Hope Love Cure

Two days, five specialist and a plan in place 💜

We're off to a flying start, with multiple trips to Melbourne and our first session with Louise Rothols  a practitioner for the Anat Baniel method, a therapy  supported by the latest brain plasticity research.

Keeping an open mind and still a little uncertain of just what to expect we entered a small unit where Louise greeted us and immediately began working with Piper, allowing Piper to guide her and giving only the smallest of assistance, I couldn't help but wonder,  is this actually doing anything? 
Piper began the morning with a seizure leaving her tired, we feared our trip to Melbourne along with the opportunity may be wasted.
Watching Piper with Louise it soon became evident this was an enjoyable experience for Piper and she was wanting to please Louise responding well to the movements and positions.  Piper showed the pattern of wanting to side sit obviously this was achieved through assistance, and Piper felt quite pleased with herself being held into a sitting position.  Perhaps by coincidents or perhaps a new small connection was made that day, whatever it may be, Piper with very little core strength is trying to side sit. Obviously her low muscle tone prevents this from happening although the desire along with the drive and determination is certainly there, so we continue on with fingers crossed x

Piper has enjoyed one day seizure free since the years began, various seizure types although most presenting as apneic tonic clonic, all seizures are terrible although these have to be the hardest for Piper to recover, they seems to drain every inch of energy leaving Piper extremely floppy and tired. The addition of  tears just breaks my heart, coming from a little girl who simply does not cry. It's almost as if she's more aware now, not wanting the seizure to take hold.

Two busy days at the Royal Children's Hospital, five specialists and a plan in place 
Piper has the go ahead   for the ketogenic diet, her chances of success  may be slightly less, although this is due to the fact that Piper remains  undiagnosed. Statistically determining Pipers rate of success becomes a challenge, best case.. seizure free or a reduction in seizures and or seizure types, this resulting in further reduction in medication allowing Pipers physical development to increase :)
Worst case.... I guess nil effect and three months wasted.  We figure we have nothing to lose.

Piper will soon be rid of her nasogastric tube replaced by a (PEG) percutaneous endoscopic gastrostomy feeding tube, this is a more permanent solution  although can be removed should Piper regain the ability to swallow fluids. As Pipers expected recovery was compared to that of a stab wound, I felt terrible having to even consider this,  although I know this will be of greater benefit to Piper in the long run and certainly more comfortable,  no more tubes down Pipers  throat, no more  skin irritation from tapes and no more having to reinsert the tube! who knows! perhaps speech may develop! 
We now await a date for surgery

Write a new comment: (Click here)

Characters left: 160
DONE Sending...

marian jack | Reply 14.03.2017 22:57

My son recently started having grand Mal seizures at 16 years old. We were prescribed Kepler. We decided NOT to take the medicine and go with a Modified Atkins

Summer 14.03.2017 23:58

Seizures crept back stronger, and Piper regressed, the diet no longer effective :( i have known others to find great success! Wishing you all the very best! x

Summer 14.03.2017 23:53

Hi Marian,
We too tried the ketogenic diet and found it to work quite well for a short time, unfortunately piper became less responsive to the diet and seizure

Cassie | Reply 07.03.2017 04:54

Did you find results with Louise?

Summer 15.03.2017 00:07

is equally beneficial, Anat Baniel has a book you may like to try and source, describing her method :) best of luck x

Summer 15.03.2017 00:02

Hi Cassie,
I think if we had the funds and lived closer perhaps Louise would be of benefit however I do believe the Physio and interaction with give piper

See all comments

| Reply

Latest comments

11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief

07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

You liked this page