Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Hi Kathleen, As soon as you can, see if either the school district you're in will help (can you even *have* an IEP when you're homeschooling?) with a neuropsychological assessment. If they won't or can't, then I'd suggest finding your own neuropsych doctor. Where are you currently located? You can either go to a child development center in a hospital or to a private neuropsychologist for a diagnosis (with referral from your doctor). There have also been diagnoses done by regular neurologists and regular psychologists, but I prefer the neuropsych from the research I've done- I feel it's more comprehensive. From there, there are a variety of services available to you depending on your location. Here in RI, all you need is a diagnosis to get services from a CEDARR center, who basically acts as a go-between for the Department of Human Services and the actual service providers who put staff people into people's homes (the parents are in charge of all services though) to assist their children to work toward specific goals. So, there's a start. As for the wandering off/running away business, one family I visited with recently has the same problem with their Autistic son. They had plastic handles over the regular door handles, that you had to squeeze in two particular spots before you could get a grip and turn the handle. There are also motion alarms you can rig up over the doors for fairly cheap and just turn on at night so that you can sleep more comfortably. Another option that we utilized when I worked in direct care was a pressure-sensitive mat. We used it for Alzheimer's patients who wandered. It let the staff know when the resident would get out of bed at night. That should be enough information for you to chew on for a bit! Good luck, and keep us posted. Be well, On 1/13/07, Visscher family <kvmoose@...> wrote: OKay.. here's where I'm at in this journey. I have 5 children. my 4 1/2 year old is the one who we think has autism. he is showing signs of it. he is a very smart little boy though. he can say the alphabet and count to 50, and lots of other things. but he doesn't converse. He has other little quirks. I am wondering how some of you have dealt with this. those that have other childen. we homeschool as well so I have all the children all the time. Isaac is my 4 year old:) he likes to play in the potty. he used to play in his diaper. he was hard to potty train but he is fully wet trained but still goes stinkies in his pants most of the time. he goes to the bathroom to do it but still.... I am not sure how to deal with this. he also doesn't seem to have normal social graces or pick them up like my other children have. he is the middle child. one of the children younger than him can say please and thank you. I have worked with Isaac on this and he just doesn't get it. he'll say the words but not at the right times:) he can say I'm sorry as well but not when he needs to. I am just not sure what to do. I am askign this now because my husband has been working long hours. as in this week he worked 95 hours. so it's me and the kids in a new town and I'm just kind of uncertain where to turn. I think I mentioned earlier that he has not been tested yet. we do not have insurance right now. soon though, Mark just switched jobs and we have to wait 90 days to get stuff with the new company. it'll be soon though. but how do I find a DR who is good at this? who will be understanding and not condemning? I really liked our former family DR back in MI he was great but what should look for in a DR that will be a great asset in helping Isaac be his best? I have more questions but I need to keep up with my kiddos here too! oh and one other thing. Isaac likes to escape. I have caught him but he has run out our front door, we live in a townhosue. no screen door to slow him down either! at our former home ( we owned a house and now we rent ) we had a screen door. and we used a hook and eye lock on the top and that worked pretty well. he opens the dead bolt here. and I had a latch on his bedroom door for at bedtime and he'd stay in there but now I do not and he is up wandering all over at all hours. I'm running on empty here. What can I do to keep him safe. and me sane:) I do have a windchime on the inside of the door as kind of an " Isaac " alert!! in the meantime.. please pray I meet new people and can get out there to find the right help for Isaac! I better go Kathleen -- Don't Breed, Don't Buy, Adopt! www.avianwelfare.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Dear Kathleen, It sounds like you are already doing well with many things. I really wish I could homeschool my kids, but there seem to be too many hurdles for me at this time. You will find the right doctor. Ask around as you get to know people. Maybe someone you meet tomorrow or next week will give you a lead. We will pray for you. I met most of our family doctors through a friend with a child with high functioning autism. I like those doctors much better than the one we had before who was condeming. Our new doctor is so positive I had to write him a letter as soon as I left the office. I wonder if he knew or realized how much a difference he made in our visit/lives by being positive. (I told him in the note) In the mean time you might want to do some reading? Learning always seems to empower me. It's a step forward? Moving is stressful. Again, it sounds like you are already doing an incredable job! Hang in there! (Mother of three on the spectrum) > OKay.. here's where I'm at in this journey. I have 5 children. > my 4 1/2 year old is the one who we think has autism. he is showing signs of it. > > he is a very smart little boy though. he can say the alphabet and count to 50, and lots of other things. but he doesn't converse. He has other little quirks. > I am wondering how some of you have dealt with this. those that have other childen. we homeschool as well so I have all the children all the time. > > Isaac is my 4 year old:) he likes to play in the potty. he used to play in his diaper. he was hard to potty train but he is fully wet trained but still goes stinkies in his pants most of the time. he goes to the bathroom to do it but still.... > > I am not sure how to deal with this. he also doesn't seem to have normal social graces or pick them up like my other children have. > > he is the middle child. one of the children younger than him can say please and thank you. I have worked with Isaac on this and he just doesn't get it. he'll say the words but not at the right times:) he can say I'm sorry as well but not when he needs to. > > I am just not sure what to do. > I am askign this now because my husband has been working long hours. as in this week he worked 95 hours. so it's me and the kids in a new town and I'm just kind of uncertain where to turn. > > I think I mentioned earlier that he has not been tested yet. we do not have insurance right now. soon though, Mark just switched jobs and we have to wait 90 days to get stuff with the new company. it'll be soon though. > > but how do I find a DR who is good at this? who will be understanding and not condemning? I really liked our former family DR back in MI he was great but what should look for in a DR that will be a great asset in helping Isaac be his best? > > I have more questions but I need to keep up with my kiddos here too! > > oh and one other thing. Isaac likes to escape. I have caught him but he has run out our front door, we live in a townhosue. no screen door to slow him down either! at our former home ( we owned a house and now we rent ) we had a screen door. and we used a hook and eye lock on the top and that worked pretty well. he opens the dead bolt here. > > and I had a latch on his bedroom door for at bedtime and he'd stay in there but now I do not and he is up wandering all over at all hours. I'm running on empty here. What can I do to keep him safe. and me sane:) > > I do have a windchime on the inside of the door as kind of an " Isaac " alert!! > > in the meantime.. please pray I meet new people and can get out there to find the right help for Isaac! > > I better go > Kathleen > > > > > > I love a child with Aspergers > Please, read, learn, and love > > KELLY > > > --------------------------------- > Sucker-punch spam with award-winning protection. > Try the free Beta. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Also there are government programs that will pay for alarm systems etc if necessary for your childs health and safety. My dd is in the "Mental Health Waiver Program" here in Iowa and as well as paying for therapy, they pay for items like the ones mentioned below. Just a thought, since I know my son quickly learned how to pull the plastic doorknob covers apart and THEN open the door! Good luck and God bless! DeeDee Avian Rights <avianrights@...> wrote: Hi Kathleen, As soon as you can, see if either the school district you're in will help (can you even *have* an IEP when you're homeschooling?) with a neuropsychological assessment. If they won't or can't, then I'd suggest finding your own neuropsych doctor. Where are you currently located? You can either go to a child development center in a hospital or to a private neuropsychologist for a diagnosis (with referral from your doctor). There have also been diagnoses done by regular neurologists and regular psychologists, but I prefer the neuropsych from the research I've done- I feel it's more comprehensive. From there, there are a variety of services available to you depending on your location. Here in RI, all you need is a diagnosis to get services from a CEDARR center, who basically acts as a go-between for the Department of Human Services and the actual service providers who put staff people into people's homes (the parents are in charge of all services though) to assist their children to work toward specific goals. So, there's a start. As for the wandering off/running away business, one family I visited with recently has the same problem with their Autistic son. They had plastic handles over the regular door handles, that you had to squeeze in two particular spots before you could get a grip and turn the handle. There are also motion alarms you can rig up over the doors for fairly cheap and just turn on at night so that you can sleep more comfortably. Another option that we utilized when I worked in direct care was a pressure-sensitive mat. We used it for Alzheimer's patients who wandered. It let the staff know when the resident would get out of bed at night. That should be enough information for you to chew on for a bit! Good luck, and keep us posted. Be well, On 1/13/07, Visscher family <kvmoosecomcast (DOT) net> wrote: OKay.. here's where I'm at in this journey. I have 5 children. my 4 1/2 year old is the one who we think has autism. he is showing signs of it. he is a very smart little boy though. he can say the alphabet and count to 50, and lots of other things. but he doesn't converse. He has other little quirks. I am wondering how some of you have dealt with this. those that have other childen. we homeschool as well so I have all the children all the time. Isaac is my 4 year old:) he likes to play in the potty. he used to play in his diaper. he was hard to potty train but he is fully wet trained but still goes stinkies in his pants most of the time. he goes to the bathroom to do it but still.... I am not sure how to deal with this. he also doesn't seem to have normal social graces or pick them up like my other children have. he is the middle child. one of the children younger than him can say please and thank you. I have worked with Isaac on this and he just doesn't get it. he'll say the words but not at the right times:) he can say I'm sorry as well but not when he needs to. I am just not sure what to do. I am askign this now because my husband has been working long hours. as in this week he worked 95 hours. so it's me and the kids in a new town and I'm just kind of uncertain where to turn. I think I mentioned earlier that he has not been tested yet. we do not have insurance right now. soon though, Mark just switched jobs and we have to wait 90 days to get stuff with the new company. it'll be soon though. but how do I find a DR who is good at this? who will be understanding and not condemning? I really liked our former family DR back in MI he was great but what should look for in a DR that will be a great asset in helping Isaac be his best? I have more questions but I need to keep up with my kiddos here too! oh and one other thing. Isaac likes to escape. I have caught him but he has run out our front door, we live in a townhosue. no screen door to slow him down either! at our former home ( we owned a house and now we rent ) we had a screen door. and we used a hook and eye lock on the top and that worked pretty well. he opens the dead bolt here. and I had a latch on his bedroom door for at bedtime and he'd stay in there but now I do not and he is up wandering all over at all hours. I'm running on empty here. What can I do to keep him safe. and me sane:) I do have a windchime on the inside of the door as kind of an "Isaac" alert!! in the meantime.. please pray I meet new people and can get out there to find the right help for Isaac! I better go Kathleen -- Don't Breed, Don't Buy, Adopt! www.avianwelfare.org Need Mail bonding?Go to the Q&A for great tips from Answers users. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 See below for reply... Questions Hi. Call me nick. Me and my partner found out that he is HIV+ on our 1st year anniversary. It was an incidental finding, as he had to do blood test for other reason. i have questions, appreciate your answers.1. I am tested negative. Is there any possibilities that i have been infected, but the test could not detect it yet? We didnt use protection throughout the 1 year. The last time we had sex was 2 weeks before my blood test. should i go for regular blood test? Yes, so you should continue to be tested regularly.2. He is perfectly healthy before the 'breaking news'. He was gaining weight. but lately his body is pretty warm -something like fever. and he looks tired. Are these symptoms or just the effects of shock and depression? Initially people experience flu-like symptoms when they convert... but if he hasn't been exposed since over a year ago he is likely just experiencing depression or something else... See the email from the doctor in San Francisico about this...3. We did a detailed blood test (inclusive of blood count, D4 etc). and the result is coming out in a month's time. while waiting for the result, what should we do? A month is along time but this is a good first step to see how healthy he is... there's nothing you need to do while you wait other than practice safer sex and be healthy... eat right, exercise, etc...4. Should he quit smoking? what about me? Yes to both! Regardless of HIV, but especially because of it.5. We used to visit the gym 3 times a week but stop last december. Should we go back? does it help? Yes... go back to the gym... it helps.... and remember, you can lead a pretty normal life with HIV6. What are the early symptoms? Symptoms of what? After initial infection peole sometimes experience severe flu like symptoms... After that you feel pretty normal... for a long time... it all depends how his blood counts are which will tell you how far along he is... you can be POZ and be very healthy... if the numbers indicate he needs meds he should start them... the doc will be able to tell you more... the doc should also run resistance test (Genotype/Phenotype) which will tell what type of meds will work and what he is resistant to. As I suggested... search the messages for things like 'symptoms' 'smoking', etc... there is a bunch of info in there....Thanks.Welcome to our group!If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to -subscribe and you will get an email with instructions to follow. You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group.For those of you who are members already and want to switch from single emails to digest or vice versa, visit www., click on , then on "edit my membership" and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! :)Thanks for joining. You will learn and share a lot in this group!NOTE: I moderate, approve or disapprove emails before they are posted. Please follow the guidelines shown in the homepage. I will not allow rudeness, sexually explicit material, attacks, and anyone who does not follow the rules. If you are not OK with this, please do not join the group. Forward this email to anyone who may benefit from this information! Thanks!In Health, Vergel (PoWeRTX@...)List Founder and Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 See below for reply... Questions Hi. Call me nick. Me and my partner found out that he is HIV+ on our 1st year anniversary. It was an incidental finding, as he had to do blood test for other reason. i have questions, appreciate your answers.1. I am tested negative. Is there any possibilities that i have been infected, but the test could not detect it yet? We didnt use protection throughout the 1 year. The last time we had sex was 2 weeks before my blood test. should i go for regular blood test? Yes, so you should continue to be tested regularly.2. He is perfectly healthy before the 'breaking news'. He was gaining weight. but lately his body is pretty warm -something like fever. and he looks tired. Are these symptoms or just the effects of shock and depression? Initially people experience flu-like symptoms when they convert... but if he hasn't been exposed since over a year ago he is likely just experiencing depression or something else... See the email from the doctor in San Francisico about this...3. We did a detailed blood test (inclusive of blood count, D4 etc). and the result is coming out in a month's time. while waiting for the result, what should we do? A month is along time but this is a good first step to see how healthy he is... there's nothing you need to do while you wait other than practice safer sex and be healthy... eat right, exercise, etc...4. Should he quit smoking? what about me? Yes to both! Regardless of HIV, but especially because of it.5. We used to visit the gym 3 times a week but stop last december. Should we go back? does it help? Yes... go back to the gym... it helps.... and remember, you can lead a pretty normal life with HIV6. What are the early symptoms? Symptoms of what? After initial infection peole sometimes experience severe flu like symptoms... After that you feel pretty normal... for a long time... it all depends how his blood counts are which will tell you how far along he is... you can be POZ and be very healthy... if the numbers indicate he needs meds he should start them... the doc will be able to tell you more... the doc should also run resistance test (Genotype/Phenotype) which will tell what type of meds will work and what he is resistant to. As I suggested... search the messages for things like 'symptoms' 'smoking', etc... there is a bunch of info in there....Thanks.Welcome to our group!If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to -subscribe and you will get an email with instructions to follow. You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group.For those of you who are members already and want to switch from single emails to digest or vice versa, visit www., click on , then on "edit my membership" and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! :)Thanks for joining. You will learn and share a lot in this group!NOTE: I moderate, approve or disapprove emails before they are posted. Please follow the guidelines shown in the homepage. I will not allow rudeness, sexually explicit material, attacks, and anyone who does not follow the rules. If you are not OK with this, please do not join the group. Forward this email to anyone who may benefit from this information! Thanks!In Health, Vergel (PoWeRTX@...)List Founder and Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 Hi... sorry for asking a bit more... as you know i am new in this. I found couple of interesting things (that i could not understand) in this email.... so i wonder if you could clarify it. > --- " jlew64@... " <jlew64@...> wrote: > > > > > Initially people experience flu-like symptoms when > > they convert... but if he hasn't been exposed > since > > over a year ago he is likely just experiencing > > depression or something else... See the email from > > the doctor in San Francisico about this... > > what do you mean with convertion? how long can one have the virus without being converted? This fever, or lot of sweatering one has.... is it dangerous? I know couple of people who are also hiv and they always ask me if i am having fever or if i sweat a lot (that is actually happening to me...)... but they don't explain me why/what is going on... it gets me nervous like if something bad could happen. > > 6. What are the early symptoms? > > > > Symptoms of what? After initial infection peole > > sometimes experience severe flu like symptoms... > > After that you feel pretty normal... for a long > > time... it all depends how his blood counts are > > which will tell you how far along he is... you can > > be POZ and be very healthy... if the numbers > > indicate he needs meds he should start them... the > > doc will be able to tell you more... the doc > should > > also run resistance test (Genotype/Phenotype) > which > > will tell what type of meds will work and what he > is > > resistant to. > > what do you mean with how far along he is? can this exams tell you when you will get really sick? if so.. can i prevent it? I am newly diagnosed, and my biggest fear is to get very ill some day... i have never been really sick... never been in a hospital for more than couple of hours... i am affraid i will fall in hospital bed. I want to avoid it. Other thing, here i have been told i will need to make CD4 and viral load test, goverment programme only covers CD4 test, the other i have to pay it but it is very very expensive. So i wonder that if i go to the Dr with the cd4 test and miss the viral load... would it be a problem? how long can i skip it since i am mostly healthy (i had diarrea for about 2 weeks but my stomage is mostly ok right now). Thanks for your answers... sorry if i ask too much. greetings XK ________________________________________________________________________________\ ____ Looking for earth-friendly autos? Browse Top Cars by " Green Rating " at Autos' Green Center. http://autos./green_center/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 Hi... sorry for asking a bit more... as you know i am new in this. I found couple of interesting things (that i could not understand) in this email.... so i wonder if you could clarify it. > --- " jlew64@... " <jlew64@...> wrote: > > > > > Initially people experience flu-like symptoms when > > they convert... but if he hasn't been exposed > since > > over a year ago he is likely just experiencing > > depression or something else... See the email from > > the doctor in San Francisico about this... > > what do you mean with convertion? how long can one have the virus without being converted? This fever, or lot of sweatering one has.... is it dangerous? I know couple of people who are also hiv and they always ask me if i am having fever or if i sweat a lot (that is actually happening to me...)... but they don't explain me why/what is going on... it gets me nervous like if something bad could happen. > > 6. What are the early symptoms? > > > > Symptoms of what? After initial infection peole > > sometimes experience severe flu like symptoms... > > After that you feel pretty normal... for a long > > time... it all depends how his blood counts are > > which will tell you how far along he is... you can > > be POZ and be very healthy... if the numbers > > indicate he needs meds he should start them... the > > doc will be able to tell you more... the doc > should > > also run resistance test (Genotype/Phenotype) > which > > will tell what type of meds will work and what he > is > > resistant to. > > what do you mean with how far along he is? can this exams tell you when you will get really sick? if so.. can i prevent it? I am newly diagnosed, and my biggest fear is to get very ill some day... i have never been really sick... never been in a hospital for more than couple of hours... i am affraid i will fall in hospital bed. I want to avoid it. Other thing, here i have been told i will need to make CD4 and viral load test, goverment programme only covers CD4 test, the other i have to pay it but it is very very expensive. So i wonder that if i go to the Dr with the cd4 test and miss the viral load... would it be a problem? how long can i skip it since i am mostly healthy (i had diarrea for about 2 weeks but my stomage is mostly ok right now). Thanks for your answers... sorry if i ask too much. greetings XK ________________________________________________________________________________\ ____ Looking for earth-friendly autos? Browse Top Cars by " Green Rating " at Autos' Green Center. http://autos./green_center/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 Just touching the metal lid for a short time period should not prove to be deadly. Its when you brew in metal it becomes a problem. Corning ware is fine, I was brewing in a ceramic pot ( untill the spigot decided to go belly up) Just be sure there is no lead in either the clay or the glaze. Simply touching a plate shouldn't be harmful, its long term exposure to lead and other metals that is the problem Tell your friend to stop worrying and just do the best she can. Im sure that scoby has survived and will make her a nice brew. Huggs zoe Thursday, April 5, 2007, 7:54:43 PM, you wrote: > i have a friend that is wanting to start brewing KT. i gave her a > scoby but i guess in transit from school to her home she is not sure > if the scoby accidentally may have touched the lid of the jar. i > guess the jar fell over in the car. what are the effects on the scoby > if it does touch metal? should she scrap it and wait for another one? > also is it ok for the scoby to touch a corningware or ceramic plate? > thanks for the help. > Ariella > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 thanks for responding. i just passed your email onto her. that is also good knowledge to know for myself Ariella > > i have a friend that is wanting to start brewing KT. i gave her a > > scoby but i guess in transit from school to her home she is not sure > > if the scoby accidentally may have touched the lid of the jar. i > > guess the jar fell over in the car. what are the effects on the scoby > > if it does touch metal? should she scrap it and wait for another one? > > > also is it ok for the scoby to touch a corningware or ceramic plate? > > > thanks for the help. > > > Ariella > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 , Thanks for the reply Do you know why your son has constipation? How did you prove the bladder had become numb? I use to think my son was constipated due to the fact he just didn't want to take the time to go to the bathroom. Now I am not so sure. He has bronchiectasis, adrenal insufficiency, responses to vaccinations but then loses them, particial response to pnuemonia vaccination AND no diagnosis. I have a daughter who is 6. She may have bronchiectasis. She is adrenally insufficient, with sinus and ear troubles, no HIB response (maybe?) AND no diagnosis. I have two older children with nothing wrong with them. I ask these questions just so I can understand. We keep looking for answers. I am trying to put the pieces together. Thanks for your time Theresa RCurk@... wrote: This is the same reason that was put on the Miralax. He does have very significant chronic constipation and it has pressed on the back of his bladder for so long, the bladder has become " numb " . As a result he doesn't urinate enough resulting in a backflow of urine into his right kidney. We are now looking at seeing a surgeon for evaluation to see if he is a possible candidate for the ACE procedure. We would look at doing it the same time that he has his ureter re-implantation surgery so that the kidney reflux never happens again due to chronic constipation. Sorry to hear that your little one has had several UTI's. They're not fun! In my thoughts and prayers, Mommy to Annette, specific antibody deficiency and Subclass IGG 2 and 4 deficient. IVIG x 4 years, Sub Q IG x 18 months and LOVES it. pervious T and B cell abnormalities and antibody deficiency. IVIG x 18 months. He had a complete recovery of function at the 6 months post IVIG trial and remains IVIG free. In the process of retesting all of his immunizations for the 3rd time to see if he held them this time. Mommy to 3 other beautiful and complicated children as well. LOL _www.caringbridge.com/ny/my2angels_ (http://www.caringbridge.com/ny/my2angels) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Ursula, Was her reflux caused by the colonic inertia and how did you know she had colonic inertia? The VCUG and ultrasound for my son showed no abnormalities. They told me he did not have reflux. My son and daughter have no real diagnosis and I am just trying to fit the pieces together (if it is possible). Thanks for your time Theresa Ursula Holleman <uahollem1@...> wrote: Macey takes Miralax for colonic inertia (delayed motility). She also has had repeated UTIs and Kidney infections due to kidney reflux on both sides. We've never been told the two are related. She had the kidney reflux before she ever showed signs of constipation (infancy) and her last VCUG at 6 yrs old was normal and her last kidney infection was around 5 yrs old. She still has constipation issues and is about to be 12. Ursula - mom to (14) and Macey (11, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Hi Theresa, 's VCUG indicate incomplete bladder emptying, but mainly because he just has SOOO much urine in there. The doctor explained that his colon is so dialated at this time that the colon presses on the back of the bladder and decreases sensation. This results in an excess acculamation of urine in the bladder and the backup of urine into his kidney. The only way to fully protect his kidneys at this point is to fully control the constipation. As to the " why " is he constipated? No one has answered that adequately for me. I have been very frustrated for years as to " why " this happens. He has had this problem since he was an infant (needed mineral oil 2 x a day for 3 years from 1 - 3 and then we went to Miralax). His biological brother, my one year old, is also having the same issues, but he also has a neurogenic bladder so they are evaluating him for tethered cord syndrome. is also having a full spine MRI to rule out tethered cord for him too, but I am pretty sure that this is not an issue for him, but will be relieved to hear it officially. Sorry I couldn't help more. Mommy to Annette, specific antibody deficiency and Subclass IGG 2 adn 4 deficient. IVIG x 4 years, Sub Q IG x 18 months and LOVES it. pervious T and B cell abnormalities and antibody deficiency. IVIG x 18 months. He had a complete recovery of function at the 6 months post IVIG trial and remains IVIG free. In the process of retesting all of his immunizations for the 3rd time to see if he held them this time. Mommy to 3 other beautiful and complicated children as well. LOL _www.caringbridge.com/ny/my2angels_ (http://www.caringbridge.com/ny/my2angels) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Yes, children with PID, autoimmune, and metabolic issues may have slow gut, back up, constipation or whatever the docs want to call it. You might have to educate the docs on this point. Though, very few of us have answers as to " why " this happens. A few years ago, Dani has an emergent CT scan on her abdomen -- doc suspected " pseudo obstruction " . Once she was cleaned out and maintained on miralax (can hardly stool without it), her abdominal pain, nausea, occasional vomiting, and high fevers of " unknown orgin " resolved. That was before the clean out and daily miralax use. She's been on it for 2 years and can hardly stool without it. mom to Dani, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 Thanks for the info Theresa Schulman <dietdoc@...> wrote: Yes, children with PID, autoimmune, and metabolic issues may have slow gut, back up, constipation or whatever the docs want to call it. You might have to educate the docs on this point. Though, very few of us have answers as to " why " this happens. A few years ago, Dani has an emergent CT scan on her abdomen -- doc suspected " pseudo obstruction " . Once she was cleaned out and maintained on miralax (can hardly stool without it), her abdominal pain, nausea, occasional vomiting, and high fevers of " unknown orgin " resolved. That was before the clean out and daily miralax use. She's been on it for 2 years and can hardly stool without it. mom to Dani, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 I'll repost this and see if I can get a Flame retardant answer this time > Like Frantz says, Hi-jacking saves the time of going to the site and starting a thread for the sake of a question or two. > 1. Since it's possible to buy dedicated filters, can we beginners assume that all the goodness lurks in solution rather than suspension? > 2. Also in my neck of the woods a search for Hibiscus yielded a herbal (Sorry USA, I still pronounce the " H " ) infusion of 50/50 Hibiscus/Rose hip, does the collective wisdom reckon this is viable? And if so, with added K sinensis a guesstimate of proportions would be appreciated. > 3. On seeing the warnings about over consumption, (can't say it's ever bothered me) and knowing that long keeping makes the brew more acetic, how do you reconcile this with the 2 or 3 or more continuous brews seen in some of the photos? > And finally Yippeeeee! At last I finally managed sufficient backlog to allow a full ferment. > Nn. England. Comical P.S. pruned. Stop being so intolerant. Of what? you stupid man. ? It takes time to get use to this stuff. I am sorry your patients is declined. But most of humans are that way. Way so dont worry everything will be ok ????????????????????????????Huh?????????????????????????????????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 In message <753043.49752.qm@...> you wrote: > 2.... infusion of 50/50 Hibiscus/Rose hip, does the collective wisdom > reckon this is viable? Yes, I (having collected all my scattered wisdom together) would say YES! Hibiscus and Rosehip are extremely compatible and similar in taste. Both are high in vitamin C and share other similar health benefits. > And if so, with added K sinensis a guesstimate of proportions would be > appreciated. This is a modification of Pangie's wonderful recipe. HibiKombu Water: 1 bucket/large glass (4 1/2 litres) Tea Green: 4 Teaspoons Tea White: 3 Teaspoons Herbal Tea Nettle: 2 Heaped Teaspoons Herbal Tea Hibiscus: 3-5 Teaspoons Sugar: 500 - 550 Grams (2 1/2 cups) If you use a Hibiscus/Rosehip herbal tisane instead Hibiscus only, I would use 5 teabags for the 4 1/2 - 5 litres (plus whatever tea you want to use!) Instead using white and green tea, you can use any green tea either by itself or with black or oolong tea. There are no hard and fast rules....just bung it in as the fancy takes you ;-) > And finally Yippeeeee! > At last I finally managed sufficient backlog to allow a full ferment. Oh, you mean that until now you were in such a hurry to get at the KT that you had it before it was actually properly finished?? ;-) > Comical P.S. > " So far my favorite KT is the WOG. (White OOlong, Green) KT. " > Is this term still politically correct Absolutely, 100% and if you disagree, you are welcome to come over for a merry punch-up ;-) Explanation: The problem does not lie in the word, but what people chose to associate it with. Good job that Kombucha is ALWAYS politically correct, or better still, cut out the 'politically', it might give it a bad taste or odour ;-) definitely kombuchaly, especially the blushing one :0), Margret -- +------------------ Minstrel@... --------------------+ <)))<>< http://www.therpc.f9.co.uk <)))<>< http://www.AnswersInGenesis.com +----------------- http://www.Gotquestions.org ------------------+ Be Cheerful. Of all the things you wear, your expression is most important Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Margret, Belated thanks, It was more the proportions and the 50% rose hip I was after. I'm sure I can flex it to suit. Nn. England. <)))<>< http://www.therpc.f9.co.uk <)))<>< http://www.AnswersInGenesis.com +----------------- http://www.Gotquestions.org ------------------+ Be Cheerful. Of all the things you wear, your expression is most important Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Margret, Belated thanks, It was more the proportions and the 50% rose hip I was after. I'm sure I can flex it to suit. Nn. England. <)))<>< http://www.therpc.f9.co.uk <)))<>< http://www.AnswersInGenesis.com +----------------- http://www.Gotquestions.org ------------------+ Be Cheerful. Of all the things you wear, your expression is most important Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Hi Lois, Don't worry, I am not going to answer your questions. LOL Although I know some answers from all my reading. I have been reading for hrs! Anyway, did you check out Kombucha Unveiled yet? It's great! http://users.bestweb.net/~om/~kombu/FAQ/homeFAQ.html jan > > I just read that is is important to rinse the Kombucha colony under cool > water before replacing it into the fermenting jar. Do you do this? > Consistently? Not at all? > > For second ferment or storage: which caps do you prefer and why? > Recycled bottle tops? EZ Cap? Corks? Air-lock? Other?... > > > Happy Sunday! > Lois (in the Midsouth) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 On 7/1/07, bosseringme <bosseringme@...> wrote: > > I just read that is is important to rinse the Kombucha colony under cool > water before replacing it into the fermenting jar. Do you do this? > Consistently? Not at all? ****I never rinse my scobies. If for some reason you MUST rinse a scoby I would only do so with either sour KT or white distilled vinegar. For second ferment or storage: which caps do you prefer and why? > Recycled bottle tops? EZ Cap? Corks? Air-lock? Other? ****I use a combination of bottles. I have Grolsch beer bottles which are equal to the EZ Cap bottles. I have Perrier and Peligreno glass water bottles(I have replaced the metal caps with plastic soda bottle caps). I have a couple of wine or sparkling apple juice bottles that had screw on metal caps (soda bottle caps fit these bottles). I also have some Sobe bottles (I've replaced their metal caps with plastic caps from salad dressing bottles.) I even have a large four liter bottle that once held domestic wine (the salad dressing bottle caps fit these as well). Because I am on a very limited budget, I try to purchase bottles that have contents that I will use and then recycle the bottle. I have found that the Grolsch beer bottles hold carbonation the best with the Perrier water bottles coming in second. If a recycled metal cap has plastic at the inner top, is it okay to use? *****Some people say yes as long as you frequently inspect the inner liner as it will eventually degrade. Personally if I can't replace a metal cap with a plastic one from a different type of bottle, then I put several layers of plastic wrap between the cap and the bottle. I do this on a few Arizona Tea bottles and some apple juice bottles that I haven't found plastic replacement caps for yet...still looking but haven't found them yet. Do you leave air space at the top? Do you fill completely to top to > block out air (in order to avoid possibility of mold)? ****On brews that don't have a whole lot of fizz, sometimes my bottles get filled to the top but usually my brews are fizzy enough that when I pour them into my bottles they create enough bubbles that it makes them difficult to fill to the top. Do you always bottle for a 2nd ferment? Or consume as is? ****Again depends upon how much backlog I have...I will usually have at least one glass of each brew while bottling it. If I am low on KT, then it gets consumed fairly quickly...when I have been on an experimentation jag and have lots of it bottled then most of it gets a secondary ferment because I try to consume the oldest KT first. Is it okay to fold those extra scobies for storage? Or should the > storage container be sized accordingly? ****They should be fine folded (though they may grow together) as long as they are covered with acidic KT. Are stored scobies covered with brew from that batch? New sweet tea > added? ****If I am not immediately starting another batch, then the scobys are either returned to the Starter Jar (large jar with very acidic KT that holds extra scobys) or if I am only delaying the new batch for a short period of time (life interferring etc.) then I will put them back in the same jar with two cups of starter tea from the just bottled brew and let that sit until I have time to start the next batch. Do you clarify your ferments? And if so, what do you use and when? ****Only if I am planning on giving them to someone else and then I do so at bottling. I use a plastic strainer that I bought on ebay to catch the yeast bits. For myself everything goes into the bottles and I drink it with the KT. Even the little scobys that can form in the bottles...I just swallow them like you would an oyster. If there is " mother " in the bottle (as in the bottom of raw ACV), will > that turn into a colony? And can it be added to another brew as one > would add a scoby? **** Small scobys that form during secondary ferments in the bottles can be used to brew along with sufficient starter tea to a batch, however I just either swallow them if they are blobby or feed them to the dogs if they have gotten to the more spongey stage. I burped those very first new bottles this morning. One (no raisins) > did actually " burp " and the other (with raisins) did not. Comments? ****Each bottle is different. Perhaps one holds the seal better. I have had bottles from the same batch with no additions act differently from one another. If anyone has time to answer any of these questions, thank you so much! > > Happy Sunday! > Lois (in the Midsouth) > > -- Live and Love Well, Sandy (Jennings, FL; zone 8b) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 On 7/1/07, bosseringme <bosseringme@...> wrote: > > I just read that is is important to rinse the Kombucha colony under cool > water before replacing it into the fermenting jar. Do you do this? > Consistently? Not at all? ****I never rinse my scobies. If for some reason you MUST rinse a scoby I would only do so with either sour KT or white distilled vinegar. For second ferment or storage: which caps do you prefer and why? > Recycled bottle tops? EZ Cap? Corks? Air-lock? Other? ****I use a combination of bottles. I have Grolsch beer bottles which are equal to the EZ Cap bottles. I have Perrier and Peligreno glass water bottles(I have replaced the metal caps with plastic soda bottle caps). I have a couple of wine or sparkling apple juice bottles that had screw on metal caps (soda bottle caps fit these bottles). I also have some Sobe bottles (I've replaced their metal caps with plastic caps from salad dressing bottles.) I even have a large four liter bottle that once held domestic wine (the salad dressing bottle caps fit these as well). Because I am on a very limited budget, I try to purchase bottles that have contents that I will use and then recycle the bottle. I have found that the Grolsch beer bottles hold carbonation the best with the Perrier water bottles coming in second. If a recycled metal cap has plastic at the inner top, is it okay to use? *****Some people say yes as long as you frequently inspect the inner liner as it will eventually degrade. Personally if I can't replace a metal cap with a plastic one from a different type of bottle, then I put several layers of plastic wrap between the cap and the bottle. I do this on a few Arizona Tea bottles and some apple juice bottles that I haven't found plastic replacement caps for yet...still looking but haven't found them yet. Do you leave air space at the top? Do you fill completely to top to > block out air (in order to avoid possibility of mold)? ****On brews that don't have a whole lot of fizz, sometimes my bottles get filled to the top but usually my brews are fizzy enough that when I pour them into my bottles they create enough bubbles that it makes them difficult to fill to the top. Do you always bottle for a 2nd ferment? Or consume as is? ****Again depends upon how much backlog I have...I will usually have at least one glass of each brew while bottling it. If I am low on KT, then it gets consumed fairly quickly...when I have been on an experimentation jag and have lots of it bottled then most of it gets a secondary ferment because I try to consume the oldest KT first. Is it okay to fold those extra scobies for storage? Or should the > storage container be sized accordingly? ****They should be fine folded (though they may grow together) as long as they are covered with acidic KT. Are stored scobies covered with brew from that batch? New sweet tea > added? ****If I am not immediately starting another batch, then the scobys are either returned to the Starter Jar (large jar with very acidic KT that holds extra scobys) or if I am only delaying the new batch for a short period of time (life interferring etc.) then I will put them back in the same jar with two cups of starter tea from the just bottled brew and let that sit until I have time to start the next batch. Do you clarify your ferments? And if so, what do you use and when? ****Only if I am planning on giving them to someone else and then I do so at bottling. I use a plastic strainer that I bought on ebay to catch the yeast bits. For myself everything goes into the bottles and I drink it with the KT. Even the little scobys that can form in the bottles...I just swallow them like you would an oyster. If there is " mother " in the bottle (as in the bottom of raw ACV), will > that turn into a colony? And can it be added to another brew as one > would add a scoby? **** Small scobys that form during secondary ferments in the bottles can be used to brew along with sufficient starter tea to a batch, however I just either swallow them if they are blobby or feed them to the dogs if they have gotten to the more spongey stage. I burped those very first new bottles this morning. One (no raisins) > did actually " burp " and the other (with raisins) did not. Comments? ****Each bottle is different. Perhaps one holds the seal better. I have had bottles from the same batch with no additions act differently from one another. If anyone has time to answer any of these questions, thank you so much! > > Happy Sunday! > Lois (in the Midsouth) > > -- Live and Love Well, Sandy (Jennings, FL; zone 8b) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 In message <f68mck+djgleGroups> you wrote: > I just read that is is important to rinse the Kombucha colony under cool > water before replacing it into the fermenting jar. Do you do this? > Consistently? Not at all? Dear Lois, If you want to lay your culture open to mold, wash it regularly in water. It gets rid of its concentrated acidic mantle of protection! ;-) It's extremely bad advice!! The person who suggested that should be scrubbed in water.....;-) > For second ferment or storage: which caps do you prefer and why? > Recycled bottle tops? EZ Cap? Corks? Air-lock? Other? Caps or corks do nicely. With an airlock you would not get any fizz, as the CO2 would escape the bottle via the airlock. > If a recycled metal cap has plastic at the inner top, is it okay to use? Yes. > Do you leave air space at the top? Do you fill completely to top to > block out air (in order to avoid possibility of mold)? I fill my bottles right to the top (except when they are corked). I have never had mold in any Kombucha bottle, even ones kept for many weeks. > Do you always bottle for a 2nd ferment? Mostly yes, for convenience, but I also leave some KT ready to drink in a jug-like bottle ready for decanting. > Or consume as is? That is completely o.k.! I do it all the time, even whilst bottling ;-) > Is it okay to fold those extra scobies for storage? Or should the > storage container be sized accordingly? Neatness is not an issue in scoby storage ;-) > Are stored scobies covered with brew from that batch? Yes, that is best! As you deplete the liquid using it as starter liquid for your new brews, you can add subsequent scobys and fresh KT from other brews. > New sweet tea added? Not so good, as this stimulates the yeasts and might give you a quick- souring, not so pleasant tasting KT. From my experience it is always best to just top up the KT in the holding jar with fresh KT.... less sugar. > Do you clarify your ferments? And if so, what do you use and when? Why would you want to? Unless your brew is abnormally yeasty, your KT should clear nicely by itself. You get a small yeast deposit on the bottom of the bottle, but all the rest of the liquid is quite clear. > If there is " mother " in the bottle (as in the bottom of raw ACV), will > that turn into a colony? And can it be added to another brew as one > would add a scoby? Yes, you could use it with plenty of brewed KT to brew another batch.... if you don't eat it first ;-) > I burped those very first new bottles this morning. One (no raisins) > did actually " burp " and the other (with raisins) did not. Comments? The burping just makes sure that any possible excess pressure is released before it can burst the bottle. The ones that have already a pronounce fizz I put first in the line of bottles ready for consumption. Very often you will find, that even bottles which didn't have a strong pffff on opening have developed a pleasant bubbliness in the KT. I hope that these answers have helped a little in your bottling quest. Enjoy the contents and don't worry too much! Have a good week, Margret:-) from the cool English Midlands across the Big Pond! -- +------------------ Minstrel@... --------------------+ <)))<>< http://www.therpc.f9.co.uk <)))<>< http://www.AnswersInGenesis.com +----------------- http://www.Gotquestions.org ------------------+ A truly happy person is one who can enjoy the scenery on a detour. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 In message <f68mck+djgleGroups> you wrote: > I just read that is is important to rinse the Kombucha colony under cool > water before replacing it into the fermenting jar. Do you do this? > Consistently? Not at all? Dear Lois, If you want to lay your culture open to mold, wash it regularly in water. It gets rid of its concentrated acidic mantle of protection! ;-) It's extremely bad advice!! The person who suggested that should be scrubbed in water.....;-) > For second ferment or storage: which caps do you prefer and why? > Recycled bottle tops? EZ Cap? Corks? Air-lock? Other? Caps or corks do nicely. With an airlock you would not get any fizz, as the CO2 would escape the bottle via the airlock. > If a recycled metal cap has plastic at the inner top, is it okay to use? Yes. > Do you leave air space at the top? Do you fill completely to top to > block out air (in order to avoid possibility of mold)? I fill my bottles right to the top (except when they are corked). I have never had mold in any Kombucha bottle, even ones kept for many weeks. > Do you always bottle for a 2nd ferment? Mostly yes, for convenience, but I also leave some KT ready to drink in a jug-like bottle ready for decanting. > Or consume as is? That is completely o.k.! I do it all the time, even whilst bottling ;-) > Is it okay to fold those extra scobies for storage? Or should the > storage container be sized accordingly? Neatness is not an issue in scoby storage ;-) > Are stored scobies covered with brew from that batch? Yes, that is best! As you deplete the liquid using it as starter liquid for your new brews, you can add subsequent scobys and fresh KT from other brews. > New sweet tea added? Not so good, as this stimulates the yeasts and might give you a quick- souring, not so pleasant tasting KT. From my experience it is always best to just top up the KT in the holding jar with fresh KT.... less sugar. > Do you clarify your ferments? And if so, what do you use and when? Why would you want to? Unless your brew is abnormally yeasty, your KT should clear nicely by itself. You get a small yeast deposit on the bottom of the bottle, but all the rest of the liquid is quite clear. > If there is " mother " in the bottle (as in the bottom of raw ACV), will > that turn into a colony? And can it be added to another brew as one > would add a scoby? Yes, you could use it with plenty of brewed KT to brew another batch.... if you don't eat it first ;-) > I burped those very first new bottles this morning. One (no raisins) > did actually " burp " and the other (with raisins) did not. Comments? The burping just makes sure that any possible excess pressure is released before it can burst the bottle. The ones that have already a pronounce fizz I put first in the line of bottles ready for consumption. Very often you will find, that even bottles which didn't have a strong pffff on opening have developed a pleasant bubbliness in the KT. I hope that these answers have helped a little in your bottling quest. Enjoy the contents and don't worry too much! Have a good week, Margret:-) from the cool English Midlands across the Big Pond! -- +------------------ Minstrel@... --------------------+ <)))<>< http://www.therpc.f9.co.uk <)))<>< http://www.AnswersInGenesis.com +----------------- http://www.Gotquestions.org ------------------+ A truly happy person is one who can enjoy the scenery on a detour. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 Just a thought re: the non-raisin batch burping, and the raisin batch not burping...I noticed the exact same thing with two batches of my KT, and the conclusion that I came to was that perhaps the raisins I'd bought were sulphured, and that affected the yeast in the KT. Maybe that is what happened to your raisin batch as well? --------------------------------- Get the free toolbar and rest assured with the added security of spyware protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 Just a thought re: the non-raisin batch burping, and the raisin batch not burping...I noticed the exact same thing with two batches of my KT, and the conclusion that I came to was that perhaps the raisins I'd bought were sulphured, and that affected the yeast in the KT. Maybe that is what happened to your raisin batch as well? --------------------------------- Get the free toolbar and rest assured with the added security of spyware protection. Quote Link to comment Share on other sites More sharing options...
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