Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 I am so glad to hear your child is seizure free! Can you give it to him like medication in a syringe (the vanilla) for a couple of days until the chocolate comes in? From: [mailto: ] On Behalf Of Alyssa Nagy Sent: Monday, May 24, 2010 6:24 PM Subject: [ ] oops out of NV Here we are starting our fourth month seizure free!!!!! I screwed up our auto ship and we are out of NV, it will not be here until Thursday........ I have a can of vanilla but neither of us like it. I have put it in ice cream, added chocolate syrup and yuck!! So we are just going to hold our breath until Thursday. I hope I can try to get it in him once a day as he still had seizure control with only two scoops but I am not holding my breath that he will take it. Why didn't I have NV stocked up in my pantry? This time I will have a stock pile!! Please help me by keeping your fingers crossed as we have not gone without it for more than one day... :-( Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 Alyssa, Why didn't you call me?! I have a can of chocolate that you can have tomorrow until yours comes in on Thurs. You u can bring me a choc once u get yours. Stop by the office tomorrow. I'll bring it in. Matt has made such incredible gains; I don't want him to have to go w/o it for even a day!!! Warmest wishes, Barbara , M.S., CCC-SLP www.helpmespeak.com 410-442-9791 Ask me about NutriiVeda! On May 24, 2010, at 7:24 PM, Alyssa Nagy <aw_nagy@...> wrote: > Here we are starting our fourth month seizure free!!!!! I screwed up our auto ship and we are out of NV, it will not be here until Thursday........ I have a can of vanilla but neither of us like it. I have put it in ice cream, added chocolate syrup and yuck!! So we are just going to hold our breath until Thursday. I hope I can try to get it in him once a day as he still had seizure control with only two scoops but I am not holding my breath that he will take it. Why didn't I have NV stocked up in my pantry? This time I will have a stock pile!! Please help me by keeping your fingers crossed as we have not gone without it for more than one day... > > :-( Alyssa > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2010 Report Share Posted May 25, 2010 Barbara comes to the rescue by lending us a can of chocolate NV. Time to make sure I have at least two unopened cans hanging out in the pantry at all times.. Alyssa On May 24, 2010, at 10:33 PM, " Stilwell " <shannonstilwell@...> wrote: I am so glad to hear your child is seizure free! Can you give it to him like medication in a syringe (the vanilla) for a couple of days until the chocolate comes in? From: [mailto: ] On Behalf Of Alyssa Nagy Sent: Monday, May 24, 2010 6:24 PM Subject: [ ] oops out of NV Here we are starting our fourth month seizure free!!!!! I screwed up our auto ship and we are out of NV, it will not be here until Thursday........ I have a can of vanilla but neither of us like it. I have put it in ice cream, added chocolate syrup and yuck!! So we are just going to hold our breath until Thursday. I hope I can try to get it in him once a day as he still had seizure control with only two scoops but I am not holding my breath that he will take it. Why didn't I have NV stocked up in my pantry? This time I will have a stock pile!! Please help me by keeping your fingers crossed as we have not gone without it for more than one day... :-( Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2010 Report Share Posted May 26, 2010 Barbara... too bad we live in Missouri... what a wealth of knowledge you are! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 I am just reading this but have been following the progress. I hope your son is still seizure free? Kate > > Here we are starting our fourth month seizure free!!!!!� I screwed up our auto ship and we are out of NV, it will not be here until Thursday........ I have a can of vanilla but neither of us like it.� I have put it in ice cream, added chocolate syrup and yuck!! So we are just going to hold our breath until Thursday.� I hope I can try to get it in him once a day as he still had seizure control with only two scoops but I am not holding my breath that he will take it.�� Why didn't I have NV stocked up in my pantry?� This time I will have a stock pile!!� Please help me by keeping your fingers crossed as we have not gone without it for more than one day... > > :-( Alyssa > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Alyssa I would really reconsider dropping 's dosage just yet- at least try adding all the scoops to one drink, or be more creative with how you serve it -find a chocolate pudding he really likes -or mix it into other foods he likes. I mean he's been on multiple medications for years for seizures that didn't stop seizures -and I'm sure he didn't always want to take those meds either -but did you cut them in half just because it was a hassle?! No way! But we find something natural that is working and we think it's fine to cut dosage -or see if we can stop it even. I so wish you had a medical doctor like Dr. Tom or one of the others behind nutriiveda http://pursuitofresearch.org/advisors.html that has that knowledge about eastern and western medicine -because even though most of us don't respect ayurveda here in the west or even know what it is -much of the world respects it as medicine- from nature. And speaking of medicine from nature..from what you are saying far better than any western medication tried over the years, and again prior to starting nutriiveda was planned for a partial lobotomy to stop the seizures (talk about a hassle!!!) Does appreciate that? I mean does he know he was just about to have this done and didn't 'because' of the nutriiveda? We don't know the exact scientific reason why the seizures have stopped after all these years but clearly as his doctor plans to continue to lower his meds, and after he hits the 6 month seizure free mark in a few more weeks (OMG!!!) eliminating all meds- the last thing you want is for the seizures to come back because you lowered the dosage. Perhaps it will be fine to keep him at bay -but what about once meds are lowered again? See to me I think it's more than just seizures stopping -I believe neuro repair is happening and why cut the repair crew in half prior to the job being completed? It's obvious that there is something in nutriiveda helping keep the seizures away since isn't the only one now in our group with these results. In contrast to 's doc -'s doc tells her parents under NO circumstances are they to cut 's nutriiveda as they credit it with her neuro repair. http://littlemermaidmelanie.wordpress.com I have below a study I just found from this month. There is no way for me to be sure -but I have a hunch that there is a link between the white matter and nutriiveda based on what this found. Altered brain development found in children with newly diagnosed epilepsy Published: Wednesday, May 19, 2010 - 09:19 in Psychology & Sociology A newly published study reported that children with new/recent onset epilepsy have significantly slowed expansion of white matter volume compared to healthy children over a two year interval. The reduced white matter volume may affect brain connectivity and influence cognition. Results of this study conducted by researchers from the University of Wisconsin School of Medicine and Public Health are now available online and will appear in the July issue of Epilepsia, a journal published by Wiley-Blackwell on behalf of the International League Against Epilepsy. Epilepsy, a common nervous system disorder, frequently develops in early childhood and causes recurrent seizures. Seizures can range from mild staring spells to major convulsions. According to the Epilepsy Foundation there are 326,000 children under the age of 15 with epilepsy in the U.S. More than 45,000 new cases of epilepsy are diagnosed in children each year. A research team, led by Bruce Hermann, Ph.D., investigated the neurodevelopmental changes in brain structure in children with new or recent-onset epilepsy. Thirty-four healthy children (control group) and 38 with new/recent onset epilepsy were enrolled in the study. The epilepsy group contained 21 children with localization-related epilepsy and 17 with idiopathic generalized epilepsy. Children in both groups had a mean age of 12.9 years and underwent magnetic resonance imaging (MRI) at baseline and 2 years later. At the 2 year follow-up, seizure frequency was evaluated. During the prior year, 53% of children with epilepsy were seizure free; 34% reported only one seizure. In the remaining children with epilepsy, 5% reported monthly, 5% weekly, and 3% daily seizures. " Our study determined that children with new or recent-onset epilepsy exhibited an altered brain development pattern characterized by delayed age-appropriate increase in white matter volume, " said Dr. Hermann. The research team found that total cerebral white matter volume increased significantly in the healthy control group over the 2-year period. However, the epilepsy group did not show significant change in white matter volume in the total cerebrum and across all lobes—the difference from normal controls being most pronounced in the frontal lobes. Researchers suspect that the delayed white matter volume increase in children with epilepsy may affect cognitive development by reducing brain connectivity. With altered brain development, children with epilepsy may also experience impaired executive function—mental tasks such as organizing, planning, and paying attention which are commonly reported in people with epilepsy. " Research into the symmetry between patterns of cognitive change and age-appropriate brain development remains to be addressed in childhood epilepsy, " concluded Dr. Hermann. " Further exploration of how subtle neurodevelopmental alterations in brain development affect cognition is needed. Longer term follow-up is also needed to determine whether this finding represents a temporary delay in brain development versus a fixed difference. " http://esciencenews.com/articles/2010/05/19/altered.brain.development.found.chil\ dren.with.newly.diagnosed.epilepsy And while this study is already 2 years old -this clearly demonstrates the importance of good diet to increase in white matter and neuro repair (as I've shared other links and one can easily search for them) High-Energy and -Protein Diet Increases Brain and Corticospinal Tract Growth in Term and Preterm Infants After Perinatal Brain Injury Lyvia Dabydeen, MB, BSa, n E. , MDa, Tessa J. Aston, MSca, Hartley, MSca, Sunil K. Sinha, MD, PhDb, Janet A. Eyre, MBChB, DPhila a Developmental Neuroscience, School of Clinical Medical Sciences (Child Health), University of Newcastle Upon Tyne, Newcastle Upon Tyne, United Kingdom b Department of Paediatrics and Neonatology, Cook University Hospital, Middlesbrough, United Kingdom OBJECTIVE. Our hypothesis was that infants with perinatal brain injury fail to thrive in the first postnatal year because of increased energy and protein requirements from deficits that accumulated during neonatal intensive care. Our aim was to assess whether dietary energy and protein input was a rate-limiting factor in brain and body growth in the first year after birth. METHODS. We conducted a prospective, double-blind and randomized, 2-stage group sequential study and controlled for gestation, gender, and brain lesion. Neonates with perinatal brain damage were randomly allocated to receive either a high- (120% recommended average intake) or average (100% recommended average intake) energy and protein diet. The study began at term and continued for 12 months. Three-day dietary diaries estimated energy and protein intake. The primary outcome measure was growth of occipitofrontal circumference. Other measures were growth of axonal diameters in the corticospinal tract, which were estimated by using transcranial magnetic stimulation, weight gain, and length. RESULTS. The study was terminated at the first analysis when the 16 subjects had completed the protocol, because the predetermined stopping criterion of >1 SD difference in occipitofrontal circumference at 12 months' corrected age in those receiving the higher-energy and -protein diet had been demonstrated. Axonal diameters in the corticospinal tract, length, and weight were also significantly increased. CONCLUSIONS. These data support our hypothesis that infants with significant perinatal brain damage have increased nutritional requirements in the first postnatal year and suggest that decreased postnatal brain growth may exacerbate their impairment. There are no measures of cognitive ability at 12 months of age, and whether there will be any improvement in the status of these children, therefore, remains to be shown. http://pediatrics.aappublications.org/cgi/content/full/121/1/148 And again to share with any new doctors you see (hint hint) http://pursuitofresearch.org/NutriiVeda_Information.pdf There are some suggestions on how to serve nutriiveda outside of shakes here, http://pursuitofresearch.org/faq.html#serve Just my opinion that if something isn't broken- don't try to fix it...at least until you get him off all the seizure meds for a few months. As they say in ayurveda...just some " food for thought " ===== Quote Link to comment Share on other sites More sharing options...
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