Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Theresa - I am just learning about this myself - but with all children involved, multiple organ systems and a pattern that looks like maternal inheritance ( maternal relatives have problems) ask your geneticist about mitochondrial disorders. There is a website www.umdf.org that has a ton of educational material, and you could refer your doc to it as well. I especially wonder because your daughter has had multiple regressions, which is seen in mito disorders. Might not be, but it wouldn't hurt to ask. These things aren't found if they aren't looked for. All 3 of my kids and myself have problems, so we are going in that direction. Anyone have low tone or motor delays? Ask for a serum Carnitine level to be checked - while not seen in all mito disorders, low levels definitely are suspicious (this is what we have). Good luck! Kathy genetically predisposed? > > Hello everyone, > I have just about finished reading Dr.McCandless book,Thank you for > writing it!I will take it to my ped and hope that this time I can > get him to listen or refer.after reading this now alot of things > make sense.I will try to condense for you and hope I make sense I > seem to have a problem communicating effectively but really need > some advice.My mother (deceased)was schizophrenic and dxslexic,my > sister is dyslexic also.I think I have some issues myself.My mother > wouold have years of normal,then would have major episodes,she > called me at start of last one going on about a chemical spilling on > her at work and now she would be sick again,and soon after she lost > all reality and then died.I have 5 children,4 have the same > father,of those 4,1 has aspergers,1 has HFA,1 was speech delayed > and 1 baby 1 yr old has mannerisms similar to HFA child.The hfa child > regressed at 15 mo after intensive antibiotics and shots,she > developed pica and was on antibiotics for several years.At one time > she was considered severe but progressed w/aba wraparound.she has > periods of regression every couple of years.she also is the first to > catch anything.she has stomach problems which cleared up w/secretin > but still persist even though whole family now gfcf 1 mo.also when > she was a baby she caught salmonella and was in hospital.My ped thus > far will not talk about any testing,and kind of tells me if it makes > me feel better go ahead w/diet.My mommy sense knows she is sick this > lastyear she has become OCD when she wasnt before and aggressive and > she never was before.She developed large lt tan spots on her thighs > and arms when she regressed,these change color and when I added CLO > to her vits one went away?what couldthis be?Baby has very small one, > is still spitting up and still hasloose stools. he likes to rock and > spin himself in circles on bottom and loves wheels to spin.he learns > a word then forgets it for couple weeks ,this is very scary as hfa > child did same thing and has moments of normalcy.she had no usefull > speech after regression until age4 but makes comments sometimes that > are very heartwrenching like you know i will never be able to get > married.child w/asperger has rashes aswell ezema,these are clearing > up and so is his behavior.in my family history schizophrenia,bipolar > dxslexia,and stomach problems colitis gallbladder fibromyalgia.My > husband and I both had asthma as children.He is adopted so no way of > knowing what is there but has some aspie traits.The main difference > in our kids thus far is the one w/as had no antibiotics till age > 3,neither did the one who seems nt.baby has had 1 round and a flushot > and dpt I had not really read enough and my ped badgered me.I do have > referal from ped for genetic DR can they help what should i ask them > to look for?also any suggestions on auditory processing,baby seems > to confuse like sounding words,and other children have auditory > processing problems hfa child severe and 1 eye turns in as well > but sight has improved in that eye per eye exam.any ideas > vits,supps,tests to persue.also i took nophenol enzyme and got awful > stomachache,so did child w hfa but next day backpain was better for > me thank you for your input > theresa > > > > > Many frequently asked questions and answers can be found at <http://forums.autism-rxguidebook.com> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hi Kathy, Thank you for replying to my post.I feel better that I can at least have some knowledge to go with.I do not know why this referal was one the ped wanted.I was disapointed that my ped was not concerned or helpful w diets and vits to help w/diet.especially w/baby.all children except baby so far have finemoter delays,they are most severe in the two asd kids who both have poor motor skills as well.all three of us also walk into and trip (clumsy)we all have bruises on our legs at all times.I also have to park far away from other cars.I cannot judge distances. Thank you for your help did any of your kids have reflux? both older son and baby do,ped not concerned as they otherwise are healthy based purely on observation my oldest child(different father )was a sickly child failure to thrive?she had an operation when she was a yr old they did something w/her kidneys.At time I was 18 and just did whatever Dr told me needed to be done and I still do not know what or why they did it.she did begin growing after surgery theresa genetically predisposed? > > Hello everyone, > I have just about finished reading Dr.McCandless book,Thank you for > writing it!I will take it to my ped and hope that this time I can > get him to listen or refer.after reading this now alot of things > make sense.I will try to condense for you and hope I make sense I > seem to have a problem communicating effectively but really need > some advice.My mother (deceased)was schizophrenic and dxslexic,my > sister is dyslexic also.I think I have some issues myself.My mother > wouold have years of normal,then would have major episodes,she > called me at start of last one going on about a chemical spilling on > her at work and now she would be sick again,and soon after she lost > all reality and then died.I have 5 children,4 have the same > father,of those 4,1 has aspergers,1 has HFA,1 was speech delayed > and 1 baby 1 yr old has mannerisms similar to HFA child.The hfa child > regressed at 15 mo after intensive antibiotics and shots,she > developed pica and was on antibiotics for several years.At one time > she was considered severe but progressed w/aba wraparound.she has > periods of regression every couple of years.she also is the first to > catch anything.she has stomach problems which cleared up w/secretin > but still persist even though whole family now gfcf 1 mo.also when > she was a baby she caught salmonella and was in hospital.My ped thus > far will not talk about any testing,and kind of tells me if it makes > me feel better go ahead w/diet.My mommy sense knows she is sick this > lastyear she has become OCD when she wasnt before and aggressive and > she never was before.She developed large lt tan spots on her thighs > and arms when she regressed,these change color and when I added CLO > to her vits one went away?what couldthis be?Baby has very small one, > is still spitting up and still hasloose stools. he likes to rock and > spin himself in circles on bottom and loves wheels to spin.he learns > a word then forgets it for couple weeks ,this is very scary as hfa > child did same thing and has moments of normalcy.she had no usefull > speech after regression until age4 but makes comments sometimes that > are very heartwrenching like you know i will never be able to get > married.child w/asperger has rashes aswell ezema,these are clearing > up and so is his behavior.in my family history schizophrenia,bipolar > dxslexia,and stomach problems colitis gallbladder fibromyalgia.My > husband and I both had asthma as children.He is adopted so no way of > knowing what is there but has some aspie traits.The main difference > in our kids thus far is the one w/as had no antibiotics till age > 3,neither did the one who seems nt.baby has had 1 round and a flushot > and dpt I had not really read enough and my ped badgered me.I do have > referal from ped for genetic DR can they help what should i ask them > to look for?also any suggestions on auditory processing,baby seems > to confuse like sounding words,and other children have auditory > processing problems hfa child severe and 1 eye turns in as well > but sight has improved in that eye per eye exam.any ideas > vits,supps,tests to persue.also i took nophenol enzyme and got awful > stomachache,so did child w hfa but next day backpain was better for > me thank you for your input > theresa > > > > > Many frequently asked questions and answers can be found at <http://forums.autism-rxguidebook.com> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Theresa - All 3 of mine have had reflux - my middle child has been on Pepcid long term. It's a common cause of irritability and night waking. I haven't found any regular docs to be helpful with diet or supplements - we go to a DAN doc and nutritionist. My pediatrician is impressed enough with the results to want to know more, though - that's how you start training them, by seeing results in your kids. Kathy genetically predisposed? > > > > > > Hello everyone, > > I have just about finished reading Dr.McCandless book,Thank you for > > writing it!I will take it to my ped and hope that this time I can > > get him to listen or refer.after reading this now alot of things > > make sense.I will try to condense for you and hope I make sense I > > seem to have a problem communicating effectively but really need > > some advice.My mother (deceased)was schizophrenic and dxslexic,my > > sister is dyslexic also.I think I have some issues myself.My mother > > wouold have years of normal,then would have major episodes,she > > called me at start of last one going on about a chemical spilling on > > her at work and now she would be sick again,and soon after she lost > > all reality and then died.I have 5 children,4 have the same > > father,of those 4,1 has aspergers,1 has HFA,1 was speech delayed > > and 1 baby 1 yr old has mannerisms similar to HFA child.The hfa child > > regressed at 15 mo after intensive antibiotics and shots,she > > developed pica and was on antibiotics for several years.At one time > > she was considered severe but progressed w/aba wraparound.she has > > periods of regression every couple of years.she also is the first to > > catch anything.she has stomach problems which cleared up w/secretin > > but still persist even though whole family now gfcf 1 mo.also when > > she was a baby she caught salmonella and was in hospital.My ped thus > > far will not talk about any testing,and kind of tells me if it makes > > me feel better go ahead w/diet.My mommy sense knows she is sick this > > lastyear she has become OCD when she wasnt before and aggressive and > > she never was before.She developed large lt tan spots on her thighs > > and arms when she regressed,these change color and when I added CLO > > to her vits one went away?what couldthis be?Baby has very small one, > > is still spitting up and still hasloose stools. he likes to rock and > > spin himself in circles on bottom and loves wheels to spin.he learns > > a word then forgets it for couple weeks ,this is very scary as hfa > > child did same thing and has moments of normalcy.she had no usefull > > speech after regression until age4 but makes comments sometimes that > > are very heartwrenching like you know i will never be able to get > > married.child w/asperger has rashes aswell ezema,these are clearing > > up and so is his behavior.in my family history schizophrenia,bipolar > > dxslexia,and stomach problems colitis gallbladder fibromyalgia.My > > husband and I both had asthma as children.He is adopted so no way of > > knowing what is there but has some aspie traits.The main difference > > in our kids thus far is the one w/as had no antibiotics till age > > 3,neither did the one who seems nt.baby has had 1 round and a flushot > > and dpt I had not really read enough and my ped badgered me.I do have > > referal from ped for genetic DR can they help what should i ask them > > to look for?also any suggestions on auditory processing,baby seems > > to confuse like sounding words,and other children have auditory > > processing problems hfa child severe and 1 eye turns in as well > > but sight has improved in that eye per eye exam.any ideas > > vits,supps,tests to persue.also i took nophenol enzyme and got awful > > stomachache,so did child w hfa but next day backpain was better for > > me thank you for your input > > theresa > > > > > > > > > > Many frequently asked questions and answers can be found at > <http://forums.autism-rxguidebook.com> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Kathy, Do you know of anything natural to give baby until I can get a Dr involved,I am currently looking for new ped or homeopathic Dr to help w/reflux in baby it wakes him up at night too,he also wheezes in his sleep and frequently has thick green mucus after being outside.did you breastfeed,I do am on diet as well I was just trying to figureout safest way to boost imune system for him,maybe increase my vits?I already take all I give kids except clo which makes me gag but kids like(its orange flavored)I looked at website,thank you!I see it is in pitt.we are seriously considering moving to that area anyway this summer.were you evaluated there? Theresa genetically predisposed? > > > > > > Hello everyone, > > I have just about finished reading Dr.McCandless book,Thank you for > > writing it!I will take it to my ped and hope that this time I can > > get him to listen or refer.after reading this now alot of things > > make sense.I will try to condense for you and hope I make sense I > > seem to have a problem communicating effectively but really need > > some advice.My mother (deceased)was schizophrenic and dxslexic,my > > sister is dyslexic also.I think I have some issues myself.My mother > > wouold have years of normal,then would have major episodes,she > > called me at start of last one going on about a chemical spilling on > > her at work and now she would be sick again,and soon after she lost > > all reality and then died.I have 5 children,4 have the same > > father,of those 4,1 has aspergers,1 has HFA,1 was speech delayed > > and 1 baby 1 yr old has mannerisms similar to HFA child.The hfa child > > regressed at 15 mo after intensive antibiotics and shots,she > > developed pica and was on antibiotics for several years.At one time > > she was considered severe but progressed w/aba wraparound.she has > > periods of regression every couple of years.she also is the first to > > catch anything.she has stomach problems which cleared up w/secretin > > but still persist even though whole family now gfcf 1 mo.also when > > she was a baby she caught salmonella and was in hospital.My ped thus > > far will not talk about any testing,and kind of tells me if it makes > > me feel better go ahead w/diet.My mommy sense knows she is sick this > > lastyear she has become OCD when she wasnt before and aggressive and > > she never was before.She developed large lt tan spots on her thighs > > and arms when she regressed,these change color and when I added CLO > > to her vits one went away?what couldthis be?Baby has very small one, > > is still spitting up and still hasloose stools. he likes to rock and > > spin himself in circles on bottom and loves wheels to spin.he learns > > a word then forgets it for couple weeks ,this is very scary as hfa > > child did same thing and has moments of normalcy.she had no usefull > > speech after regression until age4 but makes comments sometimes that > > are very heartwrenching like you know i will never be able to get > > married.child w/asperger has rashes aswell ezema,these are clearing > > up and so is his behavior.in my family history schizophrenia,bipolar > > dxslexia,and stomach problems colitis gallbladder fibromyalgia.My > > husband and I both had asthma as children.He is adopted so no way of > > knowing what is there but has some aspie traits.The main difference > > in our kids thus far is the one w/as had no antibiotics till age > > 3,neither did the one who seems nt.baby has had 1 round and a flushot > > and dpt I had not really read enough and my ped badgered me.I do have > > referal from ped for genetic DR can they help what should i ask them > > to look for?also any suggestions on auditory processing,baby seems > > to confuse like sounding words,and other children have auditory > > processing problems hfa child severe and 1 eye turns in as well > > but sight has improved in that eye per eye exam.any ideas > > vits,supps,tests to persue.also i took nophenol enzyme and got awful > > stomachache,so did child w hfa but next day backpain was better for > > me thank you for your input > > theresa > > > > > > > > > > Many frequently asked questions and answers can be found at > <http://forums.autism-rxguidebook.com> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 > I do am on diet Have you considered doing an elimination/rotation diet along with a food journal to identify whatever foods might be a problem for your child? I found " Is This Your Child? " by Doris Rapp to be very helpful. Lynne Quote Link to comment Share on other sites More sharing options...
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