Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 I don't think this is correct. The cause of apraxia is not universal. Some kids have had strokes, some it is metabolic. My kids stuff, which to be fair, he does not have an official dx except for " Dev Delay, " some related to a heart thing but the cause of the heart thing is unknown. Bottom line is many here have done MRIs with no big findings but some have findings. If I had a finding I would not assume it is not part of the apraxia, just that it remains unknown if it is related because apraxia itself has not been studied long enough for all of these pieces to be fit together or ruled out. > > If there's something on the MRI, it would not be due to the > Apraxia/Dyspraxia, because it doesn't show on the CAT or MRI tests (one of the reasons they > call it a " hidden disability " > > so it must be due to something else-- and I would seek out that reason and > what it is til you feel satisified by the Dr's answer > > > bek > > > In a message dated 9/15/2008 9:27:25 A.M. Eastern Daylight Time, > debjward@... writes: > > hi I was just wondering HOW do I find out if she has apraxia thats > what are dev ped says but she doesnt seem to know about any causes or > much else. Alyssa had a MRI in jan that showed white matter (small) > inthe right basal gangila does anyone else have abnormal mri? see 2nd > neuro in 2wks 1st blew us off basic to genetics. she also has strabimus > atrial sdefect,mitrovalve prolapse and soft signs lots. > > > > > > > > **************Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 <<so if we were to take vitamins or some healthy immune system natural foods supplements. Would it rev up our immune systems . . . ???>> In a word, no. No " natural " supplements are going to " rev up " our immune systems. It is natural to look for the simple answers, but autoimmunity is not a simple condition and sorry, but there are no simple answers. Need convincing? See: http://www.nature.com/nature/journal/v435/n7042/full/nature03728.html [or] http://tinyurl.com/4a7wpb http://www.autoimmunityresearch.org/ http://rheumatology.oxfordjournals.org/cgi/content/full/45/10/1187 [or] http://tinyurl.com/43m25l If the autoimmune system could be " revved up " using " natural " supplements scientists would not be spending millions of dollars seeking solutions involving stem cells and the like. The various small companies that push miracle cures are today's version of snake oil salesmen, and just as snake oil sold out of the back of a wagon didn't cure anyone's gout vitamin therapies are no cure for PsA. If anyone comes across a miracle " cure " that appears too good to be true I encourage you to visit the site below as a means of assessing the possibility that you are being scammed. http://www.scamwatch.gov.au/content/index.phtml/tag/MiracleCures [or] http://tinyurl.com/3rbaqc RA North Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 The problem is not that our immune systems need " revving up " or boosting but that they need calming down or suppressing. Our problem is not a weak immune system! Our problem is an over-active immune system. It must be suppressed in order to control the manifestations of P and PA. I am not aware of any " natural " treatment that even claims to suppress the immune system. It is known that P and PA are programmed into our genes. There is no food or supplement that can change your genetic makeup. In fact, the drugs do not change your genes either. That's why PA is considered " incurable. " But the drugs DO suppress the immune system, stopping the damage being done to your joints and giving you blessed relief of the pain by getting at the root of the problem - the over- active immune system. best regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Take your pointer finger sideways under his chin and gently push up to get the /k/ sound. > > Does anyone know a good therapy to teach the letter k sound? > The SLP at school said she is working on it but didn't give us any > suggestions for what we can do at home to help. > > Any tips? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 I don't know about how SLP's teach it, but Shyann was laying on her back, without a pillow and her tongue was forced by gravity to the back of the throat just like when people snore. Then we fake snored and that progressed to hard G and K. Try it your self and it might help you. Joy [ ] Question Does anyone know a good therapy to teach the letter k sound? The SLP at school said she is working on it but didn't give us any suggestions for what we can do at home to help. Any tips? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Try the fake cough approach. Fake coughing produces hard sounds. Joy Hansen wrote: > I don't know about how SLP's teach it, but Shyann was laying on her back, without a pillow and her tongue was forced by gravity to the back of the throat just like when people snore. Then we fake snored and that progressed to hard G and K. Try it your self and it might help you. > Joy > [ ] Question > > > Does anyone know a good therapy to teach the letter k sound? > The SLP at school said she is working on it but didn't give us any > suggestions for what we can do at home to help. > > Any tips? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 We use a physical " prompt " with the /k/ sound We take our hand and lay it at the neck when we make that CK sound to remind him that it's where we use our muscles (basically) to make that sound come out correctly it helps with our son who is 4 bek In a message dated 10/3/2008 7:02:19 A.M. Eastern Daylight Time, dadsfourboys5J@... writes: Does anyone know a good therapy to teach the letter k sound? The SLP at school said she is working on it but didn't give us any suggestions for what we can do at home to help. Any tips? **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Are you sure it's not the back of the neck? (at the adam's apple?) The chin wouldn't quite get that sound from what I know so far bek In a message dated 10/3/2008 9:02:11 A.M. Eastern Daylight Time, kaycespader@... writes: Take your pointer finger sideways under his chin and gently push up to get the /k/ sound. **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 In the Prompt method the /d/ sound is under the chin, just past the jaw bone, the /k/ and /g/ is prompted at the neck, above the adams apple and it is done quite firmly. I'm not sure what the age of the child was who is having the problem learning this sound, but my son tried to get it at age 4. My daughter is age 2 and just makes no sound when Prompted. Her SLP said that those sounds aren't yet there at age 2 and it's worth a try, but she didn't expect success. I think a /d/ substitution is the normal one. Miche On Fri, Oct 3, 2008 at 12:49 PM, <tbniesh@...> wrote: > Are you sure it's not the back of the neck? (at the adam's apple?) > The chin wouldn't quite get that sound from what I know so far > > > bek > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 Sherry, the electrical feeling sounds like what I experience with a pinch nerve. It usually goes down a leg or an arm. As for hot and cold, I've been getting the cold feet and hands, especially when I'm tired. I haven't done anything about it and I did mention it to my hematologist and he didn't really react. It was minor compare to our discussion. Everything has an answer so if it is frustrating you, see another doctor. Some answers take time. Gilchrist <gilchrist414@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 Sherry, the National Psoriasis Foundation says that severe psoriasis can compromise the body's ability to regulate body temperature. From my own experience and that of many others who've reported the same thing here in this forum, I suspect that even not-so-severe psoriasis can also affect this function. The skin is intimately involved in our body's temp-control mechanism. When our skin is messed up, it's bound to wreak havoc on all functions related to skin, including this one. I think it's the disease, not the drugs, causing this. regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 Well, I kinda thought that it could be the psoriasis but I don't have it so bad since starting the Enbrel but if I am off it for 2 or 3 weeks the spots come back, especially my scalp. Actually, the scalp never clears. I appreciate your response. I was able to get out and mow the yard today, so far, no really bad pain just the usual aches. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Sherry. I have no idea what it could be, but I would get in to see my doctor right away. Could be serious. Good Luck and God Bless Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 My rheumy specifically asked me if I had any of the electrical shocks coming from the core of my body. It must be related to PA. He said to let him know if and when I do. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 <jnachos2000@...> wrote: <<My rheumy specifically asked me if I had any of the electrical shocks coming from the core of my body. It must be related to PA. He said to let him know if and when I do. -.>> , have you ever experienced anything like that? And, do you have the temperature control problem? I seldom sleep very long without one or the other waking me. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2008 Report Share Posted October 22, 2008 Fortunately I've never had the electrical shooting pains. My rheumy said it would really hurt. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 I have had a problem with waking up exactly one hour after I fall asleep--nightly--for several years. I suddenly am wide awake and usually craving something to eat (leading to a 30-40 lb. weight gain in 3 years) Seems to have developed in past 3-4 years (symptomatic X 10 years, diagnosed w/PsA 2+ years ago). I have lately realized that my pillow is soaked with sweat when I wake up at these times, but at no other time at night. I also take testosterone (Androgel) for a pituitary insufficiency, but my thyroid studies are always normal (including t3-t4). Does anyone else have this distinct symptom? Is it a PsA symptom? It is literally identical in nature, every night-without fail-for several years. Onset of profuse head sweating has been in the past year. Also, I have much more profuse sweating with only moderate activity and a harder time cooling down, even when it's cool (outside or inside in A/C). Since this temperature issue came up, I thought I'd ask the list members... Any comments would be appreciated. F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Yep, I have the sweating problem. I am either hot or cold, doesn't matter the temperature. I keep my house rather cold because it seems easier to get warm than cool off. Don't know what he problem is. I get clammy from head to toe but usually wake up and get myself cooled off. I usually turn the ceiling fan on. It is SO annoying. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hey , I have noticed that I have similar, especially when I take my meds late at night. I am currently on Sulfazine and nabumentone. I wake up late at night, sweaty pillow., I don't get hungry however. I also gained 20+ lbs when on prednisone, but lost some a few months after stopping. mrtom <mrtom303@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I have the problem of night sweats and, until Humira began to get my PA under good control, I used to wake up every 45-60 minutes all through the night. Gradually, as the drug began to work better and better, I have been able to sleep longer periods at a stretch. Usually now I just wake up every 3 hours. Last night, for the first time in years, I slept 6 hours straight! I don't think it's a coincidence that we had temps down into the 30s last night for the first time this season. I think being cooler helped me sleep better. regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Hi, My daughter also had a head that grew " too fast " so we had to have her checked for hydrocephalus too (ruled out). I think her fast growth did make her flatness worse since it came before she was sitting up etc. She had good results from a starband. In terms of opinions if your daughter needs a band, I would suggest posting some pics here. Of course it would also be good if your could get a 2nd opinion in your area, but I don't know any resources there. If you have measurements that would also help. Our specialist (cranio facial plastic surgeon) recommends banding at 10mm of asymmetry or cephalic index of 90% or greater. -christine sydney, almost 3 yrs, starband grad > > I am looking for some good advise for my 7 month old son. I have > noticed since he was about 3 months old that he was developing a flat > spot due to him liking to sleep on his right side. I try to reposition > him at night but sometimes he goes back to his right side. It has > improved but still has a flat spot. Also, his head grew too fast, > according the charts, at the last appointment so we had a ct scan to > rule out fluid on the brain. It was ruled out but a little bit of > fluid was found outside the brain but we were told that it is a normal > variance and nothing was to be done. Yesterday we went to have him > evaluated to see if he needed a helmet for his flat spot. It felt like > a they already had their minds made up that they were going to fit him > for a helment. It did not feel like an evaluation. Me and my husband > has noticed the flat spot and my mom but no else has noticed it. I > just don't know if he really needs the helmet or if the place we went > to just gives everyone a helmet that comes to their place (they sell > the helmets). The whole appointment was just weird. Does anyone know > of a place to have your child evaluated near Oklahoma City or have any > information on the helmets? Any advise would be appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 The only recommendation I can make is to see a child psychiatrist who is very well versed in the Autism Spectrum and Asperger's. Sometimes a neurosychological evaluation can be helpful also. There really isn't a way to get a md to make a diagnosis of one thing or the other. Remember that an IEP and any supports and services should be based on the child's presenting level of need and how it is impacting them in the school environment. I often wonder how many children and adults out there are misdiagnosed....many. Pam a message dated 3/2/2009 6:29:41 P.M. Eastern Standard Time, LLashley@... writes: This is where I am fighting right now! I was grateful to get the IEP period, but I am desperately trying to get a better diagnosis from a physician. We saw a worthless developmental pediatrician. I FINALLY have an appt with a child psychiatrist (From Phoenix Children’s Hospital) in April. Any suggestions from anyone on how to get an AS dx from the md when you believe with your heart and soul that’s what’s going on? (as opposed to simply isolated ADHD/OCD & Anxiety) From: [mailto: ] On Behalf Of ppanda65aolSent: Monday, March 02, 2009 3:05 PM Subject: Re: ( ) Opinion I agree with what you are saying. I didn't realize that your son did have the ED label already. If that was the category that he qualified under that's a different story. I know of many families (myself being one) who were told that the child would be deemed eligible under Emotional Disturbance label when in fact their diagnosis was Aspergers. Pam In a message dated 3/2/2009 4:20:53 P.M. Eastern Standard Time, baneline1msn writes: With all that being said each persons child is different. Each school is different. Each district, state and country is different so it may be that I am just hugely blessed at my circumstances (which I am). I firmly believe that every parent should fight for their kids to have the best educational experience possible. Do what ever it takes. I guess I just don't like getting hung up on lables. A Good Credit Score is 700 or Above. See yours in just 2 easy steps! A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 > > Any suggestions from anyone on how to get an AS dx from the md when you > believe with your heart and soul that's what's going on? (as opposed to > simply isolated ADHD/OCD & Anxiety) You need to go to a professional that has a specialty in autism spectrum. Ask them. Make sure they don't just have " an interest " ! You will most likely find such a person connected with a hospital neurobehavioral clinic or autism clinic. You will get a very detailed evaluation and set of recommendations to give your school from such a person. Then you get the wonderful fun of trying to get the school to understand or have any interest in following the recommendations. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 I asked the same question when my son needed a diagnosis. I was referred to a pediatric neurologist. I have found that while psychs know some about ADD/ADHD, they seem to know very little about Asperger's. Just my experience... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 From what I experienced..yes but only at bedtime. I found that when we first began chelating I and the kids had a harder time falling asleep if we were on dmsa. So we used melatonin at bed time on rounds and for a day or two after. As we got up in numbers of rounds...we didn't need it anymore. > > Jan, Dana or TJ is there an added benefit to adding Melatonin to DMSA during the AC Protocol rounds in the beginning?? Thanks so much~ > > stace > Quote Link to comment Share on other sites More sharing options...
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