She Slept!!
Last night it was clear by 8:30 that the cough was not going to let her sleep ... so Ian went down and cuddled her so that she could get through it. The cuddling is very soothing for her and it meant that she stayed asleep despite bad coughing and a stuffed up nose. Then at around midnight the coughing stopped and the breathing cleared! She then slept the rest of the night.
This was very good as the lack of sleep has been making life very hard for Naomi as she struggles to meet work demands .... it was so good for Naomi to have a full night of sleep.
This morning Kaylia is calm and happy. Wonderful! This doesn't stop her from asking for a car drive! But she accepts that she will have a car ride later. The Saturday routine is to go and visit Aunty Maxine (while Naomi works). Kaylia loves being at Maxine's and she usually manages to have at least two bath sessions while there! Since these visits have 2 car rides as part of them, Kaylia LOVES going to Aunty Max's. Before that we will visit the doctor to discuss the cough.
Saturday, May 22, 2010
Friday, May 21, 2010
Friday 21st May 2010
Kaylia has had a good day despite another disturbed night. The coughing - which she has generously passed on to the rest of us - is enough to wake her .... so we can't tell how good our sleep making ideas are! Last night she slept till 3am and then was awake till 5:30 when she slept again. Tonight we will try to give her some medicine before she starts coughing again ... so that the coughing doesn't wake her. Or so the theory goes!
The stimming has not reduced again but it is still much better than a week ago. Tonight she went to bed earlier than usual. Naomi thought she had settled her and had left her to sleep. The next thing she's up and racing around downstairs. Ian stepped in and she's asleep again. She's a tricksy little thing at times!
Despite all her coughing and spluttering she's gone to school every day this week. She may be sick but she's tough little thing. Tougher than her parents anyway :) We're going to take her to the doctor tomorrow as her cough is a little too croupy plus Naomi has is in her head that she may be developing her asthma symptoms again. In any event, Kaylee will enjoy the outing as she associates going to the doctor with jellybeans. That and that fact that stethoscopes make awfully good dingle-dangles :)
The stimming has not reduced again but it is still much better than a week ago. Tonight she went to bed earlier than usual. Naomi thought she had settled her and had left her to sleep. The next thing she's up and racing around downstairs. Ian stepped in and she's asleep again. She's a tricksy little thing at times!
Despite all her coughing and spluttering she's gone to school every day this week. She may be sick but she's tough little thing. Tougher than her parents anyway :) We're going to take her to the doctor tomorrow as her cough is a little too croupy plus Naomi has is in her head that she may be developing her asthma symptoms again. In any event, Kaylee will enjoy the outing as she associates going to the doctor with jellybeans. That and that fact that stethoscopes make awfully good dingle-dangles :)
Thursday, May 20, 2010
Thursday 20th May 2010
The trial of the new 'sleepy drug' was interesting but inconclusive - K has a bad chesty cough at present and it wakes her up from sleep - then keeps her awake. (and us too!) The new medication actually worked well ... administered 30 mins before bed and she was out like a light when her head hit the pillow .... but then she woke up at 10pm and was awake till about 4am. We need to control the cough before we can say whether it will work all night.
Fortunately, the stimming has continued at the reduced level without any headache. Tomorrow should see another small change in 'stimmy' levels.
I may be a strange bunny but I enjoy the process of thinking through the medication program and pondering the reactions observed. At present, the process is producing a fairly happy Kaylia!
Fortunately, the stimming has continued at the reduced level without any headache. Tomorrow should see another small change in 'stimmy' levels.
I may be a strange bunny but I enjoy the process of thinking through the medication program and pondering the reactions observed. At present, the process is producing a fairly happy Kaylia!
Wednesday, May 19, 2010
Wednesday 19th
(I'm including the date as the 'blog' is showing strange days/time of posting)
Tuesday night was another good night despite taking a long time to actually 'nod off'. Today, I have obtained a bottle of 'Melatonin' which we hope will counteract the insomnia produced by the medications which control the stimming.
Today we continued with an increased dose on Lovan (together with a small dose of Risperdal). We noticed that stimming was a bit less but still no headache. The "box hunt" was a bit less too. It will be interesting to see what the next small increase of dose brings!
I have had more comments about "What can we do to help?" Kaylee loves car rides! If you want to help, combine a drive in the hills with a "Kaylee ride"!! She'll love it!
Ian
(I'm including the date as the 'blog' is showing strange days/time of posting)
Tuesday night was another good night despite taking a long time to actually 'nod off'. Today, I have obtained a bottle of 'Melatonin' which we hope will counteract the insomnia produced by the medications which control the stimming.
Today we continued with an increased dose on Lovan (together with a small dose of Risperdal). We noticed that stimming was a bit less but still no headache. The "box hunt" was a bit less too. It will be interesting to see what the next small increase of dose brings!
I have had more comments about "What can we do to help?" Kaylee loves car rides! If you want to help, combine a drive in the hills with a "Kaylee ride"!! She'll love it!
Ian
Tuesday, May 18, 2010
Monday night
Last night we didn't use the Clonidine .... and she slept! It took a while to go to sleep but once there she stayed asleep!
The current plan is to keep the Risperdal at a low level while gradually increasing the Lovan. Hopefully this will reduce the stimming again.
This morning the box sorting stim was very strong and at every chance she would start walking toward the box that she currently wants to add to her 'sorted pile'. She is very sneeky at times but she doesn't get upset when she is caught ... just backs off and waits till she can try again.
Tonight (Tuesday) was our night out - 2 hours at Dome for a coffee. (Thanks Tina).
The current plan is to keep the Risperdal at a low level while gradually increasing the Lovan. Hopefully this will reduce the stimming again.
This morning the box sorting stim was very strong and at every chance she would start walking toward the box that she currently wants to add to her 'sorted pile'. She is very sneeky at times but she doesn't get upset when she is caught ... just backs off and waits till she can try again.
Tonight (Tuesday) was our night out - 2 hours at Dome for a coffee. (Thanks Tina).
Monday, May 17, 2010
Team Kaylee #8
Hi all,
Monday morning and we have survived another night. Sunday was a really good day .... it was "Kaylee the limpet" as she was just so happy and hanging off mummy all day - delight. Late afternoon brought a bad headache and after a dose of 'Painstop (Nighttime)' came the realisation that this contained an antihistamine which might react badly with the SSRI medecines. Time on the phone calling all the help lines soon sorted this out - it is OK but not ideal.
The night began well and she slept till 11pm - then she was wide awake & anxious. At 1am, Ian took her downstairs so Naomi could sleep. Kaylia stayed awake till 4am. We think that the Clonidine at night may be wrong and so we'll try 'no Clonidine' tonight and see how it affects her sleep.
Her levels of stimming are gradually increasing - one sign is her desire to have boxes of her 'toys' placed in strategic places in the loungeroom. This went away when she was on the full strength Risperdal but it has been gradually returning. Now she has three boxes and she is trying at every opportunity to add another box!
One current theory to test is that the Risperdal has 2 components to its action - the calming and the headaches - the calming is a short term effect but the headaches do not begin till the residual level in the body has reached a certain point - ie headaches are a longterm effect. By reducing the dose of Risperdal to a low level, we delay the onset of the headaches. Perhaps very low, very frequent doses will avoid reaching the headache threshold?
Till tomorrow...
Monday morning and we have survived another night. Sunday was a really good day .... it was "Kaylee the limpet" as she was just so happy and hanging off mummy all day - delight. Late afternoon brought a bad headache and after a dose of 'Painstop (Nighttime)' came the realisation that this contained an antihistamine which might react badly with the SSRI medecines. Time on the phone calling all the help lines soon sorted this out - it is OK but not ideal.
The night began well and she slept till 11pm - then she was wide awake & anxious. At 1am, Ian took her downstairs so Naomi could sleep. Kaylia stayed awake till 4am. We think that the Clonidine at night may be wrong and so we'll try 'no Clonidine' tonight and see how it affects her sleep.
Her levels of stimming are gradually increasing - one sign is her desire to have boxes of her 'toys' placed in strategic places in the loungeroom. This went away when she was on the full strength Risperdal but it has been gradually returning. Now she has three boxes and she is trying at every opportunity to add another box!
One current theory to test is that the Risperdal has 2 components to its action - the calming and the headaches - the calming is a short term effect but the headaches do not begin till the residual level in the body has reached a certain point - ie headaches are a longterm effect. By reducing the dose of Risperdal to a low level, we delay the onset of the headaches. Perhaps very low, very frequent doses will avoid reaching the headache threshold?
Till tomorrow...
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