Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 > > Please help! > > I just picked up my CT films and I read the report that was with them. It says > that I have sclerosis in both SI joints. What is sclerosis? I go to the clinic > tomorrow so it will all be explained, but until then, this is racking my > brain. > > ~ > > P.S. Does that indicate Spondylitis, Lupus, MS, etc.? -- I would guess this means you have a spondylarthropathy. Your doctor will have to make the diagnosis. I would consider this big picture a bit of a relief. I would rather have a spondylitis situation than lupus. I doubt you have both. Women generally are not as severely effected as men by the spondylarthropathies. They've caught it early, learn more about low-starch diets, and get on an antibiotic (or 2). Treat it now, so you can stay ahead of it. has good info about the diet, Pierre about AP. Others can help, too. Keep us informed. Good luck Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Hi Suranjan, I think minocycline can be very helpful for reactive arthritis or Reiters. It has helped me. I think the colitis may be related. I couldn't take Indocin, either. Please be sure to post your message to the whole group, they collectively know a lot. Ask (on the list) for a list of doctors in you area familiar with AP. Read " The New Arthritis Breakthrough. " Just find someone to prescribe antibiotics. I think it our best hope. I'm about to leave for vacation, will be back in 10 days. Be sure to ask the group your questions. Pierre has lots of answers about antibiotics for spondyloarthropathies. can send you diet information. I'll be happy to write more when I return. Good luck! Jean > HI , > I m a 27 year old male from Michigan ,USA . My rheumo told me last week that > I have reiter's syndrome and i am HLA-B27 positive . > It all started three months back whenI had leg pain and subsequent iritis > (eye problem ) . Now I have a stiff neck and feel very tired throughout the > day . > I also developed some urinary tract problems but the rheumo gave me INDOCIN > ( A NSAID) and an antibiotic called doxycyclin (to be taken once a day ) > .All tests ecept the HLA-27 has so far proved negative. Also I had a > intestenial problem called colitis abt three years back. > I stopped the indocin by myself because I had stomach problems . > What should I do now ?Am I on right track ? > Please help me , > Bye and Thanks, > Suranjan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 --- In @y..., " fightingautism " <fightingautism@y...> wrote: > I am searching for a doc who will help us chelate. I live in > Knoxville, TN and am willing to travel, but the closer the better. > Please don't tell me to check DAN! list, it's useless. I call the > docs on the list who say they do chelation and the office says they > don't do chelation. Should be taken off the list, in my humble > opinion! Hi Debi, Do you mean that these are doctors whose info on the DAN list says specifically that they do chelation? If so, please note that DAN has a little statement on the page ASKING YOU to please inform DAN if you find any of the info is not correct. So, yeah, you should inform DAN. Apparently they want to know Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Thank you for pointing out to me that DAN! asks to report to them. I am well aware of this. Please note that it doesn't say I have the authority to remove docs, only to notify them. :-) I don't believe I was asking what to do about ME personally informing DAN! of their list, I was asking if anyone knows [of a personal nature]of a doc in my area. Thank you also for pointing out links to files I've already read. That's why I've been asking for people, not for files. It's been my experience in the autism world of sort of mentoring one another when we are facing a new aspect of autism. If this is considered an expectation of warm and fuzzy, please forgive me for asking for such. Thanks also for the suggestion that I should be helping others on this list and posting url's to newcomers. I am more than happy to help others on topics of which I have information/experience to give. Since I am a newcomer in the sense of knowing very little about chelation, knowing nothing about competent, helpful professionals of which to assist with chelation, or knowing what steps to go toward chelation, I think it best to leave it to the other, experienced members of this list to assist in that rather than give someone the wrong or inappropriate info. I'm just wierd like that. :-) Thanks again! Debi > > Do you mean that these are doctors whose info on the DAN > list says specifically that they do chelation? If so, please > note that DAN has a little statement on the page ASKING YOU > to please inform DAN if you find any of the info is not > correct. So, yeah, you should inform DAN. Apparently > they want to know > > Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 call info in Baton Rouge Louisiana and get Dr Amy Holmes and Dr. Cave's phone number and if they are not taking any more patients, they can probably tell you who is. I know i thought of taking my son to a doctor she trained (I'm speaking of Dr Holmes), Dr Layton in Townson MD a message dated 11/1/02 2:26:29 AM Eastern Standard Time, moriam@... writes: << Subj: [ ] Re: please help! Date: 11/1/02 2:26:29 AM Eastern Standard Time From: moriam@... (moriamerri) Reply-to: > I am searching for a doc who will help us chelate. I live in > Knoxville, TN and am willing to travel, but the closer the better. > Please don't tell me to check DAN! list, it's useless. I call the > docs on the list who say they do chelation and the office says they > don't do chelation. Should be taken off the list, in my humble > opinion! Hi Debi, Do you mean that these are doctors whose info on the DAN list says specifically that they do chelation? If so, please note that DAN has a little statement on the page ASKING YOU to please inform DAN if you find any of the info is not correct. So, yeah, you should inform DAN. Apparently they want to know Moria ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 I'm sorry that you are having such a hard time. My son adjusted to his band right from the start but I know that sometimes it can take some babies a week or two. Have you seen any red spots? Maybe an area that needs an adjustment is bothering him. Take the band off and look all over. If you received the band last tuesday I am going to assume that you are going back tomorrow? If so, suggest they trim a little over his eyes (we had to have that done several times). Check for red spots and keep us posted. Here's hoping you get some sleep! Natashamighuse2003 <mighuse2003@...> wrote: Hi,My little six month old just got his DOC band last Tuesday and is having a hard time sleeping in it. He wasn't much of a napper before the band and now even less. Nights have been particularly hard for me (Mom) b/c I breastfeed and that's the only way to get him to go back to sleep. Even though he's not much of a napper I always knew he'd get enough sleep at night b/c he would go up 10 hours w/out waking. In fact, I had to get up to nurse him while he slept! Now it's a different story! I wake up at least three times a night to feed/console him. I am completely exhausted. Also, the band keeps going over his eyes while he is laying down. I have to constantly readjust it and pray he doesn't wake up while I do it. Does this mean anything? Like that the band is working and his head is being starting to fit into it? Please help a VERY frazzled mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 We had a similar problem with Jordyn in the first few nights of the band. She didn't sleep well at all because she wasn't used to it. We also had the issue of the band going over her eyes when she would lay down (which really ticked her off!). I took her back to CT for an adjustment, and they trimmed quite a bit over her eyes and on the pointy nosepiece. Since then, she's been sleeping 10 hrs a night straight. Also, do what Natasha suggested and look for red spots. Jordyn had a bad one that would not fade after 2 hrs with the band off, and that area had to be adjusted by CT as well. I think that some babies just take longer to adjust to sleeping with it on. Don't worry, once the fit is correct he will soon enough find a comfortable position to sleep in. & Jordyn (DOCband 10/13) Dallas > Hi, > > My little six month old just got his DOC band last Tuesday and is > having a hard time sleeping in it. He wasn't much of a napper before > the band and now even less. Nights have been particularly hard for me > (Mom) b/c I breastfeed and that's the only way to get him to go back > to sleep. Even though he's not much of a napper I always knew he'd > get enough sleep at night b/c he would go up 10 hours w/out waking. > In fact, I had to get up to nurse him while he slept! Now it's a > different story! I wake up at least three times a night to > feed/console him. I am completely exhausted. Also, the band keeps > going over his eyes while he is laying down. I have to constantly > readjust it and pray he doesn't wake up while I do it. Does this mean > anything? Like that the band is working and his head is being > starting to fit into it? > > Please help a VERY frazzled mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Welcome to the group! My son had similar problems with his band. We had the front trimmed 3 times before it finally stopped covering his eyes when he laid down. I wondered if we would ever sleep again! It did get better once the band was trimmed and adjusted. Good luck and keep us posted on your son's progress. -mom to Aidan STARband 8/26/03 GR MI -----Original Message-----From: mighuse2003 [mailto:mighuse2003@...]Sent: Monday, October 20, 2003 8:58 AMPlagiocephaly Subject: Please help!Hi,My little six month old just got his DOC band last Tuesday and is having a hard time sleeping in it. He wasn't much of a napper before the band and now even less. Nights have been particularly hard for me (Mom) b/c I breastfeed and that's the only way to get him to go back to sleep. Even though he's not much of a napper I always knew he'd get enough sleep at night b/c he would go up 10 hours w/out waking. In fact, I had to get up to nurse him while he slept! Now it's a different story! I wake up at least three times a night to feed/console him. I am completely exhausted. Also, the band keeps going over his eyes while he is laying down. I have to constantly readjust it and pray he doesn't wake up while I do it. Does this mean anything? Like that the band is working and his head is being starting to fit into it? Please help a VERY frazzled mom.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Hi there, sometimes it takes several adjustments in the first weeks of treatment to get just the right fight. I would call CT and let them know what is going on and see what they suggest. Also, Brachy babies normally have a harder time adjusting to the band because they are use to sleeping on a flat spot. Please keep us updated on what they say/do. Dustie > Hi, > > My little six month old just got his DOC band last Tuesday and is > having a hard time sleeping in it. He wasn't much of a napper before > the band and now even less. Nights have been particularly hard for me > (Mom) b/c I breastfeed and that's the only way to get him to go back > to sleep. Even though he's not much of a napper I always knew he'd > get enough sleep at night b/c he would go up 10 hours w/out waking. > In fact, I had to get up to nurse him while he slept! Now it's a > different story! I wake up at least three times a night to > feed/console him. I am completely exhausted. Also, the band keeps > going over his eyes while he is laying down. I have to constantly > readjust it and pray he doesn't wake up while I do it. Does this mean > anything? Like that the band is working and his head is being > starting to fit into it? > > Please help a VERY frazzled mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Hi. It sometimes takes awhile (a week or two) for them to adjust to sleeping in the band so that is normal. But the way you describe the covering the eyes sounds like you might need to call CT and have it adjusted a bit. My sons DOCband is really low as well, it comes down over his eyebrows but it does not cover his eyes. HTH. Let us know what happens. Whithc CT clinic do you go to? Donna and Xavier DOCBand 7/25 and 10/8 AZ -- In Plagiocephaly , " mighuse2003 " <mighuse2003@y...> wrote: > Hi, > > My little six month old just got his DOC band last Tuesday and is > having a hard time sleeping in it. He wasn't much of a napper before > the band and now even less. Nights have been particularly hard for me > (Mom) b/c I breastfeed and that's the only way to get him to go back > to sleep. Even though he's not much of a napper I always knew he'd > get enough sleep at night b/c he would go up 10 hours w/out waking. > In fact, I had to get up to nurse him while he slept! Now it's a > different story! I wake up at least three times a night to > feed/console him. I am completely exhausted. Also, the band keeps > going over his eyes while he is laying down. I have to constantly > readjust it and pray he doesn't wake up while I do it. Does this mean > anything? Like that the band is working and his head is being > starting to fit into it? > > Please help a VERY frazzled mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Hi, Welcome to the group. I just want to second everything you've already been told. It seems like an adjustment is needed. Please let us know how your next CT appt goes. Hopefully after his band is adjusted it'll be smooth sailing. > Hi, > > My little six month old just got his DOC band last Tuesday and is > having a hard time sleeping in it. He wasn't much of a napper before > the band and now even less. Nights have been particularly hard for me > (Mom) b/c I breastfeed and that's the only way to get him to go back > to sleep. Even though he's not much of a napper I always knew he'd > get enough sleep at night b/c he would go up 10 hours w/out waking. > In fact, I had to get up to nurse him while he slept! Now it's a > different story! I wake up at least three times a night to > feed/console him. I am completely exhausted. Also, the band keeps > going over his eyes while he is laying down. I have to constantly > readjust it and pray he doesn't wake up while I do it. Does this mean > anything? Like that the band is working and his head is being > starting to fit into it? > > Please help a VERY frazzled mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 I hope this helps. I went through the same thing with my son, Chase this week. It was week 3 the first time we were going 2 weeks in- between visits and he didn't make it. He does have senstive skin. He got a red spot abover the ear below the velcro. It may have been there since the beginning and I missed it. They adjusted it and it's been fine. But CT did tell me that many get irritation/pink-red spots at the base of the neck. So that's very common. I think in the beginning it will take a bit more adjusting to get everything fitting well for him without irritations and then it shold just be the regular appointments unless he hits a big growth spurt. CT told me how to deal with it since I'm not able to get into the office easily either. Watch the spot and if it fades in 1 hour it's ok. If it does not wait for it to fade and keep note of hoe long it takes to fade so you can tell CT. Do not put the band back on until it's faded. Chase's didn't fade completely so I knew I had no choice but to have it adjusted. I'm sure once you get all the little things tweaked it will be better. Hang in there. Sherry Chase (7 months) tort. DOCband 2/15 Sherry > > I hope there is some wisdom about this problem out there! My son, , now 6 months old has had a doc band for over 1 week now. He did well with it after day 3 but then had a red, raised mark above his ear that was concern enough to bring him in before his 1 week check and have some adjustments. He went to his one week adjustment on Friday and now on Saturday night when we took it off he had a bright red spot near the base of his neck. I already took his band off once earlier this afternoon to dry his head off and saw it but he gets irritated in that area just from clothes and blankets sometimes. It was a fading spot and looked like it might be OK but now he has gotten up every hour for 3 hours and wouldn't stop crying the last time. We took the band off...we all have to get some sleep. My husband and I can't keep making twice weekly trips to CT and taking off work. We have had to pay out of pocket for this until our insurance issues are settled and I'm stressed beyond > belief. The CT person said he may just be " one of those babies " who always has red spots from his band. I don't want him to be in pain and I want him to be able to finish his treatment especially before it gets really hot here (we live in Texas). Of course it is the weekend and they don't have anyone to field questions after hours. Any suggestions would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 I hope this helps. I went through the same thing with my son, Chase this week. It was week 3 the first time we were going 2 weeks in- between visits and he didn't make it. He does have senstive skin. He got a red spot abover the ear below the velcro. It may have been there since the beginning and I missed it. They adjusted it and it's been fine. But CT did tell me that many get irritation/pink-red spots at the base of the neck. So that's very common. I think in the beginning it will take a bit more adjusting to get everything fitting well for him without irritations and then it shold just be the regular appointments unless he hits a big growth spurt. CT told me how to deal with it since I'm not able to get into the office easily either. Watch the spot and if it fades in 1 hour it's ok. If it does not wait for it to fade and keep note of hoe long it takes to fade so you can tell CT. Do not put the band back on until it's faded. Chase's didn't fade completely so I knew I had no choice but to have it adjusted. I'm sure once you get all the little things tweaked it will be better. Hang in there. Sherry Chase (7 months) tort. DOCband 2/15 Sherry > > I hope there is some wisdom about this problem out there! My son, , now 6 months old has had a doc band for over 1 week now. He did well with it after day 3 but then had a red, raised mark above his ear that was concern enough to bring him in before his 1 week check and have some adjustments. He went to his one week adjustment on Friday and now on Saturday night when we took it off he had a bright red spot near the base of his neck. I already took his band off once earlier this afternoon to dry his head off and saw it but he gets irritated in that area just from clothes and blankets sometimes. It was a fading spot and looked like it might be OK but now he has gotten up every hour for 3 hours and wouldn't stop crying the last time. We took the band off...we all have to get some sleep. My husband and I can't keep making twice weekly trips to CT and taking off work. We have had to pay out of pocket for this until our insurance issues are settled and I'm stressed beyond > belief. The CT person said he may just be " one of those babies " who always has red spots from his band. I don't want him to be in pain and I want him to be able to finish his treatment especially before it gets really hot here (we live in Texas). Of course it is the weekend and they don't have anyone to field questions after hours. Any suggestions would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi. I am from HOuston, Texas. I hope you have found some comfort with your little one. My little is 6months as well and we are having some rocky episodes at night too (6days). It sounds like you need more adjustments on your helmet. For the most part he has adjusted well. kg --- Hovey <flyingchef777@...> wrote: > I hope there is some wisdom about this problem out > there! My son, , now 6 months old has had a doc > band for over 1 week now. He did well with it after > day 3 but then had a red, raised mark above his ear > that was concern enough to bring him in before his 1 > week check and have some adjustments. He went to > his one week adjustment on Friday and now on > Saturday night when we took it off he had a bright > red spot near the base of his neck. I already took > his band off once earlier this afternoon to dry his > head off and saw it but he gets irritated in that > area just from clothes and blankets sometimes. It > was a fading spot and looked like it might be OK but > now he has gotten up every hour for 3 hours and > wouldn't stop crying the last time. We took the > band off...we all have to get some sleep. My > husband and I can't keep making twice weekly trips > to CT and taking off work. We have had to pay out > of pocket for this until our insurance issues are > settled and I'm stressed beyond > belief. The CT person said he may just be " one of > those babies " who always has red spots from his > band. I don't want him to be in pain and I want him > to be able to finish his treatment especially before > it gets really hot here (we live in Texas). Of > course it is the weekend and they don't have anyone > to field questions after hours. Any suggestions > would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi. I am from HOuston, Texas. I hope you have found some comfort with your little one. My little is 6months as well and we are having some rocky episodes at night too (6days). It sounds like you need more adjustments on your helmet. For the most part he has adjusted well. kg --- Hovey <flyingchef777@...> wrote: > I hope there is some wisdom about this problem out > there! My son, , now 6 months old has had a doc > band for over 1 week now. He did well with it after > day 3 but then had a red, raised mark above his ear > that was concern enough to bring him in before his 1 > week check and have some adjustments. He went to > his one week adjustment on Friday and now on > Saturday night when we took it off he had a bright > red spot near the base of his neck. I already took > his band off once earlier this afternoon to dry his > head off and saw it but he gets irritated in that > area just from clothes and blankets sometimes. It > was a fading spot and looked like it might be OK but > now he has gotten up every hour for 3 hours and > wouldn't stop crying the last time. We took the > band off...we all have to get some sleep. My > husband and I can't keep making twice weekly trips > to CT and taking off work. We have had to pay out > of pocket for this until our insurance issues are > settled and I'm stressed beyond > belief. The CT person said he may just be " one of > those babies " who always has red spots from his > band. I don't want him to be in pain and I want him > to be able to finish his treatment especially before > it gets really hot here (we live in Texas). Of > course it is the weekend and they don't have anyone > to field questions after hours. Any suggestions > would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi ! I am in Sugar Land, Texas. My son has the Starband and we had a rocky start. We went in for adjustments on 4 different days in a weeks period. I was about to pull my hair out, but since that last adjustment, everything has been pretty smooth. Maybe a few more and he will be there. Good luck! Heidi Mom to Braden - Starband 02/17/06kathy svetlik <ksvetlik@...> wrote: Hi. I am from HOuston, Texas. I hope you have foundsome comfort with your little one. My little is6months as well and we are having some rocky episodesat night too (6days). It sounds like you need moreadjustments on your helmet. For the most part he hasadjusted well.kg--- Hovey wrote:> I hope there is some wisdom about this problem out> there! My son, , now 6 months old has had a doc> band for over 1 week now. He did well with it after> day 3 but then had a red, raised mark above his ear> that was concern enough to bring him in before his 1> week check and have some adjustments. He went to> his one week adjustment on Friday and now on> Saturday night when we took it off he had a bright> red spot near the base of his neck. I already took> his band off once earlier this afternoon to dry his> head off and saw it but he gets irritated in that> area just from clothes and blankets sometimes. It> was a fading spot and looked like it might be OK but> now he has gotten up every hour for 3 hours and> wouldn't stop crying the last time. We took the> band off...we all have to get some sleep. My> husband and I can't keep making twice weekly trips> to CT and taking off work. We have had to pay out> of pocket for this until our insurance issues are> settled and I'm stressed beyond> belief. The CT person said he may just be "one of> those babies" who always has red spots from his> band. I don't want him to be in pain and I want him> to be able to finish his treatment especially before> it gets really hot here (we live in Texas). Of> course it is the weekend and they don't have anyone> to field questions after hours. Any suggestions> would be greatly appreciated!> > , mom to , 6 months> > > > ---------------------------------> > Use Photomail to share photos without annoyingattachments.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi ! I am in Sugar Land, Texas. My son has the Starband and we had a rocky start. We went in for adjustments on 4 different days in a weeks period. I was about to pull my hair out, but since that last adjustment, everything has been pretty smooth. Maybe a few more and he will be there. Good luck! Heidi Mom to Braden - Starband 02/17/06kathy svetlik <ksvetlik@...> wrote: Hi. I am from HOuston, Texas. I hope you have foundsome comfort with your little one. My little is6months as well and we are having some rocky episodesat night too (6days). It sounds like you need moreadjustments on your helmet. For the most part he hasadjusted well.kg--- Hovey wrote:> I hope there is some wisdom about this problem out> there! My son, , now 6 months old has had a doc> band for over 1 week now. He did well with it after> day 3 but then had a red, raised mark above his ear> that was concern enough to bring him in before his 1> week check and have some adjustments. He went to> his one week adjustment on Friday and now on> Saturday night when we took it off he had a bright> red spot near the base of his neck. I already took> his band off once earlier this afternoon to dry his> head off and saw it but he gets irritated in that> area just from clothes and blankets sometimes. It> was a fading spot and looked like it might be OK but> now he has gotten up every hour for 3 hours and> wouldn't stop crying the last time. We took the> band off...we all have to get some sleep. My> husband and I can't keep making twice weekly trips> to CT and taking off work. We have had to pay out> of pocket for this until our insurance issues are> settled and I'm stressed beyond> belief. The CT person said he may just be "one of> those babies" who always has red spots from his> band. I don't want him to be in pain and I want him> to be able to finish his treatment especially before> it gets really hot here (we live in Texas). Of> course it is the weekend and they don't have anyone> to field questions after hours. Any suggestions> would be greatly appreciated!> > , mom to , 6 months> > > > ---------------------------------> > Use Photomail to share photos without annoyingattachments.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 I don't know if this will help but I too went thru that. My daughter got her band at 5.5 mths and it took 9 days of sleeplessness on everyone's part. I was starting to second-guess everything too, esp the fit of the band etc. We had her checked out for an ear infection, urine infection on the advice of the OT. All was fine. She just took that long to adjust and she suffered from horrible red spots too. She was a great sleeper (12-14 hours at night) and now she was getting up every 2 hours. I was ready to toss the band (well not permanently). What helped me was that I timed her one hour break right before bed so that at least she had some time in no band right before the long night ahead. Also, because of the red spots I just left the band off for one whole night. I did those two things the same day and that night she went back to her usual 13 hours. Since then she has continued. At her six mth check-up we also discovered that she had really grown so maybe your son is in the midde of a growth spurt. I really think that's what it was with Olivia. No matter how many often we went for adj too there was always red spots. After that 9 days though it started to stabilize. She still gets red after adj for a day or two but then she's alright. Think of the bright side. Growth spurt means correction! Also, I swear that I could feel a change in the back of her head after one week. I could see and feel a change at the end of second week. Our babies are so young that they are growing so fast so I'm hoping that you just got slammed like me with a growth spurt right when the band went on. The advice I get about the red spots is that if they fade in an hour, no worries. Olivia's never fade completely even after several hours but they do fade a bit and she doesn't seem to be bothered that much now. I guess my advice would be to figure out what the norm is for your son. Learn what a " normal " pink is for him and then benchmark everything as better or worse than that. Hope that helps, > > I hope there is some wisdom about this problem out there! My son, , now 6 months old has had a doc band for over 1 week now. He did well with it after day 3 but then had a red, raised mark above his ear that was concern enough to bring him in before his 1 week check and have some adjustments. He went to his one week adjustment on Friday and now on Saturday night when we took it off he had a bright red spot near the base of his neck. I already took his band off once earlier this afternoon to dry his head off and saw it but he gets irritated in that area just from clothes and blankets sometimes. It was a fading spot and looked like it might be OK but now he has gotten up every hour for 3 hours and wouldn't stop crying the last time. We took the band off...we all have to get some sleep. My husband and I can't keep making twice weekly trips to CT and taking off work. We have had to pay out of pocket for this until our insurance issues are settled and I'm stressed beyond > belief. The CT person said he may just be " one of those babies " who always has red spots from his band. I don't want him to be in pain and I want him to be able to finish his treatment especially before it gets really hot here (we live in Texas). Of course it is the weekend and they don't have anyone to field questions after hours. Any suggestions would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 I don't know if this will help but I too went thru that. My daughter got her band at 5.5 mths and it took 9 days of sleeplessness on everyone's part. I was starting to second-guess everything too, esp the fit of the band etc. We had her checked out for an ear infection, urine infection on the advice of the OT. All was fine. She just took that long to adjust and she suffered from horrible red spots too. She was a great sleeper (12-14 hours at night) and now she was getting up every 2 hours. I was ready to toss the band (well not permanently). What helped me was that I timed her one hour break right before bed so that at least she had some time in no band right before the long night ahead. Also, because of the red spots I just left the band off for one whole night. I did those two things the same day and that night she went back to her usual 13 hours. Since then she has continued. At her six mth check-up we also discovered that she had really grown so maybe your son is in the midde of a growth spurt. I really think that's what it was with Olivia. No matter how many often we went for adj too there was always red spots. After that 9 days though it started to stabilize. She still gets red after adj for a day or two but then she's alright. Think of the bright side. Growth spurt means correction! Also, I swear that I could feel a change in the back of her head after one week. I could see and feel a change at the end of second week. Our babies are so young that they are growing so fast so I'm hoping that you just got slammed like me with a growth spurt right when the band went on. The advice I get about the red spots is that if they fade in an hour, no worries. Olivia's never fade completely even after several hours but they do fade a bit and she doesn't seem to be bothered that much now. I guess my advice would be to figure out what the norm is for your son. Learn what a " normal " pink is for him and then benchmark everything as better or worse than that. Hope that helps, > > I hope there is some wisdom about this problem out there! My son, , now 6 months old has had a doc band for over 1 week now. He did well with it after day 3 but then had a red, raised mark above his ear that was concern enough to bring him in before his 1 week check and have some adjustments. He went to his one week adjustment on Friday and now on Saturday night when we took it off he had a bright red spot near the base of his neck. I already took his band off once earlier this afternoon to dry his head off and saw it but he gets irritated in that area just from clothes and blankets sometimes. It was a fading spot and looked like it might be OK but now he has gotten up every hour for 3 hours and wouldn't stop crying the last time. We took the band off...we all have to get some sleep. My husband and I can't keep making twice weekly trips to CT and taking off work. We have had to pay out of pocket for this until our insurance issues are settled and I'm stressed beyond > belief. The CT person said he may just be " one of those babies " who always has red spots from his band. I don't want him to be in pain and I want him to be able to finish his treatment especially before it gets really hot here (we live in Texas). Of course it is the weekend and they don't have anyone to field questions after hours. Any suggestions would be greatly appreciated! > > , mom to , 6 months > > > > --------------------------------- > > Use Photomail to share photos without annoying attachments. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 11 months is definitely not too late to start treatment. My son started his second DOCband at 12 months, and after 2 months there is a definite improvement. It will just take longer to see improvement since their head growth is so slow at this age, but I figure even a little improvement is better than doing nothing! Just don't get discouraged along the way by all the babies who graduate after only 8- 10 weeks. Good luck! Sheila, mom to , 14 months, STARband 3/6-8/6, DOCband 9/6-? > > hi,everyone my son is 11 months old he has a very noticeable spot at > the back of his head,it has improve over time but it is very > visible ,is there anyone whose's chilld has received good result at > this stage through helmet therapy and it's great to know am not the > only one so worried about the shape of their little ones head > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 My son is 11 months and on his 3rd week of the DOC Band. I can let you know in about 10 more weeks how the band worked for him. I am seeing a bit of improvement. He has an appt. on Sat. I am looking forward to seeing his mold and comparing. He is doing GREAT wearing the band so that is what keeps us going. Good luck with your decision. -Ohio Mom of 11 months > > From: " f19_ali " <f19_ali@...> > Date: 2006/11/01 Wed PM 02:42:14 CST > Plagiocephaly > Subject: please help! > > hi,everyone my son is 11 months old he has a very noticeable spot at > the back of his head,it has improve over time but it is very > visible ,is there anyone whose's chilld has received good result at > this stage through helmet therapy and it's great to know am not the > only one so worried about the shape of their little ones head > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 One of my twins is 11 months and we are basically starting now also. We've been in possession of his helmet for 2+ months, first 3 weeks went great, then his forehead was all irritated, there was an appt mix up and he was out of it for 3 weeks. We were in the process of moving, add a few days for us slacking on the helmet wearing, then a 4-5 day teething fever, week in the helmet, now an ear infection. We'll put the helmet BACK on in 3-4 more days, depending on how he feels. I really hope our guy gets some improvement and our whole helmet situation gets better!! ________________________________________________________________________________\ ____ We have the perfect Group for you. Check out the handy changes to (http://) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 My daughter started her DOCband at 12 months with severe plagio. It has been 9 weeks now, and her measurements have gone from 25mm to 15mm cranial vault asymmetry and 15mm to 10mm ear asymmetry. We still have several weeks left in this band, and we will be getting a second one, but never did I imagine we would have gotten this much correction at all. I am thrilled. -Beth (Delaney, 14 months...DOCband 8-31-06) > > hi,everyone my son is 11 months old he has a very noticeable spot at > the back of his head,it has improve over time but it is very > visible ,is there anyone whose's chilld has received good result at > this stage through helmet therapy and it's great to know am not the > only one so worried about the shape of their little ones head > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 > > hi,everyone my son is 11 months old he has a very noticeable spot at > the back of his head,it has improve over time but it is very > visible ,is there anyone whose's chilld has received good result at > this stage through helmet therapy and it's great to know am not the > only one so worried about the shape of their little ones head > Hi! Best of luck in whatever you decide. My son got his helmet at 11 months and wore it for 8 months 23 hours a day. I think there may have been some minimal improvement but not much. It also involved weekly trips to the orthotist for adjustments. People out in public are rude! There was a lot of stareing and inappropriate questions. The hassles that came with the helmet would have all been worth it if it worked but in our case it didn't do much. Good Luck!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 hi nicole, im so sorry about your mom. i can't believe the rheummy is not able to determine the type of ra, that's kinda strange!! my fingers are also destroyed by the severity of my ra. sometimes i have to have help eating & other thing done for me due to the pain & fusion of my joints. it sux! i feel bad mostly every day & then when i do feel good i still need help! i've been sick with ra since age 5. they ran all kinds of tests on me blood work etc. my dr. here told my mom back then it was growing pains, to keep me in bed. GROWING PAINS MY A--!! it was not until my mom took me to houston,tx.. the dr. dx me right away. so yes i believe sometimes they can't figure it out but you have to keep on them!! i don't think it's hereditary because when i was pregnant with my daughter, i went through genetic testing & everything just to be sure. i was BLESSED WITH A HEALTHY BABY GIRL!! no one else in my family has it just me, so i don't know where i got it cuz i was born a healthy baby.. everyone ask how did u get ra & i tell them i don't know, i guess god choose me to bear this cross. so that's what i'm doing! about the pregnancy question, when i was pregnant with my daughter,alyssa i felt SO ALIVE & FULL OF ENERGY. however, after she was born my ra was in full force & i was in soooo much pain i had to start back up on all my meds. the prednisone HELPED the most!! hang in there nicole, you will have good & bad days, HOPEFULLY more GOOD days.... HOPE i could be of some help... god bless,melyndagamez 6/7/08 5:25p.m.central time [ ] Please help! My mom has unidentifiable arthritis. She has been seeing a reumatologist who says it is one of the most aggressive cases she has ever seen. It is completely destroying her joints. She has no joints left in her index fingers, they are entirely fused together. Doctor has ruled out RA but assumed it was autoimmune and has been using chemo-like IV drugs on her for over a year. Instead of getting better, it has gotten MUCH MUCH worse. Her doc says she only has 3 patients who are like my mom. She has recommended for my mom to get a second opinion, because she doesn't know if she is " missing " something. Now the doctor thinks it is inflammatory arthritis and is going to d/c the IVs soon, and start her on antibiotics contintuously. And maybe steroids. My mom doesn't want to take steroids, she will only take them as a last resort. IN the meantime her arthritis has gotten horrendous over the past two years. She went from having red nodules on her joints, to having no joints. Has anyone heard of a case like this, where doctors could not identify the type of arthritis, and treatment has not helped. Also, I am wondering if this is hereditary. Because I started having joint pains at 27, then I got pregnant after I turned 28 and the pains went away during the fourth month of pregnancy. Now my son is four months old, and I think I have full blown arthritis in my fingers and toes. Thanks, ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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