tag:blogger.com,1999:blog-31461418.post873844405940209365..comments2023-09-07T20:24:11.937-04:00Comments on Ryn Tale's Book of Days:: Never a dull momentKathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-31461418.post-60479345946148782832008-11-07T16:35:00.000-05:002008-11-07T16:35:00.000-05:00The diet referred to is the Modified Atkins Diet f...The diet referred to is the Modified Atkins Diet for seizure control. There is a super informative yahoo group called atkins4seizures. It is based on the work done by Dr. Kossoff out of Johns Hopkins.<BR/><BR/>I don't know how it would work for you since the underlying theme is FAT heals the brain. Rich. I will vouch for its effectiveness. My daughter, 16, started on the diet on August 27. One month later we began weaning off of 1000 mg. of depakote. As of last Friday, she is completely weaned. She has had one breakthrough seizure 2 weeks ago. Much milder, shorter, and with no after fatigue. Other than that, no seizures. No depakote. No brain fog, hair loss, depression, or fatigue. <BR/><BR/>If you google Dr. Kossoff, Atkins, you'll get alot of info. Also, Matthews friends, and several sites related to Atkins for Seizures where you buy an online book. But the first references are all free. Many of the MAD-ers have other disabilities as well.<BR/><BR/>Best wishes on your journey to find wholeness and health for your child.<BR/><BR/>PamPamelahttps://www.blogger.com/profile/15211543341698196810noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-242270445363054162008-08-27T09:58:00.000-04:002008-08-27T09:58:00.000-04:00Ok, I wasn't talking about the Keto diet, but now ...Ok, I wasn't talking about the Keto diet, but now I'm going to dig around the board and see if I can find the link that someone posted about "modified Atkins." Those boards could be printed and sold for all the information they contain.Katyhttps://www.blogger.com/profile/02189007616883663434noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-28781369891254007342008-08-27T01:44:00.000-04:002008-08-27T01:44:00.000-04:00Sleep-deprived moms don't cause seizures. If they...Sleep-deprived moms don't cause seizures. If they did, seizure-free kids would be a rarity.<BR/><BR/>Jake does sometimes get "disorganized" after a seizure--he's not unwell, but he seems to lose some motor-planning skills and other sequencing abilities for a few days or maybe a week after a seizure, and then it comes back, slowly. He seems so frustrated during those times! It's hard to be patient--but so far, the skills have always come back, and sometimes he even gets a little "bump" (or so it seems). <BR/><BR/>And Jake definitely has seizures related to growth spurts--it's pretty much the only way we know for sure that he needs a dosage change, because he gets a smallish dose of his meds for his weight, and they don't blood-test for levels with this one.Penny L. Richardshttps://www.blogger.com/profile/00102296070193780691noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-23792063485497392882008-08-26T23:24:00.000-04:002008-08-26T23:24:00.000-04:00I'm so sorry about the seizure. I hope you can get...I'm so sorry about the seizure. I hope you can get everything worked out. I'm glad Ellie is doing some finger spelling now. Spelling and reading seem to be her link to the world.Anonymoushttps://www.blogger.com/profile/14299493731311058061noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-24783906654378438862008-08-25T21:59:00.000-04:002008-08-25T21:59:00.000-04:00Big Hugs. Seizures are so scary.We love that she i...Big Hugs. Seizures are so scary.<BR/>We love that she is finger spelling. Too smart.BusyLizzyMomhttps://www.blogger.com/profile/09116803603107554804noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-31354172773545280702008-08-25T11:01:00.000-04:002008-08-25T11:01:00.000-04:00Oh, Sweetie, I'm so sorry you are going through th...Oh, Sweetie, I'm so sorry you are going through this hard time. When it rains it pours. Please don't blame yourself. It seems to be the mode of the mothers of our era to blame ourselves for our childrens' suffering, both great and small. I have noticed with my second daughter how much less worry and guilt I feel - simply because I have been through mothering before and realize how much is out of my control. I know that my situation is very different than yours, but I believe that as mothers we must simply show up and do the job of the moment. What other choice do we have? We make choices in the moment based our best intentions. I know that you have the highest intentions (in your beautiful, and as you say flawed, human form) so the second guessing of passed moments has no place. <BR/><BR/>Love to you and Dave and Ellie.juliehttps://www.blogger.com/profile/18428871003801512629noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-72082119585420619692008-08-24T15:13:00.000-04:002008-08-24T15:13:00.000-04:00Hi, Kathrynsucks that you have to go throu this ag...Hi, Kathryn<BR/>sucks that you have to go throu this again. Four weeks ago my daughter seized for the very first time, it was terrible. Actualy, it was a status epilepticus, she seized for almost 2 hours and then was in an induce coma for 5 to 6 days... Awful. Luckly, she is now as she was befor the seizure.<BR/><BR/>I see Birdie hasn't reply to you yet. I'm also an ABR mother, so I guess she is talking about the same things I've heard!!! The diet is a ketogenic diet, a lot of kids have had good result with this. It is even a treatment included in medical research about epilepsy. You should do it under a doctor supervision.<BR/><BR/>And the IAHP is the Institutes for the Achievement of Human Potential (www.iahp.org). They offer a good rehabilitation program specially for the cognitive area. They dont like the drugs, neither does ABR and I think any parent... I HATE to have started with Depakene... Hope that ABR will help me to take it of in a couple of months.<BR/><BR/>Hope you both are doing better now. Big hugs.Mamá Terapeutahttps://www.blogger.com/profile/11503656664095581047noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-30912925908805734262008-08-24T10:19:00.000-04:002008-08-24T10:19:00.000-04:00I am so sorry to hear Ellie had another seizure/91...I am so sorry to hear Ellie had another seizure/911 call. And I also know the feeling of hoping it's behind us, only to have it strike again...<BR/><BR/>You did everything right -- you are a terrific mommy and you did NOTHING to contribute to the seizure...okay?<BR/><BR/>Sending our love and lots and lots of finger spelling Ellie's way! <BR/><BR/>Angela<BR/><BR/>PS -- Bird, is it the Ketogenic diet? Or Keto for short?Angelahttps://www.blogger.com/profile/05641799047603535415noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-68203587725230265462008-08-24T09:52:00.000-04:002008-08-24T09:52:00.000-04:00Dear Kathryn, I am so, so sorry to hear that swe...Dear Kathryn,<BR/> I am so, so sorry to hear that sweet Ellie has had another big seizure, but glad to hear that this one wasn't AS bad. I personally get terrible migraines which my neuropsyche has me on Lyrica and Keppra for (he believes based on my trigger pattern, nausea, and semi-comatose state after that they are some sort of subliminal temporal lobe seizure activity--I was already on these meds when I first had an EEG and it was normal, but I did not at that time have a migraine and was premedicated and not sleep-deprived since it was done while I was in Club Med for something else, so who knows). I think it is entirely possible that the sleep disturbances are to blame at least in part; since I had a series of sleep studies and went on Mirapex for severe RLS and have been sleeping better I have barely gotten migraines at all. And there IS, after all, a reason they have you come for EEGs sleep-deprived. Lack of sleep=increased possibility of seizure activity. And I really don't think you are to blame for the sleep disturbances--Ellie seems like she's just going through one of those phases.<BR/> The other thing I thought of in reading this (I have three special-needs kids so I am an armchair pediatrician but am not in fact an MD so take this with a grain of salt) is that since Ellie'e recent growth spurt perhaps she has "outgrown" her dosages on some, if not all, of her meds. We recently went through this with my youngest, who has severe GI motility issues and suddenly after a long period of doing fine (and GROWING!) started getting very "backed up" and vomiting again. I was freaking out, thinking "oh no, the Neocate isn't working any more, the child has gotten WORSE!" and then I read a post by another special-needs mom about her son outgrowing his meds (Depakote, funnily enough) and starting to have increased problems as a result. So per our GI doc I increased the dose of Miralax that the child receives daily via G-tube by two grams et voila! Daily poos again, and no more throwing up or residuals. I also gradually increased the volume of the bolus feeds of Neocate, since the baby (I really ought to stop saying that, the child turns three in a couple of weeks but is my BABY!) had been getting fussy before feeding time. And sure enough, no more fussiness. Could Ellie's sleep disturbances perhaps be due to reflux? As she's gotten bigger she may have "outgrown" her reflux meds, which could certainly lead to sleep issues. I myself have a hiatal hernia and severe GERD, and if I forget my bedtime meds wake up with a VERY sore throat, so perhaps her throat is hurting and the refluxing is disturbing her sleep? Just a couple of theories for you. I didn't think of adjusting doses after a growth spurt until I read that post and then felt like a total moron for not thinking of it, but it's not something that automatically springs to mind as you care for your child as a non-medical professional.<BR/> Since Ellie HAS grown, perhaps the increased Depakote will not affect her as severely, and maybe if you go up a bit on the reflux meds and she gets back into a better sleep pattern you could reduce the dose by a tad, just 50 mg or something, if it starts "zapping" her. And the last thing...if Ellie is allergic to Sulfa drugs (Omnicef, etc.) do NOT let them give her Lamictal or she could develop Stephen-Johnson's Syndrome (which I have had and do not recommend). There is a connection between Sulfa drugs and Lamictal that some doctors forget about. Keppra may be a possibility for her--I take it and while it initially "zapped" me just a LITTLE I have now adjusted and don't even notice it.<BR/> Best of luck, and go easy on yourself; you're doing your best and you're under a TON of stress.Elizahttps://www.blogger.com/profile/13788282464956879318noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-680114023617019342008-08-24T08:51:00.000-04:002008-08-24T08:51:00.000-04:00Thanks Christa!Bird - what is IAHP? and do you kno...Thanks Christa!<BR/><BR/>Bird - what is IAHP? and do you know the name of that diet you referenced - have not heard of it. Not sure it would work for Ellie because she is very intolerant of any richer foods especially meat. But definitely worth looking into!Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-51599182610061353132008-08-24T00:16:00.000-04:002008-08-24T00:16:00.000-04:00I think you should pat yourself on the back. Than...I think you should pat yourself on the back. Thanks to you she seized safely in her bed and not on a hard floor. <BR/><BR/>Is it possible that her lack of sleep actually caused the seizure? I've read in some of the epilepsy forums that lack of sleep can trigger a seizure. Is it possible to prescribe a small child something like ambien? Or maybe a small dose of ativan if she's having trouble sleeping?<BR/><BR/>Also, I know that you are not an ABR person, but there are several parents on there who have been to IAHP, which is vehemently against seizure medicine. Many of their children are on "modified atkins" to control seizures. <BR/><BR/>Ok, that's it. Prayers for you and Miss Ellie. The first time I ever read your blog was during the last seizure you referenced. Since then my own baby has had his share. THey suck SO much, but I remind myself that the kid has hardware in his brain--is it any wonder sometimes thing go wrong?Katyhttps://www.blogger.com/profile/02189007616883663434noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-21754829852385585492008-08-23T23:51:00.000-04:002008-08-23T23:51:00.000-04:00Hi Kathyrn,I LOVE that Ellie is doing that finger-...Hi Kathyrn,<BR/><BR/>I LOVE that Ellie is doing that finger-spelling. What a smart cookie she is.<BR/><BR/>I HATE that she had another seizure.<BR/><BR/>I hear your pain and frustration about worrying that you could have done something to bring it on or prevent it. You can second-guess yourself about that, but your intentions are always good, sweet, and nurturing of Ellie. I wouldn't want you to spend any time second-guessing that.<BR/><BR/>Go easy on yourself. The more you beat yourself up, the less you'll have for that Angel Girl.<BR/><BR/>--Christasleepy_mamahttps://www.blogger.com/profile/12688852600391091691noreply@blogger.com