Harry's Journey

Rylie's Story as Told By Her Mummy Laura

Rylie Joyce Nantau was born May 16, 2006 after a very routine pregnancy.   At birth, she weighed 8 lbs. 6 ounces and to all appearances, seemed a normal, healthy baby.  While in hospital, though, my husband and I noticed that Rylie seemed to tremor more than we had seen when our first daughter was born.    We inquired about it, but were told that it while she did seem to tremble more than usual, it wasn't anything to worry about.

Rylie was a quiet baby.  She seemed to sleep quite a bit and often  had to be roused to be fed.  Again, we felt like something wasn't quite right, but put it down to perhaps her just being a less than active baby than our first.   At about three weeks of age,  while breastfeeding, I noticed her eyes flickering to the right, but wasn't sure if she was just trying to focus.   We also noticed that she would turn her head to the left and flex her left arm up as if she was fencing on a fairly regular basis.   After a routine visit to our family doctor when she was a month old  it was discovered that Rylie wasn't gaining enough weight and  we were sent to a pediatrician.  While at the pediatrician, Rylie had a seizure and we were sent to our local hospital in Windsor, Ontario.

From there, we were subsequently sent to the Children's Hospital of Western Ontario in London, Ontario, where Rylie was seen by two neurologists.  She underwent an EEG and an MRI and we were told that she had epilepsy, but of a focal nature and that the seizures, which were happening almost constantly could be controlled.  That was in July of 2006.  She was started on phenobarbitol and the seizures seem to abate for a short time.   While in hospital in London, the phenobarbitol stopped working and she was started on dilantin, but that was stopped by the  neurologist who came on service after her initial consult.  He started her on Vigabatrin and topiramate.  As these appeared to be working, we were sent home, but not for long.

We were in and out of hospital over the next few months, all under the belief that we were dealing with a focalized seizure disorder, albeit an aggressive one.  Rylie was not improving and in fact, her seizures were getting worse and almost constant.  She was sent home one time on three anti-epileptic drugs  and was extremely  sedated for six weeks while the seizures started up again, sometimes as many as 200 a day.    Up to this point, Rylie had been put on phenobarbitol, dilantin, valproic acid, vigabatrin, topiramate and pyroxidine, all with no longterm improvement.   Frustrated and back in hospital in October of this year, we requested Rylie be seen somewhere else for a second opinion.  We were subsequently sent to the Hospital for Sick Children in Toronto, Ontario, in the hopes that Rylie would be a candidtate for surgery.

It was in Toronto that we learned that Rylie had MPEI and that surgery was not an option. We were also told that she had seizures 24 hours a day, whether we could see the physical manifestations or not; meaning that many of the seizures were deep in her brain and would not  be recorded on an EEG.    We were told that she was only the second case of MPEI that they had seen at Sick Kids and that, unfortunately, she will not have a long life.   That was on October 31st, 2006, a day that my husband and I will never forget.  As distressing and frightening as it was to see our daughter having seizures, we never
once thought that such an outcome was possible. It is something we continue to struggle with every day.While in Toronto, Rylie  was put on Keppra and topiramate in November and thus far, it has proved to be very effective for her, although we realize that that could change in an instant.  Our next plan of action should these fail is the ketogenic diet.After months of frustration and heartache, we finally got the answers we were looking for thanks to the excellent doctors at Sick Kids.  It's been difficult, but we are no longer operating under false assumptions about her condition and have dedicatedourselves to making her life as good as it can possibly be.

Rylie's general health at the moment is very good.  At seven months old, she is still able to move her arms and legs around and her head control is improving.  She is still able to eat from a bottle.   She has some cortical visual impairment and is substantially delayed in her development:  she can't roll over or sit up on her own and only makes the most basic sounds.  She doesn't hold anything in her hands for very long.  We have Rylie in physical therapy as well as play therapy with someone from the Canadian National Institute for the Blind to try and maintain what sight she does have.  So far, she has not had any chest infections or pneumonias but we are very aware that things could change at any point.

We would be very happy to be of help to anyone who has any questions or who would like another support system to add to their existing ones.   We are grateful to Harry's mom, Denise, for the site she has put together.  It helped us understand MPEI and to have an idea of what Rylie's own continuing journey may be like with this devastating condition.

Rylie's mom and dad can be contacted at lnantau@hotmail.com

 Since our last posting  on Harry’s Journey, Rylie is now 14 months of age (dob May16/06) .  She still cannot walk, talk, hold her head up for very long, or hold objects in her hand.  She received a G-tube in June of  2007, which was switched to a Mickey button in July, as she was aspirating too much fluid. It was a difficult transition for us to make (mom and dad) as it seemed to be yet another step down, as it were, but it is the best thing for Rylie and we know that she is getting all of her medicine and the risk of pneumonia is decreased somewhat.

 

Rylie meds continue to be Levitracetam (Keppra) and topiramate.  She also takes 4 mgs of  Phenobarbital twice a day.  This mix has proved to be excellent for Rylie.  We rarely see any seizures.  It’s been wonderful as well as we now get more smiles from her, though we do know that she will not make many gains in her development.

 

When we are able to, Rylie meets with her occupational and physical therapists and she now has a Kid Kart wheelchair.  This is great as it gives her the support she needs over a regular stroller.  She enjoys going for walks, especially down by the Detroit River, near our home.  The breeze in her hair always makes her smile and coo.

 

Rylie has had two episodes of status epilepticus but these were stopped with a dosage adjustment and no further damage was done.  Her physical health to date has also been very good.  She has not yet had any pneumonias or other significant illnesses and we credit this to both luck and vaccinations against certain types of pneumococcal illnesses that are available here in Canada.

 

It is still hard to keep the tears at bay many days as we continue to grieve  the loss of  a normal life for Rylie.  However, we do try to care for her the best we can and we love her very much .  I  would like to extend an invitation to anyone who would like to correspond, ask questions, or just to blow off some steam to contact me.  I’ve met some wonderful people through Harry and I wish that it wasn’t under these circumstances.  I genuinely believe that Harry’s site is raising awareness about MPEI and not only for us parents.  It is my sincere hope that by linking up and sharing experiences (including medications) that  we can provide important information for doctors as well.

 

Rylie’s Mom and Dad can still be reached at lnantau@hotmail.com

On the 15th March 2008, Rylie passed away peacefully in hospital in Ontario with her family around her. She had been ill with Pneumonia for two weeks and this triggered seizures that medicines couldnt control. Her parents knew that she was tired and that the best thing for her was to allow her to pass away.