Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Catey, Just wanted to make a quick comment. I know a lot of kids had great responses to ACTH right away but didn't.....I remember it did take at least 2-3 weeks before we started seeing any improvement in the IS. Once it did work though it was great. He was also on Vigabatrin at the time.... Just wanted to let you know what happened with us. Let me know if you have any other questions. Good Luck, Joanne, mom to , NY, Bilateral Perisylvian PMG. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Catey - Are you absolutely certain that Charlie is having infantile spasms? Could be that he is having myoclonic seizures, particularly in light of the fact that they happen only upon awakening. These seizures upon awakening were the first and only seizures that my daughter, Whitney, has had. They started at age 3 years and have not changed much over the last 11 years. We did not medicate at all for them for years and then started Depakote twice a day a couple of years ago. I did not see any appreciable change in the seizures on Depakote. But, a couple of months ago the ped neuro started her on Zonegran in addition to the Depakote -- there is a definite decline in number and severity of the myoclonic seizures. The most she ever had these seizures was 8 - 10 mornings a week, lasting about 25 minutes each. They are now down to 4 -5 times a month, lasting 2 -10 minutes, after just 2 months on the Zonegran. I hope to see further reduction as she is only on a low dosage of Zonegran (she is 80 pounds and takes 50mg of Zonegran twice a day). I may be way off on the possibility of Charlie's seizures actually being myoclonic instead of infantile. I am certainly not an expert. However, the ped neuro thought Whitney's seizures were infantile spasms in the early years -- until they continued on. Vicki - mother to Whitney (14 years old, SBH) Need Help Hi everyone! It has been a while since I have written. I am in urgent need of your opinions. When Charlie was 6 months he started having infantil spasms 3 or 4 times a day. We treated he with oral prednison and it worked. He is now 2 and a half. He started with them again about six months ago. This time he only has them when he wakes up, which is usually only twice a day. I would not have been so concerned about just two spasams a day, but his development had almost come to a complete stop. We tryed the prednison(spelled wrong) again and it did not work. We then took him off the phenobarb and put him on kolazipan. That did not work either. We then decided it was time to try ACTH. From what the nero said, it was almost sure to work. We are almost three weeks into the course of the shots. He is still having the spasams. The nero has her opinion but at this point I almost wonder if anything will work, and if it is worth druging him up. I was hoping maybe some of you would have an opinion. Maybe some of you have gone through this. Please help! Thank You, Catey,Mom to Charlie two and a half (bilateral perisilvian pariooccipital polymicrogyria)he can sit leaning on one hand, he gets up on his hands and knees, but can't seem to work those hands, he still eats baby food we are working on textures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Hi Catey, Hang in there. You definately have got to try to get those spasms under control. What is your dosage on the ACTH? Our little guy (6 months old) had spasms. we had him on a low dose of ACTH for a week. That didn't do any good so we increased his dose to .5 ml and that worked. we've now been gradually weaning him off of it. The other drug we were prepared to try if the ACTH had not worked was Vigabatrin. The downside is that it isn't approved in the US because of possible long term effects on eyesight. Why does your doctor not think the ACTH is going to work? Have you increased the dose? --- Will and Catey Larson wrote: > Hi everyone! It has been a while since I have > written. I am in > urgent need of your opinions. When Charlie was 6 > months he started > having infantil spasms 3 or 4 times a day. We > treated he with oral > prednison and it worked. He is now 2 and a half. > He started with > them again about six months ago. This time he only > has them when he > wakes up, which is usually only twice a day. I > would not have been > so concerned about just two spasams a day, but his > development had > almost come to a complete stop. We tryed the > prednison(spelled wrong) > again and it did not work. We then took him off the > phenobarb and > put him on kolazipan. That did not work either. We > then decided it > was time to try ACTH. From what the nero said, it > was almost sure to > work. We are almost three weeks into the course of > the shots. He is > still having the spasams. The nero has her opinion > but at this point > I almost wonder if anything will work, and if it is > worth druging him > up. I was hoping maybe some of you would have an > opinion. Maybe > some of you have gone through this. Please help! > Thank You, Catey,Mom to Charlie two and a half > (bilateral perisilvian > pariooccipital polymicrogyria)he can sit leaning on > one hand, he gets > up on his hands and knees, but can't seem to work > those hands, he > still eats baby food we are working on textures. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Vickie has a good point. The EEG results will tell you for sure if Charlie has the Hipps (spelling?) arrythmia which is infantile spasms. How well trained is the person that did the EEG and how well trained is your neurologist? You may want to have an epilepsy specialist look at the EEG results. --- Vicki Stedman wrote: > Catey - Are you absolutely certain that Charlie is > having infantile spasms? Could be that he is having > myoclonic seizures, particularly in light of the > fact that they happen only upon awakening. These > seizures upon awakening were the first and only > seizures that my daughter, Whitney, has had. They > started at age 3 years and have not changed much > over the last 11 years. We did not medicate at all > for them for years and then started Depakote twice a > day a couple of years ago. I did not see any > appreciable change in the seizures on Depakote. > But, a couple of months ago the ped neuro started > her on Zonegran in addition to the Depakote -- there > is a definite decline in number and severity of the > myoclonic seizures. The most she ever had these > seizures was 8 - 10 mornings a week, lasting about > 25 minutes each. They are now down to 4 -5 times a > month, lasting 2 -10 minutes, after just 2 months on > the Zonegran. I hope to see further reduction as > she is only on a low dosage of Zonegran (she is 80 > pounds and takes 50mg of Zonegran twice a day). > > I may be way off on the possibility of Charlie's > seizures actually being myoclonic instead of > infantile. I am certainly not an expert. However, > the ped neuro thought Whitney's seizures were > infantile spasms in the early years -- until they > continued on. > > Vicki - mother to Whitney (14 years old, SBH) > Need Help > > > Hi everyone! It has been a while since I have > written. I am in > urgent need of your opinions. When Charlie was 6 > months he started > having infantil spasms 3 or 4 times a day. We > treated he with oral > prednison and it worked. He is now 2 and a half. > He started with > them again about six months ago. This time he > only has them when he > wakes up, which is usually only twice a day. I > would not have been > so concerned about just two spasams a day, but his > development had > almost come to a complete stop. We tryed the > prednison(spelled wrong) > again and it did not work. We then took him off > the phenobarb and > put him on kolazipan. That did not work either. > We then decided it > was time to try ACTH. From what the nero said, it > was almost sure to > work. We are almost three weeks into the course > of the shots. He is > still having the spasams. The nero has her > opinion but at this point > I almost wonder if anything will work, and if it > is worth druging him > up. I was hoping maybe some of you would have an > opinion. Maybe > some of you have gone through this. Please help! > Thank You, Catey,Mom to Charlie two and a half > (bilateral perisilvian > pariooccipital polymicrogyria)he can sit leaning > on one hand, he gets > up on his hands and knees, but can't seem to work > those hands, he > still eats baby food we are working on textures. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Hi Catey, I know of many parents who have gone down the drug route, only to find that none of the drugs work, or if they do it is not sufficient to make a real difference. Apart from that there are the side effects of the individual treatments, let alone the interactions between all the things that doctors put our kids on. Can I urge you to investigate the ketogenic diet for Charlie. At least consider this treatment which has been used for decades and which can give wonderful results in kids with intractable seizures when many drugs have failed. Many children have become seizure free and medication free, and have never looked back. If you are interested, you may wish to join the ketogenic diet email support group at yahoo, even just to gather info while choosing what to do. I could dig up some info sites for you to check if you'd like. Just let me know. - from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, variety of seizure types, ketogenic diet since 6/00 which has reduced seizures and allowed us to totally wean lamictal, spastic quad.CP and orthopedic issues that go with it, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant smile) Need Help > Hi everyone! It has been a while since I have written. I am in > urgent need of your opinions. When Charlie was 6 months he started > having infantil spasms 3 or 4 times a day. We treated he with oral > prednison and it worked. He is now 2 and a half. He started with > them again about six months ago. This time he only has them when he > wakes up, which is usually only twice a day. I would not have been > so concerned about just two spasams a day, but his development had > almost come to a complete stop. We tryed the prednison(spelled wrong) > again and it did not work. We then took him off the phenobarb and > put him on kolazipan. That did not work either. We then decided it > was time to try ACTH. From what the nero said, it was almost sure to > work. We are almost three weeks into the course of the shots. He is > still having the spasams. The nero has her opinion but at this point > I almost wonder if anything will work, and if it is worth druging him > up. I was hoping maybe some of you would have an opinion. Maybe > some of you have gone through this. Please help! > Thank You, Catey,Mom to Charlie two and a half (bilateral perisilvian > pariooccipital polymicrogyria)he can sit leaning on one hand, he gets > up on his hands and knees, but can't seem to work those hands, he > still eats baby food we are working on textures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 ine, The only thing that I could think of is if you do little crafts at home and sell them to friends or have someone else bring a couple to their work and sell them and make some money that way. I know that feeling, I was on SS myself when my husband died years ago and I did a few little things such as this to make money also. Otherwise, I really don't know what you could do unless someone was paying you cash for work done, such as housekeeping, babysitting, you know things like that. I hope this may spark a thought or two but I really couldn't find anything other then this myself while on SS. Hugs...Nola I am confused. I am on SSD and want to earn extra money but want to do it without social security to find out. Plus I owe alot of money and they can't touch me as long as I'm on SSD. So I am confused, frightened, and depressed Any suggestions? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 ine, The only thing that I could think of is if you do little crafts at home and sell them to friends or have someone else bring a couple to their work and sell them and make some money that way. I know that feeling, I was on SS myself when my husband died years ago and I did a few little things such as this to make money also. Otherwise, I really don't know what you could do unless someone was paying you cash for work done, such as housekeeping, babysitting, you know things like that. I hope this may spark a thought or two but I really couldn't find anything other then this myself while on SS. Hugs...Nola I am confused. I am on SSD and want to earn extra money but want to do it without social security to find out. Plus I owe alot of money and they can't touch me as long as I'm on SSD. So I am confused, frightened, and depressed Any suggestions? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 ine, The only thing that I could think of is if you do little crafts at home and sell them to friends or have someone else bring a couple to their work and sell them and make some money that way. I know that feeling, I was on SS myself when my husband died years ago and I did a few little things such as this to make money also. Otherwise, I really don't know what you could do unless someone was paying you cash for work done, such as housekeeping, babysitting, you know things like that. I hope this may spark a thought or two but I really couldn't find anything other then this myself while on SS. Hugs...Nola I am confused. I am on SSD and want to earn extra money but want to do it without social security to find out. Plus I owe alot of money and they can't touch me as long as I'm on SSD. So I am confused, frightened, and depressed Any suggestions? ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 The casein in the milk is keeping her on an opiate-like " high " . That's why she's self limiting to milk. You removed her other addictive foods, so she's having to get creative by refusing everything else. I'm guessing you're going to have to go strictly, completely, religiously gluten free/casein free (and possibly soy free too), AND/OR start using digestive enzymes (www.houstonni.com) strictly, completely, religiously. Some parents see their children go through withdrawal, like an addict goes through detox when removing gluten and casein cold turkey, so consider going slowly. And she'll likely refuse to eat for a few days unless she can get you to give her another " fix " of milk or gluten. Have you read Karyn Seroussi's book, " Unraveling the Mystery of PDD and Autism " ? (there's a yahoo group called GFCFKids) And DeFelice's book, " Enzymes for Autism and Other Neurological Conditions " ? (there's a yahoo group called EnzymesandAutism) > Hope is refusing to eat. When she was younger she ate just about anything. Over the last 2 years she's limited her diet to chicken nuggets,peanut butter sandwhiches, cereal, and occasionally macaroni and cheese. We went on a gluten free diet back in May and her appetite improved, but she stuck with those items only. > > Well in the last couple of weeks it's been increasingly difficult to get her to eat anything. She wants milk and that's all. She can't live on just milk, so we started limiting her milk thinking she was filling up on that. Now she's refusing to eat anything. In the last 4 days she's eaten 1 chicken strip, 1 peice of peanut butter bread at my mom's, and a handful of cereal. I've been the bad guy telling her after she eats something, she can have her milk but not before. Daddy gave her a tiny bit of milk this morning when she woke up at 4 am with a stomach ache. But basically she's refusing to eat at all at this point. > > I'm calling the doctor as soon as the office opens. Other than that, all we can think of is take milk totally away and replace with rice milk or potato milk. Has anyone else gone through this with their kids? Hope is 4. > > > Toni Wells > e-store: http://designs.merlins-avalon.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. Toni Wells e-store: http://designs.merlins-avalon.com Re: need help The casein in the milk is keeping her on an opiate-like " high " . That's why she's self limiting to milk. You removed her other addictive foods, so she's having to get creative by refusing everything else. I'm guessing you're going to have to go strictly, completely, religiously gluten free/casein free (and possibly soy free too), AND/OR start using digestive enzymes (www.houstonni.com) strictly, completely, religiously. Some parents see their children go through withdrawal, like an addict goes through detox when removing gluten and casein cold turkey, so consider going slowly. And she'll likely refuse to eat for a few days unless she can get you to give her another " fix " of milk or gluten. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. Toni Wells e-store: http://designs.merlins-avalon.com Re: need help The casein in the milk is keeping her on an opiate-like " high " . That's why she's self limiting to milk. You removed her other addictive foods, so she's having to get creative by refusing everything else. I'm guessing you're going to have to go strictly, completely, religiously gluten free/casein free (and possibly soy free too), AND/OR start using digestive enzymes (www.houstonni.com) strictly, completely, religiously. Some parents see their children go through withdrawal, like an addict goes through detox when removing gluten and casein cold turkey, so consider going slowly. And she'll likely refuse to eat for a few days unless she can get you to give her another " fix " of milk or gluten. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. Toni Wells e-store: http://designs.merlins-avalon.com Re: need help The casein in the milk is keeping her on an opiate-like " high " . That's why she's self limiting to milk. You removed her other addictive foods, so she's having to get creative by refusing everything else. I'm guessing you're going to have to go strictly, completely, religiously gluten free/casein free (and possibly soy free too), AND/OR start using digestive enzymes (www.houstonni.com) strictly, completely, religiously. Some parents see their children go through withdrawal, like an addict goes through detox when removing gluten and casein cold turkey, so consider going slowly. And she'll likely refuse to eat for a few days unless she can get you to give her another " fix " of milk or gluten. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 my daughter (christina) is very picky. she eats the exact same things and she wont eat anything else i just got her to eat meat it has to be on the bone though there are some night when she doesnt eat at all cause my rule is you eat what i make or you dont eat. I also have a son too and one on the way so i cant be making diffrent meals for everyone. cant have milk or any dairy products exept cheese. she would live on cereal though if i let her.but what she does like she eats alot of it. i think for christina she doesnt eat most foods because of a senceory issues. crystal christina will be 4 dec.5th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Have you had an IgG delayed allergy blood test run? We need to do another one *sigh*. > That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. > > > Toni Wells > e-store: http://designs.merlins-avalon.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Have you had an IgG delayed allergy blood test run? We need to do another one *sigh*. > That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. > > > Toni Wells > e-store: http://designs.merlins-avalon.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Have you had an IgG delayed allergy blood test run? We need to do another one *sigh*. > That's what we were thinking we'd have to do. She's already taking enzymes to counteract any gluten she gets when we're eating out or at school. So it looks like I'm off to the health food store to get Dari-free. When we started the gluten free diet we took everything out (gluten, casein, soy, colors) to allow her time to heal. then brought things back one at a time to see what might cause her problems. We know soy in large amounts, like soy milk, upsets her stomach terribly. The only thing we didnt bring back was gluten since she was diagnosed with celiac. > > > Toni Wells > e-store: http://designs.merlins-avalon.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi Toni Well did go through something like that about 3yrs old. She would only eat PB & J, for all 3 meals. It drove me crazy, but like her Ped. said " at least she is eating something. " Well is High Functioning PDD Autism. And now her 4yr old NT sister is doing almost the same. She has a major decrease in appetitie and only weighs 31 pounds. She actually didn't touch her lasagna and had 4 kernals of corn for dinner. I know this as she actually counted 4, her age, and then said she is full. Now this NT child has had severe Ear infections since 8 months old. She was breast fed till 14 months old and I even gave her small doses of Cod Liver Oil to help fight the ear infections, which has helped. And I hear the arguments of milk and ear infections. But still she is currently sitting at the table sipping her milk. Why , you might ask. #1) She is consuming something. #2) It is better on her empty tummy than any other choice I have. (her selection would be apple or Orange juice which would not be to good on an empty tummy.) #3) And MOST importantly to me, she is happy. The best thing about parenting is : There is no guide book. We have to make our own choices and it's something our children will have to live with. My parents chose not to take me to the doctor for bad colds as a child, I now suffer with Severe Bronchitus and a multitude of problems do to their choices. I have made a promise to my children, to myself. I will never sacrifice their happyness or health for me, never. If my children are healthy and happy, and I don't like the choice they made, I can live with it. So I'll have a restless night hoping my 4yr old sleeps well, and if she wakes up and wants something to eat, I'll be all to happy to fix anything for her, no matter what time it is. Sorry for the rant, but this is my emotions and common sense talking. , Holly & Wendee's Mom LeighAnn > >Reply-To: Autism_in_Girls >To: " pittsburgh_autism " <pittsburgh_autism >, > " Autism_in_Girls " <Autism_in_Girls > >Subject: need help >Date: Mon, 15 Nov 2004 06:50:23 -0500 > >Hope is refusing to eat. When she was younger she ate just about anything. > Over the last 2 years she's limited her diet to chicken nuggets,peanut >butter sandwhiches, cereal, and occasionally macaroni and cheese. We went >on a gluten free diet back in May and her appetite improved, but she stuck >with those items only. > >Well in the last couple of weeks it's been increasingly difficult to get >her to eat anything. She wants milk and that's all. She can't live on just >milk, so we started limiting her milk thinking she was filling up on that. >Now she's refusing to eat anything. In the last 4 days she's eaten 1 >chicken strip, 1 peice of peanut butter bread at my mom's, and a handful of >cereal. I've been the bad guy telling her after she eats something, she >can have her milk but not before. Daddy gave her a tiny bit of milk this >morning when she woke up at 4 am with a stomach ache. But basically she's >refusing to eat at all at this point. > >I'm calling the doctor as soon as the office opens. Other than that, all >we can think of is take milk totally away and replace with rice milk or >potato milk. Has anyone else gone through this with their kids? Hope is >4. > > >Toni Wells >e-store: http://designs.merlins-avalon.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi Toni Well did go through something like that about 3yrs old. She would only eat PB & J, for all 3 meals. It drove me crazy, but like her Ped. said " at least she is eating something. " Well is High Functioning PDD Autism. And now her 4yr old NT sister is doing almost the same. She has a major decrease in appetitie and only weighs 31 pounds. She actually didn't touch her lasagna and had 4 kernals of corn for dinner. I know this as she actually counted 4, her age, and then said she is full. Now this NT child has had severe Ear infections since 8 months old. She was breast fed till 14 months old and I even gave her small doses of Cod Liver Oil to help fight the ear infections, which has helped. And I hear the arguments of milk and ear infections. But still she is currently sitting at the table sipping her milk. Why , you might ask. #1) She is consuming something. #2) It is better on her empty tummy than any other choice I have. (her selection would be apple or Orange juice which would not be to good on an empty tummy.) #3) And MOST importantly to me, she is happy. The best thing about parenting is : There is no guide book. We have to make our own choices and it's something our children will have to live with. My parents chose not to take me to the doctor for bad colds as a child, I now suffer with Severe Bronchitus and a multitude of problems do to their choices. I have made a promise to my children, to myself. I will never sacrifice their happyness or health for me, never. If my children are healthy and happy, and I don't like the choice they made, I can live with it. So I'll have a restless night hoping my 4yr old sleeps well, and if she wakes up and wants something to eat, I'll be all to happy to fix anything for her, no matter what time it is. Sorry for the rant, but this is my emotions and common sense talking. , Holly & Wendee's Mom LeighAnn > >Reply-To: Autism_in_Girls >To: " pittsburgh_autism " <pittsburgh_autism >, > " Autism_in_Girls " <Autism_in_Girls > >Subject: need help >Date: Mon, 15 Nov 2004 06:50:23 -0500 > >Hope is refusing to eat. When she was younger she ate just about anything. > Over the last 2 years she's limited her diet to chicken nuggets,peanut >butter sandwhiches, cereal, and occasionally macaroni and cheese. We went >on a gluten free diet back in May and her appetite improved, but she stuck >with those items only. > >Well in the last couple of weeks it's been increasingly difficult to get >her to eat anything. She wants milk and that's all. She can't live on just >milk, so we started limiting her milk thinking she was filling up on that. >Now she's refusing to eat anything. In the last 4 days she's eaten 1 >chicken strip, 1 peice of peanut butter bread at my mom's, and a handful of >cereal. I've been the bad guy telling her after she eats something, she >can have her milk but not before. Daddy gave her a tiny bit of milk this >morning when she woke up at 4 am with a stomach ache. But basically she's >refusing to eat at all at this point. > >I'm calling the doctor as soon as the office opens. Other than that, all >we can think of is take milk totally away and replace with rice milk or >potato milk. Has anyone else gone through this with their kids? Hope is >4. > > >Toni Wells >e-store: http://designs.merlins-avalon.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi Toni Well did go through something like that about 3yrs old. She would only eat PB & J, for all 3 meals. It drove me crazy, but like her Ped. said " at least she is eating something. " Well is High Functioning PDD Autism. And now her 4yr old NT sister is doing almost the same. She has a major decrease in appetitie and only weighs 31 pounds. She actually didn't touch her lasagna and had 4 kernals of corn for dinner. I know this as she actually counted 4, her age, and then said she is full. Now this NT child has had severe Ear infections since 8 months old. She was breast fed till 14 months old and I even gave her small doses of Cod Liver Oil to help fight the ear infections, which has helped. And I hear the arguments of milk and ear infections. But still she is currently sitting at the table sipping her milk. Why , you might ask. #1) She is consuming something. #2) It is better on her empty tummy than any other choice I have. (her selection would be apple or Orange juice which would not be to good on an empty tummy.) #3) And MOST importantly to me, she is happy. The best thing about parenting is : There is no guide book. We have to make our own choices and it's something our children will have to live with. My parents chose not to take me to the doctor for bad colds as a child, I now suffer with Severe Bronchitus and a multitude of problems do to their choices. I have made a promise to my children, to myself. I will never sacrifice their happyness or health for me, never. If my children are healthy and happy, and I don't like the choice they made, I can live with it. So I'll have a restless night hoping my 4yr old sleeps well, and if she wakes up and wants something to eat, I'll be all to happy to fix anything for her, no matter what time it is. Sorry for the rant, but this is my emotions and common sense talking. , Holly & Wendee's Mom LeighAnn > >Reply-To: Autism_in_Girls >To: " pittsburgh_autism " <pittsburgh_autism >, > " Autism_in_Girls " <Autism_in_Girls > >Subject: need help >Date: Mon, 15 Nov 2004 06:50:23 -0500 > >Hope is refusing to eat. When she was younger she ate just about anything. > Over the last 2 years she's limited her diet to chicken nuggets,peanut >butter sandwhiches, cereal, and occasionally macaroni and cheese. We went >on a gluten free diet back in May and her appetite improved, but she stuck >with those items only. > >Well in the last couple of weeks it's been increasingly difficult to get >her to eat anything. She wants milk and that's all. She can't live on just >milk, so we started limiting her milk thinking she was filling up on that. >Now she's refusing to eat anything. In the last 4 days she's eaten 1 >chicken strip, 1 peice of peanut butter bread at my mom's, and a handful of >cereal. I've been the bad guy telling her after she eats something, she >can have her milk but not before. Daddy gave her a tiny bit of milk this >morning when she woke up at 4 am with a stomach ache. But basically she's >refusing to eat at all at this point. > >I'm calling the doctor as soon as the office opens. Other than that, all >we can think of is take milk totally away and replace with rice milk or >potato milk. Has anyone else gone through this with their kids? Hope is >4. > > >Toni Wells >e-store: http://designs.merlins-avalon.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 You know, someone posted some information about a concert being given in Michigan (?) by a young man with autism who is also blind. I bet if you search through the archives and contact that young man's family they will be happy to share LOADS of information with you. S need help I am looking for information for my son's speech therapist. She works with a little girl who is blind, autistic and tactile defensive. Does anyone know where she can find information on how to better work with this child. Any information would be appreciate. Thanks Tommie Texas Autism Advocacy www.TexasAutismAdvocacy.org Texas Disability Network Calendar of Events www.TexasAutismAdvocacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 9 months ago, an 8 nyr old gold. ret. had a tplo performed he never put wieht on the operated limb-he got passed from one surgeon to the next-I finally saw him, and suspected that the joint has not been evaluated, and that he had a torn med. meniscus. in May, I started working with him his opearted leg was severely atrophied and he wouldn't load the leg-he walked with his tarsus in extension, and his hip flexors were like a tight rope, - his quads were thin and band like I sdtarted working on him using NMES, ultrasound, and stretching, and pain management with tramadol he did improve with NMES, but not to the point of anywhere near nromal wt bearing finally, the original surgeon went back in early october-surprise-the MM was torn-this didn't occur postop, as the dog never was wt bearing the surgeon wanted him to rest for 2 weeks he has limited hock flexion-feels like his achilles and biceps are just like tight strips of mm I do not have access to UWTM, but would really like some help he will wt bear better than pre mensiectomy, but if he runs at all, he goes lame again at this point, I am supicious that his pain is from the musculotendionous issues, not the joint appreciate your input Freedman Quote Link to comment Share on other sites More sharing options...
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