Tag Archives: Lennox-Gastaut Syndrome

We Are Not Alone

13 Nov

Nearly 3 years ago, I shared with all of you how my daughter was injured while in the care of a home health worker. Getting that call was one of my worst fears. It was very difficult leaving my medically fragile, non verbal child in the hands of a nurse, who for the most part was a complete stranger. For those naysayers who ask why I did – let me tell you, special needs parent burn out is real, and we need a break every once in a while too. However, since her accident I haven’t been able to have any new nurses in our home. Partly because there are no experienced paediatric nurses available, and partly because I’m deathly afraid of my little bug getting hurt again.

Since publishing that post, I have connected with many, many more families who have had negative experiences with nursing care as well. Stories that have involved nurses being drunk at work, or having locked themselves out of the house when they left to smoke a cigarette with the child being alone inside, or ones who have taken drugs while caring for a child. This has to stop. We live in Ontario Canada! One would think our excellent health care and governing bodies would stand by their guidelines to help families like ours. One of the issues is that there are far too many hands in the cookie jar. There is a shortage of great paediatric home care nurses, and an overage of upper management.

I went through the proper channels that were available to my daughter as a patient, and filed a report with the CNO (College of Nurses of Ontario).  After filing a report you wait for an investigator to be assigned to your case. Then you wait some more, and then some more. Over a year later, we were finally assigned an investigator who apologized for the delay, as they were very busy with many other investigations.

There are 2 massive issues right there. Firstly, in the time it takes to have someone assigned to investigate a claim submitted to the CNO, a health care worker could easily injure others or, in the case of Elizabeth Wettlaufer (a nurse in Ontario who is a convicted serial killer), cause death. According to the Toronto Star, the CNO allowed Wettlaufer to continue working after it was notified of the many issues surrounding her performance as a nurse.

Secondly, it took a year for an investigation to even begin because they were so busy with other claims. Nurses and health care workers are supposed to be put in place to care for our children, yet more and more reports and claims are being filed. Why?

A month ago, we finally received the “verdict” from a panel of professionals at the CNO. My heart sank as I read their statement shown below – the woman who allowed this to happen to my daughter was to receive advice. Yes, that’s right, advice on how to be a better nurse.

If the CNO is overwhelmed with files being claimed against nurses, and families are being forgotten about or brushed off, who is supposed to help protect our most vulnerable?

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It’s PURPLE DAY!!!!

26 Mar

Purple Day 2013

Today, March 26th marks the international day for Epilepsy Awareness. My very first post about today was back in 2013. I always find it interesting to look back on my previous posts and see how far we have or haven’t come and what has changed.

The biggest change is that we’ve discovered Ladybug is seizure medication resistant. We have tried all medications that are safe for her to take and none have had any positive effects on her seizure activity, especially since she’s been diagnosed with Lennox Gastaut Syndrome. The other thing that made me chuckle, but in a bit of sad way, was how I was so excited that Ladybug was a whopping 20 pounds. 5 years later she is now only 23 pounds (10.5 kg). Although, she is taller so that is a big win – she has grown from 71cm to 84.5 cm (28″ to 33″). That is 1″ a year.

In 2015 we talked about starting her on a Ketogenic blenderized diet. This never came to fruition. Given Ladybugs reflux and tummy issues, in order for us to get her on a keto diet she would need a GJ feeding tube. This bypasses her tummy and goes strait into her intestines. It would also mean continuous feeds and would impact her school time, and could still potentially cause an increase in reflux. The cons far outweighed the pros at the time so we opted to put that idea on hold.

After quite a bit of research we were able to get Ladybugs neurologist on board with trying CBD oil. Although it was very helpful in her overall health and wellbeing, it had no impact on her eeg results and seizures.

So here we are March 26, 2018, a lot has changed in 5 years. I’m still very hopeful that there will be some kind of treatment we will come across that will help with Ladybugs seizures. Perhaps now more than ever as the type of seizures she is having is slowly increasing. Last week Ladybug had her first absence seizure. They should typically only last a few seconds but her lasted over 2 mins, then this morning what started as a typical auditory triggered myoclonic seizure turned into an almost clonic seizure where her arm started shaking. Thank heavens she returned to baseline quickly afterwards. I don’t know what we will try next treatment wise – maybe a different strength of CBD oil, or perhaps there is a new pharmaceutical that might show positive changes in kids with LGS. I do know that I will NEVER stop trying to find treatments to help my little bug live the best life she possibly can.

Here is the link to the 2013 post that gives more of a background on Purple Day.

 

Happy 7th Birthday Beautiful

3 Dec

7 years ago today we welcomed our itty bitty little Ladybug into the world. She was born at 03:56 and in true Ladybug fashion – made a very grand entrance after a very long labour. Knowing her now I wouldn’t expect anything less as she LOVES being the centre of attention, just as every princess should.

DSC_0027At the time we didn’t have a diagnosis, and were told that the chances of her surviving the first year were beyond low. None of that mattered. We had our sweet tenacious baby girl and our life, although atypical for many new parents, was perfect.

Today we celebrate Ladybugs 7th birthday. In the past 7 years she has taught me patience, strength, courage, and perseverance.  Everyday brings forth a new struggle, but everyday she takes those challenges and kicks a**!  She is doing amazing in school, and has even started to take steps in her gait trainer. Ladybug adores her little brothers, and often smiles and laughs when they play together.
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Happy 7th Birthday Beautiful! dsc_0591