tag:blogger.com,1999:blog-31461418.post116647387091068850..comments2023-09-07T20:24:11.937-04:00Comments on Ryn Tale's Book of Days:: Nutrition and the Brain Damaged Child Part II:Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-31461418.post-1166636499523779642006-12-20T12:41:00.000-05:002006-12-20T12:41:00.000-05:00Hi Jacqui and Emma,Here is Ellie's seizure history...Hi Jacqui and Emma,<BR/><BR/>Here is Ellie's seizure history:<BR/>One at birth<BR/>One during her PDA ligation at one week old<BR/>1 during a brain surgery gone bad at 2 months or -1 month<BR/>Around this same time abnormal eeg with sharp focal waves indicating seizures.<BR/>One year later she her eeg showed up normal and 2 months before this her reflux has weaned her off the pheono barb.<BR/><BR/>Last May when Ellie was 3years old and 7 months she was diagnosed with seizures again but I am pretty sure they were happening since she was 3. They were subtle at first and got more obvious. They seem to be controlled by Depakote at the moment. When she developed symptoms we got her another eeg and this time it showed the sharp focal waves again and normal activity.<BR/><BR/>Our neurologist told us that kids with anoxic brain injuries like Ellie, if they are going to get seizures will do so between the ages of 3 and 5. <BR/><BR/>But your comments and Emma's above remind me of one of the heuristics we learned in the NICU about asking the same question of three different people and trying to piece together the truth from the 3 different answers you will get.<BR/><BR/>Linda Scotson at Advance told us the seizures were due to the increased blood flow to Ellie's brain from us building up her diaphram and circulatory system. The increased blood flow would then start to flush capillaries in her brain of toxins left over from the bleed. Each time a toxic block in the vessels are flushed a seizure might occur.<BR/><BR/>We are not sure about that but it's one more answer to the question of why.<BR/><BR/>Our neurologist told us that it could be because Ellie's brain is still growing and developing (she gained 2 centimeters in head circumference in 6 months and not from hydrocephalus). She also told us that in one year we will do another eeg and if it is "more" normal we can wean her off the meds.<BR/><BR/><BR/>Gotta go as the little miss is up from her nap...Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166624923623420182006-12-20T09:28:00.000-05:002006-12-20T09:28:00.000-05:00Jacqui/Kathryn - I don't have seizures and have ne...Jacqui/Kathryn - I don't have seizures and have never had seizures (that I know of, anyway) but I don't think you can ever be "in the clear". There is something of a link between CP and epilepsy and I know several CP-ers in their twenties who developed epilepsy or other forms of seizures at that point. I actually accept that I will more than likely develop it at some point in my life being that I have worse clonus and other CP symptoms now. But it does seem to be quite common for CP symptoms to deteriorate once you hit twenty something. *sigh* I hope by the time I am very much older (or at least, by the time your kids are heading for their quarter of a century mark as rapidly as mine is approaching) we will know something more about CP in adults.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166570027769446052006-12-19T18:13:00.000-05:002006-12-19T18:13:00.000-05:00You could be right on the protein issue Kathryn. ...You could be right on the protein issue Kathryn. I'll have to keep an eye on it. For the past two nights he has slept through and I don't know what I've done right for this to happen.<BR/><BR/>Slightly off subject, but regarding Ellie's seizures. On my calculations, she was two and a half before she had her first one. Is this right? And has the diet helped control them or is she on medication as well?<BR/><BR/>We were always told that if we got to 3 without seizures, we would be in the clear. Then another family's son had his first seizure at 3 and a bit and the Drs moved the goal posts to 5 years old. Its something that always sits in the back of my mind.<BR/><BR/>We were also told to keep Moo on the thinner side but like most prems, Moo is not even on the scale for his actual age so we first have to get him there. The physio has also told me that it is better if he stays shorter. My family have long limbs and apparently that isn't good for co-ordination - as if we can do anything to change it anyway.<BR/><BR/>Thanks for the post Kathryn!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166537212129060372006-12-19T09:06:00.000-05:002006-12-19T09:06:00.000-05:00Emma, No worries. I am glad you brought it up. It'...Emma, No worries. I am glad you brought it up. It's a sensitive spot for me and something I am passionate about. I am just so glad Ellie is here. It really kills me when I see parents of any child not totally appreciating their kid as they are or worse doing bad things to them emotionally or otherwise. It's good that you made that comment just in case a parent reads what I wrote and thinks it is about being thin versus being healthy.<BR/><BR/>Hey- I was able to get onto your blog and read it - yeah! I like the new header if it's new, not sure.Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166535946869749122006-12-19T08:45:00.000-05:002006-12-19T08:45:00.000-05:00Kathryn, I didn't mean or think anything bad about...Kathryn, I didn't mean or think anything bad about the above comments, I just thought it was a valid point that people need to be aware that the need for CP and low weight at times can lead to further problems. It's not an area that had caused me problems but there are other similar ones that really F***d me up as I was growing up so I'm very sensitive about them. I'm sorry if I upset or worried you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166490989592319562006-12-18T20:16:00.000-05:002006-12-18T20:16:00.000-05:00Comments don't allow links so here is the www. to ...Comments don't allow links so here is the www. to Lisa's post about organic food co-ops.<BR/><BR/>http://twinklelittlestar.typepad.com/letter/2006/10/reader_request_.html#commentsKathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166490919889165822006-12-18T20:15:00.000-05:002006-12-18T20:15:00.000-05:00Hi Emma,Thanks for your comments. First of all org...Hi Emma,<BR/><BR/>Thanks for your comments. <BR/><BR/>First of all organic foods do not have to be expensive. Many organic farms sell their products in the summer for the same prices non organic farms do if you have access to farm stands. In the winter you can get great organic foods from co-ops. Lisa Ferris describes how this works very well in her post about it here. <BR/><BR/>Secondly, do you hear the echoes across the chasms and high peaks of the blogosphere of me yoddling out – “THAT’S NOT WHAT I MEMEMEMEMEANNNNNNTTTTTT!” Regarding the cp and weight issues? Your friend in Spain sadly sounds like she has some serious issues with anorexia. I am sensitive to even slight association with being a clueless parent with some screwed up ideal weight scenario that I then mercilessly project onto my poor offspring. <BR/><BR/>But you do make a good point about knowing the difference between the effects of nutrients not getting absorbed and low weight due to cp and the usual weight issues that all of us deal with. I agree with you that knowing the difference is critical.<BR/><BR/>I think you have hit on an important point about your friend in Spain that people, especially young women, are no less vulnerable to the same bullshit about weight and being model thin that the rest of us are. (You might be thinking Dah! And I agree.)<BR/><BR/>I think one of the best ways a parent can NOT give their child issues about weight is to not always be commenting on their child’s weight. My parents were always commenting on my weight and it did give me a serious complex about it.<BR/><BR/>But I take back my note on saying people with CP are better off on the thin side because all I really know about is dealing with my own child with cp and the doctors and nutritionists who want to beef her up at all costs medical paradigm. That is totally different from an adult person with cp who can eat by mouth and make his or her own choices. My concern in writing these posts is to show parents that there is another way. I am concerned that the medical community instead of looking at nutrition differently bullies many parents into giving their kids unnecessary surgeries. <BR/><BR/>The medical paradigm takes a weight-by-numbers approach and arbitrarily applies this to all children. They will do anything like installing g-tubes and fundos and j-tubes to get them to some ideal weight for age ratio that often does not make sense for children with brain injuries. We were told Ellie had failure to thrive and that it was due to things we were doing wrong as described in my first post. We were bad parents for not subjecting her to the nissen fundoplication that would ensure she could not longer burp or vomit or even swallow well.<BR/><BR/>The difficult thing about discussing weight especially among women is that it is so loaded. I tried to make it clear in my post that this discussion was not about being thin for thinness sake. It's about giving the person proper nutrition so that their body can find it's own best weight. If that person happens to have a naturally fuller figure and their diet of whole foods permits this - that is exactly what is right for their body. If they are naturally thin then that's what's right for their body.<BR/><BR/>God forbid we give Ellie any self-esteem problems over weight on top of her other issues. The discussion I meant to begin was about nutrition, not about the horrors of societal female body image. <BR/><BR/>Lastly, I remember Lisa Ferris apologizing in a post for the direct tone of voice she used. I didn’t mind it. But now I see where being confident can sound overly authoritative. I am not a nutritionist and Dave and I eat sugar and meat and fatty foods especially this time of year. All the nutritional information in the posts are directed at parents trying to help their small children (remember Ellie is 4) who struggle with digestion, reflux, growth gains and weight gains. We have had some remarkable results by doing things differently. <BR/><BR/>But I will be the first to say that getting dogmatic about anything is the wrong way to go. So take it or leave it. And thanks again for enriching this discussion. I look forward to reading your post.Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-1166482543669422602006-12-18T17:55:00.000-05:002006-12-18T17:55:00.000-05:00I think I will probably write a post somewhat rela...I think I will probably write a post somewhat related to all of this in my blog tomorrow. Two things that strike me here, one I'm again thinking I should look into the finances and see if I can afford organics (maybe if I get the job I'm interviewing for next week) and two if I do do for blood work after Christmas (high blood pressure, urgh gotta have a full blood count, liver and kidney function tests if it doesn't improve) I will be very interested to see what it brings up and what my blood type is - I don't know that I agree with the blood type affecting what you should eat argument but it might be an interesting experiment. The other thing is about the weighing too much vs weighing too little balance - I know a CP-er who walks (hemiplegic cp) never uses a chair. She is underweight and I rarely see her now as she lives in Spain but she gets thinner and thinner and has been known to comment several times that she is "getting fat" or needs to lose some weight. I have at times been concerned that she has an eating disorder and so I guess what I'm trying to say is that sometimes friends/family/loved ones/doctors need to be sure that low weight is a nature or a cp thing and not related to anorexia or some such. I will write more about all of this in my blog before I fill your comments beyond all recognition, LOL.Anonymousnoreply@blogger.com