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Guest Message by DevFuse

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Heather : (04 February 2012 - 12:00 PM) Hugs Alex, am just catching up with your saga. Blimey if you didn't have all this to cope with you could power the NAtional grid single handed woman, you ARE amazing. IV phenytoin was eventual rescue for Cameron that worked. After three rescues everyone concerned finally realised that was THE drug he needed and that's where we've been ever since. Of course as soon as it was realised taht IV phenytoin was THE only rescue for him it went out of stock, cue frantic few days phoning our two local hospitals to MAKE SURE they had some in the cupboard with Cameron's name on it if needed. Diaz was a total disaster, clob, let's NOT go there, midazolam was GREAT but for us phenytoin remains the answer with Midaz for rescue, obviously have everything crossed I have not totally jinxed everything by typing this so will just add brief "hrmph" for luck. Lots of love to you and the lads xx
Xerox : (03 February 2012 - 10:19 PM) Going to check out ebay and amazon, thanks. Another chaotic afternoon of multiple services working for Laurel and Hardy, not managing to communicate or co-ordinate looking after 2 boys for 2.5 hours
Ros : (02 February 2012 - 08:44 PM) Hi Alex, hope things improving for you and both boys. We too have Paraldehyde here as a 2nd line rescue med after Midazolam when it is not working (half the time), Paraldehyde usually works well. Also, this week I have finally bought a pulse oximeter (sats/heart monitor) off Amazon for £20, delivered today. Just a tiny one, no bigger than a blood glucose meter. So after years, no more guessing......Take care xx
EthansDad : (01 February 2012 - 10:16 PM) gut feelings are great sometimes Paula... apart from the ones that tell me i am hungry when i am not and make me eat too much...
Susan L : (01 February 2012 - 09:21 PM) (Although the depression is a different issue, but neuro prescribed anti-depressants today!)
Susan L : (01 February 2012 - 09:18 PM) We feel VNS has really improved Sarah's qol - reduced recovery time from seizures, no status, no midazolam or 999 calls since she had it in July!
kate : (01 February 2012 - 06:06 PM) VNS has been horrendous for Joseph Alex. Caused far more problems and very little positive. How are the little men doing? Hope matt is improving. Will keep an eye out for a SATS monitor for you, but we struggled to find one when we were looking!
Paula : (01 February 2012 - 06:21 AM) Alex..we too got to a position In December 2010 where we had several meds and a v poorly boy.. with deteriorating qol and did pull all meds and start again with a clean sheet with topamax and low gi..it helped so much doing that ..but he was worse with all meds gone :( Could have been fallout/hangover. Introducing the top on its own meant that it worked though..where it did not in combo with the other meds present. In our case it was a good call..but we couldnt predict that..was just a gut feeling. Doing the same at present as have heard felbatol works better on its own ... so know how you feel on all of this xx
Xerox : (31 January 2012 - 06:20 PM) no I have my views on why it would be contra-indicated for tonics but also the current thinking is meds not working therefore take them out slowly to give some qol added to which clob makes worse and bm doesn't appear to work (I realise lots of people have had good stuff with vns and know several adults) I am looking for a 2nd hand sats / heart monitor for very poorly boy, talking to neuro later this week thanks
Paula : (31 January 2012 - 06:14 PM) Alex pardon my ignorance but do either Matt or Tom have the VNS? Harrys minor motors worse on vns so far xx
kate : (31 January 2012 - 05:19 PM) Ella has paraldehyde as an emergency med as she stops breathing with any benzo!! It works fantastically
melanie : (31 January 2012 - 04:51 PM) Hi Alex, after BM we had Paraldehyde nor sure thats spelt right having senior moment. sorry!
Xerox : (31 January 2012 - 01:03 PM) what's alternative to bm ? alternative to clob?
kate : (28 January 2012 - 10:59 PM) Hope he continues to improve Alex x
Xerox : (28 January 2012 - 10:05 PM) good news for joseph x matt still in minor motor but not alternating with conv stat 24/7 so we have bought a little time :-)
melanie : (28 January 2012 - 09:09 PM) kate that's wonderful news, sometimes they do have a heart and listen to what we need
kate : (28 January 2012 - 08:54 PM) Excellent WCS appointment (I know, shock!!!) getting a chair that suits joseph's needs and ours too. They are adapting a chair to add higher handles and a chest harness so it does everything we need it too! Fab!!
rach : (28 January 2012 - 06:03 PM) Phew, well done on getting out. Hope Matt is a bit better xxx
melanie : (27 January 2012 - 09:21 PM) glad your home, lets hope it stays that way for a while
kate : (27 January 2012 - 09:03 PM) Sending lots of love to you n the boys Alex x

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Welcome to Matthews Friends

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Guest Message by DevFuse

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    dawnfarmer

    Ha ha, it seems that by ruffling feathers, things do get actioned. Thank god I let rip yesterday and disgusted that I even needed to

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