Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Leigh, Our helmet sat right above her eyebrows. When we first got it it came down onto her eyebrows and almost over the top of her eyes. We went back the next day and had it adjusted. Much better! I would try to get in earlier if you can. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Leigh, The helmet should come only to the eyebrows. If it comes down to the point that she cannot see you then it needs to be adjusted, tightened or trimmed. And a rapid initial correction is not cause to call you crazy. In fact, it happens. Hope this helps. Rob S. Kistenberg, CP, LP, FAAOP O & P Clinical Technologies Gainesville, FL 32605 352-331-4221 robcp@... -----Original Message----- From: kandlmoeg@... [mailto:kandlmoeg@...] Sent: Thursday, May 31, 2001 1:53 PM Plagiocephaly Subject: What to do? Olivia has been having a few rough nights. Her helmet seems to be slipping forward, sometimes it's touching her eyelashes on her left eye. Our ortho told us it should have some " play " in it but I can't believe it should be resting so low. I'm wondering if that's what may be waking her up in the night so often. Can anyone with a helmet tell me where it sits on the forehead? Liv's covers her eyebrows most of the time. She has to tip her head back sometimes to look at us! We're not supposed to have an adjustment until 6/18 but I think I may try to get her in sooner. I also think I may be going crazy because last night in the tub I thought her head already looked different. We've only had the helmet a week! Who knows, maybe just wishful thinking. Sounds like naptime's over, gotta go. Leigh, mom to Olivia (helmet 5/24/01) Mt. Pleasant, MI For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Leigh, Well I was thinking the same thing...I must be nuts because Leigha's head already looks better and she was only banded on Friday the 25th. Leigha didn't sleep at all last night and I think it was her band also. We have a slightly different problem since she is post op for cranial vault reconstruction and has a screw poking out a little that is being aggravated by the band. Of course this screw is on a holding spot so lots of a pain. We are going to try putting a corn pad on her had before putting her band on...hopefully that will work....lol! Leigha's band on her eyebrows when we first got the band and the OT marked and cut it to adjust it further up on her forehead. He also had to adjust the holes for the ears a bit. You might want to call your OT because it doesn't sound to me like your little ones band is fit correctly yet! Let me know how it goes please Mel > Olivia has been having a few rough nights. Her helmet seems to be slipping forward, sometimes it's touching her eyelashes on her left eye. Our ortho told us it should have some " play " in it but I can't believe it should be resting so low. I'm wondering if that's what may be waking her up in the night so often. Can anyone with a helmet tell me where it sits on the forehead? Liv's covers her eyebrows most of the time. She has to tip her head back sometimes to look at us! We're not supposed to have an adjustment until 6/18 but I think I may try to get her in sooner. I also think I may be going crazy because last night in the tub I thought her head already looked different. We've only had the helmet a week! Who knows, maybe just wishful thinking. Sounds like naptime's over, gotta go. > Leigh, mom to Olivia (helmet 5/24/01) > Mt. Pleasant, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Oh I wanted to add we saw improvement in a week with and when we went back for his 1 week follow up they already had to make an adjustment, So it does happen:-) Beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Hey leigh i would try and get miss olivia in for an adjustment sooner. Although brians helemt had alot of play and his rested quite low I dont think it should be that low on her and she may need just a little adjustment. I wouldnt wait for the 18th though. I would think that is probably what is waking her up along with just getting used to this new contraption on her head. I hope you were able to get a hold of the ortho. Let us know whats going on. Beck mom to brian doc banded and grad memphis, tn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi , Did you ever get your LDN prescription filled? The site I was on was a form to fill out to receive the autoject 2 for the glass syringes of COPAXONE. Avonex is similar to Beta, shutting down or suppressing the immune system. That is why I stopped it. I really do not know what to do. I am in a quandary now. I will continue with the LDN but not sure if I should try COPAXONE ALSO. I will keep searching for information. Joan, PACol. Potter's Cairn RescueCookbook is ready to Pre-orderPlease click belowhttp://mall.cairnrescue.com/inv_cookbook.htm#order ----- Original Message ----- From: son 'Joan Cowdrick' Sent: Monday, December 01, 2003 5:47 PM Subject: RE: [low dose naltrexone] WHAT TO DO? What Web site are you trying to join where you have a drop down menu? I’ve read that the only med you can not take with LDN is the Beta. Beta is such a high dose it shuts down the immune system where as LDN boosts the immune system. son Owner/ operator Friends with MS.com -----Original Message-----From: Joan Cowdrick [mailto:cowsarus@...] Sent: Monday, December 01, 2003 12:20 PMUndisclosed-Recipient:;@...Subject: [low dose naltrexone] WHAT TO DO? I need some advice on the meds I am taking. I currently am taking 3 mg. of LDN each night at bedtime. Previous to that, I was getting Avonex injections. Now I understand they are incompatible with LDN, so I stopped the Avonex. It was recommended that I start Copaxone, but I have been reading that Copaxone is for RRMS. I have not had an exacerbation in quite a few years. I do not have RRMS, so what to do? When I filled out the registration form for the web site, they asked for your birthdate. I was born in 1935, but the dropdown only went to 1940. Don't older people use Copaxone? Is it because their MS turns into SPMS? Again, what to do? Joan, PACol. Potter's Cairn RescueCookbook is ready to Pre-orderPlease click belowhttp://mall.cairnrescue.com/inv_cookbook.htm#order Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Of course believe what you will but there is some evidence the injectables are NOT incompatible with LDN. I don't hold with people who are not my doctor or loved one telling me what NOT to take. That said it seems pretty obvious why narcotics and LDN don't mix. -Sullivan > Hi , > Did you ever get your LDN prescription filled? The site I was on was a form to fill out to receive the autoject 2 for the glass syringes of COPAXONE. Avonex is similar to Beta, shutting down or suppressing the immune system. That is why I stopped it. I really do not know what to do. I am in a quandary now. I will continue with the LDN but not sure if I should try COPAXONE ALSO. I will keep searching for information. > Joan, PA > Col. Potter's Cairn Rescue > Cookbook is ready to Pre-order > Please click below > http://mall.cairnrescue.com/inv_cookbook.htm#order > ----- Original Message ----- > From: son > 'Joan Cowdrick' > Sent: Monday, December 01, 2003 5:47 PM > Subject: RE: [low dose naltrexone] WHAT TO DO? > > > What Web site are you trying to join where you have a drop down menu? I've read that the only med you can not take with LDN is the Beta. Beta is such a high dose it shuts down the immune system where as LDN boosts the immune system. > > > > son > > Owner/ operator > > Friends with MS.com > > > > -----Original Message----- > From: Joan Cowdrick [mailto:cowsarus@e...] > Sent: Monday, December 01, 2003 12:20 PM > Undisclosed-Recipient:;@... > Subject: [low dose naltrexone] WHAT TO DO? > > > > I need some advice on the meds I am taking. I currently am taking 3 mg. of LDN each night at bedtime. Previous to that, I was getting Avonex injections. Now I understand they are incompatible with LDN, so I stopped the Avonex. It was recommended that I start Copaxone, but I have been reading that Copaxone is for RRMS. I have not had an exacerbation in quite a few years. I do not have RRMS, so what to do? When I filled out the registration form for the web site, they asked for your birthdate. I was born in 1935, but the dropdown only went to 1940. Don't older people use Copaxone? Is it because their MS turns into SPMS? Again, what to do? > > Joan, PA > Col. Potter's Cairn Rescue > Cookbook is ready to Pre-order > Please click below > http://mall.cairnrescue.com/inv_cookbook.htm#order > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 I've been having great success, since being diagnosed with RA a couple of months ago, on 7.5mg prednisone and methotraxate. However, yesterday, above my right knee started hurting really bad. It is the same this morning. I don't have another appointment with my Rheumatologist until the beginning of January. I'm not sure if I should call him or what. I was hoping to go off the pred soon. thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 When in doubt, call the doctor. Sierra > > I've been having great success, since being diagnosed with RA a > couple of months ago, on 7.5mg prednisone and methotraxate. However, > yesterday, above my right knee started hurting really bad. It is the > same this morning. I don't have another appointment with my > Rheumatologist until the beginning of January. I'm not sure if I > should call him or what. I was hoping to go off the pred soon. > thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 laura i have been on 10mg of predand i put on a bunch of weigth i gave up pop of all kinds and i lost a lot of the weight that i put on it did help i started drinking tea with alot of sugar and it came bac so if you watch what you eat it might help not to put much weight on i am trying to loose what i have just put on again i wish you luck on your weight sherrie > > Thanks Sierra, > I did just speak to my Rheumatologist, he up'd my pred to 10mgs > again. He said to call if that doesn't help! Ugh, I am so tired of > the Pred. I keep putting weight on and it won't come off. I don't > know what else to do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Theresa, I am so sorry you are having this trouble and I'll bet you all of us has went through it. I know it doesn't help but you will find out just keep firing the bad ones that is what I have done and finally found a RA I love that listens to me what a rare concept in doctors. For some reason a doctor just pushes women around and it doesn't matter if they are male or female I have had problems with both. When I was twenty I was having sever pain and it would take me down. It took me three years and 10 doctors to find the endometroses I had. Then last year I was having problems I started researching my symptoms on line and realized I had a thyroid problem I push them into doing a thyroid test and then an autoimmune test which showed I had Hashimoto's disease it took me six month for me to convince them the meds I needed I even got it out of the country until I found my RA which had no problem prescribing it to me since he has a thyroid problem (boy did I luck out) he took an hour with me pushing and asking questions. Did blood work but told me it may be negative not unusual-I thank God each day for this guy I went into see him I am having pain didn't know how much until he put me on another med that took it away. So Theresa get mad be pushy and fire doctors that do not take you seriously I am lucky my insurance lets me pick the doctor so I had no problem interviewing doctors I would make an appointment if I didn't like how they treated me and the symptoms I left and did not go back. You know what you are feeling they do not do not sell yourself short believe in yourself and have fun firing the docs. You just vent here and you have all the support we know you are hurting. Marsha Theresa <pinnlady@...> wrote: For several years I have been hit with bad bouts of fatigue, migraine and abdominal pain. Last year was bad, i was hospitalized with pancreatitis and then told my gallbladder wasn't working. No reason for any of this, was told to quit drinking. I have a family history of alcoholism so the doctor assumed I was a drunk. My blood work for years has showed abnormally large red blood cells but no one has bothered to investigate. I have been told to see a shrink. Starting about 2 months ago i was hit hard with the fatigue. The abdominal pain was terrible and the doctor's nurse kept telling me that i have a virus and to get some rest. She was deflecting my calls and treating me just like every other doc and nurse i have come across. I ended up in the er with shortness of breath and pain. I had pleurosy and the pancreas was inflamed. Given meds and sent home. I had had enough when i asked for a referal to an immunologistand was told i didn't need one. Uhhhgggggg! I called the insurance company, they gave me a name of one and i went off to see him with my 2 pages of symptoms that have popped up over the last few years. I am RA positive with a low ANA but he says it's not lupus. I had an upper and lower gi which showed a hiatal hernia, severe gastritis, chronic esophigitis. They removed a small polyp and did several biopsies. My primary care doc finally caved in and started b-12 shots.I'm kinda running out of organs. I had a hysterectomy in 2000. The ones i have left are being damaged. I am at a loss as to what to do next and what questions to ask. I am mad and want to feel better. I am looking for a rheumatologist and hoping to get answers there. Is there anything that can get a fire lit under a doc's butt to find out what's going on? Thanx Theresa Quote Link to comment Share on other sites More sharing options...
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