Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Get used to the sleeping stuff! It happened with my two kids when they were on and off antibiotics. Seemed like my daughter slept an entire two years away. **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Thanks for the reply - how did you deal with school? Good to know that this is " normal " for lyme kids - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Diane, I am sorry to hear about your daughter. I have two girls ages 15 and 16 and we have just been diagnosed and just started antibiotics and supplements and they are having alot of symptoms that are stronger than before or are totally new. They had both previously been diagnosed with POTS and Chronic Fatigue so the fatigue was expected, but it is worse. Also their energy level is gone. If they do try to do something on a good day it is a guarantee that they will suffer and need to be in bed for the next couple of days. We have had a terrible time with school (private) and as of today they are both not in school. If you have not already done so, please make sure you get with your school as soon as possible before too much time goes by . We thought our private school was working with us and by the time we found out it was bad. For one daughter the stress has been so bad that she is done with school, she started pulling out her hair. By the time the second child started suffering I knew that we had to figure out just what was going on. Thats how we were diagnosed with Lyme. She is hopefully going to start homebound with our local public school, but it has been since the second week of this school year and we still do not have a program and she is already stressing about the missed work.I have been told, and am hoping that what I have heard is correct and that these exagerated symptoms are the antibiotics working. Good Luck , -- - In , " dkbmama " <dkbmama@...> wrote: > > My daughter started treatment for lyme - the first antibiotic inflamed > her IBS so we had to stop treatment - now we started on a different > antibiotic about 2 1/2 weeks ago and she is only up and moving around > for about three days a week - she will sleep with headaches and cold > and hot feelings and body aches for about two to three days straight > (only up about one hour a day) and then have a good enought day she can > go to school and then sleep again for two to three days - has this ever > happened to any of your kids? Wondering how long this will go on - I > am thinking that her body is healing that is why she is sleeping so > much - any insight would be helpfull - by the way she has had lyme > since birth and also has JRA and IBS - as I now know this is all lyme > Thanks!!! > your lymie friend Diane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hi Diane, Sorry I am so late getting to my emails. My daughter was diagnosed with Lymes this summer and thankfully has not had any further problems since being on antibiotics. I am disabled though due to a rare bone disease that affected my skull and had multiple brain surgeries and have nearly died due to a brain stem herniation. After my surgery for the brain stem herniation I would go though these cycles we called " crashing " where I would literally sleep for two to three days at a time. I couldn't stay awake even if I wanted to. I was a Neurosurgical nurse prior to becoming disabled so I was concerned when I couldn't stay awake so I called my neurosurgeon and he told me that I was having these sleeping episodes because my body had so much healing to do. It was a bit scary at times but they gradually lessened. I am not saying that this is what is going on with your daughter. First and foremost call her doctor and speak to him and let him know exactly what is going on. He needs to know. It isn't uncommon though for people to sleep a lot when their body has a lot of healing to do. Just make sure to make her drink when she is awake so she doesn't get dehydrated. First though call her doctor to make sure that nothing else is going on with her. I really hope she is ok and is feeling better soon. Hang in there, [ ] started antibiotic/herx? 13 year old girl My daughter started treatment for lyme - the first antibiotic inflamed her IBS so we had to stop treatment - now we started on a different antibiotic about 2 1/2 weeks ago and she is only up and moving around for about three days a week - she will sleep with headaches and cold and hot feelings and body aches for about two to three days straight (only up about one hour a day) and then have a good enought day she can go to school and then sleep again for two to three days - has this ever happened to any of your kids? Wondering how long this will go on - I am thinking that her body is healing that is why she is sleeping so much - any insight would be helpfull - by the way she has had lyme since birth and also has JRA and IBS - as I now know this is all lyme Thanks!!! your lymie friend Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Diane, The fatigue is really just a symptom. My daughters were both first diagnosed with POTS and CFS. It did'nt matter that they have now been diagnosed with Lyme. The fatigue is real and when they use their good days to do stuff, its does set them back and the fatigue hits again. You mentioned school, so I hope you are all over that. School has been our biggest stresses. These kids are not lazy or dumb, and when all these symptoms start hitting it is really difficult to convince the schools that it is not the case. Make sure you contact whoever you think needs to know about her condition, and please, do not let them forget it. Keep telling them until you are sure they understand. We assumed everyone was on board with us and it all fell apart. If you need to, make a plan with them in case she can not continue on the normal school path. You would be surprised at how schools are not proactive at all when it comes to sick children. They will not guide you the way you think they will, even if it looks like they are. Believe me, you daughter can suffer greatly if school falls apart and there is no plan. I have experienced first hand the psychological affects stress can have on children. Good Luck and stay strong, --- In , Rutan <ABUSHRN@...> wrote: > > Hi Diane, > Sorry I am so late getting to my emails. My daughter was diagnosed with Lymes this summer and thankfully has not had any further problems since being on antibiotics. I am disabled though due to a rare bone disease that affected my skull and had multiple brain surgeries and have nearly died due to a brain stem herniation. After my surgery for the brain stem herniation I would go though these cycles we called " crashing " where I would literally sleep for two to three days at a time. I couldn't stay awake even if I wanted to. I was a Neurosurgical nurse prior to becoming disabled so I was concerned when I couldn't stay awake so I called my neurosurgeon and he told me that I was having these sleeping episodes because my body had so much healing to do. It was a bit scary at times but they gradually lessened. > I am not saying that this is what is going on with your daughter. First and foremost call her doctor and speak to him and let him know exactly what is going on. He needs to know. It isn't uncommon though for people to sleep a lot when their body has a lot of healing to do. Just make sure to make her drink when she is awake so she doesn't get dehydrated. First though call her doctor to make sure that nothing else is going on with her. > I really hope she is ok and is feeling better soon. > Hang in there, > > [ ] started antibiotic/herx? 13 year old girl > > > My daughter started treatment for lyme - the first antibiotic inflamed > her IBS so we had to stop treatment - now we started on a different > antibiotic about 2 1/2 weeks ago and she is only up and moving around > for about three days a week - she will sleep with headaches and cold > and hot feelings and body aches for about two to three days straight > (only up about one hour a day) and then have a good enought day she can > go to school and then sleep again for two to three days - has this ever > happened to any of your kids? Wondering how long this will go on - I > am thinking that her body is healing that is why she is sleeping so > much - any insight would be helpfull - by the way she has had lyme > since birth and also has JRA and IBS - as I now know this is all lyme > Thanks!!! > your lymie friend Diane > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Diane, Me again. I forgot to say that from a number of mothers that I have talked to alot of these symptoms may have only started because she hit puberty, and has Lyme. Also, I was told and again saw first hand that when the antibiotics are working all of your previous symptoms get worse, and you can also start having new symptoms (herxing). Its a mess! My rule these days is that if they are experiencing any of the Lyme symptoms that you can find on the www.LymePa.org web site, I am okay with it for now. If they lose consciousness, or start to show paralysis I will move real fast, but all the others seem to be the norm. I am assuming you see a LLMD quite frequently, and what I mean is that I would make a list of all her symptoms to talk to the doctor about, but would not be surprised when she has some of the symptons on the list I mentioned. Again, if you are concerned, call your doctor. > > Hi Diane, > Sorry I am so late getting to my emails. My daughter was diagnosed with Lymes this summer and thankfully has not had any further problems since being on antibiotics. I am disabled though due to a rare bone disease that affected my skull and had multiple brain surgeries and have nearly died due to a brain stem herniation. After my surgery for the brain stem herniation I would go though these cycles we called " crashing " where I would literally sleep for two to three days at a time. I couldn't stay awake even if I wanted to. I was a Neurosurgical nurse prior to becoming disabled so I was concerned when I couldn't stay awake so I called my neurosurgeon and he told me that I was having these sleeping episodes because my body had so much healing to do. It was a bit scary at times but they gradually lessened. > I am not saying that this is what is going on with your daughter. First and foremost call her doctor and speak to him and let him know exactly what is going on. He needs to know. It isn't uncommon though for people to sleep a lot when their body has a lot of healing to do. Just make sure to make her drink when she is awake so she doesn't get dehydrated. First though call her doctor to make sure that nothing else is going on with her. > I really hope she is ok and is feeling better soon. > Hang in there, > > [ ] started antibiotic/herx? 13 year old girl > > > My daughter started treatment for lyme - the first antibiotic inflamed > her IBS so we had to stop treatment - now we started on a different > antibiotic about 2 1/2 weeks ago and she is only up and moving around > for about three days a week - she will sleep with headaches and cold > and hot feelings and body aches for about two to three days straight > (only up about one hour a day) and then have a good enought day she can > go to school and then sleep again for two to three days - has this ever > happened to any of your kids? Wondering how long this will go on - I > am thinking that her body is healing that is why she is sleeping so > much - any insight would be helpfull - by the way she has had lyme > since birth and also has JRA and IBS - as I now know this is all lyme > Thanks!!! > your lymie friend Diane > > > > > > > Quote Link to comment Share on other sites More sharing options...
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