Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Hi, nice to meat you. We have been here only 2+ months entire family doing SCD together, thans on the most part to Celiac Disease/injured intestines and asd problem. Our adopted is the only one who doesn't have CD but she has HYPEREKPLEXIA...the nurologists says that is is distantly related to CP. Could you tell me more if diet has helped with the neurological CP issues. Our daughter is doing quite well now. Most can not tell that she ever had such a serious problem. We experimented with other ways of eating too fro 1.5 years before SCD. She is now walking..and clibing....something that we where told may not happen. She is only 18 months old and so far we have seen the best results with SCD. Love to hear if you think diet helps CP. Many of her doctors WILL NOT GIVE DIET any credit for her success. I would love to know your opinion. You can write me off serve ajbunce@... since this may not have anything to do with SCD. Thanks, Antoinette > > Hello everyone.... Jody, Mimi, anyone else who remembers me. > > My daughter, Katera, was on SCD for 18 months quite a while ago > (Ummm... let's see... 2003-04). She does not have autism... she > actually has a CP diagnosis and epilepsy, and we started SCD to help > support seizure control. Things went fairly well for the first six > months or so. Seizures came back with a vengeance and we're back on > medication now... plus she has a Vagus Nerve Stimulator. Seizure- wise > she is pretty stable... still has them now and then (one or two per > month), but they are short and easy to control now, without emergency > drug intervention. > > ANYway, I am here because I am considering putting her back on SCD > when summer break gets here... because we are seeing some digestive > issues and I also need to address some yeast control, I believe. > > After 27 months of the Ketogenic Diet, followed by 18 months of SCD, I > can honestly say I'm not sure I've recovered YET from the burn out! > But, I am trying to gear up and get my head in the right place again. > > I also have another family that I'm going to be coaching as they get > started this summer, for their 7-yr-old daughter with autism. > > hugs to everyone I know.... > Patti, mom to Katera (age 9- CP, ACC, microcephaly, severe delays, > motor and speech dyspraxia, epilepsy) in Washington state. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Welcome back, Patti. I must say that your early posts on seizures so long ago were what got me motivated to begin SCD for our son (and ultimately whole family). We are now almost 3 years SCD! I am not sure if you have been aware of how much you and Katera have moved and inspired so many of us. So---thank you, thank you, thank you! :-)) And, how wonderful to have you back and hearing that Katera is doing ok. whole family SCD 2+ years Mom to Dakota (8--NF, BWS, CDD, and seizures) and (6--happy, healthy, supportive little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Welcome back, Patti. I must say that your early posts on seizures so long ago were what got me motivated to begin SCD for our son (and ultimately whole family). We are now almost 3 years SCD! I am not sure if you have been aware of how much you and Katera have moved and inspired so many of us. So---thank you, thank you, thank you! :-)) And, how wonderful to have you back and hearing that Katera is doing ok. whole family SCD 2+ years Mom to Dakota (8--NF, BWS, CDD, and seizures) and (6--happy, healthy, supportive little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 PATTI!!!! I'm so glad to see you. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Welcome back Patti! I am forever indebted to you, you changed our lives! A little background, Patti sent my family over to SCD from another list back in 2004. For your autism family you are helping, if they are interested or are needing goats milk, there is a farm in Camas down 4th plain which is almost full with milk customers. It is a Washington certified dairy, and the goats are pastured. If your family would like more information, email! Pretty soon they will be accepting no new customers. I go out every sat for milk pickup, and am willing to bring milk back to town to my freezer if any family would like to pick up from my home in Orchards, especially at the beginning of SCD. $3.50 a half gallon, my son reacts to Trader Joe's and Wildoats goat milk, but not this pastured stuff! Summer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Patti, Thank you for your reply. It looks like many people are glad you are back! It is a shame that more doctors don't realize that what we eat plays a bigger part than we think. Antoinette > > Antoinette, > You asked: > > << Could you tell me more if diet has helped with the neurological CP issues.>> > All I can tell you is that Katera was completely seizure-free for the first five months she was on SCD... very dramatically different than before she was on it. That was without any drugs on board. The effect did not last for us, unfortunately. > > I have not seen any improvement in any other " neurological " issues with our daughter while she was on the diet. We were hoping for some cognitive gain... and less sensory issues... but really did not see that. > > <<Many of her doctors WILL NOT GIVE DIET any credit for her success.>> > Well, I'm not surprised to hear that! But, the proof is in the pudding (SCD legal pudding, of course), as they say. So, who cares what the docs say? YOU know your child. > > I think that SCD can give any child with neuro issues a better shot at development. If for no other reason, a healthy gut means they will be better able to absorb all the nutrients they need. It sounds like your daughter is doing great. > > Patti > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Patti, Thank you for your reply. It looks like many people are glad you are back! It is a shame that more doctors don't realize that what we eat plays a bigger part than we think. Antoinette > > Antoinette, > You asked: > > << Could you tell me more if diet has helped with the neurological CP issues.>> > All I can tell you is that Katera was completely seizure-free for the first five months she was on SCD... very dramatically different than before she was on it. That was without any drugs on board. The effect did not last for us, unfortunately. > > I have not seen any improvement in any other " neurological " issues with our daughter while she was on the diet. We were hoping for some cognitive gain... and less sensory issues... but really did not see that. > > <<Many of her doctors WILL NOT GIVE DIET any credit for her success.>> > Well, I'm not surprised to hear that! But, the proof is in the pudding (SCD legal pudding, of course), as they say. So, who cares what the docs say? YOU know your child. > > I think that SCD can give any child with neuro issues a better shot at development. If for no other reason, a healthy gut means they will be better able to absorb all the nutrients they need. It sounds like your daughter is doing great. > > Patti > > > > Quote Link to comment Share on other sites More sharing options...
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