To spread epilepsy awareness, we’ve asked some of our favorite bloggers to share their experiences and what they’ve learned. Our first post is by blogger Tove who blogs at Mama In The Now. She interviewed her friend and fellow parent about parenting a child with epilepsy.

Getting a diagnosis of epilepsy doesn’t end the hunt for the under-lying cause of the seizures. Here are 10 things other parents need to know about epilepsy.

dandelions on a summer solar meadow

10 Things Other Parents Need to Know About Epilepsy: 

  1. In hindsight my child’s symptoms were: Odd symptoms at night that we believed were night terrors, although they may have been seizures. My child, also as a toddler, would at times not respond when someone was speaking and would seem “spaced out”. We believe these were partial seizures.
  2. The specialist who helped us the most: Both our pediatrician and current neurologist have been the most helpful.
    1. Our neurologist specializes in pediatric epilepsy. He explained what the EEG and MRIs showed. He clarified how seizures coming from certain areas of the brain would affect my child specifically, and what to look for with the medications.
    2. The pediatrician was the first to say, “I think your child had a seizure”. He makes sure we are seen quickly, if we suspect a seizure is caused by illness or something else that requires treatment.
    3. Both the pediatrician and neurologist help monitor side effects of my son’s medications.
  3. The specialist we didn’t expect to need: Before I understood what epilepsy was, I didn’t know that it could affect learning and behavior. My child has required help with speech and language, fine motor skills, sensory integration and other areas that have been delayed due to the seizures and medications.
  4. It took us this long to get a diagnosis: We got the initial diagnosis of seizures after only a week. It took about six months to get the diagnosis of epilepsy (which just means someone has two or more unprovoked seizures), and several years to find out that my son’s condition was not a benign condition. With pediatric neurology things can change quickly. Whenever he has had an EEG (a medical instrument that detects electrical activity in your brain) the results have been different with regard to where the seizures are coming from, but the diagnosis is still epilepsy.
  5. The biggest financial expense because of this medical condition is: Financially epilepsy can be a big expense.
    1. At one point we were paying $300 per month for my son’s medication because he could only take the brand name.
    2. At times the insurance company has changed their policies, so tests were not covered or only partially covered.
    3. There are additional services the child often needs that may not be covered such as OT, PT, SLP, behavioral therapy and tutoring.
  6. The organizations that helped us: is definitely the Epilepsy Foundation. It is a national organization offering services spanning from support groups, advocacy to financial help, if needed. You can also find online support onMyEpilepsyTeam.com, the social network and online support group for people living with epilepsy. 
  7. I wish my friends and relatives knew: what you see on TV is not necessarily what epilepsy is all about.
    1. Seizures can involve the whole body, or some times only one part of the body. They may cause repetitive movement or a brief loss of awareness.
    2. The medication helps control the seizures but not the abnormal brain activity. There is no perfect medication and many people need more than one medication to control seizures. Unfortunately some people cannot control their seizures even with multiple medications.
    3. The last thing I would like to express is that although seizures can be scary to watch, the person having them is not scary. Children and adults with epilepsy want to be included in parties and social activities.
  8. Our ray of hope: In our case we are hopeful that one day our child will outgrow epilepsy. There is never a guarantee, but there is always hope! I also hope more treatments become available soon for people living with intractable epilepsy.
  9. Our biggest cheerleaders and supporters: have been friends with children who either have epilepsy or other chronic illnesses. I don’t know what I would do without them! Many times parents become as knowledgable as doctors and can offer advice and compassion, when others may not understand what your child is going through or how to support you. Our family and the doctors are also very helpful. My child has wonderful teachers who are very supportive and understanding of how epilepsy can affect learning.
  10. I wish I had known: that there are people I can talk to about epilepsy and there is help available. I went several years keeping it a secret and not reaching out. There are many helpful and supportive resources, particularly through the Epilepsy Foundation and MyEpilepsyTeam.

I wish to thank my friend for her candid and honest answers. Please share this post with anyone you know affected by epilepsy. You never know where they are in their journey, and they may benefit from this information – even if it just to validate their thoughts and feelings.

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