Hi all, I am new to the site and would like to introduce myself. I am Wanda, mom to Matthew 12, Hannah 11 and Abigail 8. I live in the GTA but am originally from the Niagara.
8 years ago Abigail (Abi) was born at 34 weeks, she was born having a generalized seizure. The doctors were not sure if it was caused by a stroke, a drug addiction (that was quickly ruled out) or just something that happened. She was given a 10% survival rate at birth and is now a very energetic 8 year old. For the first 2 and a half years she was in and out of hospital with retractable epilepsy and accidents from falls and also many fevers. She was also on about 6 different AE's, none controlled the seizures until she was put on Valproic Acid. She is still on that as well as clobazam but still having break through seizures. Her development and speech are delayed and her social development is that of a 4 year old.
She has recently started having seizures that are causing Todd's paralysis, twice affecting her face and last week causing her to lose the control of her legs. She was not able to walk until the following morning. The doctor we saw at the hospital said the muscles in her legs were just pulled, but when we saw her ped. he confirmed Todd's. Last weeks seizure was hopefully caused from the heat but we will hopefully find out next month when we go for our check-up at Sick Kids. Today she is not doing so well with the heat and humidity, I am thankful we have central air, but I think it is going to be a long summer.
I will post more on her story as I go along. Just wanted to post an introduction and hope to get some support as I am finding it hard looking at all the sorry faces from those around me. I guess I just need someone to understand what is happening in our world.
Looking forward to getting to know you all.
Wanda
Hi Wanda!
Welcome to Epilepsy Moms! We certainly do understand what you are going through and my heart goes out to you as you go through these challenges with Abi.
I too was born very early and was not expected to live and know what challenges my parents went through along with the constant medical interventions that came with the premature birth. I can imagine what you have been through.
But you have been dealt many challenges and are dealing with them head on. What wonderful parents you are. All I can say is that I found my sons seizures to be such a hinderance to his development and he faced death several times because of the constant seizures.
I am glad you are searching for answers and pray that you find them as I did. Look at all your options. If you can manage it, try the diets that have worked so well for so many moms including the low glycemic diet, the modified atkins, the gluten and casein free diet, or the more strict ketogenic diet. I would try the easy ones first and see if there is a difference. I am happy to provide you with some links if you would like to find out more.
Good luck to you. I would love to hear back to see how you are doing.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com