tag:blogger.com,1999:blog-6645130.comments2023-07-02T11:59:05.334-07:00Jenelle's JourneyKellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.comBlogger1369125tag:blogger.com,1999:blog-6645130.post-50015307264485763562023-07-01T23:50:38.270-07:002023-07-01T23:50:38.270-07:00Kelly, you and Brett have honed the ulitmate careg...Kelly, you and Brett have honed the ulitmate caregiving skills-compassion, deep love, critical thinking, astute decision-making, persistence, loyalty, research, questioning, unbreakable family bonds, and all with the stamina of endurance athletes. It is a thrill to watch Jenelle's Journey and see the family of four (and many more when you count all of your kindred spirits in support groups) who does such great work together.I am so sorry for the many gaping losses you have suffered in such a short time and praying for an optimal outcome for Janelle's upcoming surgery.Kelly von Hemerthttps://www.blogger.com/profile/14582213528796567488noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-3303032955494226332021-07-20T00:38:41.308-07:002021-07-20T00:38:41.308-07:00My son was diagnosed with a rare form absence stat...My son was diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through herbal medication. I read awesome stories of people whose condition were worse . But due to numerous testimonies. I was more than willing to try it. I contacted the doctor Gabriel, and my son used the Nectar herbs. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The Nectar medicine worked without any trace of side effects on my son. totally cure. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using nectar medicine and anyone who suffers from seizures can be cured. Email dr.gabriel474@gmail.comSanchez Thompsonhttps://www.blogger.com/profile/08727691369410682155noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-61139404987756745572021-01-10T06:54:18.624-08:002021-01-10T06:54:18.624-08:00Come back and update.... :)
Come back and update.... :)<br /><br />Merittnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-73362582002985601422020-09-04T07:57:04.955-07:002020-09-04T07:57:04.955-07:00Thank you for the update.Thank you for the update.Celianoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-77625012208603729652019-04-17T22:54:19.999-07:002019-04-17T22:54:19.999-07:00Thank you for the update. CeliaThank you for the update. Celiacelia segursonnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-53463870201211888152018-12-30T12:14:22.117-08:002018-12-30T12:14:22.117-08:00We are still in the holding pattern for Epidiolex ...We are still in the holding pattern for Epidiolex for Mira - fingers crossed we will be able to try it within the next few months. Please post how Jenelle is doing on it!<br /><br />Marc<br /><br />missmiras.blogspot.com<br />Marchttps://www.blogger.com/profile/07615669224347616411noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-13457556982694660332018-04-28T07:00:00.794-07:002018-04-28T07:00:00.794-07:00The most wonderful parents to the sweetest girl!The most wonderful parents to the sweetest girl!Kelly von Hemerthttps://www.blogger.com/profile/14582213528796567488noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-13215627915702118722018-04-28T06:59:25.505-07:002018-04-28T06:59:25.505-07:00The most wonderful parents to the sweetest girl.The most wonderful parents to the sweetest girl.Kelly von Hemerthttps://www.blogger.com/profile/14582213528796567488noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-62771002416345021722017-05-06T23:52:58.463-07:002017-05-06T23:52:58.463-07:00My son recently started having grand Mal seizures ...My son recently started having grand Mal seizures at 16 years old. We were prescribed Kepler. We decided NOT to take the medicine and go with a Modified Atkins Diet that entails feeding our son 15 carbs a day with lots of healthy fat. He eats a lot of grass fed beef, free range eggs, organic low crab veggies and is doing fantastic! We could tell a difference in him by the 3rd day. This is not alternative or junk science. Dr. Lewis hill at Johns Hopkins has been championing this diet for years and has been really successful. Doctors are really resistant to this therapy but it works!. Read "Grain Brain" for why it works. He also takes taurine which helped stop the night time teeth grinding, jerking, and unrest in his sleep (also known to stop seizures). And he takes cur cumin as a brain protestant that raises seizures.one day came across Albert post thanking Dr Lewis hill for curing his son seizure problem, and i got the contact of Dr Lewis hill i quickly contacted him then he made me to know that the medication is 100% permanent cure, and that was how i got the medicine which i used for my son, after which i took my son for medical test It worked! Over a year now, my son have not show any symptoms of seizure and I believe my son is cure if you need his help email him on drlewishill247@gmail.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-75372737736419468682017-02-22T14:59:54.527-08:002017-02-22T14:59:54.527-08:00 So happy for all of you Celia So happy for all of you CeliaCecelia segursonnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-85090879936604182542016-10-05T12:22:54.442-07:002016-10-05T12:22:54.442-07:00Hi Hoda! Dr. Shields has retired, but UCLA is sti...Hi Hoda! Dr. Shields has retired, but UCLA is still a great place for Infantile Spasms. Here is the number to get an initial appointment 310-825-6196.<br />We have not been with UCLA for 2 years, so I'm really not familiar with the wait time, but if you mention a diagnosis of IS, they usually try to fit you it as time is of the essence. Best wishes!<br />Kellyhttps://www.blogger.com/profile/17256371707801041596noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-69546370885137032502016-10-05T08:52:32.162-07:002016-10-05T08:52:32.162-07:00Hi Kelly
I'm so happy to have found you! My n...Hi Kelly <br />I'm so happy to have found you! My nephew is 7 months and they has IS. <br />Wanted to know if Dr. Sheilds is still in UCLA, and if yes how do we get an appointment to see him ? Is it a long wait ? Any direct number ? <br />I really aprraciate your response .<br />Thank you so much . <br />Hoda Anonymoushttps://www.blogger.com/profile/03682827909962736929noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-89902107410943199102016-08-15T22:08:22.525-07:002016-08-15T22:08:22.525-07:00What a great tribute to your Dad Kelly. Much love ...What a great tribute to your Dad Kelly. Much love to you! Robin (Baba)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-69481226147886206302016-03-28T11:53:03.999-07:002016-03-28T11:53:03.999-07:00Wow! That is great news! I'm so glad you are s...Wow! That is great news! I'm so glad you are seeing improvement with it and hopefully it will only get better!! :)Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-26705270745661748292016-03-10T19:55:01.269-08:002016-03-10T19:55:01.269-08:00They found the same variant with Mira - TPP1, but ...They found the same variant with Mira - TPP1, but since it was heterozygous, we were told it probably wasn't relevant. Her neuro said to completely rule out NCL, they would have to do a skin biopsy. You can do a search on Mira's site for TPP1 to read what they found. Thanks for sharing!<br /><br />missmiras.blogspot.comMarchttps://www.blogger.com/profile/07615669224347616411noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-70728926153933805832016-02-17T11:15:08.303-08:002016-02-17T11:15:08.303-08:00Sounds like great possibilities!Sounds like great possibilities!mlagesonhttps://www.blogger.com/profile/07147622534091612967noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-43408936462144478142016-02-16T20:54:17.814-08:002016-02-16T20:54:17.814-08:00love you all! xoxoxoxo love you all! xoxoxoxo Kelly von Hemerthttps://www.blogger.com/profile/14582213528796567488noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-21244802381429716572015-11-26T10:49:05.550-08:002015-11-26T10:49:05.550-08:00It's just an overgrown chicken. My Mom always ...It's just an overgrown chicken. My Mom always started hers at the crack of dawn. Mine went in around 9am and we're eating at 2:00.Lmerringnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-74754158295158373902015-08-14T21:59:13.748-07:002015-08-14T21:59:13.748-07:00Thanks for sharing, what a truly special time. So...Thanks for sharing, what a truly special time. So glad that you decided to do the wish trip. ValerieValerie Fnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-10170409769306558792015-06-03T23:34:48.036-07:002015-06-03T23:34:48.036-07:00I really enjoy hearing about your Disney World adv...I really enjoy hearing about your Disney World adventure.Celianoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-63084822341934054982015-04-27T23:28:55.538-07:002015-04-27T23:28:55.538-07:00She is beautiful and that is your fault! I always...She is beautiful and that is your fault! I always love reading your blog, you know my Sydney and Janelle have had similar challenges all along, this is fastinating to hear. It is amazing what medical advances we are making and I've always have said the same about testing and I too now look at it as it might not help my child, but it will help others down the road! Thank you for your blog. You always find the positves. You are an awesome mom!<br />💞Tina ~Sydney's Mom<br />Tina Schumachernoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-42003251936126075122015-03-19T09:26:49.952-07:002015-03-19T09:26:49.952-07:00Sending HUGS from her classroom!
We all miss her -...Sending HUGS from her classroom!<br />We all miss her - especially Sandra! <br />Thoughts and Prayers for Jenelle and her family!<br />Whitney, Sandra, Christine, LeeAnn and Rena - kiddos too :)<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6645130.post-60008747648618447992015-03-10T21:25:05.260-07:002015-03-10T21:25:05.260-07:00Oh Lordy! How well I know this dance! I'm so g...Oh Lordy! How well I know this dance! I'm so glad everything worked out and that you are all back home where you belong! Andrew has been on a Depakote/Lamictal combo for several years and we've gotten to the point where we'll need to make some changes. All our love and prayers!Jo Ashlinehttps://www.blogger.com/profile/11995779443208564592noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-48718672603727744012015-03-05T16:03:12.624-08:002015-03-05T16:03:12.624-08:00Kel, your unending empathic advocacy for Jenelle a...Kel, your unending empathic advocacy for Jenelle and your beautiful relationship with her is a triumph of tender and fierce love in action.Kelly von Hemerthttps://www.blogger.com/profile/14582213528796567488noreply@blogger.comtag:blogger.com,1999:blog-6645130.post-59807100174065277582015-01-12T17:23:59.514-08:002015-01-12T17:23:59.514-08:00Hi there,
We started our jounrey in late 2011, s...Hi there, <br /><br />We started our jounrey in late 2011, shortly after Mary Zupanc came to CHOC. We fell in her lap after ER admittance, and met her on a Sunday afternoon to get life changing news. But she was very frank, and after about 2 weeks of data collection, predicted her case to a T. several years later, it has played out like she described. I was saddened to hear she stepped away from CHOC, but then returned in a a supervisory role. I hope everything is okay? We sent a Christmas card this year and no response, and my contacts from years ago seem to have moved on or something has changed? Is Stacey still the APRN in the office?<br /><br />Anyway, I am enjoying your blog. Thank you for your effort here. <br /><br />Ken LiningerAnonymoushttps://www.blogger.com/profile/01251252711592432750noreply@blogger.com