Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Hi - I don't know what ever became of the OB. He resigned his position but when I tried to find out from the OB's office & the hospital, no one knew where, if anywhere, he was going. It sounds like Sydney's tort was positional. Being head down for a long time- she may have had her head kinked to one side. That'd cause the muscle to grow long on one side & short on the other. I'm glad the PT is helping. mom to twins Jacquie (tort & asymm) & Jessie- 1yr Michigan > > > > > I just posted some pics of Sydney's helmet with decorations - > > > we > > > > > just used stickers we found in a scrapbooking store - they > have > > > to > > > > > be replaced every 2-3 weeks, we have had to change them > twice > > > since > > > > > she's gotten her helmet, but it's fun to do. > > > > > - St. Louis > > > > > Sydney - PPO helmet/brachy/tort (started 5-10-04) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 kelly--- seems like we both have a lot in common!! my yongest just turned 4 and was dx with oral apraxia last week.... (FINALLY GOT SOME ANSWERS) my oldest is 6 and is in kindergarten and VERY advanced.....very frustrating to have one that teaches herself how to do things and excels while you have another that has to work VERY HARD to do ANYTHING! my youngest also has hypotonia and is in sure steps too.....i am getting her back into ALL therapy now and trying to figure out when i can schedule it all in with me going back to work.....i stayed home for 6 years and just went back to work this year part-time.....my daughter is on a list of supplements as well---CoQ10 seems to help her with her energy levels tremendously....she had cod come back as an allergen on her testing so she is OFF of omega 3's right now until we find something without COD....kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 My daughter is allergic to all fish so we were not able to put her on fish oils either. We saw an nutritionist who put her on Vit E, L- theanine,l-carnitine, l-carnosine, probiotics, and phosphaline. We have had no trouble getting all these pills into her cereal...it's the phosphaline that's the trouble!! It's oily and smells bad. My daughter has been gluten free for over a year and we just now are trying dairy free. Her digestion issues were completely resolved with the glutenfree diet. She is however severly apraxic and that is going much slower. We shall see how all these supplements work!! Stefanie H 234 0878 C 552 0350 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 If your child is allergic to fish there are other ways to get the essential fatty acids. If you search the archives or check with a neuromedical doctor you don't want to put your child onto vitamin E unless you are aware that in this group we had severe side effects reported on high dosages. You can read about some of them in the link section here -or here online at http://www.apraxia.org http://www.facebook.com/topic.php?uid=33975504380 & topic=10850 & post=58671#/topic.\ php?uid=115029735601 & topic=10637 In addition during our search into " why " this happened it came to our attention about the vitamin E toxicity meta analysis of increased sudden death with even just 400 IUs a day http://annals.highwire.org/content/142/1/37.full-and that's in adults not little children which our group proved can react even more severely to these fat soluble vitamins. Look up the word " hypervitaminosis " Carnosine is fine -but you shouldn't supplement with carnitine unless you had your child tested via blood analysis first for levels because we found in this group an unusually high level of our children were deficient in this amino acid which supports muscles. It may seem " OK then I should supplement with that just in case " But you see carnitine deficiency is very rare -I believe around 1 in 40,000 -we have WAY more in this group who tested low which needs to be studied one day. Thing is that it affects 'all' muscles -including the muscles around the heart. Typically the only way one knows one had a carnitine deficiency is during an autopsy for sudden death (not that this is linked to the sudden death from the vitamin E report below in any way -two separate) If your child is tested and found to be low this would mean a rare condition that should be treated seriously. You should seek a geneticist who specializes in metabolic disorders who can oversee your child and put him or her on a prescription form of carnitine. You see if you just supplement you won't be able to know for sure if your child's levels were say borderline low -which should also be treated seriously. A nutritionist is not qualified to treat metabolic disorders -at least on their own. As far as fish free forms of the essential fatty acids -which are essential to the body and with no known side effects and used for generations and recommended by various leading medical doctors and organizations...if say your child 'is' allergic to fish. Can't eat tuna fish sandwiches etc. You can look for algae or plant versions. They may not yet be as good but I did find a company from Sweden that has made a DHA, EPA version of EFAs from algae!! That's amazing. In the meantime you can stick with flax etc. It may not be as effective -but at least you will know it's safe. After my son's massive regression on a vitamin E mix which was recommended by a medical doctor parent in this group who many of us trusted- and that includes the many who had children with seizures etc. as you can easily find in the archives -I'm sticking to " medicine " that has been around for years and years and accepted -like fish oils or EFAs...or ayurveda for example. Best to all of you -and please do your research before beginning anything with your young child. I wish someone told all of us that -I typically do research everything -but blind trust we learned can be a dangerous thing. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 I found the one website for the DHA/EPA algae oil. The EPA is way lower then what we use but as they say it's better than nothing. Vitamin E and all the rest may be in question as to whether our children need to be supplemented...but regardless they are not essential fatty acids which is what this group found to be most successful for the majority for thousands for over a decade now. Anyway -here's the one website. If anyone does try it that has a child that is allergic to fish (and tuna fish sandwiches) please let us know if you see any results with this algae version of DHA and EPA. I find it very exciting that there can be a vegan version of the oils since as we know the fish supply is depleting. http://www.v-pure.com ===== Quote Link to comment Share on other sites More sharing options...
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