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torsdag den 22. marts 2012

Gastroenterologisk Ambulatorium


Arthur, Mollie og jeg mødte op på den hidtil ukendte afdeling 4271.

En sød norsk sygeplejerske startede med at måle og veje Arthur. 97 cm - 14,2 kg. I efteråret vejede Arthur kun 11 kg så han er i positiv udvikling.

Da vi skulle ind til lægen, vågnede Mollie og jeg jonglerede med børn, indtil den norske sygeplejerske kom og snuppede Mollie, - tak!

Lægen havde læst op på Hyperekplexia, så hun havde en idé om hvad vi skulle snakke om.

Jeg fortalte om problemer med amning, Arthur der kastede op af den første grød, jævnlige opkastninger i forbindelse med spisning af mos og senere rigtig mad. Vi talte om hvordan Arthur afskyr nogle konsistenser og hvordan han undviger al mad - Hvis han kan.

Vi talte om manglende madglæde og manglende sultfornemmelse: "Jeg forestiller mig, at han har det ligesom du og jeg har det, hvis vi har været inviteret til frokost og så skal spise aftensmad" sagde Lægen. - Og det giver nok meget god mening.

Arthur blev henvist til en diætist og til en ergoterapeut (en ny én), og så skal han kontrolvejes om 3 måneder.

Jeg fik Mollie igen og fik jongleret hjem med to børn. Måske Mollie bliver hjemme næste gang jonglerede:)

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mandag den 5. marts 2012

Facebook tråd :) - The Hyperekplexia Society on Facebook :)

Jeg er med i en gruppe på Facebook for folk (eller pårørende til folk) med Hyperekplexia. gruppen er startet af Andrew Lathan, som har Hyperekplexia. Andrew har også lavet denne hjemmeside om Hyperekplexia.

For leden skrev en af gruppens medlemmer denne skønne tråd, som jeg har fået lov til at dele på min blog:

Angela
Let's lighten the mood! Name some perks of having hpx.. I'll go first, you never have to work out, you were born with a six pack!!.

Justin well after much thought, you're a little tougher than everyone else cuz you learn to take pain pretty good... lol                           

Justin well i have had a lot of head injuries, concussions, falls resulting in injury and you just kind of get used to pain because of it, to where if you get hurt it just doesnt seem as bad

Angela Iron man!!! 

Colleen haha..love it! When i was a kid, my brothers used to make bets with their friends that I could beat them in arm wrestling...lol..I always won!

Colleen Another perk....my bros would also have me lay on my back on the floor and lift me up like a board by just my head...lol...I'm 43 and can still do that! :-)

AngelaNice!

Kathleen Thx for that Angela – had a good giggle now! Like your attitude! J
What you can’t change you got to learn to live with & make the most of it, right.
How about having a Hpx high jump competition? J

Justin put us all in a room with a scary movie and see who hits the ceiling first, lol. I took my kids to see that first Paranormal Activity movie and at the end I came out of my seat so high that my kids said it scared them more that i jumped so high than if I hadnt been there with them, and they thanked me for making the ending better!
Janice lovely to see this site having a light hearted moment -- keep smiling and i love the comments, sure Andy will be adding some of his own wit soon :))) keep up the good work all and thanks Angela for making me smile :-)

Andrew We could have keep me up all night meeting, see who will fall asleep first and i always wide awake at night i sure could haunt a house. The good with Hypx that as a guy you get loads extra muscle and dont have to work out. Also i used to play fight my cousins and once i jumped on them they never got up when we used to play fight as kids it was so brill.

Colleen haha..speaking of haunted houses..lol...I walked through a "haunted house" display at Halloween one year with my sister in law. I was behind her, anticipating someone jumping out as I held on tight to her from behind and when someone popped. up to scare us, I took both of us down (literally...we were on the ground laughing our asses off)! lol...I think the anticipation in knowing that we are going to be startled is far worse than a normal person in that situation. it's like you are sitting there just waiting to jump out of your skin. You know it's gonna happen and you also know what your reaction is going to be but you have absolutely NO control over it!

Kathleen The movie thing happened to me too, when I was about 16 – I made about 10 people jump in the row I was sitting in! Sort of like a chain reaction.

I startled in a part of the movie where everything was quite & the tension was still building up & everyone was holding their breath & waiting to see what will happen.

Everyone next to me jumped, which gave me another fright & I jumped again!


Andrew Colleen, I ve took part in one of the Halloween shows in haunted mill, as a scare actor did it for free, i hated horror as a child but decided why not give it ago and be on the other side and it was so fun.

Andrew We should all go on the ride of the Mummy in disney world and see who can startle the most i think it be good or if there scare actors they might STARTLE more then us.

Andrew oh we can sit in a doctor office and wake for them to BANG something on the table, i always know they want to do it so i egg them on.

Colleen not sure how this relates to this topic but Andrew bringing up sitting in the doctor office made me reflect. Have you ever had a doctor test your reflexes by tapping your knee with a rubber hammer??? OMG! My reflexes are extreme! With the lightest tap, I about kick the doctor in the face! Crazy!




torsdag den 1. marts 2012

Medicin

Fra Arthur fik diagnosen Startle Disease, fik han Clonazepam i form af Rivotril Oraldråber.
Dråberne må ikke indtages direkte i munden, men skal blandes op med væske.

Før jeg gav dråberne til Arthur, smagte jeg selv på dem, for at forstå, hvad jeg gav ham. Smagen af Rivotril er meget speciel og dråberne nærmest brænder på tungen. Man får en sitrende fornemmelse, der nærmest bedøver. Arthur måtte i begyndelsen have dem med juice i en engangssprøjte, da han ellers spyttede væsken ud igen.
Arthur startede med en lav dosis og blev langsomt trappet op. Han bliver fortsat dette ud fra sin vægt og får nu (i en alder af 3 år), 6+7 dråber i døgnet.


Rivotril er et antiepileptisk muskelafslappende præparat. I udgangspunktet, får det kroppen til at slappe af - Det kan for nogen virke nærmest bedøvende - På Arthur har det modsat effekt. Man kalder det en "Paradoksal reaktion".

Rivotril er ikke uden bivirkninger - Man kan for eksempel få vejrtrækningsproblemer (Arthur har været medicineret for mulig astma i 2 år), søvnforstyrrelse (hvilket Arthur må siges at have), rastløshed (ja, tak), mangel på appetit (Mmm...) og meget andet...
Jeg ved godt, at man aldrig skal nærlæse den del af indlægssedlen, men når man giver sin (dengang) 4 måneder gamle baby medicin fra en flaske med rød trekant, så skal hvert et ord nærstuderes i mine øjne.

En bivirkning er også, at man bliver dybt afhængig af Rivotril. Dette ser vi tydeligt, når Arthur glad kommer løbende hen til køkkenet for at få sin medicin! Han leger tit at han tager Rivotril, drypper badevandet på en ske - og Mollies D-dråber omtales da også, af Arthur, som "Mollies Rivotril". En enkelt gang, har Arthur fundet flasken med Rivotril (på øverste hylde i et køkkenskab) og tømt en halv flaske, hvilket gav os 6 timer på Riget til afgiftning...


Arthur elsker sin Rivotril, og han har brug for den... Og han skal nok have den resten af sit liv.