Hope Love Cure

Back to the drawing board for our purple princess

After four months on the Ketogenic diet our treatment has come to an end, we now start the weaning process and introduce yet another anticonvulsant medication, the diet has done little to improve Pipers seizures, it's back to the drawing board for our little Princess πŸ’œ

The last few days have seen us reaching for the emergency meds..nothing out of the ordinary of late, as Piper has  been in and out of hospital with temperatures, vomiting, increased seizures and extreme difficulty swallowing secretions, finally approved to gain our own suction we will now be able to assist Piper at home.
We have started Piper on her new anti convulsants, which is not recommended for children under seventeen years of age. 
After administering this medication  Piper began to  spend  her days and nights in tears, screaming , continuously stiffening her entire body, I just couldn't bring myself to administer it any more, in fact I refused! by the following evening we were starting to see a little spark and signs of a happier little Piper.
for weeks  Piper has been unwell, the past few nights were different! it was as though  Piper  was in great pain, the screaming, crying and seizures were all very intense, how did we know Piper wasn't experiencing nausea, dizziness, double vision, headaches, just some of the symptoms associated with her new anticonvulsant, I can appreciate every medication comes with its own risk and if we reacted in such a manner to all Pipers medications she'd certainly never be on any! Let alone adult doses!  we allow this because we haven't any other option, we need to find a way to stop the seizures as they continue to leave scars on the brain, we need to do something to allow our little girl to move forward, as she remains, too tired too slow, too hazy, too floppy, too medicated too weak for physio. Through stimulation we improve muscle tone and growth,  although stimulating an already tired child promotes seizure activity,  and when the seizures finally end, once again Piper remains too tired, too slow, too hazy, too weak, too floppy to do anything! How can she possibly develop in this cycle. 
After stopping the new anticonvulsant and discussions with our neurologist, we agreed to continue the new medication when Piper is well again. we have now completed Pipers second round of antibiotics, we have  smiles and a little  girl reaching for toys once more,  I guess we are to consider this well. 
my husband and I have had many debates ;) over Pipers medication 
and I know we have to give it another try before our next meeting in Melbourne, so reluctantly this morning I administered this horrible medication along with Piper's daily meds, knowing what this new medication is likely to do and how it will make Piper feel :( I could just cry! 
My baby girl is about to become distressed inconsolable, nauseated, confused and I am to inflict this upon her in an effort to prove that this ninth anticonvulsant is just not suitable, as seizures continue and only goodness knows what additional side effects !! 
I watch my little girls misery in order to persuade a medical team to try something else! 

Write a new comment: (Click here)

Characters left: 160
DONE Sending...

Josh Lee | Reply 12.08.2013 11:08

Summer and Michael you are two of the strongest people I know. It makes me ill to even read about what you have to endure everyday. You inspire all parents.

Ben Lavakeiaho | Reply 12.08.2013 00:50

Thinking of Piper And you all , fingers crossed for something soon . Take care Painey and co

Sharyn Dean | Reply 12.08.2013 00:28

It just breaks my heart to read this Summer..thinking of you guys all the time and I hope u will get some answers soon xxxooo

Belinda | Reply 11.08.2013 23:11

Thinking of you all. Wish I had some magic dust to sprinkle over your purple princess. Much love and hugs xx

Emma | Reply 11.08.2013 17:02

Piper your a fighter, the bravest girl I know.. Keep fighting..

Raelene | Reply 11.08.2013 16:45

My heart goes out to you all I hope that soon they find something to help your gorgeous little girl

Sal | Reply 11.08.2013 15:56

The next meeting in Melbourne can't come quick enough, by the sounds! Hang in there. xxx

Skye Sparkes | Reply 11.08.2013 15:51

Pipey is lucky to have such an amazing mummy that will fight to the end of the earth for her. Just keep swimming, love you guys.xxxx

Annette Gray | Reply 11.08.2013 15:44

That's just heartbreaking. That poor little baby, life is very unfair. Hugs for her, and all of you. xx

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