November is epilepsy awareness month! Epilepsy is a disease that has stolen so much from my family, and from so many families that I know. It’s a disease I’ve seen take the lives of children. A disease that has stolen skills, development, growth, and joy. A disease in which research is underfunded and yet it affects 65 million people worldwide. Please take the time this month to learn more and help us spread awareness! Madison’s Story Madison developed epilepsy as a result of meningitis at 11 days old. She had her first seizures subclinically while she was sick, meaning...
An update on Big Sis!
We’ve had lots of baby spam over here lately (#sorrynotsorry), but things are happening for big sis too! Believe it or not, it’s time for Madison to start SCHOOL! Well actually, she should have started already but coronavirus came and placed us in limbo for the last, what, 8 months now?! Madison has been a part of the Early Intervention program since she was just a few months old which provides kids with therapy opportunities through the age of 3 at which point they would transition to preschool. Madison turned 3 over the summer and so we had begun...
Epilepsy Awareness Month
November is epilepsy awareness month! Epilepsy is a disease that has stolen so much from my family, and from so many families that I know. It’s a disease I’ve seen take the lives of children. A disease that has stolen skills, development, growth, and joy. A disease in which research is underfunded and yet it affects 65 million people worldwide. Please take the time this month to learn more and help us spread awareness! Madison’s Story Madison developed epilepsy as a result of meningitis at 11 days old. She had her first seizures subclinically while she was sick, meaning...
Medicinal Marijuana: Part 2
Let me just start by saying, epilepsy sucks. I don’t think I could ever describe how painful it is to see your child have seizures every single day. How stomach turning it is to pump them full of strong and serious medications day in and day out. Medications that haven’t even been able to fully control their epilepsy. Yet this is the fate that many epilepsy parents face. CBD oil has been known to be somewhat of a miracle cure for many epileptic patients. There are tons of variations and ways to administer it. Some find seizure freedom with...
Medicinal Marijuana: Part 1
It’s official, Madison is officially registered with the NJ Medicinal Marijuana Program! We got her card in the mail last night and could not be more excited to start this journey with her in the hopes that medicinal marijuana helps her find seizure freedom. Because marijuana is not legal in New Jersey there’s quite a process in becoming a part of the Medical Marijuana Program or MMP. For one, you must suffer from an approved debilitating condition. In NJ these include: Amyotrophic lateral sclerosis Anxiety Chronic pain related to musculoskeletal disorders Chronic pain of visceral origin Migraine Multiple sclerosis...
The Domino Effect
Epilepsy sucks. Diabetes Insipidus sucks. Hypopituitarism sucks. All of these conditions are difficult to mange on their own, but put them all together and the complexities can be overwhelming. With so many systems out of whack, a tiny change in one can greatly affect the others. Whenever something is “off” with Madison there’s never an easy answer as to why. We always have to look at the whole picture and it can make things quite challenging to say the least. So far, we’ve been pretty lucky in her care with most of her systems running smoothly and levels stable....
Keto Update
If you’ve been following along you know we were hoping to start Madison on the ketogenic diet as a means to relieve her seizures. The diet has a good success rate, especially for the type of seizures Madison has, and when effective can allow for a reduction or removal of medications. I attended a seminar all about the diet, it’s risks, the process, efficacy rate, etc at CHOP back in October. Read more on that here. It was super informative and we hoped to get Madison admitted in January or February if the team felt she was a good...
Madison vs. the EEG
So I know I owe you guys all the details of our first family vayk, & I promise I’ll get to that, but in true Madison fashion this week has thrown us another unexpected curveball! Yesterday Maddie and I were excited to get back into our normal routine after returning home from vacation over the weekend. Before our day really began I touch based with her neuro team to update them on the status of the ketogenic diet process and to share some updates on her current seizure activity. When we met with the neurologist at CHOP on Halloween...
Happy Halloween!
So we have had a crazy busy two weeks my friends! It’s been nonstop with various therapies and doctor appointments. I used to be someone who was so organized and on time, and now I never know what time we have anything #momlife lol. So I thought I’d pop in and update everyone on all of the craziness! Early Intervention Last week Madison had her yearly re-evaluation for her Early Intervention services. A developmental specialist came to meet with Maddie and tested her on various motor and social skills. In true Maddie form she slept through the session, so...
Fat for Fuel: The Ketogenic Diet
This past Monday I attended a Ketogenic Diet Seminar at CHOP, which is required by the hospital in order to start the diet as a part of their program. The class was presented by the entire keto team including the director of the program (who we’re actually meeting with next week), nurses, dietitians, a social worker, chef, and even a mother of a child in the program. Why would we need to start the ketogenic diet for Madison? And what is this diet? While it’s becoming more mainstream and fad-like, it actually originated as a way to help those...