Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Nikki - Bless you and bless your girls!! Thanks so much for the update.......you are all in my prayers!! How are you doing with treatment? Bless you all so very much!! Diane WI, USA......gave LD to my three girls..... ________________________________ From: Nikki <ncoleman@...> Sent: Sun, February 20, 2011 4:42:19 PM Subject: [ ] an update on my girls  Hi I thought I'd give you a quick update on my girls. J (who has moderate/mild LD) is doing really well on the Byron White formula's - she's still sleeping a lot, and is only at school part time, but her thryoid issues seem to be getting better - now we just have to hope her joint problems improve!! H (who was completely paralysed last October - unable to hold her head up, unable to move her arms, legs or torso, unable to swallow & was having trouble breathing), has improved enough to do 1 subject at school (ceramics) with some modifications (she's still in her wheelchair & can't use her arms a lot). She is at school 1 hour a day, 3 days a week ( & spends the rest of the time recovering). We have had to fight HARD to get her IV Rocephin here in Australia, but her wonderful Dr (who isn't an LLMD, or has even treated anyone with LD before) has agreed to follow the guidance of H's LLMD in Hyde Park, NY, USA ( Dr H), & she has been improving dramatically on that (she's up to 4 months on Rocephin). What has really turned her around though has been the combination of the Rocephin & the Byron White Formula's (along with lots of other abx, meds & supplements). I know it doesn't work for everyone, but for her it seems to be working really well. It is so exciting to see H able to walk, talk, swallow, use her arms, & even sing. She has a long long way to go - she's having physiotherapy every day, & starts brain rehab soon (with neuro eeg feedback) to treat the damage done by the LD to her brain, but it is great that she is able to start doing these things. She still spends most of her time in bed or on the lounge, but now we can see that she is improving, rather than having to sit in shifts to watch her breathing as she sleeps to make sure she makes it through the night (at her worst we took the very unpopular decision to not put her into our local hospital, as at the time they had a golden-staph infection problem, & we knew if she got that she would die very quickly). So.... for those that are struggling with years and years of health issues (H has had LD for 16 1/2 years - she got it from me before she was born - but has only been having treatment for 1 1/2 years) there is hope. It is a loooong slow recovery for some of these kids, and they will probably always have LD & have to be careful, but there is hope that they can move from the darkened bedroom to eventually having a more fulfilling life. Anyway, that is my 2 cents worth for today. I'm sitting in Mcs having an hour off looking after her whilst she is at school & wanted to share my joy with you all. 1 hour isn't much, but is more than I've had in 18 months, so it is something to be celebrated!!! Take Care Nikki (in Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Nikki,I'm so happy for you and your girls! Thank you for sharing your good news.God Bless!- mother of two w/LD From: Diane Biel <dkbmama@...> Subject: Re: [ ] an update on my girls Date: Sunday, February 20, 2011, 8:38 PM  Nikki - Bless you and bless your girls!! Thanks so much for the update.......you are all in my prayers!! How are you doing with treatment? Bless you all so very much!! Diane WI, USA......gave LD to my three girls..... ________________________________ From: Nikki <ncoleman@...> Sent: Sun, February 20, 2011 4:42:19 PM Subject: [ ] an update on my girls  Hi I thought I'd give you a quick update on my girls. J (who has moderate/mild LD) is doing really well on the Byron White formula's - she's still sleeping a lot, and is only at school part time, but her thryoid issues seem to be getting better - now we just have to hope her joint problems improve!! H (who was completely paralysed last October - unable to hold her head up, unable to move her arms, legs or torso, unable to swallow & was having trouble breathing), has improved enough to do 1 subject at school (ceramics) with some modifications (she's still in her wheelchair & can't use her arms a lot). She is at school 1 hour a day, 3 days a week ( & spends the rest of the time recovering). We have had to fight HARD to get her IV Rocephin here in Australia, but her wonderful Dr (who isn't an LLMD, or has even treated anyone with LD before) has agreed to follow the guidance of H's LLMD in Hyde Park, NY, USA ( Dr H), & she has been improving dramatically on that (she's up to 4 months on Rocephin). What has really turned her around though has been the combination of the Rocephin & the Byron White Formula's (along with lots of other abx, meds & supplements). I know it doesn't work for everyone, but for her it seems to be working really well. It is so exciting to see H able to walk, talk, swallow, use her arms, & even sing. She has a long long way to go - she's having physiotherapy every day, & starts brain rehab soon (with neuro eeg feedback) to treat the damage done by the LD to her brain, but it is great that she is able to start doing these things. She still spends most of her time in bed or on the lounge, but now we can see that she is improving, rather than having to sit in shifts to watch her breathing as she sleeps to make sure she makes it through the night (at her worst we took the very unpopular decision to not put her into our local hospital, as at the time they had a golden-staph infection problem, & we knew if she got that she would die very quickly). So.... for those that are struggling with years and years of health issues (H has had LD for 16 1/2 years - she got it from me before she was born - but has only been having treatment for 1 1/2 years) there is hope. It is a loooong slow recovery for some of these kids, and they will probably always have LD & have to be careful, but there is hope that they can move from the darkened bedroom to eventually having a more fulfilling life. Anyway, that is my 2 cents worth for today. I'm sitting in Mcs having an hour off looking after her whilst she is at school & wanted to share my joy with you all. 1 hour isn't much, but is more than I've had in 18 months, so it is something to be celebrated!!! Take Care Nikki (in Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2011 Report Share Posted February 22, 2011 Dear Nikki, Thank you so much for sharing! My heart goes out to you & your children. You said you gave Lyme to H. Can you tell me when symptoms began? I found out I had Lyme a year after my son was born but symptoms were there while I was pregnant. I'm deeply concerned about him but he is extremely healthy with occasional leg pain. He test neg for Lyme and my LLMD says he doesn't have it. But I've read children who get it from their Momma's always test negative. I was just wondering when you started noticing something wasn't right. Thanks and God bless you! Tricia On Sun, Feb 20, 2011 at 5:42 PM, Nikki <ncoleman@...> wrote: > > > Hi > > I thought I'd give you a quick update on my girls. > > J (who has moderate/mild LD) is doing really well on the Byron White > formula's - she's still sleeping a lot, and is only at school part time, but > her thryoid issues seem to be getting better - now we just have to hope her > joint problems improve!! > > H (who was completely paralysed last October - unable to hold her head up, > unable to move her arms, legs or torso, unable to swallow & was having > trouble breathing), has improved enough to do 1 subject at school (ceramics) > with some modifications (she's still in her wheelchair & can't use her arms > a lot). She is at school 1 hour a day, 3 days a week ( & spends the rest of > the time recovering). We have had to fight HARD to get her IV Rocephin here > in Australia, but her wonderful Dr (who isn't an LLMD, or has even treated > anyone with LD before) has agreed to follow the guidance of H's LLMD in Hyde > Park, NY, USA ( Dr H), & she has been improving dramatically on that (she's > up to 4 months on Rocephin). What has really turned her around though has > been the combination of the Rocephin & the Byron White Formula's (along with > lots of other abx, meds & supplements). I know it doesn't work for everyone, > but for her it seems to be working really well. > > It is so exciting to see H able to walk, talk, swallow, use her arms, & > even sing. She has a long long way to go - she's having physiotherapy every > day, & starts brain rehab soon (with neuro eeg feedback) to treat the damage > done by the LD to her brain, but it is great that she is able to start doing > these things. She still spends most of her time in bed or on the lounge, but > now we can see that she is improving, rather than having to sit in shifts to > watch her breathing as she sleeps to make sure she makes it through the > night (at her worst we took the very unpopular decision to not put her into > our local hospital, as at the time they had a golden-staph infection > problem, & we knew if she got that she would die very quickly). > > So.... for those that are struggling with years and years of health issues > (H has had LD for 16 1/2 years - she got it from me before she was born - > but has only been having treatment for 1 1/2 years) there is hope. It is a > loooong slow recovery for some of these kids, and they will probably always > have LD & have to be careful, but there is hope that they can move from the > darkened bedroom to eventually having a more fulfilling life. > > Anyway, that is my 2 cents worth for today. I'm sitting in Mcs having > an hour off looking after her whilst she is at school & wanted to share my > joy with you all. 1 hour isn't much, but is more than I've had in 18 months, > so it is something to be celebrated!!! > > Take Care > > Nikki > (in Australia) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2011 Report Share Posted February 22, 2011 Tricia - ((Diane)) My first child - was sever colic at birth until about eight months old - ongoing ear infec - tubes at 6 mo and perm ones at 1 yr - strep about two times a year - but other then that pretty healthy......at four years old started having chronic sinus infec.......tonsils and adenoids out at five years old - no relief.......ongoing ear - sinus - strep infections.......mono at seven years old - chronic headaches started at 9 years old - at 10 she had a swollen knee and doxed with JRA - at 12 years old started IBS - she looked healthy and would act healthy though out her life - but would pick up virus's all the time - and it would take her three times the time it would take other kids to get over them.......missed school on and off all the time.... Second child - very fatigue as a baby (nice for me) then when four months old started a year infec that she couldn't get over - then put tubes in and still would have chronic ear infec - strep - tonsils out at 6 years old - very bad mono at 7 years old - then the sinus infec started......missed school alot due to virus's, fever, fatigue,.............headaches also started at 9 years old (this child always had " growing pains " - at least that is what they would tell me it was) Third child - has been pretty healthy - no tubes......gets fevers but gets over them pretty easy.......she is seven years old right now and started showing some adhd about six months ago - so when she is able to take meds on a regular basis I will get her treated......she will not take meds for me at all right now - when she does get a ear or sinus infec we have to give her a shot - she mentally makes herself throw up so its just not a fight I am going to fight right now - Because I have been though many stages of this disease with my girls not knowing what they had - even if my youngest is not showing signs of this disease I will be treating her ...... my guess as some will come out when treatment would start.......but I feel her immune system is just keeping this under control right now but I will not take the chance for it to come out when she is a teenager.......just so much more to deal with at that age.......I think the younger to treat the better - I pray your little one doesn't have this but I also pray that if they do that it gets treated properly asap...... God Bless you Diane ________________________________ From: Tricia Soderstrom <triciasod@...> Sent: Tue, February 22, 2011 8:28:57 AM Subject: Re: [ ] an update on my girls  Dear Nikki, Thank you so much for sharing! My heart goes out to you & your children. You said you gave Lyme to H. Can you tell me when symptoms began? I found out I had Lyme a year after my son was born but symptoms were there while I was pregnant. I'm deeply concerned about him but he is extremely healthy with occasional leg pain. He test neg for Lyme and my LLMD says he doesn't have it. But I've read children who get it from their Momma's always test negative. I was just wondering when you started noticing something wasn't right. Thanks and God bless you! Tricia On Sun, Feb 20, 2011 at 5:42 PM, Nikki <ncoleman@...> wrote: > > > Hi > > I thought I'd give you a quick update on my girls. > > J (who has moderate/mild LD) is doing really well on the Byron White > formula's - she's still sleeping a lot, and is only at school part time, but > her thryoid issues seem to be getting better - now we just have to hope her > joint problems improve!! > > H (who was completely paralysed last October - unable to hold her head up, > unable to move her arms, legs or torso, unable to swallow & was having > trouble breathing), has improved enough to do 1 subject at school (ceramics) > with some modifications (she's still in her wheelchair & can't use her arms > a lot). She is at school 1 hour a day, 3 days a week ( & spends the rest of > the time recovering). We have had to fight HARD to get her IV Rocephin here > in Australia, but her wonderful Dr (who isn't an LLMD, or has even treated > anyone with LD before) has agreed to follow the guidance of H's LLMD in Hyde > Park, NY, USA ( Dr H), & she has been improving dramatically on that (she's > up to 4 months on Rocephin). What has really turned her around though has > been the combination of the Rocephin & the Byron White Formula's (along with > lots of other abx, meds & supplements). I know it doesn't work for everyone, > but for her it seems to be working really well. > > It is so exciting to see H able to walk, talk, swallow, use her arms, & > even sing. She has a long long way to go - she's having physiotherapy every > day, & starts brain rehab soon (with neuro eeg feedback) to treat the damage > done by the LD to her brain, but it is great that she is able to start doing > these things. She still spends most of her time in bed or on the lounge, but > now we can see that she is improving, rather than having to sit in shifts to > watch her breathing as she sleeps to make sure she makes it through the > night (at her worst we took the very unpopular decision to not put her into > our local hospital, as at the time they had a golden-staph infection > problem, & we knew if she got that she would die very quickly). > > So.... for those that are struggling with years and years of health issues > (H has had LD for 16 1/2 years - she got it from me before she was born - > but has only been having treatment for 1 1/2 years) there is hope. It is a > loooong slow recovery for some of these kids, and they will probably always > have LD & have to be careful, but there is hope that they can move from the > darkened bedroom to eventually having a more fulfilling life. > > Anyway, that is my 2 cents worth for today. I'm sitting in Mcs having > an hour off looking after her whilst she is at school & wanted to share my > joy with you all. 1 hour isn't much, but is more than I've had in 18 months, > so it is something to be celebrated!!! > > Take Care > > Nikki > (in Australia) > > > > Quote Link to comment Share on other sites More sharing options...
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