Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Hi , I just use powdered (you can also take it out of a capsule), mix with a little water and do an implant before I go to bed with one of those rubber bulbs like you suction a babies nose out with. And when I get lazy, <grin>, I double or triple my normal dose orally. I will have to admit I do this often and it works great for me. > , > Do you have a source for a probiotic suppository? I > have been able to find them in any stores around here > and also not on the Internet. > Thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 His head is big and they have watched it but could it have anything to do with the c-toma ? Hello I don't want to distress you unduly but has your doctor discounted Hydrocephalus (Water on the brain) as a possible cause for your son's enlarged head? I only mention this because, when I was first diagnosed, my doctor suggested as one of the possible cranial complications of c-toma. This disease (which is more common in children than c-toma) is caused by a blockage of cerebro-spinal fluid and as such it is more of a neurological than an ENT problem. Nowadays it's a very treatable condition especially when caught early enough. I hope I'm completely off-track with this but I thought it might be worth seeking the doctor's reassurance about it. Best wishes Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Dear , I'm so sorry to hear that your wife died. I hope you are surrounded by loving friends and family to help you through your grief. Take care, >From: AntJoan@... >Reply-hyperthyroidism >hyperthyroidism >Subject: Re: Re: to Deb... ....... >ithyroid.com >Date: Tue, 11 Mar 2003 07:17:38 EST > >Dear , > >You are truly an amazing person. We are all so sorry for your loss. > >Love, >AntJoan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 In a message dated 3/11/2003 10:32:37 PM Eastern Standard Time, weinert@... writes: > So, where does that leave us? Do we have the right to insist they > have a mainstream kindergarten that ** IS ** suitable for her? I > know, for instance, that our district's next closest school's > kindergarten doesn't do all this singing and doesn't combine the > classes into 40 kids very often, if at all. There aren't any openings > there, though. Of course, changing yet again wouldn't be easy for > her. > if the IEP is written based on your daughter's needs/strengths...then they have to provide the program or find it elsewhere for her. They cannot use the excuse that " we don't do that here " . Either by paying for a private program or sending her out of district...there has to be a way for them to accommodate her. Recently in a town close to mine..there was a lawsuit. Child was diagnosed with Asperger's and gifted academically. School could not or would not provide. Parents took child out of school and filed a law suit. State has just returned a verdict. School department has been ordered to provide a suitable program for this child which involves learning and academics at his level. School had originally only agreed to a 504 plan because the child had no academic issues. The state has ordered that based on his " disability " , Asperger's and the fact that he is gifted, they have to provide an IEP to make sure he receives FAPE. This was a ground breaking case around here..because school districts do not usually give children with Asperger's IEP's...Just a side note. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 > if the IEP is written based on your daughter's needs/strengths...then > they have to provide the program or find it elsewhere for her. They cannot > use the excuse that " we don't do that here " . Well, the concert with all this singing is over tomorrow. I just want to be sure the aide feels she has permission to take my daughter out of any stressful situation. There is yet a different party for 80 kids today at school and the aide is going to talk to the teacher about taking a few kids off in a small group if it gets to be overwhelming. This teacher has had a child with AS before but no experience with a 1-to-1 aide. It is hard for everyone involved to be bringing my daughter in mid-year. .. Recently in a town close to mine..there was a lawsuit. > Child was diagnosed with Asperger's and gifted academically. School could > not or would not provide. Parents took child out of school and filed a law > suit. State has just returned a verdict. School department has been ordered > to provide a suitable program for this child which involves learning and > academics at his level. School had originally only agreed to a 504 plan > because the child had no academic issues. The state has ordered that based > on his " disability " , Asperger's and the fact that he is gifted, they have to > provide an IEP to make sure he receives FAPE. This was a ground breaking > case around here..because school districts do not usually give children with > Asperger's IEP's... Very interesting. Are gifted kids given any special protection under the law? (My daughter is quite gifted at art. Our school district believes, at least in kindergarten, that art projects are a way to teach multi-step instructions and very little creativity is encouraged. The child might get to choose yellow or blue paint. That would be the extent of creative input.) The way things stand now, the teacher has refused to meet with me unless it's a full-blown IEP. (At the suggestion of the head of special ed, I wrote her a letter asking her to please excuse my daughter from formal testing and to try to do everything possible not to put pressure on her. This seems to have put me in her bad graces. I really have no idea how to communicate with her.) Maybe it's better that we have an IEP to formalize the " no testing " thing. I would still like to talk to her about short term issues, like getting enough advance notice of 80 kid events to put a social story together and get it all squared away on my daughter's mental agenda. My suspicion is that getting an IEP right now will take a month. In light of war, teacher layoffs, illness (the other am K class at my daughter's school has had 12 of 20 out sick all week), etc. the temptation is just to excuse all this away. But, my daughter is giving me every sign she can that she's stressed - clinging to her baby blanket at home, melting down at the slightest thing, reverting to old habits like running and hiding when her therapists come, etc.) I want to get some of this stuff resolved SOON. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 <<<<< has had many health problems and I lost my ability to fight. > Once I get the Developmental Pediatrician's report I will begin to fight > again. >>>>>> , it is ALRIGHT to stop once in a while to regroup, replenish, rethink, and then go out again to fight for our children. In fact, it is necessary ! Fania > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 Hi ! You are doing fantastic! I loved reading about your hook up experience. I am sooo very happy for you that it's going soooo well for you and that you are even catching speech here and there without lipreading~WOW!!!! Congratulations, and continued success to you! Sincerely, Velma N24C 11/25/02 (What A Day!) Hook Up Day BWP 1/2/03 (A Happy Day!) 3G 1/31/03 (An Even Happier Day!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 No problem Deb..... Juice Plus is what he put me on. They are a " whole food " product. I didn't think about it until someone on another board made me see that many of the items in these are on the goitrogenic lists. Now, everone has a different sensitivity to these things and so far I haven't had any bad effects, in fact, they haven't affected me at all. They are supposed to give energy to you but they don't. I got duped into taking them although I was looking for an alternative to the VERY expensive vitamins I was already taken which did MUCH more for me in the energy department. I fear in this world, if you really want quality, you're just gonna have to pay for it. I'm taking some vitamins from Vitamin World right now and they haven't done crap for me either...ugh! The vitamins that I do like are $68 a month! Sorry, just wanted to explain why I even tried them in the first place, didn't mean to go on so long. P > , > > I was reading one of your posts about the top docs list. You said > your dr. put you on some supplements that are potentially > goitrogenic. Would you mind sharing what supplements are > goitrogenic? Thanks. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 I don't mind at all. First of all I hope all is going well with your surgery. The doctor in , MS. is Ray at University of Mississippi Medical Center, 601-984-2944. Buzz's doctor is in Shreveport, LA at Shriner's Childrens Hospital. His name is Dr. Pressly, 318-226-3312. Shriner's was wonderful. They met me in Mobile and drove us to Shreveport on Thur., paid for a hotel to stay in and then drove us to the hospital Fri. morning. I can't say enough about how great they were to us. It is only a couple hours past , so its not like it was that much further a drive. Amy Re: to Amy Hi there Amy!I haven't even started looking for a rheumy due to I've been recovering from back surgery (shame on me). is due for her labs which I'm sure the ped. would order but both the ped. and myself would feel much more comfortable if we had a rheumatologist!If you wouldn't mind, would you send me the address and/or phone number of these two doctor's that you mentioned?I'm glad that Buzz has found a doctor and I hope all goes well for the both of you. Thanks for keeping me in mind!To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Hi, . I was out of town and saw your message about insurance. We use code 784.69 successfully. Also, please note that ASHA itself has stated in its public newsletter the Keystater, that apraxia is a medical condition for insurance purposes. I have a letter i used to win my appeal on this issue and if you email me privately I'll attach it for you. Sandy, Illinois (alpy2@...) <A HREF= " www.ourchildrenleftbehind.com " >www.ourchildrenleftbehind.com</A> (IDEA reauthorization) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Hi ! Did you receive the info I faxed last week and/ or my most recent e-mail? Apparently I'm having trouble getting things out again. Please let me know. Thanks! Joanne Brindley ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Thank you so much, the encouragement, I really appreciate it. To Dear , I'm sorry I couldn't find the time to post earlier when you first discussed your disillusion with Dr. Goldberg. I was so moved by your post, having followed yours and ph's story for the five? months I've been a member of this board. I'm glad you're working through that appointment and are beginning to put everything in a perspective that works for you. I just wanted to offer some encouragement to you by saying that your efforts for ph have been a real inspiration to me as I've begun my own journey to recover my son. And you've been so giving and helpful on this board (how many times will you have to give the ojibwa tea Web site??? lol!!!), you've just really set an amazing example for the rest of us here. ph is truly blessed that you are his warrior. I hope everything will continue to smooth out. Best of luck with this new wrinkle -- but you'll take it in stride, just as you have every new wrinkle on this journey. All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Dear , Thanks so much for your post. I have dealt with this alone for so long, I feel that I cannot go another step, but as you all always say here, we know our bodies better than anyone so.....I really cant worry about how the dr. felt.. Its just sad they see the condition one is in sometimes and just have this "wait and see attitude".. Maybe I will go buy some Boost or something to try and help me with my weight loss. I hope you are feeling as well as you can . Take care, Lyn Arkansas MKANTZLE@... wrote: Lyn,Hang in there. We all have bad days. Do not worry if she was upset. If you are continuing to have problems maintaining weight and she has done nothing about it, it's time you take things in your own hands. (Easier said than done, some times.)You have made the correct decision for you. Don't let anyone make you doubt yourself.I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 [ ] fatigue fighter? > > > > > > Does anyone know of a good fatigue fighter? I run a service and > > repair business and work 10hrs a day mostly I get(real) tired > after > > noon . I need to pick up some energy and am totally reactive to > any > > caffeine or gotu kola or the like and cannot sleep at nite if I > take > > anything like that. I am taking Vitamin C only and thymus / I > have no > > ins and have not had a biopsy so I only know about the HVC and B > > because I went to give blood last summer. Help please I am 49 > and > > wore out seems like past three years > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 I think that part of the curriculum is just awful. Roxanna > The part of the curriculum that seemed wrong for him was the warnings about > not getting anyone pregnant, and compositions the students were asked to > write about how ashamed they would feel if they got pregnant (in the case of > girls) or got anyone else pregnant (in the case of boys). Owen was so > immature socially that this possibility would never arise -- I can't imagine > him being out on a date with a girl, even now, at age 17! So since writing > is very hard for him, especially about hypothetical situations, I couldn't > see how this kind of class would be beneficial to him. > When he was older I allowed him to take family life education, but it was > still mostly irrelevant for him. > Can parents opt out of having their kids take family life education in > Dallas public schools? If so, that would be an easy way to resolve this > question. > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 nne: I'm sort of a poor example to answer your questions, but I'll try...The first implant worked beautifuly for all but the last year or so of the 14...it began to give me troubles with maping and lots of fuzzyness toward the end. Testing could not find a reason, so replacement was chosen as the answer. Long story short. Replacement (done in other ear) did not work either... reason. Otosclerotic growth in the cochlea. We suspect the same in the right ear which probably caused the " failure " of the first implant. My first was a neucleus 22 and I went from the old WSP (remember those Ruth?) to the Spectra and through a couple of upgrades of that and all worked fine. I am waiting to hear from Dr. Telian at Univ. of MI whether we can re-implant the right ear. At this point it does not look favorable as we expect that the otosclerosis in the right ear has also spread to the cochlea. I am told that this is quite rare in otosclerotic deafness. However, I would caution every potential implant patient to be sure that your surgeon checks for possible otosclerotic growth and cochlear involvement. It will save a lot of heartache if you know BEFORE implantation, that it won't give the desired result. Hope this answers your question somewhat God bless http://christiankidshows.org http://professorhoo-dini.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 In a message dated 11/17/03 3:30:26 PM, amattson@... writes: << Is it possible, do you know, to supplement the zinc, if it's needed and not chelate? Or is the mercury like a virus and causes more damage the longer it's there? Thank you again. >> Have you tried hanging out at the autism treatment group? Lots of good people over there with plenty of experience... Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 I appreciate that. Blood tests show no problems with metals, and his copper is average, neither high nor low. However, insufficient blood was collected at the time and so the zinc test was not done. Chelating is a new option for us. ph was not " healthy " enough to withstand it before, and ignorant me, felt the blood workup was sufficient to put that beastly suspicion to rest. I'd like a hair analysis done. But again, I know it's a combo of results that point to elevated mercury. Too bad there isn't one test that says definitively whether this is a problem for your child or not. I've heard good news from a Mom of a patient of hers, that she treats the whole child, not just staying in the parameters of one treatment option. So, there are a lot of questions I'm hoping she'll answer. Maybe not even her treatment, but just things she's seen that are beneficial to other patients she's treated. I appreciate the brainstorming. Is it possible, do you know, to supplement the zinc, if it's needed and not chelate? Or is the mercury like a virus and causes more damage the longer it's there? Thank you again. To , I've been following all these posts and noted your concern about MT function. Have you considered Pfeiffer Treatment Center for chelating for copper and promoting MT function, rather than chelating for mercury? Do you know if ph has high copper/low zinc? You said that you no longer believe that the viral issue is a " cause, " but isn't Megson the viral expert? Perhaps Pfeiffer might be something to consider? Just trying to brainstorm with you a bit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 > Blood tests show no problems with metals, and his copper is average, neither high nor low. FYI, Pfeiffer has " their own " range for high copper. According to the lab, my son's copper was in the high normal range, but according to Pfeiffer, it was high. > I've heard good news from a Mom of a patient of hers, that she treats the whole child, not just staying in the parameters of one treatment option. So, there are a lot of questions I'm hoping she'll answer. Maybe not even her treatment, but just things she's seen that are beneficial to other patients she's treated. Oh, I should have clarified, I think it's great you're going to see Dr. Megson. In fact, Pfeiffer has recommended the " Dr. Megson Protocol " for my son once he's adjusting on their protocol. Her protocol involves loading with vitamin A then administering bethanocol. I have no idea what it's for yet, as we're just beginning with the Pfeiffer recommendations, and it will be months before we can consider hers as an option. > Is it possible, do you know, to supplement the zinc, if it's needed and not chelate? It is my understanding that many kids with what Pfeiffer would identify as copper/zinc imbalance improve greatly on zinc alone. I'm excited to begin the zinc, but we have to treat for yeast first. If you're interested in our entire Pfeiffer protocol, which would of course be geared specifically to my son based on his own particular imbalances, feel free to e-mail me personally. To > > > , I've been following all these posts and noted your concern > about MT function. Have you considered Pfeiffer Treatment Center for > chelating for copper and promoting MT function, rather than chelating > for mercury? Do you know if ph has high copper/low zinc? You > said that you no longer believe that the viral issue is a " cause, " > but isn't Megson the viral expert? Perhaps Pfeiffer might be > something to consider? > > Just trying to brainstorm with you a bit. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 > I'm > excited to begin the zinc, but we have to treat for yeast first. Is there something wrong in supplementing zinc if there is yeast? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 > Is there something wrong in supplementing zinc if there is yeast? > Oh sorry, not that I know of. We've just never treated for yeast before, so we have to take it more slowly to monitor his reactions to the probiotic and the Uva Ursi. When we know neither of those is a problem, then we'll begin the Pfeiffer protocol. Hope that clarifies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 > It is my understanding that many kids with what Pfeiffer would > identify as copper/zinc imbalance improve greatly on zinc alone. I'm > excited to begin the zinc, but we have to treat for yeast first. > In my experience, zinc helps keep yeast away. So I would add zinc now, maybe 20 mg, and not wait until yeast is under control. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 > In my experience, zinc helps keep yeast away. So I would add zinc now, maybe 20 mg, and not wait until yeast is under control. > > Dana Thanks Dana, I did not know that. I just checked our BrainChild vitamins and he is indeed getting 25 mgs/day of zinc. Can you tell me, is zinc excitatory or calming? Pfeiffer recommends we take the zinc at dinner, so I was just wondering what I should be prepared for. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 > Thanks Dana, I did not know that. I just checked our BrainChild > vitamins and he is indeed getting 25 mgs/day of zinc. Can you tell > me, is zinc excitatory or calming? Pfeiffer recommends we take the > zinc at dinner, so I was just wondering what I should be prepared for. For kids who are high copper, zinc can cause wild hyper if it is reducing the copper too fast. Otherwise it is usually calming. I would first give it early in the day, in case your child was a hyper one. If not, then switch it to evening. Certain formulations of zinc can cause vomiting unless given with food. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Dixie thank you for your kind words it's people like you that make this forum so special again thank you susan Quote Link to comment Share on other sites More sharing options...
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