Top Tweets for #InvDuDel8p
Happy 11th Birthday to my best big girl Hannah. What better way to celebrate than being almost 11 months #seizure free ❤️ She was delighted with her talking #MrTumble this morning. #LGS #SCN1B #LennoxGastautSyndrome #InvDuDel8p @_JustinFletcher
https://t.co/vbSmXbtqSf
#IAmNumber17 #Epilepsy #LennoxGastautSyndrome #LGS #InvDuDel8p #SCN1B #RareDisease #WonkyGenes
#Awareness
After 120 tonic clonics in 3 weeks it's amazing what 3 whole days and nights seizure free does for your mood. Look at that smile ❤😊 #SummerDaysOut #Epilepsy #LennoxGastautSyndrome #SCN1B #InvDuDel8p #WonkyGenes
This is why #inclusive play equipment is so important.
Thank you @RHCGlasgow
For making your playpark #accessible.
Having a pre-op spin and a smile before her Gastrostomy today ❤
#Inclusion #InvDuDel8p #Gastrostomy #Surgery
And the clock resets.
In epic style. 5 tonic clonics in 8 hours resulting in a big dose of rescue meds.
Here's hoping her Gastrostomy surgery can still go ahead tomorrow. 💔
#Epilepsy #InvDuDel8p #SCN1B #RareGeneticEpilepsy #GEFS+
#WonkyGenes #Seizure #TonicClonic
The face you make when you are #seizure free for 2 weeks for the first time in over a year 💪
#SCN1B #InvDuDel8p #Epilepsy #EpilepsyKeto #Happy #Rare #UltraRare #WonkyGenes #RareGenes
Having 1 rare condition is sooooo last year. Why not have 2 and be ultra rare. She has a gene mutation in the #SCN1B gene which causes........... ding ding ding you guessed it...... severe childhood epilepsy #InvDuDel8p #WonkyGenes #Epilepsy #Seizures #Rare #Unique #Genetics
Really excited to be talking to #RSMPaeds @RoySocMed today about being the parent of a child with a #rare genetic disease and how Paediatricians can make a difference.
#InvDuDel8p #WonkyGenes #1of80worldwide #Advocate #RareDisease #IAmNumber17
Best birthday present ever is this girlie having her Sparkle back ❤
Shoutout to Daddy for making her a 4:1 Keto ratio pizza
#Keto #MedicalKeto #EpilepsyKeto #Epilepsy #LennoxGastautSyndrome #LGS #InvDuDel8p #WonkyGenes
When two months in Non convulsive status isn't enough you have an allergic reaction to the tape holding your NG tube too. Tube removed for now and we'll syringe feeds until PEG can be arranged. Ketones good though 🤞
#Epilepsy #EpilepsyKeto #LennoxGastautSyndrome #InvDuDel8p
Pretty sure we're at plan XYZ now.Back in hospital with an NG tube to try push ketosis and get my girl out of Non convulsive status. Its been almost 8 weeks of 24/7 #seizure activity and she's exhausted and tachycardic
#InvDuDel8p #Epilepsy #LennoxGastautSyndrome #LGS #WonkyGenes
6 tonic clonics yesterday, rescue meds and a refusal to eat 💔
The drugs don't work and it's so hard to find hope when the outlook feels so bleak.
I feel like my girl is slipping further away every single day.
#Epilepsy #InvDuDel8p #LennoxGastautSyndrome #EpilepticEncephalopathy
Me : What do you want for breakfast kids?
3 + 5 yo : Waffles
8yo : An #absence, a #focal leading in to a generalised tonic clonic with a side of respiratory distress and bitten tongue, thanks mum
#RareReality #Epilepsy #InvDuDel8p #LennoxGastautSyndrome #EpilepticEncephalopathy
No more banging her head off the wall or thumping out of bed in the wee hours and no more #seizing out of view of her camera either 💪
#SafeSpaces #Epilepsy #InvDuDel8p #WonkyGenes #raredisease #Gratitude
What a difference a week makes and she's not even in ketosis yet. Gives me so much hope. I'm just sorry I resisted it for so long #Keto #KetoDiet #KetoForEpilepsy #KetogenicTherapy #InvDuDel8p #LennoxGastautSyndrome #Epilepsy #EpilepsyKeto #LGS #WonkyGenes #Seizure
After almost 5 weeks in #NonConvulsiveStatus we are 5 days in to the #KetoDiet and someone's Sparkle is coming back. This is the first she's played with toys in well over a month
#Epilepsy #EpilepsyKeto #LGS #LennoxGastautSyndrome #InvDuDel8p #ShowMeYourRare #WonkyGenes #Seizure
#RareDiseaseDay was yesterday and I saw a lot of this poem. I love it so much.
"If you were a wildflower, I'd pick you
and wear you in my hair.
And if they'd stare, I wouldn't care.
You'd want one too if you only knew
how the prettiest flowers are rare." Kelle Hampton
#InvDuDel8p
24 hours in to Keto and we have the most awake Hannah we've seen in over a month and finally got some sounds as well as some huge smiles. How awesome that it should be on #RareDiseaseDay #ShowMeYourRare #InvDuDel8p #WonkyGenes #1of80worldwide #Epilepsy #Keto
And so our #Keto journey begins. Thank you to the Daisy Garland foundation for the wonderful starter box.
After 10 tonic clonic #seizures in the last 24 hours we are more than ready and full of hope ❤
#Epilepsy #raredisease #InvDuDel8p
I'll be on @BBCRadioScot tomorrow around 1pm talking about the #IamNumber17 Campaign and Parenting a child with a rare condition in a Pandemic. #InvDuDel8p #Takeda #Rare #RareDisease #SEN
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