[tri-med] Re: Aussie Alex

Dear Karen,

Thanks for the update, sorry to read it is not good news. I can 
understand your tears and exhaustion. Please give Alex a hug from me 
and tell him we are hoping he get's better real soon.

Nose bleeds. When we first came to Australia, Frank suffered numerous 
sudden copious nose bleeds. They were very frightening even to a 
grown man, so I can imagine how upset Alex would be. In the end they 
cauterized veins in his nose. They could not come up with any 
explanation, except he had a motor cycle accident a couple of years 
before and had broken his nose among other facial injuries, including 
a split pallet. Do you think it is high blood pressure on weakened veins?

Trying hard to think of words of encouragement Karen.  There is a 
virus going around at the moment, that produces symptoms of chronic 
fatigue, immune deficiency issues, eg mouth ulcers. Friend of mine 
has been three months fighting this to the point where he got very 
depressed. Maybe it's a virus and it will go away soon. That's my 
Pollyanna wish for Alex anyway.

Thinking of you both,

Jocelyn, Nanna to Tess.

At 04:51 PM 27/09/2006, you wrote:

>Thanks everyone for their concern. There is not a great deal that 
>anyone can do at the moment.
>As I posted a month or so ago, Alex's kidneys are not working 
>properly anymore. I know that some expressed disbelief and seemed to 
>think I was making it up but its a reality for me I'm afraid.
>Everyone, teachers, aides, even his nurse is starting to ask whats 
>up with him as he is no longer the Alex that everyone knows. He 
>doesn't look well and he certainly doesn't act it. Even his new 
>pediatrician said he looks so different at the moment.
>
>At the moment he is very tired. He is sleeping 14 - 16 hours a day 
>which of course means that school is very difficult. Even when he is 
>awake he is tired and as his teacher puts it "dazed".
>His systolic blood pressure is around 140 - 150 and diastolic is 
>around 95. Thats high enough for any 12 year old but its really high 
>when you compare it to his "normal" which is around 90/50. Its 
>giving him symptoms of headaches and a feeling that his head is 
>going to "explode". Its also making him very anxious and fearful 
>without having anything to be afraid of. Alex actually describes it 
>as being "angry" on the inside.
>His facial assymetry is really pronounced and he looks "funny" 
>because he is so puffy, particularly around the face. I miss those 
>gorgeous blue eyes.
>He is having repeated nose bleeds - and I don't mean typical nose 
>bleeds - each one produces enough blood to drench 2 or 3 face cloths 
>and result in a change of clothes. Alex is finding them distressing 
>when they occur in the middle of the night and he wakes drenched in blood.
>He also has an insatiable thirst and is having to get up 3 or 4 
>times a night to get a drink.
>I am not sure which symptom is causing it but his behaviour is also 
>effected and instead of being his typical placid self he is very 
>crabby and irritable.
>
>All of the above is of course setting off his other known problems, 
>and it appears that he also has an abcess on one of the lymph nodes 
>in his neck.
>
>The nephrologist had to be convinced to treat a child with T-18, but 
>he appears to be doing the right thing now. Its hard to tell though 
>and of course there is the blanket ban regardless on things like 
>transplants for our kids so its hard to tell sometimes. Thats not to 
>say that I wont try fighting it if I have to but.......... The 
>pediatrician was very embarassed talking to the nephrologist on the 
>phone with me sitting there hearing his side of the conversation.
>"yes that date of birth is correct"
>"yes he is an amazing child"
>"no he is not a vegetable"
>"yes he does talk"
>"yes he does go to school"
>I had to tell him I was used to it and not to be embarassed.
>
>Its all left me feeling pretty drained, and exhausted. But life goes 
>on regardless so there are always other things happening. (and on 
>that vein, yes Tracey I did know it was about to happen - it didn't 
>make it any easier to swallow though, or stop me crying buckets for 
>the last week or so, I am just not sure who I am crying for)
>
>All in all I am really worried about my little man. His symptoms are 
>escalating way too fast, but then again I wish he didnt have any 
>symptoms at all. It was really hard to bite the bullet and cancel 
>his birthday bridge climb as well simply because he was too weak to 
>do it. He was sooooooooo looking forward to it. I also can't get 
>used to seeing my live wire too tired to do anything but sit.......
>
>I do have the magazine article from better times earlier this year 
>and can share it now if anyone is interested. It appeared in 
>FIREground and is in pdf format if anyone wants a copy.
>
>Life consists not in holding good cards but in playing those you hold well.
>                                             -- Josh Billings
>
>Keep Looking For Rainbows!!
>    _--_|\
>  /Karen \
>  \ _.--._ /
>           v Karen, Mum to Alex (11 years, T-18 Mosaic)
>http://members.optushome.com.au/karens
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>
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