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Good month, and your thoughts??????
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Thread: Good month, and your thoughts??????

  1. #1
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    Good month, and your thoughts??????

    So I was told last night at work from an English RN , we are pretty lucky here in Australia with some financial costs from the government.
    We get a basic $105 a fortnight for career allowance , which is better than a kick up the bum, but yesterday I had 13 cartons of pull-ups arrive at my doorstep. That's 676 pull-ups for Noah. 6 months supply.

    We applied through Noah's specialist , who applied through MASS, medical aide subsidy scheme. Noah was approved, so now this will be our 6 month supply from now on.

    The government was going to stop it, but thankfully changed there mind for now. So we will take it while we can.

    With the funding for the verandah , work started, Noah's disability sticker approved, and now the pull-ups, it's been a pretty good month.

    Now the worrying part. infusions, beginning next Monday to Friday. Yep 1 long week hospital stay.
    On the Monday , we now have an appointment with a orthopaedic limb reconstruction team. The sound of that scares the crap out of me. Noah's nurse said that they could do femoral head reconstructions, but it just sounds so awful. It was only through a short conversation with Noah's nurse, months ago, and now this appointment is here????YOUR THOUGHTS. Please. I need to here what others think.
    Julie Bevan

    Mother to Noah 10 MPSIIIA.( diagnosed 15th July, 2010 ) Justin 27, Adam 24, Nicole 21, Mitchell 15, Joshua 13, Ella 8, Jack 7 all unaffected


    Noahs' site at caringbridge.org (Noahbevan)

  2. #2
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    So glad you have been able to get all of that sorted out! Yep, we don't do too badly in some ways. In other ways though, I think the rare diagnosis falls through the cracks. Shae has been denied any funding/support whatsoever for school because she doesn't fit into their tidy little categories.

    Sorry, can't offer any opinions on the surgery. What a hard decision to make.
    Sandi

    Mum to
    Shannae MPS1 - Hurler Scheie, 6 years old, diagnosed June 2011
    Talia, 7 years old, unaffected

    Our blog Around The Bend

  3. #3
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    Yes, funding certainly helps through all the stress of this disease. We also have it pretty good in Switzerland. Now Daniel is over 18, he gets a pension, and bills for day centre and taxi are paid by the Invalidity insurance. (Everyone has to contribute to that in Switzerland). There are always threats of cuts of course. But take a few months at a time eh? We also get Daniel's nappies through another charity for people with cerebral palsy. Apparently this organisation covers other illnesses. I guess cos they are so well known and get a lot of sponsorship. They then claim some of the money back directly from Daniel's insurance. (Very complicated insurance system here!

    What I miss though in Switzerland is the general kindness towards people with learning difficulties. In England, people talk to Daniel, smile at him etc. Here, they just stare as if he was from another planet! The day centre and professionally trained people are wonderful though.

    Now as to the operation. I have no experience of anything quite so complex but I do know that if you are going to do something, do it early enough while they are young as they will recover quickly and see benefit. Daniel had to have toe surgery and was in a wheel chair for a few weeks about 5 years ago and he recovered very well. All 4 wisdom teeth out just under a year ago went brilliantly and he recovered. Just follow the instructions for healing and protecting from infection to the letter though. Give lots of extra vitamins through it all and always have a pain killer ready on hand if he starts to get teary. In our hospitals they give paracetamol (1 gram) and Ibubrufin overlapping at the beginning when the pain is at it's worst, and then we continued with the 1 gr paracetamol for a couple of days longer til we could go down to 500 mgs.

    With Noah being younger the entertainment will be an issue but I guess you can take in TV or DVD player or order one in the hospital to be brought? Also story, nursery rhyme cassettes to listen to?

    We will of course be praying and sending lots of warm hugs!
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  4. #4
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    So glad to hear that some supports have kicked in for Noah.
    I have no personal experience with Ortho surgeries. Ortho issues are not so common for Sanfilippo. It does sound very scarey. How long would recovery be?
    Valerie Barnett

    Steffany (06/29/95 to 02/26/11) MPSIIIA
    Stevie "BammBamm" (12/14/97 to 12/31/12) MPSIIIA

  5. #5
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    Quote Originally Posted by Val View Post
    So glad to hear that some supports have kicked in for Noah.
    I have no personal experience with Ortho surgeries. Ortho issues are not so common for Sanfilippo. It does sound very scarey. How long would recovery be?
    Not quite sure how long recovery would be, but I know they said if we go ahead Noah will be sedated for two days and then up for physio soon after. Sanfilippo and physio???????

    I will wait till the appointment with the reconstructive team and see what they say on Monday. It's sure confusing when it's your own child. And so heart wrenching. Bad night with the hip pain tonight, when walking.

    Dealing with admission on Monday for pamidronate and then the appointment Monday arvo. A really tough day, and long week in hospital coming up next week.

    Elizabeth, we do the same and when Noah is at his worst, paracetamol and ibuprofen over lapping is what we do too. I didn't think a sanfilippo child would have such a problem with bone issues , as well with the other problems that comes with it.
    Julie Bevan

    Mother to Noah 10 MPSIIIA.( diagnosed 15th July, 2010 ) Justin 27, Adam 24, Nicole 21, Mitchell 15, Joshua 13, Ella 8, Jack 7 all unaffected


    Noahs' site at caringbridge.org (Noahbevan)

  6. #6
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    Good luck Julie,
    Hope all goes well for Noah, and you manage to keep your sanity. Hospitals are so very tricky for our kids that hate them so much. I'm glad that your family is plentiful, and shift work could hopefully be organised.
    Annmarie Gauci, Mum to
    Sam, 8 with MPSIIIA
    Little brother Tom, 5 just cheeky

  7. #7
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    Quote Originally Posted by jack200769 View Post
    Elizabeth, we do the same and when Noah is at his worst, paracetamol and ibuprofen over lapping is what we do too. I didn't think a sanfilippo child would have such a problem with bone issues , as well with the other problems that comes with it.
    I can relate to this. I never thought we would have such vision problems either. That really upsets me more than anything I guess. Isn't it enough already!
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  8. #8
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    Elizabeth, You would think so...
    Annmarie Gauci, Mum to
    Sam, 8 with MPSIIIA
    Little brother Tom, 5 just cheeky

  9. #9
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    Elizabeth, is it true that most mpsIII's can't see in the dark. Retinal pigmentosa. Noah can't see, properly anyway. Bumps into everything and always tries to climb out the window where the street light shines in . His doctor said that most have it?????????
    Julie Bevan

    Mother to Noah 10 MPSIIIA.( diagnosed 15th July, 2010 ) Justin 27, Adam 24, Nicole 21, Mitchell 15, Joshua 13, Ella 8, Jack 7 all unaffected


    Noahs' site at caringbridge.org (Noahbevan)

  10. #10
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    I think a lot have night blindness, but that doesn't necessarily develop into full retinosa pigmentosa. Retinosa pigmentosa is progressive and means tunnel vision. Here in Switzerland in German, it's Rohrblick, which means like looking through a straw.
    Daniel and some other MPS sufferers seem to get this. But I would not say it is the norm. It's hard right now, because it's autumn and suddenly everything looks darker. I am not sure therefore whether Daniel is having more trouble right now because of that or because the vision has got much worse.

    Another aspect of it is very slow adjustment when moving from one level of brightness to another and also focusing in and out.
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  11. #11
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    Julie, I don't normally check in this section of the forum - but I saw your post & I'm intrigued What exactly is the problem with Noah's hip?? I can't offer any advice there I'm afraid, Georgia's hips were always fine (no noticeable deterioration showed on x-rays). I know that hip problems can be troublesome with MPS (Perthe's disease?),but I'm not aware of any children that have had surgery. Maybe you should post in the 'Medical section' - you may get more response?
    We were very lucky in England, with all the services that we had for Georgia I used to get carer's allowance (which equated to approx £65 per week), plus Georgia used to get a monthly allowance (approx £500 per month), plus I used to get child benefit & tax credits. All in all, an approximate total of £800 per month. All of the equipment, feed & supplies, nappies, wheelchairs, medications, nurses, carers etc etc were free. All of the adaptations that we had done in the house for Georgia's needs were paid for by our local authority - we didn't have to pay for anything, fair play the services provided for disabled children in the UK is very, very good
    Georgia also suffered with night blindness from quite a young age, though thankfully she never went on to have more serious eye problems
    Louise
    Mum to Georgia (16 yrs, 11.7.95 - 19.2.2012, MPS IIIA) and Christopher
    Fly high sweet Georgie Pie

    Georgia’s webpage

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