My recommended resource list...
- Little Seizures, BIG Consequences
- What Your Doctor Won't Tell You
- Animated Tutorial - understanding seizures and their role in the brain
- Find an Epilepsy Center
- Kid's Epilepsy - find other children with matching diagnosis
- Seizure Tracker - tool to help parents keep track of seizure patterns, meds, appointments and all things seizure parent-ish
- ACTH alternatives
- NORD - if you are having issues getting Acthar approved by your insurance I recommend you contact NORD. NORD is said to have a financial assistance program to help get Acthar to families in need. If that gets you no-where please email me. I have been a passionate advocate for families being directly impacted by the unfathomable price increase of Acthar by their pharma - Questcor.
- Early Intervention - ask your child's pediatrician how to get your child enrolled in EI as soon as possible. EI is a government sponsored program that will bring therapists to your home to work with you and your child on maintaining and building developmental skills.
- Things to Remember
- Rhode Island Specific Resource Listing
- Unlocking the Lingo - easy to understand definitions of the various terms heard in IS world...such as hemispherectomy or IEP.
My recommended reading for family and friends -
- Molly Piper's - How to Help Your Grieving Friend
- 5 Things Your Friend Who Has a Special Needs Child Wants to Tell You - this post was written by a very close friend of mine who has gone above and beyond in her love and desire to feel what I'm feeling. Thank you SO much, C!
My recommended virtual support groups...
Therapy sites I love...
- Therapy Street - gob of ideas for Occupational Therapy ideas based on specific goals
- Your Therapy Source - great products and freebies to help enrich your child's therapy
- Backyard Therapy - easy little projects you can do at home to promote development
- Constraint Therapy
- Jen's OT for Kids
- The Best Speech Development Chart (evah)
My recommended testing to pursue - (I cannot emphasize enough how important it is to make sure the doctor treating your child has 1) experience with Infantile Spasms complemented by knowing when they're over their head and will refer you to someone with more 2) compassion 3) availability...one of the first questions I ask is Can I reach you By email?)
- An EEG - Chances are your child most likely had an EEG prior to a firm Infantile Spasms diagnosis. But I strongly urge you to ask for an EEG mid-way through your course of ACTH. And two weeks following the final injection. Even though it is not fully understood how...ACTH calms the chaotic brain waves and can reveal a hidden focus/foci. Those post ACTH EEGs played a vital part in Trevor being approved as a surgical candidate. Which is why I passionately urge parents to beg...if need be...to have EEGs during their course of ACTH.
- An MRI - An MRI will reveal an structural anomalies that may be the cause of seizures. I recommend asking for either a 3T MRI (which is a higher resolution) or an MRI with contrast. Of course making sure that there are no contraindications specific to your child. There is no "protocol" in neurology...but I find most children receive an annual MRI.
- A PET Scan - A PET scan differs from an MRI in that rather than revealing structural problems it reveals metobolic issues. Damaged areas of the brain will metabolize or process sugars more slowly than healthy brain tissue. Again...this is a good test to indicate if surgical intervention is possible.
- A MEG Scan - The MEG scan is becoming a powerful tool in neurology and is thought to be as effective as an invasive EEG. For those who may be unfamiliar - an invasive or intercranial EEG is when the skull is opened and electrodes are placed directly onto the brains surface. The information can reveal precisely where the seizures are originating. The MEG scan is a MUCH less invasive test - which can provide very similar data.
- Genetics - for us genetics solved a huge piece of the Trevy puzzle. His ARX gene had a mild unknown change and when they studies the pathology of his brain tissue we found grey matter heterotopia (a form of cortical dysplasia). Brain malformation is linked to ARX changes. If your child does not have a clear underlying cause, genetics can be helpful.
