Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 has had no reaction or side effect with the first infusion so hopefully it will continue like that. Cassie osdbmom wrote: > ok, so Dale, I understand your percentages you posted the other > day.Regarding IVIG reactions, I mean. But then almost everyone I read > on this board's child has flu like reactions, or nausea, or headaches, > or fatigue for a few days afterwards. So, do you mean the difference > between a REACTION(like, allergic or dystonic) and a side effect? Is > that what I am reading about with the other kids, just a side effect, > vs a reaction? Please just clear me up here, so I know what I am > looking at. > and oh, the benedryl.Savannah does fine with benedryl, its steroids I > am worried about........she has psychotic reactions to any kind of > oral steroid, like prelone. and they are not fun, and involve a LOT of > screaming. > thanks, valarie > > > > > > This forum is open to parents and caregivers of children diagnosed > with a Primary Immune Deficiency. Opinions or medical advice stated > here are the sole responsibility of the poster and should not be taken > as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 For us we were doing 50mg of diflucan twice a day if I remember correctly. Check with your doctor. Nothing unique about using diflucan with our kids. I would move to three times a day on Valtrex when you are able. A greater number of kids seem to do well with that. Valtrex is prescribed for EBV. I wouldn't mess around with it. I would jump in with Valtrex and you can always add OLE and VS or switch later on, but I would jump in with Valtrex. Just my opinion. - Stan > > Hi again, > > I have been praying that it would be clear if this was the route we were to take. I think I got the answer! I just received copies of labs including some viral panels we did through Labcorp. The only ones out of range were: > test/result/rr > Neutrophils /53/30-49 > lymphs/35/36-65 > creatinine, serum/0.3L mg/dL/0.5-1.5 > BUN/Creatinine Ratio/53/8-27 > EBV Ab VCA, IgG/225U/mL/0-99 > prealbumin/19Lmg/dL/20-40 > > Does EBV respond better to Valtrex or OLE/Virastop? She sent me and RX for Valtrex 500mg 1/2 ? BID, if tolerated increase to ? BID - can't read it very well but does this sound right? My son is about 30#. She also said to give monolauren 300 to 600mg/day - where do I get this? I plan on calling for an RX for Diflucan tomorrow. How should that be written? How long does he have to be on Diflucan prior to starting the valtrex? I have seen post written about dosing valtrex 3xday - should I have the rx re-written? Anything else I need to know before getting started? > Thanks again! > > > > > --------------------------------- > Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone. Get Messenger with Voice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 For us we were doing 50mg of diflucan twice a day if I remember correctly. Check with your doctor. Nothing unique about using diflucan with our kids. I would move to three times a day on Valtrex when you are able. A greater number of kids seem to do well with that. Valtrex is prescribed for EBV. I wouldn't mess around with it. I would jump in with Valtrex and you can always add OLE and VS or switch later on, but I would jump in with Valtrex. Just my opinion. - Stan > > Hi again, > > I have been praying that it would be clear if this was the route we were to take. I think I got the answer! I just received copies of labs including some viral panels we did through Labcorp. The only ones out of range were: > test/result/rr > Neutrophils /53/30-49 > lymphs/35/36-65 > creatinine, serum/0.3L mg/dL/0.5-1.5 > BUN/Creatinine Ratio/53/8-27 > EBV Ab VCA, IgG/225U/mL/0-99 > prealbumin/19Lmg/dL/20-40 > > Does EBV respond better to Valtrex or OLE/Virastop? She sent me and RX for Valtrex 500mg 1/2 ? BID, if tolerated increase to ? BID - can't read it very well but does this sound right? My son is about 30#. She also said to give monolauren 300 to 600mg/day - where do I get this? I plan on calling for an RX for Diflucan tomorrow. How should that be written? How long does he have to be on Diflucan prior to starting the valtrex? I have seen post written about dosing valtrex 3xday - should I have the rx re-written? Anything else I need to know before getting started? > Thanks again! > > > > > --------------------------------- > Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone. Get Messenger with Voice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 :-0 We're only doing 4mg once a day, as the dr. prescribed. Is the dosing dependent upon body weight? Wonder if my son's regression isn't really due to Valtrex, but to yeast overgrowth because we aren't doing enough about it. sigh......... From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Stan KurtzSent: Wednesday, May 31, 2006 2:09 PMmb12 valtrex Subject: Re: More questions For us we were doing 50mg of diflucan twice a day if I remember correctly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 :-0 We're only doing 4mg once a day, as the dr. prescribed. Is the dosing dependent upon body weight? Wonder if my son's regression isn't really due to Valtrex, but to yeast overgrowth because we aren't doing enough about it. sigh......... From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Stan KurtzSent: Wednesday, May 31, 2006 2:09 PMmb12 valtrex Subject: Re: More questions For us we were doing 50mg of diflucan twice a day if I remember correctly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 The lympth nodes can be from abnormal white blood cell counts and they should return to normal . It just takes a little time for the meds to completely be out of your system . It can take up to 6 months to fully get the tx meds out of your system , but you should see the doc about the lympth glands to be safe .Most doc's will do a one month post tx pcr if you ask them , but if not the usual is 3 months , 6months and 1 yr .By the way congratulations on completing treatment ! More Questions Hi All, I finished treatment on July 27 and my doctor will run the PCR tests at three months and six months to see if I stay clear. Three months seems like such a long time to wait (patience is not a strong point for me) so I am wondering when most people get their after treatment PCR. Has anyone ever been tested at one month? Also, over the last two weeks, I am noticing that my lymph glands are swollen throughout my neck and underarm area. Has anyone who's done treatment had this type of after side effect? Yes I will go to the doctor, but in the meantime I am hoping that someone can share their experiences. Thanks, Kathy Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Sounds like my son Lucas. He was also FTT at 2 and did not eat anything and gagged and choked and had constant tantrums etc etc. There are both physical as well as emotional causes for much of what you are talking about. some kids seem to be fine others like my son have other emotional ( my son is ADD, bipolar, severe anxiety, SID etc etc) he has a high IQ and does well overall but really struggles. I had my own company during the early years so I was the employer but it was very hard since I had to spend so much time with him being sick and it was impossible to leave him in daycare. Both for medical as well as emotional issues. I was able to find a home daycare where he was the only child except for her girls. He did OK but still got everything the kids had +++++ but did not get well EVER without an antibiotic.  As far as your daughter some testing can be done now but some of it will not be accurate until her immune system is on its own for awhile. ususally at about age 2. But yes they can do some of the testing. Some kids can really go down hill after they stop nursing so keep it up as long as you can. A couple of years may be very helpful if you can. May just help to reduce the # and severity of overall infections with the extra boost from your immune system. Not too many studies in that line but lots of anecdotal info from moms about he # of infections. Yes you will have lots of lots of questions. Many will answer but I think it is pretty quiet tonight. Hope this helps a little bit.BARBIE More questions Sorry again for all the questions! Curious about how everyone in the family was tested? Did the PED Immun. rec these tests or did you get referred to genetics? My daughter is only 11months and she has had a UTI and 4xs with fevers since she started solids at 6months. I still breastfeed her currently and I was wondering about the procedures for testing siblings? Also how many moms work outside the home and what reactions have you received from your employer? I also wanted to add that I have started reading the older messages however with three kids and a full time job.. my time is always crunched so please bear with me if I ask stuff that has already been posted.... One more thing (honest) I am reading that lots of your kiddos also have SID and eating issues (DIAG w FTT before age 2 and went to feeding therapy).... That has been our battle as well!!! Lance only eats a handful of foods and that is on a good day. He would go all day and eat nothing if I didn't remind him that he MUST eat. (Hence meds are very difficult with him) He also hates showers and certain smells and he hates watching his little sister eat. (He will even gag when looking at her!) AND he is VERY VERY HYPER when he is feeling good! So that is more info in a nutshell! April ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 -- Hi, and welcome. Im Valarie, mom to four kids, three with CVID, two of those with sensory problems. All my kids have allergies, asthma, and reflux. Once it was realized three of the children had CVID, we did test my other child, just bc she had a tendency to have a lot of sinus problems, etc, but her IGs are fine. We've tested yearly for over two yrs, and she's still fine. We've not seen any genetics dr, we've done everything through first pulmonary, then infectious disease drs. I used to work, I dont anymore and I havent in about 5 yrs. It became so that I was calling in more often than I was going to work, and then our pulmo asked me to take one yr off work to try to get our boys health under control. Well, that was five yrs ago, and I still cant go back bc we have too many illnesses, appts, etc for me to keep something steady. My ten yr old daughter(CVID) was just dx'd FTT, she is also one with sensory problems. We're working hard on helping her gain some weight. Both of mine with sensory problems did some extensive OT and that helped a LOT. My youngest son was FTT before we started IVIG, and now he is growing wonderfully:) HTH, valarie In , " ruley3 " <ruley3@...> wrote: > > Sorry again for all the questions! > Curious about how everyone in the family was tested? > Did the PED Immun. rec these tests or did you get referred to > genetics? > My daughter is only 11months and she has had a UTI and 4xs with > fevers since she started solids at 6months. I still breastfeed her > currently and I was wondering about the procedures for testing > siblings? > Also how many moms work outside the home and what reactions have you > received from your employer? > > I also wanted to add that I have started reading the older messages > however with three kids and a full time job.. my time is always > crunched so please bear with me if I ask stuff that has already been > posted.... > > One more thing (honest) > I am reading that lots of your kiddos also have SID and eating issues > (DIAG w FTT before age 2 and went to feeding therapy)....That has > been our battle as well!!! Lance only eats a handful of foods and > that is on a good day. He would go all day and eat nothing if I > didn't remind him that he MUST eat. (Hence meds are very difficult > with him) He also hates showers and certain smells and he hates > watching his little sister eat. (He will even gag when looking at > her!) AND he is VERY VERY HYPER when he is feeling good! > So that is more info in a nutshell! > April > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Hi April, My daughter is on the milder side of PID and I do work full time. She is in a daycare and has been in the same one since she was diagnosed two years ago. As she has gained diagnoses they have adapted and let me know when someone is ill and understand what is ill for her. I work for an agency that works with families with medical or developmental issues. I think because of this they have been wonderful about all the issues that my daughter has had. They let me work from home at times, at night, or on weekends to make up my time. I truly believe that another job would have fired me long ago. More questions Sorry again for all the questions! Curious about how everyone in the family was tested? Did the PED Immun. rec these tests or did you get referred to genetics? My daughter is only 11months and she has had a UTI and 4xs with fevers since she started solids at 6months. I still breastfeed her currently and I was wondering about the procedures for testing siblings? Also how many moms work outside the home and what reactions have you received from your employer? I also wanted to add that I have started reading the older messages however with three kids and a full time job.. my time is always crunched so please bear with me if I ask stuff that has already been posted.... One more thing (honest) I am reading that lots of your kiddos also have SID and eating issues (DIAG w FTT before age 2 and went to feeding therapy).... That has been our battle as well!!! Lance only eats a handful of foods and that is on a good day. He would go all day and eat nothing if I didn't remind him that he MUST eat. (Hence meds are very difficult with him) He also hates showers and certain smells and he hates watching his little sister eat. (He will even gag when looking at her!) AND he is VERY VERY HYPER when he is feeling good! So that is more info in a nutshell! April ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2010 Report Share Posted May 17, 2010 No, it will not damage. Gopal From: Raw <raw@...> Subject: More questions Date: Monday, 17 May, 2010, 3:23 AM  Ok, I know that Mung Bean Sprouts like weight but what about the other seeds? Do they like or dislike it, or do they care? What I'm thinking is I can stack 2 or 3 colanders on top of one another to save space, will it damage the sprouts underneath? Lorri (WA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2010 Report Share Posted May 17, 2010 My answer is no, do put weight on sprouts other than mung. If you need to stack, cut a piece of cardboard slightly larger than the colander and set the next one on it. Drain really well or your cardboard will get wet and you'll be cutting new pieces. ew More questions Ok, I know that Mung Bean Sprouts like weight but what about the other seeds? Do they like or dislike it, or do they care? What I'm thinking is I can stack 2 or 3 colanders on top of one another to save space, will it damage the sprouts underneath? Lorri (WA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2010 Report Share Posted May 17, 2010 OOOH that was a good question. Stacking colander on top of colander. I never thought to do that. And when I read your response EW, I said " okay, he says don't stack colanders " , so Melody won't stack colanders. I do my own thing and so far, so good. regards, sproutlady Melody > > > My answer is no, do put weight on sprouts other than mung. If you need to stack, cut a piece of cardboard slightly larger than the colander and set the next one on it. Drain really well or your cardboard will get wet and you'll be cutting new pieces. > ew > > > > > > > > > More questions > > > > > > Ok, I know that Mung Bean Sprouts like weight but what about the other > seeds? Do they like or dislike it, or do they care? What I'm thinking is I > can stack 2 or 3 colanders on top of one another to save space, will it > damage the sprouts underneath? > > Lorri (WA) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi I've been reading your posts. I think you should get into pt asap to help with muscle development and monitoring of general situation. Not sure about the slings/wraps. Ask you pediatric. It might be okay to wear her the opposite way she favors? I know when was treated got tortocolis at 4 months we had to make sure his head was propped to counteract the tendancy to turn it to favored direction. Someone should have checked his back THEN but that's a whole different story. Your child is young and u seem to be on top of things! Pt can show you things to do at home to help. Best of luck! Tame Sent from my iPhone On Oct 24, 2010, at 12:58 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi I've been reading your posts. I think you should get into pt asap to help with muscle development and monitoring of general situation. Not sure about the slings/wraps. Ask you pediatric. It might be okay to wear her the opposite way she favors? I know when was treated got tortocolis at 4 months we had to make sure his head was propped to counteract the tendancy to turn it to favored direction. Someone should have checked his back THEN but that's a whole different story. Your child is young and u seem to be on top of things! Pt can show you things to do at home to help. Best of luck! Tame Sent from my iPhone On Oct 24, 2010, at 12:58 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 PS I love the name Audrey! Maybe u could ask the pediatrician about tummy time. Ours said even at bens age 3.5 it's good to get him on tummy as much as possible to build core muscles along spine. Sent from my iPhone On Oct 24, 2010, at 12:58 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 PS I love the name Audrey! Maybe u could ask the pediatrician about tummy time. Ours said even at bens age 3.5 it's good to get him on tummy as much as possible to build core muscles along spine. Sent from my iPhone On Oct 24, 2010, at 12:58 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Thanks! I'll push for the PT referral now, rather than waiting until after the ortho referral's gone through (which was the ped's initial plan, but we may be waiting MONTHS for that ortho appointment). I did ask the ped about the wrapping/wearing, and she said it was fine. However she was really surprised that Audrey has a curve so young, said it's pretty much unheard of in babes taht young, and I got the sense she wasn't very informed? I find our pediatricians here in town are basically just GPs for babies/children - they do regular checkup stuff, and if they find anything they just refer the child to BCCH's appropriate department - they don't seem to diagnose or treat anything themselves beyond ear aches and such. As for tummy time, we try to do a little bit every day, but Audrey is NOT a fan When she's on her tummy her curve becomes very noticeable and I think it's uncomfortable for her. As I said, I do wear her a bit, which helps build up those core muscles, and when she's not being worn she's often carried in arms - I'm big on attachment parenting and have a busy demanding household so she spends very little time where she's not being carried in some way or another. As a result she's been able to lift her head and push up from her tummy since she was 3 weeks old! We did go swimming at the pool for the first time the other day, and she was much happier to do her tummy time in the water. I think we're going to try to go to the pool a couple of times a week, since she liked it so much > > First, thank you again for the warm welcome and all the info y'all are providing > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > It's so hard watching her get worse and not being able to DO anything about it! > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > Thanks again! > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Thanks! I'll push for the PT referral now, rather than waiting until after the ortho referral's gone through (which was the ped's initial plan, but we may be waiting MONTHS for that ortho appointment). I did ask the ped about the wrapping/wearing, and she said it was fine. However she was really surprised that Audrey has a curve so young, said it's pretty much unheard of in babes taht young, and I got the sense she wasn't very informed? I find our pediatricians here in town are basically just GPs for babies/children - they do regular checkup stuff, and if they find anything they just refer the child to BCCH's appropriate department - they don't seem to diagnose or treat anything themselves beyond ear aches and such. As for tummy time, we try to do a little bit every day, but Audrey is NOT a fan When she's on her tummy her curve becomes very noticeable and I think it's uncomfortable for her. As I said, I do wear her a bit, which helps build up those core muscles, and when she's not being worn she's often carried in arms - I'm big on attachment parenting and have a busy demanding household so she spends very little time where she's not being carried in some way or another. As a result she's been able to lift her head and push up from her tummy since she was 3 weeks old! We did go swimming at the pool for the first time the other day, and she was much happier to do her tummy time in the water. I think we're going to try to go to the pool a couple of times a week, since she liked it so much > > First, thank you again for the warm welcome and all the info y'all are providing > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > It's so hard watching her get worse and not being able to DO anything about it! > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > Thanks again! > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Swimming is great for muscles! That's a fantastic idea! Maybe you could do a carrier that holds her upright instead of a sling sometimes.... U know the kangaroo pouch kind???? Maybe she would slouch too much though. I bet you could research it and see or ask a good doc. still hates being on his stomach for the same reason I am sure.... It's probably not comfy. His PT works with him on that. She also puts him on his knees on a verticle position playing with items like on a chair or something to help muscle development which wouldn't be possible for Audrey yet since she's so young:). I am sure you will find some things that work well for you! In the meantime it sounds that you are being very proactive so good for you! You sound a little natural so in you spare time (haha) research yoga, hippotherapy, and chiropractic treatment for future reference some families have tried these forms of treatment to combat scoli. There's also something out there dealing with soft tissue massage. Kuddos to you for being on top of things. Don't worry about anyone thinging your nuts if I would have listened to others Ben wouldn't be where he is today! Tame Sent from my iPhone On Oct 24, 2010, at 10:15 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: Thanks! I'll push for the PT referral now, rather than waiting until after the ortho referral's gone through (which was the ped's initial plan, but we may be waiting MONTHS for that ortho appointment). I did ask the ped about the wrapping/wearing, and she said it was fine. However she was really surprised that Audrey has a curve so young, said it's pretty much unheard of in babes taht young, and I got the sense she wasn't very informed? I find our pediatricians here in town are basically just GPs for babies/children - they do regular checkup stuff, and if they find anything they just refer the child to BCCH's appropriate department - they don't seem to diagnose or treat anything themselves beyond ear aches and such. As for tummy time, we try to do a little bit every day, but Audrey is NOT a fan When she's on her tummy her curve becomes very noticeable and I think it's uncomfortable for her. As I said, I do wear her a bit, which helps build up those core muscles, and when she's not being worn she's often carried in arms - I'm big on attachment parenting and have a busy demanding household so she spends very little time where she's not being carried in some way or another. As a result she's been able to lift her head and push up from her tummy since she was 3 weeks old! We did go swimming at the pool for the first time the other day, and she was much happier to do her tummy time in the water. I think we're going to try to go to the pool a couple of times a week, since she liked it so much First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Swimming is great for muscles! That's a fantastic idea! Maybe you could do a carrier that holds her upright instead of a sling sometimes.... U know the kangaroo pouch kind???? Maybe she would slouch too much though. I bet you could research it and see or ask a good doc. still hates being on his stomach for the same reason I am sure.... It's probably not comfy. His PT works with him on that. She also puts him on his knees on a verticle position playing with items like on a chair or something to help muscle development which wouldn't be possible for Audrey yet since she's so young:). I am sure you will find some things that work well for you! In the meantime it sounds that you are being very proactive so good for you! You sound a little natural so in you spare time (haha) research yoga, hippotherapy, and chiropractic treatment for future reference some families have tried these forms of treatment to combat scoli. There's also something out there dealing with soft tissue massage. Kuddos to you for being on top of things. Don't worry about anyone thinging your nuts if I would have listened to others Ben wouldn't be where he is today! Tame Sent from my iPhone On Oct 24, 2010, at 10:15 AM, " chilliwackpitbull " <chilliwackpitbull@...> wrote: Thanks! I'll push for the PT referral now, rather than waiting until after the ortho referral's gone through (which was the ped's initial plan, but we may be waiting MONTHS for that ortho appointment). I did ask the ped about the wrapping/wearing, and she said it was fine. However she was really surprised that Audrey has a curve so young, said it's pretty much unheard of in babes taht young, and I got the sense she wasn't very informed? I find our pediatricians here in town are basically just GPs for babies/children - they do regular checkup stuff, and if they find anything they just refer the child to BCCH's appropriate department - they don't seem to diagnose or treat anything themselves beyond ear aches and such. As for tummy time, we try to do a little bit every day, but Audrey is NOT a fan When she's on her tummy her curve becomes very noticeable and I think it's uncomfortable for her. As I said, I do wear her a bit, which helps build up those core muscles, and when she's not being worn she's often carried in arms - I'm big on attachment parenting and have a busy demanding household so she spends very little time where she's not being carried in some way or another. As a result she's been able to lift her head and push up from her tummy since she was 3 weeks old! We did go swimming at the pool for the first time the other day, and she was much happier to do her tummy time in the water. I think we're going to try to go to the pool a couple of times a week, since she liked it so much First, thank you again for the warm welcome and all the info y'all are providing Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. It's so hard watching her get worse and not being able to DO anything about it! Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! Thanks again! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 My son with scoliosis (and the one without it) vary rarely spent any time not being worn or held. We don't do lots of tummy time with either or them - they both really hated it until older. I wouldn't worry about it or the formation of core muscles. My older son who is 2.5 has never has any problems with that even with his scoliosis. I feel that wearing him facing out sometimes or sitting up where he has to hold his own head and body up a bit was just fine. So don't worry! Also my son, although not diagnosed until 15 months was clearly born with his scoliosis. It is very uncommon (most physicians will only see 1 or 2 kids their entire careers with it that age) for kids to present that young, but as we all know it does happen. You are doing a great job! Hang in there. Jenn Mommy to cole and max > > > > First, thank you again for the warm welcome and all the info y'all are providing > > > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > > > It's so hard watching her get worse and not being able to DO anything about it! > > > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > > > Thanks again! > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 My son with scoliosis (and the one without it) vary rarely spent any time not being worn or held. We don't do lots of tummy time with either or them - they both really hated it until older. I wouldn't worry about it or the formation of core muscles. My older son who is 2.5 has never has any problems with that even with his scoliosis. I feel that wearing him facing out sometimes or sitting up where he has to hold his own head and body up a bit was just fine. So don't worry! Also my son, although not diagnosed until 15 months was clearly born with his scoliosis. It is very uncommon (most physicians will only see 1 or 2 kids their entire careers with it that age) for kids to present that young, but as we all know it does happen. You are doing a great job! Hang in there. Jenn Mommy to cole and max > > > > First, thank you again for the warm welcome and all the info y'all are providing > > > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > > > It's so hard watching her get worse and not being able to DO anything about it! > > > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > > > Thanks again! > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Oops one more thing. Check out the new directions dvd from ISOP and it has a section on good positions for them. Jenn Mommy to Cole and Max > > > > First, thank you again for the warm welcome and all the info y'all are providing > > > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > > > It's so hard watching her get worse and not being able to DO anything about it! > > > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > > > Thanks again! > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Oops one more thing. Check out the new directions dvd from ISOP and it has a section on good positions for them. Jenn Mommy to Cole and Max > > > > First, thank you again for the warm welcome and all the info y'all are providing > > > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > > > It's so hard watching her get worse and not being able to DO anything about it! > > > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > > > Thanks again! > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 She's always carried upright I use a homemade woven wrap (basically just a length of cloth) and carry her in various tummy-to-tummy positions. Now that she's got more core strength and better head control, I'm starting to do some hip carries and back carries too. With the woven wrap she doesn't slouch - I snug it up so that there's no room for that. She does tend to lean to the one side even wrapped, but I'm getting better and more creative at wrapping so that she can't The other thing I use to carry her is an Ergo Baby r. It's a soft-structured-carrier, basically a soft front-pack (like the old snugglies), but supportive. She can't slouch in that either as I cinch it up tight to my chest/belly. I'm actually not that " crunchy " lol. I kind of fell into attachment parenting because it just feels right to me, and the babywearing is something I wanted to do as it's good for the babes, and very convenient (hands free so I can tidy, cook, take care of the pets, and chase around my son and foster kids). I've had a few people recommend chiro, but I'm just not comfortable with it. I did a lot of looking into it, and any " research " I find that supports using chiro on infants is put out there by the chiropractic association - hardly unbiased. On the other hand I found a couple reputable, solid papers that were not affiliated with the chiropractic association - these studies showed that chiro is not proven effective in treating infants or children and that it can actually cause harm. I'm really glad it's worked for some parents, I'm just not comfortable with it myself. Physio on the other hand? Bring it > > First, thank you again for the warm welcome and all the info y'all are providing > > Tonight I took baby Audrey to see my cousin so she could have a look at her back. My cousin knows nothing about baby scoliosis, but is very familiar with curvatures and contractures from her work, and is brutally honest so I knew she'd tell me whether she saw what I'm seeing, or if I'm just being paranoid and seeing things that aren't there... > > She could clearly see the curve in Audrey's spine, and where her ribs are starting to bulge out. So it's not my imagination - baby's back is getting worse > > I'm going to call BCCH again on Monday to see if I can (politely!) push to get an appointment booked for Audrey to see the orthopedist. If that's not successful, I'll call her pediatrician and put pressure on there. > > I can't find the words to explain how distressing it is to watch my baby's back get worse right in front of my eyes, and she doesn't even have a diagnosis yet, or even an appointment to get diagnosed! I'm just sick over it So is my DH > > So, some questions - for those Canadians who travelled to the US for their babies medical treatments - did you need to get a passport for your babies? Hubby and I have passports, but baby does not - should I be applying for one for her now? > > As for contacting the Shriners Hospital in SLC - is there any point in doing that when we haven't even got a diagnosis yet? Really, all I have at this point is a single set of xrays showing a 13 degree curve. However my baby's back is VISIBLY getting worse, to the naked and untrained eye. > > I just feel like she's getting worse and I'm losing time; yet my hands are tied while I wait for her to see the specialist and hopefully get a diagnosis so that we can start actually talking about how to get her better. > > It's so hard watching her get worse and not being able to DO anything about it! > > Also, a possibly silly question - is there anything I should/shouldn't do with her in terms of positioning or activities? I asked the ped this, and she said no, just live life as normal. I told her I try to minimize the time baby spends in positions that seem to encourage her lean (like her car seat and bouncy chair), and she said that was fine, but didn't give me any other advice. Do any of you babywear? I wear Audrey a bit (in a wrap or an Ergo), and have a couple woven wraps I just bought on their way in the mail and I plan to wear her more once they get here. I would think the wearing would be good for her (supported in a good position for orthopedic/posture development and builds core muscles)? But it seems she's straightest when lying flat on her back, so maybe I shouldn't be wearing her and should have her laying flat a lot? Ack! I just don't know! > > Thanks again! > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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