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 💜
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!