have never been a 1. It sounds like I want him to have this thing , but I just want a diagnosis. So very frustrated. It does fit in with masto so much. I know what you mean about your doc. My doc still thinks I am a bit nuts, but is usually happy to order tests, whatever I ask for. The latest one I asked for is the C-kit in  blood and CD2 and CD25. Bone marrow is better , but no one is willing to one on him. I think hes happy to do that  but he has to find out what he is asking for.Fingers crossed.

Jarrod was my naughty child growing up. I always thought it was attention back then, but now hes at school he totally not like that, so wondering if there was more to it.

Jarrod has reacted to a taping we put on one of his lesions before too.

Jarrod got bitten a couple of times on the face by a mosquito when he was 15 months old and his whole face blew up, looked like we bashed him.

He is extemely fidgety, cant sit still, Just got to touch something or pull  something apart etc.

This is very interesting comparing stories here isnt it.

I could write a book about everything that has gone on with Jarrod.

Take care
Judy
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ruth
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Re: Story of my teenaged son
Reply #26 - 04/25/11 at 01:22:08
 
Hi again Judy,

Has Jarrod had allergy testing? If he reacted to a bandaid he may have some allergies.  Cameron avoids drawing attention to anything, sat through til the end of a class with visual aura (early warning sign of migraine) before gettnig to his locker for a tablet and water. He deals with his near-fainting rather than let on. I don't know how much of it is not wanting to be seen to be making excuses to get out of things, because he knows other kids do that and how teachers sometimes react. I also wonder if it goes back to the 'helpful' doctor who implied his headaches were attention seeking and that Cameron should  just take medication and not tell me about it.

Cameron also always preferred loose, light clothing, and even went through a good part of winter in Europe in shorts and t-shirts.  He dislikes hats, and gets irritated by tags on clothing sometimes too.  He also gets extremely thirsty at times.

Not sure about the scalp thing, he does have a tendency to oily skin and scalp, and also dandruff, so I assume any odour is to do with that.  He also gets red spots often around the hairline, and sometimes turn into pale brown spots after the redness and itching goes away.  I have wondered about those, but the doctor barley glanced at them and dismissed it as nothing.
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Sandi
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Re: Story of my teenaged son
Reply #27 - 04/28/11 at 14:09:51
 
Geeze I just saw this! No I didn't mean antihistimines in the ear canal! Only if they are meant for it.  Benadryl oral will dry out the fluid in your inner ear. He had to take it at night for awhile. Just one  pill, every night. Made him too sleepy to take in the daytime. Also if you can tolerate stinging nettles, or HAS by Natures way that will help also. And the nasal sprays in the NOSE Smiley still aid  fluid build up elsewhere! Glad we cleared that up.
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