Guest guest Posted December 3, 2000 Report Share Posted December 3, 2000 Grady, Thanks for the laughs you have given me today. I thought you would get more help with your hair problem. I have a couple of suggestions: There are lovely hairnets that you could wear when you go to bed. They come in most hair colors. They also have sleep bonnets that we who use to sleep in rollers wore to keep them in place. Another suggestion is to wrap your head in toilet paper and fasten it with a bobbi pin. doilies made out of Skunk hair using only 'tooth picks' as knitting needles? To be used on our tables for when we entertain big people with our very own short-bread cookies. Any ideas? Any well used and I would be interested in a set of these but I would only want the white hairs of the skunk!Good Luck on your business! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Deanna - Yes...! We have started Jacqui on enzymes (to break down peptides) and we have been seeing some very interesting results. The amazing thing to us was when she missed a day (after only taking tem about 1 1/2 weeks), we could clearly see a difference. She is now on them twice a day (w/ lunch and dinner) and we are trying to get her up to 3 times a day. Penny-------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on " If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away. " --Henry Thoreau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Penny - how many do you give her with each meal? Back in February I started B on Serenaid which has both a protease and a peptidase enzyme in it. We saw disastrous effects. She went from being fairly calm and reasonable (effects of the CLO were showing- and we were thrilled)to hyper, screaming, noise making, echolalia, babbling etc. I couldn't stand it and took her off after 2.5 weeks. They do say you will see regression at first but it was just to much for us after the great stuff we were seeing with the CLO. I have wondered since if I started her out at to high a dose (gave her to many ). Just recently I have started using them if we go to a restaurant, just in case, but I only give her one. She learned to take pills when I started occasionally giving her Melatonin. I pill her about the same way I used to pill dogs and cats when I was a vet tech. Now she asks me to help her(put it toward the back of her tongue). I have heard that some people try 3 or 4 enzymes before they find the one that works for their child. I have also heard good things about Peptizide. (sp?) Interesting stuff...glad you've found something that is showing a difference. Have you ever tried B6? Deanna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Deanna - Right now we give her one per meal (one at lunch, one at dinner). We open the capsule and mix it with her food. Sorry you had those results with Bridget :-( That would discourage me too... I haven't tried B6, but I do want to start her on B6 & magnesium....just not sure how to go about it yet and at what dosage... It's next on my list :-) Penny-------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on " If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away. " --Henry Thoreau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Penny- Do you ever feel like there are to many things on the list? Deanna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 I occasionally give Haylee a break from supplements too. Not sure what my reasoning is. Guess I get sick of handing them out every day. I also worry because she only has one kidney that the supplements may be hard on it. Dawn >From: " Deanna " <DeeCGann@...> >Reply-Autism_in_Girls >Autism_in_Girls >Subject: Just wondering... >Date: Tue, 07 Aug 2001 00:14:32 -0000 > >I took a break, or should I say, gave Bridget a break from taking her >supplements. She had done really well for a couple of weeks and then >I thought she seemed a little listless, less able to think clearly >etc. So...a couple of days ago I started her back on CLO and flax >oil. I have seen another jump in conversational language, her >ability to express herself, and her sociability and joint attention. >Seems like if I watch her I can tell when she needs stuff and then >again when she doesn't. Have other people noticed this with their >children? I'm waiting for Spectrum Support II to come from >BrainChild Nutritionals and I'm hoping that it does well for us. >I'll also start giving her NightCal. Thanks, Deanna > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Deanna - If by " the list " you mean everything we research that we think will help our kids..then yep, I do...But what choice do we have, right? Is that what you meant? Penny-------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on " If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away. " --Henry Thoreau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 I haven't tried B6, but I do want to start her on B6 & magnesium....just not sure how to go about it yet and at what dosage... It's next on my list :-) You can get this from Kirkman Labs in Oregon. They make a supplement specifically for autistic spectrum individuals called SuperNu Thera. It is glutton and casein free and they give you the dosage. Valeri Penny -------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on " If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away. " --Henry Thoreau Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hello Ursula, What does the DDAVP do? I have only heard of it's use for clotting factor deficiency before surgery. I know that for this particular use, it is only effective one time. I have never know what else it is used for, so thanks! Sandi--Mom to , age 8. Suspected IgA def., Tetrology of Falot, chronic sinusitis, chronic ear infections (with tubes), severe allergies. Nine surgeries, one pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Macey is still incontinent at night but it has to do with her Diabetes Insipidus. She takes DDAVP but it doesn't always work because of her sinuses being clogged constantly. She wears a pull up at night and we've been told that she may be like that forever. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 DDAVP is the man-made version of a hormone that is produced in the hypothalamus called ADH. ADH regulates how much you excrete by your kidneys and it also plays a part in thirst. Without ADH you become dehydrated and sodium is not excreted causing renal failure. The DDAVP (ADH) allows Macey to not tinkle as much (which translates into not as often) and not to be thirsty all the time. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Ursula, is the DDAVP a nasal spray? My step son (age 15, still incontinent...yet his mother does nothing...long angry story!!) used the nasal spray, I forget the name, while he was with us last year. Although, the pediatrician said he would put Kody on a pill for it, but, I don't know what it is. I'm sorry that Macey may not grow out of hers. As if our children don't have enough to worry about! I can't get Kody to wear a pull up, he is mortally offended at the mere suggestion. So we have rubber sheets on the bed, and lots of extra bedding handy. At least some of Kody's problem is his seizures, if he has seizure activity at night he will lose control, however, those have been under control with Depakote for a while now. He is doing well waiting until I tell him to go potty today, but he still only lasts about an hour and 20 minutes. But, hey, that is 5 minutes longer than yesterday!! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 In a message dated 1/16/02 4:00:05 AM Pacific Standard Time, schmidtzoo@... writes: > Does anyone else's child have a problem with bladder control? Kody still > wets the bed, YEs, does. He is 11 and I feel now we have a good handle on things. Has Kody been to a pediatric urologist to rule out any obvious problems? I would do that. They will do an ultra sound to check the bladder and kidney functions. Also they do a flow test......they " pee into a cool machine " in private. In extreme cases a urodynamics test is done..............lets just say I pray no child has to go thru this! We had to because had lost all control, day and night. Here is 's story in a nutshell. He has always wet the bed. IT does not run in the family. He used pull ups until he was 9 at night...his choice..... ... We use a water proof matress cover, it has a cloth top so you can't feel or hear the plastic. Then we use a underpad between the cover and the sheets. Its what the hospital uses. Then if there is an accident I just change the sheets and throw away the " liner " . has been seen at LPCH at Stanford by a urologist for three years. We tried the DDvap pills and spray and it did nothing for us!! I do not know if and it was never suggested to us that IVIG would cause this. I'll have to ask next time we go in. In third grade lost all control of bladder and bowel functions. It was horrible. Amazingly enough what worked for us was a combination of two things. After all the testing was done. ryan had an over actice bladder. The doctor sent us to Bio Feedback at Stanford to help retrain nerves and muscles to gain control. We went for 10 weeks and it worked!!! The Doctor also put on Ditropan XL 15mg. twice a day. is now dry during the day with an ocassional dampness (once a month). We have gone from being wet every night to about twice a month. would always be soaking wet at night. With the Ditropan we had to find the right dose that worked. Also there are two versions of Ditropan.....one reg and one time release. The regular one caused blurred vision in . We had much more succes with the XL , time release version. He takes one in am and one at night. I d really encourage a ped urologist, Good luck le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 In a message dated 1/16/02 10:27:53 AM Pacific Standard Time, uahollem@... writes: > She takes DDAVP but it > doesn't always work because of her sinuses being clogged > Ursula, Have you tried Ditropan? It really made a difference for . le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 In a message dated 1/16/02 10:27:53 AM Pacific Standard Time, uahollem@... writes: > She takes DDAVP but it > doesn't always work because of her sinuses being clogged > Ursula, Have you tried Ditropan? It really made a difference for . le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 I believe Ditropan is an antispasmodic that keeps the bladder relaxed and not urinating all the time. If we used that then her hormone wouldn't be replaced and although she wouldn't be tinkling all the time she still wouldn't have control of her thirst sensation and would drink constantly. Too much drinking and too little urinating and she'd be water intoxicated. The DDAVP replaces the ADH not made and we seem to keep an even keel. thanks for the suggestion though. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 I believe Ditropan is an antispasmodic that keeps the bladder relaxed and not urinating all the time. If we used that then her hormone wouldn't be replaced and although she wouldn't be tinkling all the time she still wouldn't have control of her thirst sensation and would drink constantly. Too much drinking and too little urinating and she'd be water intoxicated. The DDAVP replaces the ADH not made and we seem to keep an even keel. thanks for the suggestion though. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 9:41:38 PM Central Daylight Time, gtdeakin@... writes: > What's with his WALKING obsession? When > you have severe physical limitations like we do, not walking is the least of > our worries ... in my opinion. > > Oh I agree! ! I've never really dreamed of walking. Being able to cough yes! Screaming yes! Itching my own nose yes! Holding my head up or biting/chewing a BIG hamburger on a bun with the works yes! If I was him I'd rather breathe or feel my body again than walk! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 9:14:34 PM Central Daylight Time, nicoleroberts@... writes: > What about darth vader???????? ;-) uhm he was vented? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 I think the reason they try to get him up is so he wont atrophy/lose muscle and get contractions. So when he's cured he can walk. I saw on TV a few years ago he was boasting he still had muscles and they weren't tight. Uhm yea if I was rich and famous I could get all the new treatments and trained nurses and therapy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 2:22:16 PM Central Daylight Time, DeTannous@... writes: > . I know his main goal is > to walk again but I was wondering how him walking would be possible if he's > if he can walk again i'm sure he'd breath again.... to walk his cord would be repaired so would his ability to feel, breath, pee....more than likely..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 10:21:13 PM Central Daylight Time, eross@... writes: > > Well he sure breathes funny.... sounds like a vent to me... > maybe he NEEDS one lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 What about darth vader???????? ;-) lol! On 7/1/02 2:20 PM, " DeTannous@... " <DeTannous@...> wrote: > Hey everyone.... > > I was just reading an article about a new tv show (a 3 part speical) that > will document Reeve's attempts to walk. I know his main goal is > to walk again but I was wondering how him walking would be possible if he's > vented 24/7. I've never seen anyone in that situation not be in a wheelchair. > Ahhh... Am I making any sense?? > > Dee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 YEah Dee, its rather crazy in my opinion. im picturing him running around with a vent strapped to his back. What's with his WALKING obsession? When you have severe physical limitations like we do, not walking is the least of our worries ... in my opinion. Re: Just wondering... What about darth vader???????? ;-) lol! On 7/1/02 2:20 PM, " DeTannous@... " <DeTannous@...> wrote: > Hey everyone.... > > I was just reading an article about a new tv show (a 3 part speical) that > will document Reeve's attempts to walk. I know his main goal is > to walk again but I was wondering how him walking would be possible if he's > vented 24/7. I've never seen anyone in that situation not be in a wheelchair. > Ahhh... Am I making any sense?? > > Dee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Well he sure breathes funny.... sounds like a vent to me... > uhm he was vented? Quote Link to comment Share on other sites More sharing options...
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