Resources

 

Highly Recommend…

https://www.seizuretracker.com/

Links for more information…

• www.childneurologyfoundation.org
• http://infantilespasmsproject.org/
• http://www.infantilespasmsinfo.org/
• http://www.infantilespasmscenter.org/
• www.childneurologysociety.org
• Little Seizures, Big Consequences http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/
• http://infantile-spasms.org/infantile_spasms.htm
• Sabril (Vigabatrin):  http://www.lundbeckshare.com
• http://professionals.epilepsy.com/medications/p_sabril_intro.html
• Our Neurologist: http://ped1.med.uth.tmc.edu/faculty/bio-Von-Allmen-Gretchen.html
• MEG Test {MAGNETOENCEPHALOGRAPHY}:  http://www.epilepsy.com/epilepsy/meg_intro
• Tuberous Sclerosis http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001791/
• Tuberous Sclerosis www.tsalliance.org
• Seizure Medications http://professionals.epilepsy.com/page/medications.html
• Ketogenic Diet http://www.carsonharrisfoundation.org/ketogenic_diet_long_chain_triglyceride_diet_ketogenic_diet.php
• http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet
• www.charliefoundation.org
• http://modifiedmom.wordpress.com/
• www.faceis.org
• Anti-epileptic medications http://www.epilepsy.com/epilepsy/newsletter/sept09/aeds

Interesting…

• http://www.medicaldaily.com/news/20100729/705/turmeric-can-heal-epilepsy-damage.htm
• Medical marijuana called Charlotte’s web.  It helped a little girl who was having hundreds of seizures a day, and was named after her.  If you have preconceived notions about medical marijuana like I did, you should watch anyway.  Very, very interesting!  http://youtu.be/BH5yzEu3JGQ.   Here is the website to the company in Colorado.  http://realmofcaring.com/

Forums…

• https://www.facebook.com/groups/63670816527/
• https://www.inspire.com/groups/tuberous-sclerosis-alliance/

Blogs about babies and kids who’ve has IS, and some who have had brain surgery…

• http://savannalininger.wordpress.com/
• http://www.evanstauff.com/
• http://www.busterbeans.blogspot.com/
• http://spikeparrent.blogspot.com/
• http://www.loganandrew.com/
• http://www.crazyforcody.com
• http://www.netnomad.com/is.html
• http://beatingepilepsy.blogspot.com/
• http://katenealecooper.com/blog/
• http://www.overcomingmovementdisorder.com/
• http://www.epilepsywarriors.com/
• http://epilepsy-hope.blogspot.com/
• http://baileybugsjourney.blogspot.com/
• http://michaelsjourneywithepilepsy.blogspot.com/
• http://stratt-attack.blogspot.com/
• http://clayandchayla.blogspot.com/
• http://dog4deeds.com/
• http://oursweetcassidy.blogspot.com/
• http://lauren2-lauren.blogspot.com/
• http://coryamandawright.blogspot.com/
• http://ourlittlerockstars.blogspot.com/
• http://www.charlieclaire.com/
• http://marissasbunny.com/
• http://mycupofawesome.blogspot.com/
• http://inourhouse.org/2013/12/04/my-son-and-infantile-spasms/
• http://marissasbunny.com/who-is-marissa/
• http://www.charlieclaire.com/

If you have a blog about I.S. that I can add to the list above, please let me know!

 

Houston:  West Syndrome Center of Excellence
https://med.uth.edu/pediatrics/divisions/neurology/sub-specialty-programs/west-syndrome-center-of-excellence/

 

 

 

 

Baby Z’s television debut:  http://abclocal.go.com/ktrk/story?section=news%2Fhealth&id=8968373