Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Hello all! I am a 30 year old new mom just diagnosed last week with RA. I'm a bit freaked but trying to maintain...I have a couple questions if anyone may have time to answer...One, my little son and I have gone through quite a lot to get on track with full-time nursing, and it breaks my heart to think about having to wean him right when we've finally 'hit our stride.' The 2400 mg. daily dose of NSAID's my rheumatologist is recommending is too much for a breastfed baby (not to mention my insides!) and even if it were ok'd by a pediatrician, rheumatologist wants to start DMARD's pretty soon. Besides Palenquel (sp?), does anyone know any other meds that have been approved for breastfeeding moms? My second question, is, has anyone successfully treated their RA with natural / alternative therapies? I'm following all the diet / supplement / exercise protocols that my naturapath is recommending (and this is much more in line with my belief system) but I'm concerned about doing damage to my tissues / joints if I'm not actually controlling the inflammation. I'd really like to avoid, or at least stall the big drugs, because of their toxicity and the nursing issue, but I also want to maintain my current level of mobility (I have complete range of motion in all joints--it just hurts!) Anyway, thanks for letting me ramble on, and any advice would be much appreciated. Namaste, CM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Dear a, Just wanted to thank you for the valuable information--it is truly appreciated (as is this whole site / group!) I think you're right about combining both alternative and traditional treatments. I thought I would try to remain strictly on an alternative track until I looked at my hands today and noticed my knuckles getting bigger--it sent me into my first real sobbing fit since my diagnosis...I need my hands to be able to hold my baby! I think I really needed to just feel sorry for myself for a minute, take a deep breath, and move forward again...Anyway, thanks for listening, and thanks again for all the resources! All the best, Camille. > Welcome and congratulations on your new addition to your family. Sorry > about your RA diagnosis. There are several resources for finding which > medications you can safely take while breastfeeding: > > The Breastfeeding and Human Lactation Study Center (phone 716-275- 0088) at > The University of Rochester in Rochester, NY, USA. This center maintains a > database of drugs and medications and provides free information to > physicians on their use and effects during breastfeeding. > http://www.cdc.gov/breastfeeding/compend-bhlsc.htm > > Motherisk (phone 416-813-6780) at The Hospital for Sick Children in Toronto, > Ontario, Canada. Call or visit their website for evidence-based information > about the safety or risk of drugs, chemicals and disease during pregnancy > and lactation. > http://www.motherisk.org/breastfeeding/index.php3 > > The Transfer of Drugs and Other Chemicals Into Human Milk > http://www.aap.org/policy/0063.html > > > Medications in the Breast-Feeding Mother > http://www.aafp.org/afp/20010701/119.html > > Drug Safety in Lactation > http://www.medsafe.govt.nz/Profs/PUarticles/lactation.htm > > Drug distribution in human milk > http://www.australianprescriber.com/magazines/vol20no2/milk.htm > > Which drugs are contraindicated during breastfeeding? > http://www.motherisk.org/updates/sept00.php3 > > Breastfeeding Pharmacology > http://neonatal.ttuhsc.edu/lact/index.html > > Drugs and breastfeeding: An updated guide to pharmacotherapeutic options > http://www.rxed.org/drugtopics/ce/2000/ce041700.pdf > > TAKING MEDICATIONS SAFELY WHILE BREASTFEEDING > http://www.askdrsears.com/html/2/T028500.asp > > Herbs Safe in Pregnancy or Lactation > http://www.growinglife.com/herbalsafety.htm > > > I've tried many alternatives and have decided that the safest route is to > combine alternative with traditional. I hope your disease is mild and you > can safely continue to breastfeed. Blood tests can monitor your > inflammation and x-rays can monitor joint erosion. Keep up the exercising, > it's proven to be invaluable in RA. > a > > > > > Hello all! > > > > I am a 30 year old new mom just diagnosed last week with RA. I'm a > > bit freaked but trying to maintain...I have a couple questions if > > anyone may have time to answer...One, my little son and I have gone > > through quite a lot to get on track with full-time nursing, and it > > breaks my heart to think about having to wean him right when we've > > finally 'hit our stride.' The 2400 mg. daily dose of NSAID's my > > rheumatologist is recommending is too much for a breastfed baby (not > > to mention my insides!) and even if it were ok'd by a pediatrician, > > rheumatologist wants to start DMARD's pretty soon. Besides Palenquel > > (sp?), does anyone know any other meds that have been approved for > > breastfeeding moms? My second question, is, has anyone successfully > > treated their RA with natural / alternative therapies? I'm following > > all the diet / supplement / exercise protocols that my naturapath is > > recommending (and this is much more in line with my belief system) > > but I'm concerned about doing damage to my tissues / joints if I'm > > not actually controlling the inflammation. I'd really like to avoid, > > or at least stall the big drugs, because of their toxicity and the > > nursing issue, but I also want to maintain my current level of > > mobility (I have complete range of motion in all joints--it just > > hurts!) Anyway, thanks for letting me ramble on, and any advice > > would be much appreciated. > > > > Namaste, > > CM > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 You¹re welcome Camille. I¹m sorry your hands are so painful. It¹s normal to feel sorry for yourself and to cry over getting this kind of news. We¹re lucky to be living at a time when RA treatments have advanced so much. There are so many new meds available that can control this disease and hopefully minimize the damage. Keep moving forward. You¹re wise to consider combining alternative and traditional. I used all alternative at one point of my 25 year career with this disease and I think I did myself more harm than good. I often wonder if I wouldn¹t have such damage if I took the meds. But I was so scared of the drugs. Now I¹m more afraid of the damage. a > Dear a, > Just wanted to thank you for the valuable information--it is truly > appreciated (as is this whole site / group!) I think you're right > about combining both alternative and traditional treatments. I > thought I would try to remain strictly on an alternative track until > I looked at my hands today and noticed my knuckles getting bigger--it > sent me into my first real sobbing fit since my diagnosis...I need my > hands to be able to hold my baby! I think I really needed to just > feel sorry for myself for a minute, take a deep breath, and move > forward again...Anyway, thanks for listening, and thanks again for > all the resources! All the best, > Camille. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Hi CM, Welcome to the group. Glad that you found us. Sorry it took me so long to reply. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi and welcome to the group. I completely understand how you feel right now. We, as many families in this group, went throught the same loops and delays. We have all heard the same line " it will round with time " . Fortunately you have now another avenue to get correction for your son. What type of helmet are you getting? You will see how quickly your son adjusts to it. 7 months is a good age. Don't worry about it. My son was 6 1/2 when we started and I am very glad and thankful with the correction he received. My advice for now is to be patient and follow all the directions you get once you receive the helmet. Keep us posted and we will help you along. Given the heat, keep his dressing a bit lighter than usual, maybe do away with the socks and try to keep him indoors the first few days so that his body temperature can adjust (that is just a thought). Carolina, mommy to Mateo (10 months, DOC band graduate) --- In Plagiocephaly , " turtlemags " <turtlemags@y...> wrote: > Hey! What a great place, everyone is so helpful, hopefully some one > can help me let go of my anger-am I the ONLY parent who heard " it > will grow out " for six months only to be given a script for a helmut > at seven months by a nerosurgen? I am still in such shock that my > pediatrician(s) were so unconcerned!!!! I asked MANY (five) times and > three differnt doctors....IF I had gotten it earlier, I would be done > by now! Why, I guess I just want to know WHY!!!!!!!! We had > the " fitting " and will recieve the helmut the 14th-any words of > wisdom??? I am so afraid for my boy, afraid of the heat, his skin- > everything! I know it something I have to do...so if there are ANY > major (or minor) things I need to know at this stage, please let me > know-I appreciate any and all advice! Thanks in advance and God Bless > all those beautiful babies! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Welcome!! We're so glad to have you as part of our little (well, not so little) family!! We all get great support here - we're glad you are here! Don't we wish we could say you were the only one...but you are not...it's too common to hear that " it will grow out on its own " - I still hear that now with some people saying oh, won't it grow out on it's own - it's bad enough to hear it from those you don't know as well (or who you know really well) - but to hear it from the so- called " professionals " is extraordinarily aggravating!! Good for you for pursuing additional care and results for your son!! I'm sure you will hear from others who have similar experiences - but know that 7 months is still a great age for great correction - our son got his just after he turned six months - and just graduated!! You are still in a great position...and you'll see rounding in no time!! Keep us posted when you get his helmut...and give us more details on the rest of your journey when you can! Mom to Noah - DOCBand grad 7/28/03 Atlanta, GA --- In Plagiocephaly , " turtlemags " <turtlemags@y...> wrote: > Hey! What a great place, everyone is so helpful, hopefully some one > can help me let go of my anger-am I the ONLY parent who heard " it > will grow out " for six months only to be given a script for a helmut > at seven months by a nerosurgen? I am still in such shock that my > pediatrician(s) were so unconcerned!!!! I asked MANY (five) times and > three differnt doctors....IF I had gotten it earlier, I would be done > by now! Why, I guess I just want to know WHY!!!!!!!! We had > the " fitting " and will recieve the helmut the 14th-any words of > wisdom??? I am so afraid for my boy, afraid of the heat, his skin- > everything! I know it something I have to do...so if there are ANY > major (or minor) things I need to know at this stage, please let me > know-I appreciate any and all advice! Thanks in advance and God Bless > all those beautiful babies! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 Hi and welcome to the group, and no, you are not the only one that has ever heard that hateful phrase, it is a long running joke on here. Honestly, there is nothing to worry about when getting your son's helmet. They are wonderful! I know that you must be nervous about it, cause I knew that we all were, but things worked out so wonderfully in the end, when we get the lay those nice round helemts down to bed at night. Keep up the good work, you are doing great! Best wishes, Heidi,mom to Jeffry, local helmet grad, MN Hugs & Drool, Jeffry, Heidi & Brett Zimmerman >From: " turtlemags " <turtlemags@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: I'm New! >Date: Sun, 03 Aug 2003 01:54:23 -0000 > >Hey! What a great place, everyone is so helpful, hopefully some one >can help me let go of my anger-am I the ONLY parent who heard " it >will grow out " for six months only to be given a script for a helmut >at seven months by a nerosurgen? I am still in such shock that my >pediatrician(s) were so unconcerned!!!! I asked MANY (five) times and >three differnt doctors....IF I had gotten it earlier, I would be done >by now! Why, I guess I just want to know WHY!!!!!!!! We had >the " fitting " and will recieve the helmut the 14th-any words of >wisdom??? I am so afraid for my boy, afraid of the heat, his skin- >everything! I know it something I have to do...so if there are ANY >major (or minor) things I need to know at this stage, please let me >know-I appreciate any and all advice! Thanks in advance and God Bless >all those beautiful babies! > > > >For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 Welcome to the group! This is a great group of people. Let us know wen your baby receives the helmet Angie and Jenna(STARband grad 1/21/03) I'm New! Hey! What a great place, everyone is so helpful, hopefully some one can help me let go of my anger-am I the ONLY parent who heard "it will grow out" for six months only to be given a script for a helmut at seven months by a nerosurgen? I am still in such shock that my pediatrician(s) were so unconcerned!!!! I asked MANY (five) times and three differnt doctors....IF I had gotten it earlier, I would be done by now! Why, I guess I just want to know WHY!!!!!!!! We had the "fitting" and will recieve the helmut the 14th-any words of wisdom??? I am so afraid for my boy, afraid of the heat, his skin-everything! I know it something I have to do...so if there are ANY major (or minor) things I need to know at this stage, please let me know-I appreciate any and all advice! Thanks in advance and God Bless all those beautiful babies!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 If you want to talk to a neurosurgeon it is your right to do so. My ped kept telling me there was nothing wrong with my son's head and he was just " supposed to look that way " so I simply told him I was not going to leave his office without a referral. You have a right to a second opinion and your docoter may give you a hard time (mine told me I was crazy) but if you demand a referal you should get it. Goood Luck! ~~~~ Mama to: 12-16-00 Jordan(cranio,plagio & tort) & 2-21-03 From: " Cindi " <misalynn@...> Subject: Re: I'm New! I am new too. My son is not banded yet. My doctor says that he has seen improvement from repostioning but I keep looking at my little guy's head and worrying that he is just saying that. I am thinking that I really want to go talk to a neurosurgeon. I was just at the doctor's last week. I wonder if he will give me a referral. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Hi there and welcome to the group! I see lots of replies already, so sit back and let the rounding begin! Dustie, mom to , DOC Grad '03 --- In Plagiocephaly , " turtlemags " <turtlemags@y...> wrote: > Hey! What a great place, everyone is so helpful, hopefully some one > can help me let go of my anger-am I the ONLY parent who heard " it > will grow out " for six months only to be given a script for a helmut > at seven months by a nerosurgen? I am still in such shock that my > pediatrician(s) were so unconcerned!!!! I asked MANY (five) times and > three differnt doctors....IF I had gotten it earlier, I would be done > by now! Why, I guess I just want to know WHY!!!!!!!! We had > the " fitting " and will recieve the helmut the 14th-any words of > wisdom??? I am so afraid for my boy, afraid of the heat, his skin- > everything! I know it something I have to do...so if there are ANY > major (or minor) things I need to know at this stage, please let me > know-I appreciate any and all advice! Thanks in advance and God Bless > all those beautiful babies! Quote Link to comment Share on other sites More sharing options...
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