#11
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Hi Bessie we give dallas the capsule in a spoon ful of yogurt.When the melotonin doeasnt seem to work thats when we give her a break for couple of weeks.
I must say though were in a catch 22 arent we ,i know Dallas probably needs something stronger to really work well but then you have side affects etc .Hope that helps .
#12
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ive been really tearful for he past two days, my daughter didnt fall asleep until 3 am. she hadnt had a nap or anything, we even walked around our local woods but still she didnt sleep until 3. funny thing is my son slept - i cant win. ive had a bad headache all day. i even got on the wrong bus back from town.
#13
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ahh i hate days like that...mine tend to coincide with a hectic day of appointments to top it all off. Theres nothing more frustrating than when the Children won't sleep, or one does and the other doesn't. I remember sitting there in the middle of the night once when alfie was about 2weeks old, euan had had a screaming fit and woke him up then gone back to sleep leaving me with a crying and permanently hungry baby who just cried and cried. I ended up lying upside down in the bed, hand in crib while euan hugged my leg. I just cried, it just felt like it was never going to end. Even now when euan wakes he shouts so loud waking everyone up and im up and down giving drinks (as i have FINALLY got him in his own room!!) . Most nights i end up sleeping in his bed just to get SOME sleep. It deffinatly takes its toll, I sit downstairs at 4.30/5am thinking god, how did my life get to this......going to bed at 11, waking up for meds/disturbances and then getting up that early.

I look on facebook and theres a load of people i used to know when i was younger JUST GETTING IN when im getting up. I feel like a bore when my status updates say 'i can't wait to get into bed' lol although i am not sure why i look forward to getting into bed anymore.....it's not exactly like i sleep!!

xx
#14
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can i ask what kinds of meds your son has and how you adminster them, back all them years ago when i was having my first baby i remember thinking i could never cope with a disabled child. i couldnt give the 24 hour care needed.
#15
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Euan is on a coctail of 10, he has them through a mic-key button...I put some pics on another thread about not eating. He has to have cystagon to treat his main condition every 6hours including in the nite along with phosphate replacements, potassium replacements, sodium bicarb because his blood is too acidic, calcium for his bones, sodium replacement, anti sickness, anti acid because some of the others cause ulcers, indomethacin to try and stop him weeing so much and eye drops that are ment to be hourly but he won't have them in at the minute even if I pin him down! He has a huge urine output and drinks between 2 and 3 litres a day! Nappies last me 2 hours max. All the replacements are because his kidneys cannot retain them like we do, his button came out today so now he also has a nice acid burn on his tum to add to his ordeal, I've only just healed the last one!! Xx
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