Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 This happens to my girls but only when they are running.........or upset.........hope someone else can help as I have heard this to be a common thing. My prayers are with you and your daughter........it's good that she is able to attend school my 11 year old with starting treatment has pretty much bed bed bound for the last six weeks....... ________________________________ From: pavone1 <pavone1@...> Sent: Tue, October 19, 2010 1:01:06 PM Subject: [ ] difficulty breathing?  My 10 year old daughter has recently begun treatment for Lyme disease. Today she was sent to the nurses office at school because she was having trouble breathing. The nurse said her lungs sound clear and couldn't find anything wrong so sent her back to class. This is the second time she has complained of this symptom. I was wondering if any of your children have ever complained of this happening to them. I'm not sure what to think of it, the first time it happened I was with her and it was unsettling. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 My 12 year old daughter has complained of a heavy chest. While I wouldn¹t classify it as a hard time breathing she says she now ³thinks² about breathing where it was always natural before???? Does your daughter take ³Bar-1²? It seemed to start when she started taking so we¹ve stopped. Cheryl On 10/19/10 11:01 AM, " pavone1 " <pavone1@...> wrote: > > > > > > My 10 year old daughter has recently begun treatment for Lyme disease. Today > she was sent to the nurses office at school because she was having trouble > breathing. The nurse said her lungs sound clear and couldn't find anything > wrong so sent her back to class. This is the second time she has complained of > this symptom. I was wondering if any of your children have ever complained of > this happening to them. I'm not sure what to think of it, the first time it > happened I was with her and it was unsettling. > Thank you > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Hi , This very same thing happens to my 10yo daughter and myself. Thankfully I had the symptoms before she had to deal with them. Before I knew I had Lyme I was sent to an asthma doctor and treated for asthma which exasperated my symptoms. She then sent me to a pulminologist and he told me I was just hyperventilating. Neither doctor was very helpful. Now that I know our lungs are ok I will use natural treatments to help with our symptoms, like essential oils of peppermint and eucalyptus to breathe in. Our difficulty breathing is usually accompanied with some level of anxiety or panic. Not sure if that causes it or is a result of feeling like we can't breathe. If it gets severe benadryl always helps out. I would never overlook breathing issues though. It never hurts to follow-up with her pediatrician or Lyme doctor. One thing I've told my daughter is to not focus on her inability to breathe but to either think of something else and focus on that or to get busy doing something. Usually she calms down within minutes. It's very scary. Hang in there. * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨) (¸.•´ (¸ ;. •´ Tricia ________________________________ From: pavone1 <pavone1@...> Sent: Tue, October 19, 2010 2:01:06 PM Subject: [ ] difficulty breathing? My 10 year old daughter has recently begun treatment for Lyme disease. Today she was sent to the nurses office at school because she was having trouble breathing. The nurse said her lungs sound clear and couldn't find anything wrong so sent her back to class. This is the second time she has complained of this symptom. I was wondering if any of your children have ever complained of this happening to them. I'm not sure what to think of it, the first time it happened I was with her and it was unsettling. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 trouble breathing is a common symptom of Lyme and Bartonella will leave them feeling " air hunger " so maybe that is part of it. I recently read that if they start having that trouble breathing from Bartonella, it can help if they get into what is called " Child's pose " in Yoga. The stretching of the chest from this exercise can sometimes make the chest stop constricting. It's not actually asthma, so that is why her chest sounds clear. It is spasming of the bronchiae. My daughter is back in school this year for 8th grade -- she was home schooled last year when she started treatment. It's a hard road but they do improve. Thinking of both of you - Natasha ________________________________ From: Diane Biel <dkbmama@...> Sent: Tue, October 19, 2010 11:15:36 AM Subject: Re: [ ] difficulty breathing? This happens to my girls but only when they are running.........or upset.........hope someone else can help as I have heard this to be a common thing. My prayers are with you and your daughter........it's good that she is able to attend school my 11 year old with starting treatment has pretty much bed bed bound for the last six weeks....... ________________________________ From: pavone1 <pavone1@...> Sent: Tue, October 19, 2010 1:01:06 PM Subject: [ ] difficulty breathing? My 10 year old daughter has recently begun treatment for Lyme disease. Today she was sent to the nurses office at school because she was having trouble breathing. The nurse said her lungs sound clear and couldn't find anything wrong so sent her back to class. This is the second time she has complained of this symptom. I was wondering if any of your children have ever complained of this happening to them. I'm not sure what to think of it, the first time it happened I was with her and it was unsettling. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Well that fits ~ my daughter was also diagnosed with Bartonella. Thanks for the tip about ³child¹s pose². Don¹t know what I¹d do without the support of everyone on this website. Thank you! Cheryl On 10/19/10 11:28 AM, " Natasha Moiseyev " <nmoiseyev@...> wrote: > > > > > > trouble breathing is a common symptom of Lyme and Bartonella will leave them > feeling " air hunger " so maybe that is part of it. > > I recently read that if they start having that trouble breathing from > Bartonella, it can help if they get into what is called " Child's pose " in > Yoga. > The stretching of the chest from this exercise can sometimes make the chest > stop > constricting. > > It's not actually asthma, so that is why her chest sounds clear. It is > spasming > of the bronchiae. > > My daughter is back in school this year for 8th grade -- she was home schooled > last year when she started treatment. It's a hard road but they do improve. > > Thinking of both of you - > > Natasha > > ________________________________ > From: Diane Biel <dkbmama@... <mailto:dkbmama%40> > > > <mailto: %40> > Sent: Tue, October 19, 2010 11:15:36 AM > Subject: Re: [ ] difficulty breathing? > > This happens to my girls but only when they are running.........or > upset.........hope someone else can help as I have heard this to be a common > thing. My prayers are with you and your daughter........it's good that she is > able to attend school my 11 year old with starting treatment has pretty much > bed > > bed bound for the last six weeks....... > > ________________________________ > From: pavone1 <pavone1@... <mailto:pavone1%40> > > > <mailto: %40> > Sent: Tue, October 19, 2010 1:01:06 PM > Subject: [ ] difficulty breathing? > > My 10 year old daughter has recently begun treatment for Lyme disease. Today > she > > was sent to the nurses office at school because she was having trouble > breathing. The nurse said her lungs sound clear and couldn't find anything > wrong > > so sent her back to class. This is the second time she has complained of this > symptom. I was wondering if any of your children have ever complained of this > happening to them. I'm not sure what to think of it, the first time it > happened > I was with her and it was unsettling. > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 from what my llmd told me the air hunger is a classic symptom of babesia. bart is usually the migraines, crazy thoughts. On Tue, Oct 19, 2010 at 11:28 AM, Natasha Moiseyev <nmoiseyev@...>wrote: > > > trouble breathing is a common symptom of Lyme and Bartonella will leave > them > feeling " air hunger " so maybe that is part of it. > > I recently read that if they start having that trouble breathing from > Bartonella, it can help if they get into what is called " Child's pose " in > Yoga. > The stretching of the chest from this exercise can sometimes make the chest > stop > constricting. > > It's not actually asthma, so that is why her chest sounds clear. It is > spasming > of the bronchiae. > > My daughter is back in school this year for 8th grade -- she was home > schooled > last year when she started treatment. It's a hard road but they do improve. > > Thinking of both of you - > > Natasha > > ________________________________ > From: Diane Biel <dkbmama@... <dkbmama%40>> > > < %40> > Sent: Tue, October 19, 2010 11:15:36 AM > Subject: Re: [ ] difficulty breathing? > > > This happens to my girls but only when they are running.........or > upset.........hope someone else can help as I have heard this to be a > common > thing. My prayers are with you and your daughter........it's good that she > is > able to attend school my 11 year old with starting treatment has pretty > much bed > > bed bound for the last six weeks....... > > ________________________________ > From: pavone1 <pavone1@... <pavone1%40>> > < %40> > Sent: Tue, October 19, 2010 1:01:06 PM > Subject: [ ] difficulty breathing? > > My 10 year old daughter has recently begun treatment for Lyme disease. > Today she > > was sent to the nurses office at school because she was having trouble > breathing. The nurse said her lungs sound clear and couldn't find anything > wrong > > so sent her back to class. This is the second time she has complained of > this > symptom. I was wondering if any of your children have ever complained of > this > happening to them. I'm not sure what to think of it, the first time it > happened > I was with her and it was unsettling. > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 oh, right. of course. see, Lyme affects the brain and word selection, lol. Babesia does give air hunger and it is no joke. But the yoga thing is supposed to work. ________________________________ From: le Handy <kndplus2@...> Sent: Tue, October 19, 2010 5:00:51 PM Subject: Re: [ ] difficulty breathing? from what my llmd told me the air hunger is a classic symptom of babesia. bart is usually the migraines, crazy thoughts. On Tue, Oct 19, 2010 at 11:28 AM, Natasha Moiseyev <nmoiseyev@...>wrote: > > > trouble breathing is a common symptom of Lyme and Bartonella will leave > them > feeling " air hunger " so maybe that is part of it. > > I recently read that if they start having that trouble breathing from > Bartonella, it can help if they get into what is called " Child's pose " in > Yoga. > The stretching of the chest from this exercise can sometimes make the chest > stop > constricting. > > It's not actually asthma, so that is why her chest sounds clear. It is > spasming > of the bronchiae. > > My daughter is back in school this year for 8th grade -- she was home > schooled > last year when she started treatment. It's a hard road but they do improve. > > Thinking of both of you - > > Natasha > > ________________________________ > From: Diane Biel <dkbmama@... <dkbmama%40>> > > < %40> > Sent: Tue, October 19, 2010 11:15:36 AM > Subject: Re: [ ] difficulty breathing? > > > This happens to my girls but only when they are running.........or > upset.........hope someone else can help as I have heard this to be a > common > thing. My prayers are with you and your daughter........it's good that she > is > able to attend school my 11 year old with starting treatment has pretty > much bed > > bed bound for the last six weeks....... > > ________________________________ > From: pavone1 <pavone1@... <pavone1%40>> > < %40> > Sent: Tue, October 19, 2010 1:01:06 PM > Subject: [ ] difficulty breathing? > > My 10 year old daughter has recently begun treatment for Lyme disease. > Today she > > was sent to the nurses office at school because she was having trouble > breathing. The nurse said her lungs sound clear and couldn't find anything > wrong > > so sent her back to class. This is the second time she has complained of > this > symptom. I was wondering if any of your children have ever complained of > this > happening to them. I'm not sure what to think of it, the first time it > happened > I was with her and it was unsettling. > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Thank you everyone. I & #39;m so sorry you have all had to deal with difficulty breathing as well, but I am very grateful for the advice and encouragement. My daughter is not on " Bar -1 " , she is taking azythromycin and teasel root. Over all she is handling treatment well so far. Some strange symptoms now, but nothing like my sons experience. He too was on homebound tutoring for most of the year last year and is now back to school full time. I will look into the essential oils and google that yoga pose. I do think there is some sort of anxiety involved for her as well, but I don & #39;t think that & #39;s what brings it on, although she has not been herself since starting treatment. Her tests for confections were pretty inconclusive so I don & #39;t know what is going on for sure, but her Dr. did say that he chose to start her on azythromycin because it works well for them so maybe he suspects something.We see him again in two weeks and I am anxious to see what he has to say about it. I hate all the uncertainties of this experience. Thank you all again it means a lot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 My son has that, its called exercise induced asthma. He takes albuterol inhaler or nebulizer treatment for it. From: Diane Biel <dkbmama@...> Subject: Re: [ ] difficulty breathing? Date: Tuesday, October 19, 2010, 2:15 PM This happens to my girls but only when they are running.........or upset.........hope someone else can help as I have heard this to be a common thing. My prayers are with you and your daughter........it's good that she is able to attend school my 11 year old with starting treatment has pretty much bed bed bound for the last six weeks....... ________________________________ From: pavone1 <pavone1@...> Sent: Tue, October 19, 2010 1:01:06 PM Subject: [ ] difficulty breathing? My 10 year old daughter has recently begun treatment for Lyme disease. Today she was sent to the nurses office at school because she was having trouble breathing. The nurse said her lungs sound clear and couldn't find anything wrong so sent her back to class. This is the second time she has complained of this symptom. I was wondering if any of your children have ever complained of this happening to them. I'm not sure what to think of it, the first time it happened I was with her and it was unsettling. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 How do they test for that ?? Thanks - the allergist thinks they are making it up.....grrrrr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 allergist is an ass. The symptoms of these different coinfections are well documented. If a child has Lyme, it is ridiculous to assume that the kid is making it up instead of experiencing very typical coinfections. Interesting that the first line of defense for the ignorant is to ignore symptoms and claim they don't exist. If only. But to answer your question, coinfections can be tested like Lyme is tested. Though my daughter was rampant with Bartonella streaks and all the symptoms and came back negative, so it's not perfect-- no lab tests for all the strains of Bartonella, and I think the same problem might exist with Babesia. Interesting what you said about the allergist though, When my older daughter was a baby, I kept insisting there was something off about her breathing, and she would cough every night, all night,. They said I was just an anxious new mother. She has congenital Lyme, we found out when she was 12. Still coughs at night. Anxious mom? Yes, but with good reason!!! Keep the faith -- Natasha ________________________________ From: Diane Biel <dkbmama@...> Sent: Tue, October 19, 2010 9:21:08 PM Subject: Re: [ ] difficulty breathing? How do they test for that ?? Thanks - the allergist thinks they are making it up.....grrrrr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Ladies: I read about your children and breathing difficulties and I have to say that is one area of the body that Lyme has stayed clear of with Nate my 15 year old. When I read Natasha's post about her infant daughter, I was immediately transported back in time to the exact thing. I knew in my gut and heart that Nate was not breathing right. No one else heard it or worried about it. I would lose sleep thinking I am solely responsible for his life since no one was hearing his change in breathing. Maybe it was related to his lungs. Then 3 months later he was weezing and had pneumonia. Hmmm. This morning I phone conference with Nate's intervention specialist because even online part time school is not working out for him. I think she is going to add alternative assessment to his IEP. Not sure how I feel about it. My 42 year old sister just tested positive for Lyme and now her 3 year old will have to be tested. We think we got bit the same summer in Wisconsin 30 years ago when the ticks were so bad on the farm. I may be coming back to the group to see if anyone has experience with treating their toddlers for Lyme. She may even join for the support. Florida does not have a lot of Lyme. Wishing you all healthy children, Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 One more idea is that the medicines could be causing reflux. GERD-related asthma can be controlled with Zantac. > > My 10 year old daughter has recently begun treatment for Lyme disease. Today she was sent to the nurses office at school because she was having trouble breathing. The nurse said her lungs sound clear and couldn't find anything wrong so sent her back to class. This is the second time she has complained of this symptom. I was wondering if any of your children have ever complained of this happening to them. I'm not sure what to think of it, the first time it happened I was with her and it was unsettling. > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 I am so sorry about your sister. It it astonishing how widespread this disease is. On this end, Sasha has been in school, albeit in a lot of pain, and the nurse told her again that she does not think she can legally allow Sasha to come into the office during PE without a new doctor's note -- the last one in the file is from April. This is obviously coming down directly from the district nurse, who arrived yesterday (again) at my friend's house and said " I talked to your doctor. I think you'll find he's had a change of heart and won't be signing Jo off for homeschooling this year, so don't expect the tutor to show up here. " What?????? Total lie, the woman knows no shame. I am sure she is behind the harassment of Sasha too. Given a choice between not going to school at all and not going to PE, why would they apparently rather she not show up at all? As my husb says, there are schools in Maine, Connecticut, NH where many kids are out with this, and they manage to deal with it. Plus I just found out that a woman I know who has a child with various learning difficulties has received from the district a FULL TIME AIDE in the classroom who is a teacher who was laid off from the neighboring school district. And here my kid had a tutor finally assigned last December who came exactly twice and was completely useless. It's ridiculous. Meanwhile, Maya also goes to school every day, though in huge amounts of pain, and is likewise told she has to participate in PE. I hate this disease and I hate the school district, and I am so busy trying to survive that I don't have time ot take them on properly. Thanks for letting me vent. I know it has nothing to do with breathing, but I am so tired of people who are legally required to help us simply turning a deaf ear. Should a child suffering from a combination of rheumatoid arthritis and fibromyalgia REALLY be required to play flag football? Off to a new day. I accidentally double booked two clients but I sure am glad I have some work ... Hang in there everyone. At least we have each other and that keeps me going during weeks like this one. Natasha ________________________________ From: endomr <ktdommer@...> Sent: Wed, October 20, 2010 4:33:55 AM Subject: [ ] Re: difficulty breathing? Ladies: I read about your children and breathing difficulties and I have to say that is one area of the body that Lyme has stayed clear of with Nate my 15 year old. When I read Natasha's post about her infant daughter, I was immediately transported back in time to the exact thing. I knew in my gut and heart that Nate was not breathing right. No one else heard it or worried about it. I would lose sleep thinking I am solely responsible for his life since no one was hearing his change in breathing. Maybe it was related to his lungs. Then 3 months later he was weezing and had pneumonia. Hmmm. This morning I phone conference with Nate's intervention specialist because even online part time school is not working out for him. I think she is going to add alternative assessment to his IEP. Not sure how I feel about it. My 42 year old sister just tested positive for Lyme and now her 3 year old will have to be tested. We think we got bit the same summer in Wisconsin 30 years ago when the ticks were so bad on the farm. I may be coming back to the group to see if anyone has experience with treating their toddlers for Lyme. She may even join for the support. Florida does not have a lot of Lyme. Wishing you all healthy children, Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Natasha, When my daughter was diagnosed and had her PICC line inserted, her gym class was doing an archery unit. I had her LLMD fax a note to her school so she wouldn't have to do gym. Pulling back on a bow with her right arm, the PICC line arm, was contraindicated. Our school district provides " sportfolios " for students to do for their gym grade when they cannot participate. It is sport-related reading material with some questions at the end. The sportfolios are rather lame, but they provide a way for the school to give the student a grade. Doesn't your school have something like this? There must be other students who are unable to do gym who don't have Lyme. What does the school do to accommodate them? If you have a note from the doctor, the district nurse cannot challenge it. Good luck! Let us know how it goes. We are rooting for you and your girls. You are in my thoughts. batikquilt ________________________________ From: Natasha Moiseyev <nmoiseyev@...> Sent: Wed, October 20, 2010 8:04:03 AM Subject: Re: [ ] Re: difficulty breathing? I am so sorry about your sister. It it astonishing how widespread this disease is. On this end, Sasha has been in school, albeit in a lot of pain, and the nurse told her again that she does not think she can legally allow Sasha to come into the office during PE without a new doctor's note -- the last one in the file is from April. This is obviously coming down directly from the district nurse, who arrived yesterday (again) at my friend's house and said " I talked to your doctor. I think you'll find he's had a change of heart and won't be signing Jo off for homeschooling this year, so don't expect the tutor to show up here. " What?????? Total lie, the woman knows no shame. I am sure she is behind the harassment of Sasha too. Given a choice between not going to school at all and not going to PE, why would they apparently rather she not show up at all? As my husb says, there are schools in Maine, Connecticut, NH where many kids are out with this, and they manage to deal with it. Plus I just found out that a woman I know who has a child with various learning difficulties has received from the district a FULL TIME AIDE in the classroom who is a teacher who was laid off from the neighboring school district. And here my kid had a tutor finally assigned last December who came exactly twice and was completely useless. It's ridiculous. Meanwhile, Maya also goes to school every day, though in huge amounts of pain, and is likewise told she has to participate in PE. I hate this disease and I hate the school district, and I am so busy trying to survive that I don't have time ot take them on properly. Thanks for letting me vent. I know it has nothing to do with breathing, but I am so tired of people who are legally required to help us simply turning a deaf ear. Should a child suffering from a combination of rheumatoid arthritis and fibromyalgia REALLY be required to play flag football? Off to a new day. I accidentally double booked two clients but I sure am glad I have some work ... Hang in there everyone. At least we have each other and that keeps me going during weeks like this one. Natasha ________________________________ From: endomr <ktdommer@...> Sent: Wed, October 20, 2010 4:33:55 AM Subject: [ ] Re: difficulty breathing? Ladies: I read about your children and breathing difficulties and I have to say that is one area of the body that Lyme has stayed clear of with Nate my 15 year old. When I read Natasha's post about her infant daughter, I was immediately transported back in time to the exact thing. I knew in my gut and heart that Nate was not breathing right. No one else heard it or worried about it. I would lose sleep thinking I am solely responsible for his life since no one was hearing his change in breathing. Maybe it was related to his lungs. Then 3 months later he was weezing and had pneumonia. Hmmm. This morning I phone conference with Nate's intervention specialist because even online part time school is not working out for him. I think she is going to add alternative assessment to his IEP. Not sure how I feel about it. My 42 year old sister just tested positive for Lyme and now her 3 year old will have to be tested. We think we got bit the same summer in Wisconsin 30 years ago when the ticks were so bad on the farm. I may be coming back to the group to see if anyone has experience with treating their toddlers for Lyme. She may even join for the support. Florida does not have a lot of Lyme. Wishing you all healthy children, Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 thanks -- I agree with all you said. This district nurse is completely rogue. What she does regularly is illegal. I am about to go and complain to the district (again). We actually want nothing but to have the kids in school and even not getting a PE grade if necessary -- really, so what? They are supposed ot run a mile regularly throughout the year and last year my daughter got an F because she couldn't run and was the slowest one in the group -- duh. I hate having to deal with all this. I know the rights but we are trying so hard just to survive at this point with four four four lyme-infected, it's hard to challenge and I tend to take the path of least resistance. That said, I wrote this morning (again) to the counselor and said I wanted him to clarify AGAIN to the relevant people in the school that we have a note on file and they can sit out PE. What. the.heck. Thanks for hte support. Natasha ________________________________ From: Kaethe <batikquilt@...> Sent: Wed, October 20, 2010 6:47:32 AM Subject: Re: [ ] Re: difficulty breathing? Natasha, When my daughter was diagnosed and had her PICC line inserted, her gym class was doing an archery unit. I had her LLMD fax a note to her school so she wouldn't have to do gym. Pulling back on a bow with her right arm, the PICC line arm, was contraindicated. Our school district provides " sportfolios " for students to do for their gym grade when they cannot participate. It is sport-related reading material with some questions at the end. The sportfolios are rather lame, but they provide a way for the school to give the student a grade. Doesn't your school have something like this? There must be other students who are unable to do gym who don't have Lyme. What does the school do to accommodate them? If you have a note from the doctor, the district nurse cannot challenge it. Good luck! Let us know how it goes. We are rooting for you and your girls. You are in my thoughts. batikquilt ________________________________ From: Natasha Moiseyev <nmoiseyev@...> Sent: Wed, October 20, 2010 8:04:03 AM Subject: Re: [ ] Re: difficulty breathing? I am so sorry about your sister. It it astonishing how widespread this disease is. On this end, Sasha has been in school, albeit in a lot of pain, and the nurse told her again that she does not think she can legally allow Sasha to come into the office during PE without a new doctor's note -- the last one in the file is from April. This is obviously coming down directly from the district nurse, who arrived yesterday (again) at my friend's house and said " I talked to your doctor. I think you'll find he's had a change of heart and won't be signing Jo off for homeschooling this year, so don't expect the tutor to show up here. " What?????? Total lie, the woman knows no shame. I am sure she is behind the harassment of Sasha too. Given a choice between not going to school at all and not going to PE, why would they apparently rather she not show up at all? As my husb says, there are schools in Maine, Connecticut, NH where many kids are out with this, and they manage to deal with it. Plus I just found out that a woman I know who has a child with various learning difficulties has received from the district a FULL TIME AIDE in the classroom who is a teacher who was laid off from the neighboring school district. And here my kid had a tutor finally assigned last December who came exactly twice and was completely useless. It's ridiculous. Meanwhile, Maya also goes to school every day, though in huge amounts of pain, and is likewise told she has to participate in PE. I hate this disease and I hate the school district, and I am so busy trying to survive that I don't have time ot take them on properly. Thanks for letting me vent. I know it has nothing to do with breathing, but I am so tired of people who are legally required to help us simply turning a deaf ear. Should a child suffering from a combination of rheumatoid arthritis and fibromyalgia REALLY be required to play flag football? Off to a new day. I accidentally double booked two clients but I sure am glad I have some work ... Hang in there everyone. At least we have each other and that keeps me going during weeks like this one. Natasha ________________________________ From: endomr <ktdommer@...> Sent: Wed, October 20, 2010 4:33:55 AM Subject: [ ] Re: difficulty breathing? Ladies: I read about your children and breathing difficulties and I have to say that is one area of the body that Lyme has stayed clear of with Nate my 15 year old. When I read Natasha's post about her infant daughter, I was immediately transported back in time to the exact thing. I knew in my gut and heart that Nate was not breathing right. No one else heard it or worried about it. I would lose sleep thinking I am solely responsible for his life since no one was hearing his change in breathing. Maybe it was related to his lungs. Then 3 months later he was weezing and had pneumonia. Hmmm. This morning I phone conference with Nate's intervention specialist because even online part time school is not working out for him. I think she is going to add alternative assessment to his IEP. Not sure how I feel about it. My 42 year old sister just tested positive for Lyme and now her 3 year old will have to be tested. We think we got bit the same summer in Wisconsin 30 years ago when the ticks were so bad on the farm. I may be coming back to the group to see if anyone has experience with treating their toddlers for Lyme. She may even join for the support. Florida does not have a lot of Lyme. Wishing you all healthy children, Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Hi Natasha, Where do you live? Sorry to hear about your problems with the schools. Isn't your doctor willing to to sign a note for your daughter? Our daughters Doctor wrote up an extensive plan for her for her limitations in school and we We did a 504 plan in the 9th grade. She has not had to take gym. When she is fatigued or in pain she stays home and the teachers e-mail her work. They were Willing to do tutors but her dad helped her when she needed it. Last Flu season she was out from Nov to January. We live in Maine and have been lucky to have had our schools support. How old is your daughter..poor baby.I know how awful it can get when my daughter is in pain its awful that she has to do something that causes more pain. My daughter is 17 and graduates this year. The next hurdle will be college. She is looking for Colleges close to home in case she needs us. Kids shouldn't have to fear leaving home because of their health they should just be able to have fun being young and carefree! Wishing you a Great Weekend ) Elaina _____ From: [mailto: ] On Behalf Of Natasha Moiseyev Sent: Wednesday, October 20, 2010 8:04 AM Subject: Re: [ ] Re: difficulty breathing? I am so sorry about your sister. It it astonishing how widespread this disease is. On this end, Sasha has been in school, albeit in a lot of pain, and the nurse told her again that she does not think she can legally allow Sasha to come into the office during PE without a new doctor's note -- the last one in the file is from April. This is obviously coming down directly from the district nurse, who arrived yesterday (again) at my friend's house and said " I talked to your doctor. I think you'll find he's had a change of heart and won't be signing Jo off for homeschooling this year, so don't expect the tutor to show up here. " What?????? Total lie, the woman knows no shame. I am sure she is behind the harassment of Sasha too. Given a choice between not going to school at all and not going to PE, why would they apparently rather she not show up at all? As my husb says, there are schools in Maine, Connecticut, NH where many kids are out with this, and they manage to deal with it. Plus I just found out that a woman I know who has a child with various learning difficulties has received from the district a FULL TIME AIDE in the classroom who is a teacher who was laid off from the neighboring school district. And here my kid had a tutor finally assigned last December who came exactly twice and was completely useless. It's ridiculous. Meanwhile, Maya also goes to school every day, though in huge amounts of pain, and is likewise told she has to participate in PE. I hate this disease and I hate the school district, and I am so busy trying to survive that I don't have time ot take them on properly. Thanks for letting me vent. I know it has nothing to do with breathing, but I am so tired of people who are legally required to help us simply turning a deaf ear. Should a child suffering from a combination of rheumatoid arthritis and fibromyalgia REALLY be required to play flag football? Off to a new day. I accidentally double booked two clients but I sure am glad I have some work ... Hang in there everyone. At least we have each other and that keeps me going during weeks like this one. Natasha ________________________________ From: endomr <ktdommer@... <mailto:ktdommer%40> > <mailto: %40> Sent: Wed, October 20, 2010 4:33:55 AM Subject: [ ] Re: difficulty breathing? Ladies: I read about your children and breathing difficulties and I have to say that is one area of the body that Lyme has stayed clear of with Nate my 15 year old. When I read Natasha's post about her infant daughter, I was immediately transported back in time to the exact thing. I knew in my gut and heart that Nate was not breathing right. No one else heard it or worried about it. I would lose sleep thinking I am solely responsible for his life since no one was hearing his change in breathing. Maybe it was related to his lungs. Then 3 months later he was weezing and had pneumonia. Hmmm. This morning I phone conference with Nate's intervention specialist because even online part time school is not working out for him. I think she is going to add alternative assessment to his IEP. Not sure how I feel about it. My 42 year old sister just tested positive for Lyme and now her 3 year old will have to be tested. We think we got bit the same summer in Wisconsin 30 years ago when the ticks were so bad on the farm. I may be coming back to the group to see if anyone has experience with treating their toddlers for Lyme. She may even join for the support. Florida does not have a lot of Lyme. Wishing you all healthy children, Kari Quote Link to comment Share on other sites More sharing options...
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