Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 Donna, I cant help with any of your questions but I was wondering if you have found the counseling helpful? It is a special counselor? Would you mind just briefly sharing topics you migh discuss – oh also is this a group or individual? Thanks and good luck with all of this! JP Hello Everyone Hi, I am new here. My doctor is testing me for the possibility of having spinal stimulation surgery. The insurance is requesting certain tests in order to approve me. I just wonder about the surgery, the pre- test, permanant device, and anything and everything about it. I had a brain decompression for ACM and have had problems every since. I have a bulging disc at the C-5 C-6 with stabbing/shocking pain in the right side of my shoulder/neck area, also, in the thorasic area I have major muscle spasms all the time. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.25/669 - Release Date: 2/4/2007 9:58 PM -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.17.25/669 - Release Date: 2/4/2007 9:58 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 The counseling is just a regular counselor. It is one on one, not a group. We just talk about how things have been going, if I am having trouble dealing with something and then he gives me ideas on how to handle the situations and also different ways of looking at things. > > Donna, > > I cant help with any of your questions but I was wondering if you have found > the counseling helpful? It is a special counselor? Would you mind just > briefly sharing topics you migh discuss – oh also is this a group or > individual? > > Thanks and good luck with all of this! > > JP > > > > Hello Everyone > > > > Hi, I am new here. My doctor is testing me for the possibility of > having spinal stimulation surgery. The insurance is requesting certain > tests in order to approve me. I just wonder about the surgery, the pre- > test, permanant device, and anything and everything about it. I had a > brain decompression for ACM and have had problems every since. I have > a bulging disc at the C-5 C-6 with stabbing/shocking pain in the right > side of my shoulder/neck area, also, in the thorasic area I have major > muscle spasms all the time. > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.432 / Virus Database: 268.17.25/669 - Release Date: 2/4/2007 > 9:58 PM > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.432 / Virus Database: 268.17.25/669 - Release Date: 2/4/2007 > 9:58 PM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Hi Patty! Welcome to the group, it's very nice to meet you! My youngest son, Trey, who is nine years old has AS along with bi-polar and ADHD. He was just diagnosed a couple years ago so I'm afraid I'm not much help, but I do know that therapy helps him a lot and makes a big difference especially with his bad sleeping patterns. The other things such as his sensory issues and social differences, we just sort of work around. For example, he doesn't wear underwear or jeans, doesn't have a sheet on his bed ...we have to constantly remind him in social situations to lower his voice, not to interrupt, etc., The best advice I can give is just have lots of patience and understanding, not only with him but with the people who will invariably give you *that* look...you know, the look that says " That kid just needs discipline " or That mother just lets that kid run wild " Meanwhile, know that you aren't alone and you have lots of support here with us and we're always willing to offer advice, listen and even just remind you that you're not alone ~*BIG HUGS*~ -Jenn Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs Anxiety) and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's) -- ( ) Hello Everyone Hi, I'm new to this group. After much denial, I have embraced the fact that my 4.5 yo most likely has Aspergers. It's been mentioned by a couple of professionals. We have started speech therapy and have started the ball rolling for a dx. Anyway, my questions are....advice or comments about the initial stages? Support or Play groups in the Hinckley area (Leics/Coventry)? Thanks a lot. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hi Patty, You're virtually just down the road from me ..I'm in Leicester too~Yay! I have 2 boys with aspereger's 13 and 16. It is the Devil's own job to get a diagnosis in our neck of the woods; unless your child presents very classically and severely. AS doesn't seem to have the recognition here like it does in the US. That's probably because most British males seem 'Aspified' at the best of times lol! Anyway I can highly reccomend the 'Early Years Diagnostic Centre' in Nottingham. Prof. Newson's team. However, you need a GP referral and they aren't always very keen to do this re: cost! I think you may have access to the LAST team (Learning and Autism Support)for schooling and if you get you're laughing! He did wonders for my Philip. He's great!! If you ever want a chat do email me and we can phone each other if you like.(jackthepippa@...) All the best. Jackie In , " bty906418 " <blissfullyhappy@...> wrote: > > Hi, I'm new to this group. After much denial, I have embraced the fact > that my 4.5 yo most likely has Aspergers. It's been mentioned by a > couple of professionals. We have started speech therapy and have > started the ball rolling for a dx. Anyway, my questions are....advice > or comments about the initial stages? Support or Play groups in the > Hinckley area (Leics/Coventry)? > > Thanks a lot. > > Patty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 >>>That's probably because most British males seem 'Aspified' at the best of times lol!<<< ROFLMBO! Too cute! -Jenn, AEP Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs Anxiety) and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's) -- ( ) Re: Hello Everyone Hi Patty, You're virtually just down the road from me ..I'm in Leicester too~Yay! I have 2 boys with aspereger's 13 and 16. It is the Devil's own job to get a diagnosis in our neck of the woods; unless your child presents very classically and severely. AS doesn't seem to have the recognition here like it does in the US. That's probably because most British males seem 'Aspified' at the best of times lol! Anyway I can highly reccomend the 'Early Years Diagnostic Centre' in Nottingham. Prof. Newson's team. However, you need a GP referral and they aren't always very keen to do this re: cost! I think you may have access to the LAST team (Learning and Autism Support)for schooling and if you get you're laughing! He did wonders for my Philip. He's great!! If you ever want a chat do email me and we can phone each other if you like.(jackthepippa@...) All the best. Jackie In , " bty906418 " <blissfullyhappy@...> wrote: > > Hi, I'm new to this group. After much denial, I have embraced the fact > that my 4.5 yo most likely has Aspergers. It's been mentioned by a > couple of professionals. We have started speech therapy and have > started the ball rolling for a dx. Anyway, my questions are....advice > or comments about the initial stages? Support or Play groups in the > Hinckley area (Leics/Coventry)? > > Thanks a lot. > > Patty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Welcome to the Group Kodac... Love and peace always, Shaun and Barb... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Thank you Kathy for the reply, No, I haven't seen a doctor. I don't have health insurance. I was hoping someone on the group would suggest a magic pill :-) I've had aches and pains before, but the last few months have been different. Of course, I am 50 years old, much older than the guys I play basketball with; maybe it is just an age thing. But lately, the issue has been getting around comfortably and sleeping through the night, rather than being able to play basketball. kodac > > > I have just joined the group and am hoping to learn from you guys > experience. > > Up until a few months ago, I could play full court basketball with > high school age kids. I am 50. But in the last few months my knees > and shoulder are hurting quite a bit. I take alieve and have just > started a glucossmine/chondrotin product, osteo bi-flex. > > Any suggestions? > > Thanks, > > kodac > > > [Editor's Note: Welcome, Kodac. You don't say if you have gotten a formal diagnosis from a skilled rheumatologist. Psoriatic Arthritis (PA) is in the rheumatoid arthritis family while glucosamine chondroitin and Osteo Bi-Flex are over-the-counter products used for the treatment of OSTEO, not RHEUMATOID, arthritis. If you have osteo arthritis, these OTC treatments may help, but they have not been shown to be of any benefit to people with PA or other forms of autoimmune disease in the rheumatoid family. As a result, the first and most important thing to do for yourself is to get a proper diagnosis for it is from this that all forms of treatment will spring. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Kodac, How much Aleve are you taking? My rheumy wrote down how much of the OTC pills to take, but I prefer the 500 mg prescription strength ones. I threw away the doses for the Aleve, unfortunately. Maybe someone else knows? I take 500 mg in the a.m. and another 500 mg in the p.m. I mention this because I never would have known to take that much if the rheumy hadn't told me to. If the osteo things you're taking don't help much after a reasonable amount of time, that will be a good clue that you are dealing with PA rather than osteo. Realize that you could have both, though. Also, try alternating applications of ice and heat. During bad spells, I have to sit up for 1/2 to 1 hour once or twice during the night alternating heat and cold every 15 minutes. That really has given me some relief so that I'm able to go back to bed and sleep for a few hours at least. It's especially helpful if there is definite swelling or heat. Where are you located? Is there a public health clinic you might visit on the cheap? If you can get a prescription for an anti- inflammatory and/or painkiller, be sure it's one on Walmart's list of $4 medications if you're in the U.S. That makes it very affordable. Are you working? If you are unable to work due to PA, you might qualify for Social Security Disability which would possibly allow you to get Medicare early, plus give you some monthly cash you can apply toward doctors and treatment. I'm all out of ideas for now. I hope at least some of this is helpful to you! best regards, sherry z best regards, sherry z > > Thank you Kathy for the reply, > > No, I haven't seen a doctor. I don't have health insurance. I was > hoping someone on the group would suggest a magic pill :-) > > I've had aches and pains before, but the last few months have been > different. Of course, I am 50 years old, much older than the guys I > play basketball with; maybe it is just an age thing. But lately, the > issue has been getting around comfortably and sleeping through the > night, rather than being able to play basketball. > > kodac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Thanks sherry, My bottle of Naproxen Sodium is 220 mg. I usually take two. Lately I've been taking Ibuprofen. Both labels caution against liver damage. I am a large man, 270 lbs, maybe I could take more. I guess getting an anti-inflammatory prescription is what I need to do. In response to your mentioning PA I did some searching. Is that associated with an accompaning skin disease? kodac > > > > Thank you Kathy for the reply, > > > > No, I haven't seen a doctor. I don't have health insurance. I was > > hoping someone on the group would suggest a magic pill :-) > > > > I've had aches and pains before, but the last few months have been > > different. Of course, I am 50 years old, much older than the guys I > > play basketball with; maybe it is just an age thing. But lately, > the > > issue has been getting around comfortably and sleeping through the > > night, rather than being able to play basketball. > > > > kodac > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Kodac - if you have an inflammatory arthritis (psoriatic or rheumatoid), you would probably take an anti-inflammatory. I take prescription naproxen sodium. You are getting the same thing with the Aleve. You should be under a doctor's care so that your liver panels are monitored with regular blood tests. Most of us on this group have PA - psoriatic arthritis. Most of us, but not all, have a skin condition called psoriasis. There are various forms of psoriasis. I have palmoplantar pustulosis which causes my palms and the soles of my feet to blister and peel. I also have a little plaque psoriasis on my elbows - rough, scaly reddened skin. Usually the skin problem preceeds the joint pain by several years. But I had the joint pain, without skin problems, for many years before I developed the skin disease. Do you not have psoriasis? regards, sherry z [Editor's Note: Sherry is, as always, spot on, Kodac. You need to be under a doctor's care in order to have your liver monitored via routine blood tests since many of our meds, including over-the-counter ones, can damage our livers. In addition to the psoriasis symptoms mentioned by Sherry, one of the most common forms is on our finger and toe nails. When psoriasis strikes here, our nails develop ridges and waves and may become extremely brittle. Unfortunately, PA is a progressive disease which will not be stopped merely by controlling inflammation. It is therefore critical that we slow the progression of the disease by taking DMARDs or biologic drugs. Some of these drugs can be quite expensive, however, there are programs available to assist people who truly cannot afford these medications. These programs have to be searched out, but they are out there. One of our drugs, a DMARD called Methotrexate, is relatively inexpensive. For a whole lot of reasons, you need to see a doctor. You can't be diagnosed except by a doctor and without a diagnosis, you can't properly treat the disease (be it osteo, rheumatoid, PA, gout, etc.). Over-the-counter treatments and self-diagnoses are temporary measures - but if they are prolonged they will only result in further damage because they delay your getting proper treatment. Kathy F.] > > Thanks sherry, > > My bottle of Naproxen Sodium is 220 mg. I usually take two. Lately > I've been taking Ibuprofen. Both labels caution against liver damage. > I am a large man, 270 lbs, maybe I could take more. > > I guess getting an anti-inflammatory prescription is what I need to > do. In response to your mentioning PA I did some searching. Is that > associated with an accompaning skin disease? > > kodac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 <Do you not have psoriasis?> No. I just have more pain than I should I think. I've shortened the walks with my dog and haven't played basketball since before Christmas. My knees have gotten better. I got knocked in the shoulder in one of my last games. In the past, such a blow would heal quickly but this time it hasn't. I used to lift weights and play basketball and walk my little dog. Now, my shoulder is so tender that I can't lift my arm. Thanks guys, I'll try to find some time to follow your advise about seeking medical treatment. No magic pills huh :-) kodac > > > > Thanks sherry, > > > > My bottle of Naproxen Sodium is 220 mg. I usually take two. Lately > > I've been taking Ibuprofen. Both labels caution against liver damage. > > I am a large man, 270 lbs, maybe I could take more. > > > > I guess getting an anti-inflammatory prescription is what I need to > > do. In response to your mentioning PA I did some searching. Is that > > associated with an accompaning skin disease? > > > > kodac > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 i still have my bottle and the doc had me taking 1 3x per day and they were 250mg. so that would be 750mg per day. no wonder my labs came back bad! my poor liver. on top of that i took tylenol pm and tylenol sinus...............be careful out there!!!! casey kodac81 <texasheartbeat@...> wrote: Thanks sherry, My bottle of Naproxen Sodium is 220 mg. I usually take two. Lately I've been taking Ibuprofen. Both labels caution against liver damage. I am a large man, 270 lbs, maybe I could take more. I guess getting an anti-inflammatory prescription is what I need to do. In response to your mentioning PA I did some searching. Is that associated with an accompaning skin disease? kodac > > > > Thank you Kathy for the reply, > > > > No, I haven't seen a doctor. I don't have health insurance. I was > > hoping someone on the group would suggest a magic pill :-) > > > > I've had aches and pains before, but the last few months have been > > different. Of course, I am 50 years old, much older than the guys I > > play basketball with; maybe it is just an age thing. But lately, > the > > issue has been getting around comfortably and sleeping through the > > night, rather than being able to play basketball. > > > > kodac > --------------------------------- Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 Kodac, My Rheumy has me taking 800mg Ibuprofen 3 times a day. I am 230 pounds and i've been on it awhile no problem. My dr. wanted me to take Methotrexate and I took one dose and came down with a cold so they told me to wait a couple of weeks before I start up again. Did you get a bad bloodwork result from the Ibuprofen? Hope that helps with my amount but so far the dr. hasn't said anything about the bloodwork results and like I said I have been taking the Ibuprofen about two years at that level. Chris casey <denise05775@...> wrote: i still have my bottle and the doc had me taking 1 3x per day and they were 250mg. so that would be 750mg per day. no wonder my labs came back bad! my poor liver. on top of that i took tylenol pm and tylenol sinus...............be careful out there!!!! casey kodac81 <texasheartbeat@...> wrote: Thanks sherry, My bottle of Naproxen Sodium is 220 mg. I usually take two. Lately I've been taking Ibuprofen. Both labels caution against liver damage. I am a large man, 270 lbs, maybe I could take more. I guess getting an anti-inflammatory prescription is what I need to do. In response to your mentioning PA I did some searching. Is that associated with an accompaning skin disease? kodac > > > > Thank you Kathy for the reply, > > > > No, I haven't seen a doctor. I don't have health insurance. I was > > hoping someone on the group would suggest a magic pill :-) > > > > I've had aches and pains before, but the last few months have been > > different. Of course, I am 50 years old, much older than the guys I > > play basketball with; maybe it is just an age thing. But lately, > the > > issue has been getting around comfortably and sleeping through the > > night, rather than being able to play basketball. > > > > kodac > --------------------------------- Food fight? Enjoy some healthy debate in the Answers Food & Drink Q & A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Thanks to all that have replied. I went and visited with a doctor yesterday. He didn't see a problem with my knees; recommended that a 50 year old guy might need to find another exercise rather than basketball :-) But my shoulder might have a torn rotator cuff. He gave me an injection in the shoulder and some sample Celebrex. I haven't noticed much improvement so far. He told me an interesting thing that most of you probably already know but I didn't: When taking Naproxen or Ibuprofen, the prescribed amount on the label will only accomplish pain relief and will NOT accomplish anti-inflammation. In order to receive the anti-inflammatory benefits of these products one must take much more than the recommended dosage. Last night I found the Pfizer site below and a program for those without health insurance and higher incomes. http://www.pfizerhelpfulanswers.com/files/C2C_English.pdf kodac > > > > > > Thank you Kathy for the reply, > > > > > > No, I haven't seen a doctor. I don't have health insurance. I was > > > hoping someone on the group would suggest a magic pill :-) > > > > > > I've had aches and pains before, but the last few months have been > > > different. Of course, I am 50 years old, much older than the guys I > > > play basketball with; maybe it is just an age thing. But lately, > > the > > > issue has been getting around comfortably and sleeping through the > > > night, rather than being able to play basketball. > > > > > > kodac > > > > --------------------------------- > Food fight? Enjoy some healthy debate > in the Answers Food & Drink Q & A. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 I Have used a soy based formula style thing for toddlers.. Kind of like this stuff.. But the soy version Sometimes your insurance will cover a suppliment like this so try to get it as a prescription If you can http://www.diapers.com/Shop/ProductDetail.aspx?ProductID=5577 -- ( ) Hello everyone HelloI have a question concerning diet - Specifically: weight gain.My son is AS and he is 9yrs. old - 68 lbs.He has been the same weight for about two years now. He has grown in height, 4 feet 7 inches.He does not eat meat very much and needs to avoid milk products.Medication: Concerta, Methotrexate and Enbrel for Psoriasis.He also takes supplements.Does anyone have any suggestions on food items / supplements to help with weight gain?Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 i am concerned when i hear " methotrexate " . my husband who is 53 took methotrexate for his severe psoriasis in his early 40's and it made him sick for the day or so following his treatment. in addition, they performed a liver biopsy every 4-6 months to make sure it wasn't damaging the liver. we were trying to have another child during this time (tried for 7 years) when the wall street journal posted an article about the use of methotrexate to successfully terminate pregnancies. i asked my gynecologist/fertility doctor if my husband's methotrexate injections could be having an impact on our ability to conceive and/or cause of subsequent miscarriages. he said there wasn't any study that he knew that stated such. my husband stopped the methotrexate injections and began using a sunlamp and clobex spray which is more work but is effective. 7 months later, i was pregnant and ultimately delivered our second daughter. i know your son is not trying to father a child, but i wanted to share my personal experience with this medication. it is strong stuff. kindest regards, melody > > Hello > I have a question concerning diet - Specifically: weight gain. > > My son is AS and he is 9yrs. old - 68 lbs. > > He has been the same weight for about two years now. He has grown in > height, 4 feet 7 inches. > > He does not eat meat very much and needs to avoid milk products. > > Medication: Concerta, Methotrexate and Enbrel for Psoriasis. > > He also takes supplements. > > Does anyone have any suggestions on food items / supplements to help > with weight gain? > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 I think most of us can't really be sure why our kids got it, but my son is a twin, and he was " Baby A " , which is generally the twin that gets more smushed inside. He came out with some mushed-ness on his ear and a preference for turning his head to the right. When I asked the pediatrician about it, she reassured me that he did not have torticollis and then didn't really do anything else about it. That preference towards turning that way was enough to get him a bit asymmetric. Once he had a flat spot, he would do anything to lay on it! We started repositioning at less than 2 months and began consultations for banding at 4 months. He is 6 months now and has been in the band for 2 weeks (already went from 11mm to 5mm!! Wahoo!) He was a little over 3 weeks early, so his head was probably a bit softer, but I think his main issue was the tightness in his neck, which I didn't know to stretch until we had our consultation at CT. His twin sis was in the NICU for a little while, and she started to develop scaphycephaly. She was so pointy she literally *couldn't* lay on the back of her head. But that did correct itself, thank goodness, once she was up in exersaucers and bumbos, and doing more tummy time. My son's head is also on the big side, so I wonder whether that was a factor. And it seems like a lot of the babies who get it are described as sweet and easygoing, which my Zach definitely is! I wonder whether the sweet mellow babies are more likely to get it because they just hang out and check out their universe rather the squirming around a lot and changing position. Who knows? -Pam On 2/8/08, Altvater <dkvater@...> wrote: My name is and my son was diagnosed with plagiocephaly when he was about 3 months old. He was born 7 and half weeks premature due to severe preclampsia and was in the hospital for 21 days before we could bring him home. I would like to other mom's or dad's stories as to why their child developed the issue. I think I know why he developed it, but I can not be sure. Thank you! , Mom of , 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hi , I think you'll find that a lot of the babies that have plagiocephaly (including my daughter) also had a neck condition called torticollis - also known as " wry neck " . So the question is, why the torticollis. In my daughter's case, it was because she was transverse in the womb and despite that, we delivered vaginally with forceps and vaccuum. Does your son have torticollis? FYI, my daughter was also 3 weeks early, so maybe her head was a little softer too. She's been in a DOC band from Cranial Technologies for five days now, and has really already adapted to it. And (finally) so have I. The first few days were tough, but the last couple haven't been so bad. Good Luck, > > My name is and my son was diagnosed with plagiocephaly when he was about 3 months old. He was born 7 and half weeks premature due to severe preclampsia and was in the hospital for 21 days before we could bring him home. I would like to other mom's or dad's stories as to why their child developed the issue. I think I know why he developed it, but I can not be sure. Thank you! > > , > > Mom of , 2 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hi, I've been a lurker for the last several weeks. I've learned so much through your guy's emails and the actual posting site. It has helped me a lot in trying to help out my son. My story... My son was born six weeks early. Apparently, he was coming out that day whether we wanted him to or not. I was dilated three inches when I had my last ultrasound at the hospital. Had no idea I was in labor. He was 6.2 pounds and 19.5 inches long. So, maybe my body was blessed to have him come out early. He was definitely the biggest guy by far in the nicu. He stayed there for exactly one week. Was on the dreaded monitor for about a month. While at the hospital, the nurses did a good job of trying to move him into different positions to help shape his head. I was oblivious at the time! I can tell you how freaked out I was to see him sleeping on his belly at the hospital with all the stuff they said about SIDS. But, I figured they knew what they were doing. They moved all the babies several times a day to keep their bodies from atrophy and soft spots. I realized my child's head was getting flat about two months ago. I've already talked to my doctor about it. She had given the usual remedy... no back time, exersaucer, etc. I started to lay his body on its side and do other things. She did say that she wouldn't be against sleeping on the stomach. But, couldn't recommend it as it was against the sids recommendations. After all this, he still has a big flat spot on his head and from above it is shaped like a half moon all most. Well, I didn't realize it until... lets say last week... that my son always had a flat head. Looking at pictures from the past, his head was always flat in the back. I guess I was preoccupied with the front! All I know is that when we had his first pictures taken... his head was definitely rounder than it is today. Somewhere between leaving the hospital and me realizing a few months ago, his head became flat. He likes to sleep on his back and doesn't move too much. I'm figuring that his head was just soft and he slept all the time. He has a giant noggin and its a lot of weight on his head. I will say that I did buy a noggin nest from boppy over a month ago. He was completely flat in the back. Now, he has a dent in the back where he should have one. Its almost shaped like the hole, but it does make it look better from the side. I've read that the hole shape may be a problem when banding. If I find that out from the banding place, I'll let you guys know. I've read that others say it has to do with the forceps and vacuum. I don't think that applies to my case. I believe he was just a softie (considering that your baby was born a week and a half earlier than mine) and yours might have been too. Just too early and not enough time to cook. He is coming up on his six months soon. So, I want to take care of this ASAP. I've been obsessing over it for a while. I go in this week to get another consultation about it. And, I have an appt. with the banding associate she recommended at the last appointment. Anyway, thanks for all of your guys info. Kim -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of AltvaterSent: Friday, February 08, 2008 10:01 PMPlagiocephaly Subject: Hello Everyone My name is and my son was diagnosed with plagiocephaly when he was about 3 months old. He was born 7 and half weeks premature due to severe preclampsia and was in the hospital for 21 days before we could bring him home. I would like to other mom's or dad's stories as to why their child developed the issue. I think I know why he developed it, but I can not be sure. Thank you! , Mom of , 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I think that a lot of sleeping when they are really young kinda helps it along. My monkey had tort. and slept soo much the first 4-5 weeks that I had to wake him up to eat! He would take 2 3 hour naps and then go for 4-6 hours at night, from day one, and then he started sleeping 11 hours a night at 6 weeks! All on that wonderful flat spot :0( At about 12 weeks we started repo, and that all changed! But his head did not get better. He is now in his band and his head is looking soo much better! They say another 3 weeks and he is done!Kami Kiley 3 Keenan 5.5 months 5 weeks doc band Pam Schraedley Desmond <pam@...> wrote: I think most of us can't really be sure why our kids got it, but my son is a twin, and he was "Baby A", which is generally the twin that gets more smushed inside. He came out with some mushed-ness on his ear and a preference for turning his head to the right. When I asked the pediatrician about it, she reassured me that he did not have torticollis and then didn't really do anything else about it. That preference towards turning that way was enough to get him a bit asymmetric. Once he had a flat spot, he would do anything to lay on it! We started repositioning at less than 2 months and began consultations for banding at 4 months. He is 6 months now and has been in the band for 2 weeks (already went from 11mm to 5mm!! Wahoo!) He was a little over 3 weeks early, so his head was probably a bit softer, but I think his main issue was the tightness in his neck, which I didn't know to stretch until we had our consultation at CT. His twin sis was in the NICU for a little while, and she started to develop scaphycephaly. She was so pointy she literally *couldn't* lay on the back of her head. But that did correct itself, thank goodness, once she was up in exersaucers and bumbos, and doing more tummy time. My son's head is also on the big side, so I wonder whether that was a factor. And it seems like a lot of the babies who get it are described as sweet and easygoing, which my Zach definitely is! I wonder whether the sweet mellow babies are more likely to get it because they just hang out and check out their universe rather the squirming around a lot and changing position. Who knows? -Pam On 2/8/08, Altvater <dkvatersbcglobal (DOT) net> wrote: My name is and my son was diagnosed with plagiocephaly when he was about 3 months old. He was born 7 and half weeks premature due to severe preclampsia and was in the hospital for 21 days before we could bring him home. I would like to other mom's or dad's stories as to why their child developed the issue. I think I know why he developed it, but I can not be sure. Thank you! , Mom of , 2 Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hello, Yes my son did have torticollis and was in therapy for about 9 months to correct that and to help with motor skills. He was born 7.5 weeks premature and was in the NICU for about 3 weeks. During that time he was in an incubator and then in a crib on back and was not repositioned from that. The side of the room his door was on is the side that is flat, I believe that he heard the noise on that side and therefore favored it. After I brought up the shape of his head to his pediatrician, she diagnosed him with torticollis and shortly after that we went to get him fitted for a helmet to help with the positional plagiocephaly. He wore the helmet for about 6 months and I have to say that it helped out quite a bit. He is now two years old and unless you know that he has or had plagiocephaly, it is not obvious. If you look at him from the top of his head down, his ears do not match up. His hair is growing in, but very patchy. He still has not had a hair cut, hopefully he will get one soon. I just love his curls! Re: Hello Everyone Hi ,I think you'll find that a lot of the babies that have plagiocephaly (including my daughter) also had a neck condition called torticollis - also known as "wry neck". So the question is, why the torticollis. In my daughter's case, it was because she was transverse in the womb and despite that, we delivered vaginally with forceps and vaccuum. Does your son have torticollis?FYI, my daughter was also 3 weeks early, so maybe her head was a little softer too.She's been in a DOC band from Cranial Technologies for five days now, and has really already adapted to it. And (finally) so have I. The first few days were tough, but the last couple haven't been so bad.Good Luck,>> My name is and my son was diagnosed with plagiocephaly when he was about 3 months old. He was born 7 and half weeks premature due to severe preclampsia and was in the hospital for 21 days before we could bring him home. I would like to other mom's or dad's stories as to why their child developed the issue. I think I know why he developed it, but I can not be sure. Thank you!> > ,> > Mom of , 2> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 I keep seeing this exact same post on many other autism boards. hmmm? And no offense to poor Channing if this is real, but some of it sounds, well...out there. Good luck in your quest.... the request seems odd and almost as if someone is trying to collect up a bunch of free postage. Internet does not go out in the rain...whether phone or dsl...? I just keep seeing this post appear all over the Internet...it's looking well suspicious... > > Hello Everyone. I am a female that has Autism- The Aspergers Form. I > am being treated meanly by people because I am looking for both postal > mail and e-mail pen pals that will accept short letters with questions > like for example: > 1. Do you have any pets? > 2. Do you like music? > 3. What type of music do you like? > And people do not want to be my pen pal. > > My hobbies include letter writeing, listening to music and makeing new > friends. My interests include pets, sports, camping and movies. > > If you would like to be a postal mail pen pal PLEASE PROVIDE A STAMP > so I can write you back because I live in a group home that has told > me that I have no money to get stamps. > > Please e-mail me at the e-mails below: > > CHANNING28270@... > CHANNING28270@... > CHANNING28270@... > CHANNING79@... > SOCKSCAT23@... > > If you would like to be my pen pal via postal mail or e-mail. If you > would like to be my postal mail pen pal please ask me for postal mail > address. Please let me know if you want to be a postal mail pen pal or > an e-mail pen pal. > > Also I would prefer to have some postal mail ONLY pen pals to fill up > my mail box because My internet goes out everytime it rains and > everytime it is hot during the Months of May, June, July, September > and August > > Channing > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Hi Channing, I think it would be good for you to ask what you need to do to be able to do some of these things. For example, as far as going to church - Are there some good behaviors you need to learn to go to church? Can someone come along to help you? If you really want to, and work hard at doing what you need to do, I bet you can work it out. Sometimes there are reasons for the rules the caregivers set down and if you listen to the reasons you might be able to change things. Good luck, Patty > Hello My name is Channing. I am a female. I live in s, North > Carolina . I have a Disability called Autism- I have the Aspergers > kind of autism. I was treated VERY MEANLY in a group home recently the > group home told me these things > > 1. That they would not let me go to the church I want to go to > 2. That they told me that I would not be able to use the bathroom > because of the fact I have problems with frequent urination > 3. They told me that I would not be able to use the phone- they wanted > a goal because I use the phone too much > 4. They told me that I could not be independent at all and that I > would have to be treated as a prisoner- I have a lot of capabilitys my > capabilitys is I can stay at home without my mother when she goes out > of town for 3 nights, I know how to ride the City bus in the > community, I know how to walk in the neighborhood and go to places > like the Library and post office on my own > 5. They told me that I must go to a Day program and do retarded lo > Functioning contract work because of the fact I do not have a job - I > have had jobs in the community before like working at Pizza Hut, > working as a file Clerk at Nationsbank and working as a Janitor at a > preschool > > Because of this I have gone back home to live with my ageing 64 years > old Mother and my ageing 68 years old dad . I also know if my parents > was to die and I was liveing at home with my parents I would become a > ward of the state of North Carolina and be placed in VERY > INAPPROPRIATE LIVEING SITUATIONS for someone like me- I do not want to > become a ward of the state of North Carolina. I AM TREATED VERY MEANLY > IN NORTH CAROLINA BECAUSE I HAVE A DISABILITY CALLED AUTISM- THE > ASPERGERS KIND OF AUTISM. > > I am also treated VERY MEANLY by people-pen pals because of the fact I > write very short letters with 2 or 3 questions ONLY. I do not have > much to say about my life because I have no friends where I live - > WHERE I LIVE THE PEOPLE CALL ME RETARDED ,PEOPLE CALL ME RUDE AND DO > NOT SPEAK TO ME AT ALL . > > I am looking for e-mail pen pals that can accept very short letters > with 2 or 3 questions like for example: > > 1. Do you have any pets? > 2. Do you like music? > 3. What kind of music do you like? > > If you would like to be my pen pal please e-mail me at > > the e-mails listed below: > > chanchan79@... > channing28270@... > channing28270@... > channingashbaugh@... > channinga@... > channing79@... > sockscat23@... > > I ALSO have a biggest fear in life my with my Autism -or Aspergers > Autism and me being 35 years old and my mom being 64 and my dad being > 68 years old my biggest fear in life is As My parents get older I know > that one day my parents are going to die. I do not want to become a > ward of my state I am going to need a place to live what can I do > about haveing a place to live that will include these things: > Things I Expect in my place I want to call home > > 1. Haveing independent time without Group home staff to be at the > house when I am at the house > 2. Being able to attend My Church that I want to attend every Sunday > without paying for a bus > 3. Being able to go to my Church Activitys like Concerts and christmas > musicals without paying for a bus > 4. I want a person to help me with cooking- I DO NOT KNOW how to cook > at all > 5. I want a person or a nest that promises to give me transportation > to my church that I want to attend Every Sunday > 6. I would Like someone to talk to other than Clients if I am in a nest > 7. I want to go to bed when ever I want to > 8. Be able to use my phone without people saying I talk on the phone > too much and need a goal for useing the phone > 9. Haveing activities like being able to go to: > 1. Dances > 2. Bingo Games > 3. Going to the Movies > 4. Going Bowling > 5. Being able to go swimming > 6. Haveing Access to the YMCA > 7. Going on trips like: > 1. To the Beach > 2. Camping > 10. Not being told that I MUST go to a sheltered workshop or day > program if I do not have a Job > 11. Being able to stay home if I am too sick to go to work > > > > > > I am also looking for some pen pal I can join. > > I am also looking for people that can join my I own. > > Channing > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 > Internet does not go out in the rain...whether phone or dsl...? I > Satalite-based internet might... Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Don't know where the original message said this, just tuned in for this one. YES! Internet does go out in the rain - Yes, satellite. Sometimes, it just goes out in heavy cloud cover. It also goes out in snow or ice. It can depend on the angle the person's dish is pointed, but yup - Jim is right. Satellite internet does go out. Sometimes, the weather can even be great at our house, but bad at the uplink, and our internet will go down. P. Jim Witte wrote: > > > Internet does not go out in the rain...whether phone or dsl...? I > > > Satalite-based internet might... > > Jim > > Quote Link to comment Share on other sites More sharing options...
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