Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Rhonda- THANK YOU, THANK YOU for taking the time to provide me w/details of Shan's experiences. I'm definitely going to investigate the possibility of being sensitive to lactose. I've decided to cut his meal's w/cream in half so will now only give him 2 meals w/heavy cream per day. Started this yesterday. In addition, with the help of others in the group, will introduce dif. oils, thus cutting back on dairy fat. will be FINISHED w/meds this weekend so I'm sure his body will be adjusting to a dif. metabolism w/out the meds. I don't want to make changes too fast until I feel comfortable that the meds are gone (figure it will take about a month for them to TOTALLY be out of his system??) so that if he does start improving I'll have a better idea if it is the elimination of meds or the decrease in lactose/dairy. Given Shan's experiences, I think it is a very real possibility that at minimum he is " sensitive " to lactose - when he was 4 months old, we took him to a homeopathic Dr. who evaluated him and said there was problems w/his gut (forgot the term) and that we needed to give him acidopholus and to get him OFF milk-based formula. Went in one ear and right out the other. Naturally, in retrospect, wish I would have listened - 's seizure activity may have stopped before it got out-of-control but this Dr. was rather " strange " and he didn't take the time to tell me what he was doing (when he was clicking MY heals together and holding vials over MY head to get a diagnosis for COOPER.)Now, since, I've become wiser and more informed..... but that's not here nor there anymore - SORRY - got to rambling! I'm so glad to hear that you figured out the problem w/Shan before she, too, lost more of her abilities. I tell ya, I know we have to advocate for our own children but I don't know how parents like you " think outside the bubble " - do I have that phrase right??Ha! The fact that you recognized the fatigue/lethargy/muscle weakness wasn't normal even tho Dr.s weren't concerned- you kept probing - and boy, did it pay off! Shan's a lucky little girl! I'm learning, slowly but surely! Have I mentioned how THANKFUL I am to have this support group? I'll keep you updated on 's progress. Down the road, I'm SURE I'll be looking thru the archives for your recipe on making lactose free yogurt. One step at a time! (patience is painful for me!!) P.S. - " Shan-Shine " how cute is that!!!! (mom to ) - In ketogenic , " Rhonda Ackerman " <ackerman@t...> wrote: > , > > It can sometimes be difficult to diagnose a person who is sensitive to > lactose. My daughter, Shan, is Chinese. 90% of Asians are lactose > intolerant. Often the lactose intolerance does not surface while a child. > And, many people can tolerate lactose in low amounts if consumed once or > twice throughout the month/year (moderation). Prior to the diet Shan ate > all dairy (milk with most meals, ice cream, yogurt) without any symptoms > (bloated stomach, abnormal stool, stomach pain). As a baby she had left > side muscle weakness and development delay. Prior to the diet her left > sided weakness could not be detected except by us (parents) and her > coordination continued to be delayed but always improving. She did not have > any symptoms of fatigue. Immediately after fasting Shan had extreme > fatigue. She wanted to sleep all day. This improved over the next couple > weeks (the sleepiness) but she continued to have extreme fatigue (had to be > carried everywhere). Then, a very negative attitude set and she was having > severe stomach pains and bloating. Everything was " I don't like. " We had > always called Shan our " Shan-shine " because she was always so happy but she > became the complete opposite. The negative attitude improved some when we > made some changes (added digestive enzymes which decreased the gas and > stomach pain significantly; began using oils instead of cream for fat). We > had weaned most drugs she was on (klonipin & tompomax) and was down to a > small amount of tegretol. For 5 of the first 6 years of Shan's life she was > on tegretol with no negative attitude side effects. Shan's now very > sensitive stomach due to being on the diet, was much more susceptible to > the side effects of tegretol. As we reduce the tegretol her attitude > improved some. It really improved when we quit it; and, it came back when > we had to give back a small dose due to the raging seizures that came back > (kept her off for about 3 weeks which resulted in near paralysis of her left > side). > > The reason I'm sharing so much detail is because all of the above was due to > lactose intolerance. Shan's " I don't like " attitude began to resolve a year > later when we introduced yogurt to her diet (began giving her good bacteria > for her gut-enabled her gut to heal). Her fatigue over the first year > improved very minimally (could walk a short distance but tired easily---was > giving oils instead of cream). Her seizures at that time were about 1 every > 6 days. When we started giving her yogurt her fatigue improved but the > seizures increased to about every 3 days. We switched over to lactose free > yogurt (make our own) and her seizures suddenly improved to 4-6 weeks > without a visible seizure and her energy has been improving ever since (can > now run short distances, long walks, rides her bike with trainers). Her > muscle tone is improving (feel like she lost a lot of ground in that first > year of the diet) and her overall coordination is improving. Thankfully, > her right side is fairly normal when it comes to coordination but her left > side (seizures effect left side) has always struggled. > > If 's lethargy has improved with decreasing his meds then most likely > it will continue to improve as you reduce more of his meds. It is very > normal for children on the diet to go toxic again after reducing their meds. > Often a child will be toxic from the med they are on, med is reduce, they > adjust and less toxic symptoms are seen, and then they go toxic again. When > the toxic symptoms increase or do not completely go away then it is time to > do another reduction. > > I hope this is helpful to you, . I'm hoping that the details will > trigger something that may be of help to . If you are interested in > making lactose free yogurt I have the instructions in the archives. It can > be done with milk but I use cream. > > Rhonda > > Hi Rhonda- > Boy, now you've really got me thinking - you know, > awhile back thru one of YOUR postings when there was > discussion about lactose intolerance and Shan's > experience - I asked my pediatrician if there was even > a remote possibility that could be intolerant > or at least sensitivie to dairy. At the time, I was > only concerned about his lethargy. The ped. said " no > way since he doesn't have ANY symptoms " - i.e. dry > skin and I forgot the others he mentioned. So... > naturally, I dropped it. But, if you say that Shan > also had muscle weakness - and this also improved when > you gave her lactose free yogurt?? > We give a very limited menu as it is. Don't > give him much dairy - he does have cream w/every meal > but only has one meal a day w/butter (eggs). The > other three meals consist of chicken/pork chop/turkey > w/green beans, spag. squash, summer squash/zucchini > w/olive oil or puritan oil. Have been meaning to pick > up some flax/sunflower oils too. > 's lethargy has improved since we've decreased > meds BUT, he naps three hours a day and could even nap > more if I laid him down. > What might you suggest I try? Removing dairy > altogether, and add lactose free yogurt? Where do you > get this? I'm thinking I've read that you make > yours?? I'll do anything to improve seizures, muscle > tone, and lethargy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Rhonda- THANK YOU, THANK YOU for taking the time to provide me w/details of Shan's experiences. I'm definitely going to investigate the possibility of being sensitive to lactose. I've decided to cut his meal's w/cream in half so will now only give him 2 meals w/heavy cream per day. Started this yesterday. In addition, with the help of others in the group, will introduce dif. oils, thus cutting back on dairy fat. will be FINISHED w/meds this weekend so I'm sure his body will be adjusting to a dif. metabolism w/out the meds. I don't want to make changes too fast until I feel comfortable that the meds are gone (figure it will take about a month for them to TOTALLY be out of his system??) so that if he does start improving I'll have a better idea if it is the elimination of meds or the decrease in lactose/dairy. Given Shan's experiences, I think it is a very real possibility that at minimum he is " sensitive " to lactose - when he was 4 months old, we took him to a homeopathic Dr. who evaluated him and said there was problems w/his gut (forgot the term) and that we needed to give him acidopholus and to get him OFF milk-based formula. Went in one ear and right out the other. Naturally, in retrospect, wish I would have listened - 's seizure activity may have stopped before it got out-of-control but this Dr. was rather " strange " and he didn't take the time to tell me what he was doing (when he was clicking MY heals together and holding vials over MY head to get a diagnosis for COOPER.)Now, since, I've become wiser and more informed..... but that's not here nor there anymore - SORRY - got to rambling! I'm so glad to hear that you figured out the problem w/Shan before she, too, lost more of her abilities. I tell ya, I know we have to advocate for our own children but I don't know how parents like you " think outside the bubble " - do I have that phrase right??Ha! The fact that you recognized the fatigue/lethargy/muscle weakness wasn't normal even tho Dr.s weren't concerned- you kept probing - and boy, did it pay off! Shan's a lucky little girl! I'm learning, slowly but surely! Have I mentioned how THANKFUL I am to have this support group? I'll keep you updated on 's progress. Down the road, I'm SURE I'll be looking thru the archives for your recipe on making lactose free yogurt. One step at a time! (patience is painful for me!!) P.S. - " Shan-Shine " how cute is that!!!! (mom to ) - In ketogenic , " Rhonda Ackerman " <ackerman@t...> wrote: > , > > It can sometimes be difficult to diagnose a person who is sensitive to > lactose. My daughter, Shan, is Chinese. 90% of Asians are lactose > intolerant. Often the lactose intolerance does not surface while a child. > And, many people can tolerate lactose in low amounts if consumed once or > twice throughout the month/year (moderation). Prior to the diet Shan ate > all dairy (milk with most meals, ice cream, yogurt) without any symptoms > (bloated stomach, abnormal stool, stomach pain). As a baby she had left > side muscle weakness and development delay. Prior to the diet her left > sided weakness could not be detected except by us (parents) and her > coordination continued to be delayed but always improving. She did not have > any symptoms of fatigue. Immediately after fasting Shan had extreme > fatigue. She wanted to sleep all day. This improved over the next couple > weeks (the sleepiness) but she continued to have extreme fatigue (had to be > carried everywhere). Then, a very negative attitude set and she was having > severe stomach pains and bloating. Everything was " I don't like. " We had > always called Shan our " Shan-shine " because she was always so happy but she > became the complete opposite. The negative attitude improved some when we > made some changes (added digestive enzymes which decreased the gas and > stomach pain significantly; began using oils instead of cream for fat). We > had weaned most drugs she was on (klonipin & tompomax) and was down to a > small amount of tegretol. For 5 of the first 6 years of Shan's life she was > on tegretol with no negative attitude side effects. Shan's now very > sensitive stomach due to being on the diet, was much more susceptible to > the side effects of tegretol. As we reduce the tegretol her attitude > improved some. It really improved when we quit it; and, it came back when > we had to give back a small dose due to the raging seizures that came back > (kept her off for about 3 weeks which resulted in near paralysis of her left > side). > > The reason I'm sharing so much detail is because all of the above was due to > lactose intolerance. Shan's " I don't like " attitude began to resolve a year > later when we introduced yogurt to her diet (began giving her good bacteria > for her gut-enabled her gut to heal). Her fatigue over the first year > improved very minimally (could walk a short distance but tired easily---was > giving oils instead of cream). Her seizures at that time were about 1 every > 6 days. When we started giving her yogurt her fatigue improved but the > seizures increased to about every 3 days. We switched over to lactose free > yogurt (make our own) and her seizures suddenly improved to 4-6 weeks > without a visible seizure and her energy has been improving ever since (can > now run short distances, long walks, rides her bike with trainers). Her > muscle tone is improving (feel like she lost a lot of ground in that first > year of the diet) and her overall coordination is improving. Thankfully, > her right side is fairly normal when it comes to coordination but her left > side (seizures effect left side) has always struggled. > > If 's lethargy has improved with decreasing his meds then most likely > it will continue to improve as you reduce more of his meds. It is very > normal for children on the diet to go toxic again after reducing their meds. > Often a child will be toxic from the med they are on, med is reduce, they > adjust and less toxic symptoms are seen, and then they go toxic again. When > the toxic symptoms increase or do not completely go away then it is time to > do another reduction. > > I hope this is helpful to you, . I'm hoping that the details will > trigger something that may be of help to . If you are interested in > making lactose free yogurt I have the instructions in the archives. It can > be done with milk but I use cream. > > Rhonda > > Hi Rhonda- > Boy, now you've really got me thinking - you know, > awhile back thru one of YOUR postings when there was > discussion about lactose intolerance and Shan's > experience - I asked my pediatrician if there was even > a remote possibility that could be intolerant > or at least sensitivie to dairy. At the time, I was > only concerned about his lethargy. The ped. said " no > way since he doesn't have ANY symptoms " - i.e. dry > skin and I forgot the others he mentioned. So... > naturally, I dropped it. But, if you say that Shan > also had muscle weakness - and this also improved when > you gave her lactose free yogurt?? > We give a very limited menu as it is. Don't > give him much dairy - he does have cream w/every meal > but only has one meal a day w/butter (eggs). The > other three meals consist of chicken/pork chop/turkey > w/green beans, spag. squash, summer squash/zucchini > w/olive oil or puritan oil. Have been meaning to pick > up some flax/sunflower oils too. > 's lethargy has improved since we've decreased > meds BUT, he naps three hours a day and could even nap > more if I laid him down. > What might you suggest I try? Removing dairy > altogether, and add lactose free yogurt? Where do you > get this? I'm thinking I've read that you make > yours?? I'll do anything to improve seizures, muscle > tone, and lethargy. Quote Link to comment Share on other sites More sharing options...
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