Pipers morning began with a cluster of seizures emergency medication and a big sleep, followed by a renal ultrasound and more finger pricks, this noted Pipers ketone levels had dropped, our plan is now a day behind! we can only
hope Pipers levels improve tomorrow with the assistance of a higher fat ratio.
Piper spent much of today in tears, completely unusual for her. :(
We ended the evening with ten seizures within the hour, surely tomorrow will once
again bring a state of ketosis and a better result.
Pipers ketone levels are thankfully picking up, we are once again heading in the right direction :)
So many smiles today
which is fantastic! no sign of the expected lethargy just a very happy little girl, well enough to move on to solids! and the first ketogenic meal! Beef stroganoff..which kind of resembled a brown soup covered in oil, as this was Pipers first meal in
four days it was tolerated quite well, a little reluctant, although unwilling to let the opportunity of a meal pass by :))
Bloods and urine continue to show signs of ketones, after a discussion with our Neurologist we are crossing fingers
tomorrow we will be heading for home.
Although Piper required emergency medication to stop her seizures early evening, our little princess slept without a hint of a seizure throughout
the night, this mornings bloods continue to display ketones within the requires range! We are now able to take our baby girl home for Easter! Yay!!
Packed with needles scripts ketogenic meals and ketocal
formula we are quietly confident! How hard can this be?
Preparation for the diet begins at home, after our initial education session we were given Pipers calculations for meal requirements calories, carbs, protein and fats Piper is placed
on a 4:1 ratio, this meaning 4grams of fat to every 1gram of protein and carbohydrates, creating a meal within a ratio is no easy feat, once created and calculated meals are weighed into portions and frozen in readiness for the return from Hospital, perfect!
Had it not been for the fact the ratio was changes to 3:1 on our discharge.
Easter Saturday.. so happy to be home, my husbands back to work, and now we're all alone!
ok, I can handle this.... My kitchen resembles a war zone and my computer is almost over heating as I continue to sit and recalculate meals to the new ratio, two of my dear friends came to visit with a bottle of wine and some Easter cheer, little did they
know they'd be playing supermarket sweep and crunching numbers until midnight,
We have oil, cream, cheese, butter, whey, mayonnaise, sour cream, all the things that make up a great ketogenic meal! Now if we could only work out our recipe!!
we finally came to the conclusion Pipers fats carbs and protein must need to change as the numbers were certainly never going to add up, after contacting the hospital it was confirmed an incorrect percentage of fats carbs and protein had been given,
finally we were able to recalculate new meals for Piper. Aunty Stacey's baked banana custard a smashing success :))
Small myoclonic seizures were noted throughout the day, lasting
seconds and perhaps four at most, two nights in a row seizure free, I wake, I check and our little princess seems to be sleeping soundly... I'm so excited I could tell the world, although frightened I'll jinx myself! could it really be.....
Just as I begin to sing praises of the Ketogenic diet to Pipers Physiotherapists a tonic clonic seizure occurs, although tiring for Piper three small seizures today is certainly an improvement on twenty!
Another day of tears and a very upset little Piper I can only put it down to adjusting to the diet.
Three seizures today which is still quite a reduction,
emergency medications have not been required since returning home from Hospital, a welcome change.
however this evenings bloods did indicate excessively high ketone levels, we will continue to monitor Piper as we try to bring the
levels back down :/a very tricky formula....30ml of lemonade placed down the NG tube is hopefully all that will be required to correct levels and reduce today's symptoms, just another hurdle.... Although we're still jumping :) x
April 5th (Day 12)
Tears continue and we are now checking bloods three times a day keeping a close eye on the ketones, should Piper continue on this way the diet will be reviewed.
Today marks the anniversary
of Pipers first seizure, the day our lives changed forever... , the day we started our fight together.
So much strength and courage displayed by someone barely two months old. We could never imagine our little
princess would wake to such an uncontrolled state, who knew two years on, our little girl would have gone through several therapies, nine specialist and countless trips to the ICU, who would have thought We'd go from dialling triple zero
with trembling hands and fighting tears, to administering medication, placing into recovery and calmly waiting to see if the seizures were about to go beyond our control.
We as parents have had countless ups and downs, almost
a million emotions in one day! Although a little purple princess who never complains takes it all in her stride, greets each day with a smile, and works as hard as she possibly can through therapy each day, making Mummy and Daddy so proud!
Such an amazing little person, two years has brought small milestones! some lost, some regained.
as we've heard others say...I may have epilepsy, but epilepsy does not have me.
We can put up a pretty
good fight, and with a support team as ours.. it will never have Piper <3
Two days on and piper is sleeping through the night still without a hint of a seizure :)) days are still proving a little challenging
although seizures have reduced in quantity and severity, tonight Pipers levels have again gone through the roof! Pipers neurologist will now consider another change in ratio.
I say.... Our little girl seems more alert, certainly more vocal, very checky, strong and happy!
I only pray this diet will work, and give our little girl the life she so deserves 💜
🍴Pictures of Pipers Ketogenic journey....may be viewed through the main menu:
💜A diet with a difference 💜