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(and yes, it's like the 4th comment I've left on your blog today- I just found it and love it!) <br /><br />My little brother was a malpractice victim as an infant and was left with brain damage that caused record setting epilepsy. Like your little girl, he had hundreds of seizures a day, most of them grande mal. All the seizure meds in the world never seemed to make a difference- at one point, he was on enough for a 300lb man. He was 4. My mom finally realised she was seeing pieces of the pills, undigested in his diapers, sot hey tested his digestive tract. Turns out he had gastroparesis (stomach empties too slow, so meds don't absorb right) plus Cystic Fibrosis (in addition to lung issues, he didn't produce digestive enzymes). Once they put him on enzymes, they were able to cut his anti-epileptics dramatically and still get much better control on everything. So if her digestion has never been tested, it might be worth checking it out, to see if that's why the meds aren't covering it. <br /><br />Any which way, I hope you guys find a solution for these new seizures. My neurological disease causes lack of quality sleep and it bites. Cassiehttps://www.blogger.com/profile/06143599941651150754noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-30334514882374234362014-01-23T11:13:10.432-08:002014-01-23T11:13:10.432-08:00Thank you for reading and for your comment. I'...Thank you for reading and for your comment. I'm sorry you have had to go through this too!Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-25132530226850776022014-01-23T11:11:48.751-08:002014-01-23T11:11:48.751-08:00Thank you so much!!!Thank you so much!!!Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-19544996939054730292014-01-23T10:34:53.619-08:002014-01-23T10:34:53.619-08:00Thank you for writing this letter. As a mom of a D...Thank you for writing this letter. As a mom of a DD young adult I have been told this many times along the way. It's wrong, it's offensive and should not be tolerated. I appreciate every word you wrote though I am sorry that you are still receiving this ridiculous message.studionn portland orhttps://www.blogger.com/profile/09670170444217894827noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-47234397828533323862014-01-18T09:02:37.732-08:002014-01-18T09:02:37.732-08:00Hi Beth - of course I remember you! Thank you for ...Hi Beth - of course I remember you! Thank you for writing! I'm so sorry for all you have been through - thank you for sharing part of your story here! I will be sure to update here on my blog if we do go the marijuana route - we are just waiting for our EEG at the end of this month to see if the current meds are working. Thanks for sharing how you have been positively impacted - there are so many encouraging stories out there! I'm sorry too for your Kaiser experience and struggles with therapy - as if things are hard enough with sensory issues... I wish the system were easier on families already going through so much. Please stay in touch! Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-37884069123007073572014-01-18T09:00:01.877-08:002014-01-18T09:00:01.877-08:00*have been inspired*have been inspiredLauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-84769476285989189352014-01-18T07:52:48.184-08:002014-01-18T07:52:48.184-08:00Hi Laurie, I don't know if you remember me but...Hi Laurie, I don't know if you remember me but I went to high school with Wes. First off, you are an amazing and inspirational mom. Julia is so lucky to have you. I'm glad someone mentioned cannabis oil, and Dr. Shackleford's daughter chimed in. He is my doctor and he is such a compassionate and caring man. I sustained a mild traumatic brain injury almost three years ago and seriously credit medical marijuana with saving my life. I was in intense pain, suffering from horrible insomnia, many neurological symptoms, hallucinations, and I believe I was having slight seizures. All that to say, I'm glad you are considering it as a treatment option. It has made a huge difference in my recovery.<br /><br />Also, kaiser sucks. We had them for years and both my kids have sensory processing disorder and they approved four occupational therapy visits each. That's basically enough time to get comfortable with the therapist. We didn't even go as we couldn't afford to pay out of pocket after that. It was so disheartening. The language they've used in your case is simply wrong. I understand what others are saying from an intellectual place but as a fellow mom I am outraged with you. Keep fighting! Anonymoushttps://www.blogger.com/profile/10183472509698832984noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-63338461755655102562014-01-18T06:33:27.740-08:002014-01-18T06:33:27.740-08:00Ellen, thank you for reading and commenting! I am ...Ellen, thank you for reading and commenting! I am a little star struck - I've loved your blog and been inspired by your writing for a long time now. Thank you for your kind words and advice - and yes, my dad is pretty great - we have such a loving support system around us which is such a blessing!!Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-12371706717117064712014-01-18T06:25:18.464-08:002014-01-18T06:25:18.464-08:00Amen Kara!Amen Kara!Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-10380970678549198722014-01-17T19:00:51.338-08:002014-01-17T19:00:51.338-08:00Well said, I would have felt the exact same way if...Well said, I would have felt the exact same way if I read that response. There's good advice here. It's important for the therapist/neurologist/developmental pediatrician or whoever is on team Julia Anne to document the progress (and to align it with the criteria you are provided by KP once you ask). My neurologist has made it a point to note, in letters he has written, that OT now will prevent a lot more down the road. I have done much battle with the insurance company, and won; sometimes, it's the-squeaky-wheeled-gets-oiled phenomenon and sometimes, I provided an irrefutable response to their claims. Good luck with this one. Oh, and I LOVE that your dad leaves comments like this. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-42058989606074637312014-01-17T07:31:44.951-08:002014-01-17T07:31:44.951-08:00Beautifully said! Our children perform miracles o...Beautifully said! Our children perform miracles on a daily basis and it is NOBOBY'S right to measure their potential-particularly when they have never met them. Our precious children have unlimited potential and worth and they make this world a better place. I hope you win your fight against this injustice.Kara Harrishttps://www.blogger.com/profile/05874443943441062431noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-23752583263425779622014-01-16T21:15:53.220-08:002014-01-16T21:15:53.220-08:00Bravo! Bravo! Your daughter is so lucky to have su...Bravo! Bravo! Your daughter is so lucky to have such an "advocate." Laurie, I am so proud of you for speaking up for your child & for all the thousand special children who are often affected by the "callous" decisions of these capitalistic Health Insurances whose only "interest is make profits" without caring who they hurt.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-6819825592850901412014-01-16T20:25:11.590-08:002014-01-16T20:25:11.590-08:00(By the way, my dad shows up on the video at 9:22 ...(By the way, my dad shows up on the video at 9:22 :) )Anonymoushttps://www.blogger.com/profile/17403212579348959898noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-75448643630299029852014-01-16T20:24:07.401-08:002014-01-16T20:24:07.401-08:00Hi Laurie, I am very glad to hear you are thinking...Hi Laurie, I am very glad to hear you are thinking about this treatment. I don't know where you are in the world, but my father has successfully helped a little girl in Denver, Colorado get this treatment for her seizures. It was recently featured on CNN with Sanjay Gupta, and my dad was interviewed. In fact, here's the link: http://www.youtube.com/watch?v=Z3IMfIQ_K6U If you want to get in touch with my dad, he is very knowledgeable and I think he would love to talk to you. His website is www.amarimed.com - and you can tell him his daughter sent you. I really hope you will consider this for your daughter, based on the amazing results other children are having. Anonymoushttps://www.blogger.com/profile/17403212579348959898noreply@blogger.comtag:blogger.com,1999:blog-6141831955311788273.post-88727044910003052922014-01-16T19:56:01.281-08:002014-01-16T19:56:01.281-08:00I love you Dad!I love you Dad!Lauriehttps://www.blogger.com/profile/08808664497045014066noreply@blogger.com