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12.31.2011

HELMETS FOR EPILEPSY.

All though Cole doesn't have to wear his helmet for Epilepsy anymore (however, we recently started putting it back on him because of his anger issues and head banging)...there are others who are looking for Epilepsy helmets. We've been through 3 helmets already...and they are VERY expensive. Some insurance help pay for them, others don't. So I thought I would share my "secret" of where I got mine since they were SUPER cheap (these same helmets usually run $150-$300 and if your insurance pays for "some" they will cost you about 50% of the cost...I bought all of Cole's for about $50-$60! This is the company I have ordered from & they are great: Kid Safety Hats. These are the ones we've had and they are my favorites, I like them because they have great coverage for the "drops" and are very light weight & can't be pulled off!

Thudguard: $47
(Cole used this one when he started seizing at 10 months & wore it till he was about 20 months.)

Playmaker Headgear: $54
(Cole used the "x-small" from 22months-3years...he can probably use it for another year. We also got the size "small" which is the next size up...we don't need it now...but his school needed one with him so we got another which he uses for his anger issues!
I hope this helps save someone money like it did us! ...better yet, I hope you figure out how to stop the "Beast" so you or your child can be helmet FREE!

5 comments:

  1. Thank you so much for posting the website! I just ordered my son a new helment and saved lots of money! He also has epilepsy and his focal points are his left occipital and temporal lobes!

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  2. One more comment about the Keppra...I understand they don't want to change anything right now...but just understand that you two as parents have the right to make decisions for his health and well-being...if the keppra rage is too much, then insist on a change or find another doctor who will work with you. There is no point in being miserable for an entire year, just because they say so. They are not the ones caring for him 24 hrs. a day. A prayful consideration of course...if a change is necessary...but it really is your decision.

    For diet information...I have found that using favorite recipes and addapting is the best way to go...no reason to completly change everything. I have found replacemtns for most things...and we eat fairly closely to what we used too...just without the gluten, diary or soy. Here are some of the helpful books I have come across.

    Special Needs Kids Eat Right, Judy Converse
    Cooking to Heal, Julie Matthews
    Nourishing Hope, Julie Matthews
    Breaking the Vicious Cycle, Elaine Gottschall
    Special Diets for Special Kids, Lisa Lewis

    A Great magazine with info on other "names" used in the ingredients lists for gluten, dairy, etc...also great recipes
    "Living Without" - I can usually find it at sprouts, sunflower type markets...or you can look at their website, they have a lot of the recipes posted.

    We have been doing this for 4 years...and for the bread, I have found that Udi's and Rudi's are our favorite GFCF breads...but sometimes they need to be slightly toasted to soften up the texture. I use nameste, chebe & pamela's mixes most often.

    The hard part, besides finding what you like and don't is learning to read every label on everything you buy.

    We are lucky to have a trader joes close by, that is were we do most of our shopping...we have learned to not have bread, crackers, yogurt and cheese as our main go to for snacks...now it is mostly fruits and veggies for snacks.

    A few websites I love are:
    Elana's Pantry
    TACA - under there recipe section

    When I'm looking for a specific type of recipe, I will google the gfcf version, and will almost always find something.

    The most important thing is if you two decide to move forward in this direction is to go slowly.

    Starting first with Dairy/Soy...removing first at breakfast, then lunch then dinner. or All cheese, or all milk, etc.

    give yourself a couple weeks to switch over...then try to tackle the gluten...which is more challenging...because you would not believe how many products, condiments, etc have gluten.

    If you don't move forward with this diet, I would atleast recommend removing all dyes, preservatives, especially nitrates & msg which are very BIG triggers for seizures.

    Some kids go through withdrawls...so aggresion might get worse for a few weeks, and then get dramatically better. Our daughter went on a food strike for about 3 weeks...eating very little on mostly living on the gfcf formula we found. After that time, she started eating like she had never done before. Trying all kinds of new things.

    Some parents do a rotation diet...where they rotate their starches to avoid allergies, if they are a problem. We did this the first 2 years...we don't follow it strictly anymore. Please feel free to ask any questions...I'm always happy to help. alainajensen@gmail.com

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  3. Heather- so glad you saved some money! Thanks for letting me know also :)

    Alaina- You have been so much help to me...thank you so much!

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  4. Thank you for sharing your story on this blog! I've had seizures for almost 2 years. I have epileptic brain wave spikes and abnormally slow brain waves scattered throughout the day, but no confirmed diagnosis. Came on suddenly in my Junior year of college. Spent time down at The University of Utah hospital and no answers. I'm currently raising a service puppy. She will receive seizure alert/response training when an organization called "Heart of Dixie" in St. George can raise $10,000 to train her. I'm glad the diet is working for your son. Best wishes!

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  5. Thank you so much for sharing this story. Today my children were fitted for their helmets and i was informed that they would run us $352 each and are not covered by insurance. Both my children have epilepsy (21months and 5 &1/2) so this is such a great help! Thank you again!

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