Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 > hi,i'm a 29yo man from n.ireland.i was diagnosed with pa 2 years ago > but have had symtons for about 4years.the toes on my right foot > started to swell and my nails started to crack.my doctor said i had > some sort of fungal infection and gave me treatment to no avail.then > he said i might have gout, again mistakenly.i then changed doctors , > the new doctor took one look at my foot and said i probably had > pa.this was confirmed with x-rays.this was about two years ago and > the pa had spread to my spine and fingers.i was having difficulty > walking and thought i was going to have to quit my job.i was then > prescribed mtx at 15mg/week along with celebrex,within two weeks i > started to feel better,the pain and swelling greatly reduced.today i > still have some pains and stiffness but nothing like before.my > biggest foe is the fatigue sometimes i feel 89 not 29.i am concerned > about the side effects and i really do miss having a drink or two.but > with all things considered i think im best sticking with the mtx > until something better comes along.sorry this has turned out so > long,but im really pleased to have found this group,with other people > who are in the same > boat > yours,barney > >Hi Barney, Welcome to the group. It`s nice to hear from someone on this side of the pond! I`m 36 and have been on MTX for 2 years. It makes me feel awful but after a short spell without it (I came off it myself to see if it actually worked!)I felt a LOT worse. Unable to move and the PAIN! Now I`m back on it and the pain has lessened, but still very bad. The worse thing I think is the mood swings which are quite alarming. Not sure if this is due to the MTX,the PA,or the fact that I`m naturally moody! I was a bouncer and a chef but have had to give it all up because of this disease and that makes me depressed because the things that I used to take for granted are no longer available to me (weight-training,football,fishing-Can`t hold the bloody rod any more than a few minutes!). I`m now waiting to hear if the DLA are going to give me mobility allowance as well as the care allowance that I already get.It`s taken a year to get this far though so I don`t hold out much hope!I am now officially classed as disabled, but that tends to make me feel worse.Can`t win! But you are certainly not alone with this disease. There are many people on here who have been through it all before and the people in the States are very informative about the various treatments available. The drug called Enbrel is available over here but it takes a lot of convincing for them to prescribe it as it`s so expensive.I`m still waiting for that one as my rheumatologist would rather keep on with the MTX. Well that was a lot of writing, sorry to go on but welcome! Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hello melissa. Welcome to our group. It's great to meet moms of 10yro boys like myself. a, Hunter 10, 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hi Jen, welcome to the group! It is *so* *great* that you are so aware of this now and so proactive about it. is still at such a young age where she could greatly benefit from aggressive repo'ing. There is so much help here on our site along with members advice. Our repo mod Chrisitie developed a repositioning document that can be found in the files section, repositioning headquarters. It ticks me off that your ped nurse said the same as our ped nurse and we unfortunately waited too long to do something significant. Good luck and please let us know if you have any questions. Sue Colin F. STARband grad --- In Plagiocephaly , " Jen " <ronandjenvelez@p...> wrote: > > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > plagio. I am in the process of trying to get her ped to refer her to > a specialist to have her evaluated. funny, how they seem a little > reluctant... the nurse said " oh, a lot of kids have flat spots... it > should take care of itself " . I'm calling the Dr on Wednesday (she is > out of the office until then) and I'm going to pretty much demand a > referral. Since is only 2.5 Months old, I want to start > treating her now. No facial asymmetry yet, but her right ear is > farther forward than her left and her head is definitely mishappen. > I've been working on repositioning her and working to get her to turn > her head to the left... though she often resists. > > Any advice or suggestions would be greatly appreciated. > > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hi, Jen. You found a great website filled with people at various stages of plagio. My daughter is 6 months old and a few weeks ago I went to see a neurologist (my ped referred me). He said my daughter has plagio and tort. He wants her to wear a helmet. We had to get a catscan of her head, she had to get casted for a helmet and is getting PT. Now we just got the helmet and her treatment has begun. I feel if I didn't have the support of this group than I would have been lost. So...I would love to give you advice and be a person of support for you. I think you really should make your doctor send you for a second opinion. Your daugher is young but the younger they catch this the better. My neuro said that the head takes full shape by one year so these months leading to one year are really important to reshape the head. I definitely think if you are concerned than you should go to a specialist. My daughter's left ear is pushed a little forward and she has a slight bulge in her forehead. I am happy she is in the treatment process. Do whatever you can to get that other opinion. It is important and there is a lot out there to help you. Good luck with all of this. Remember, this website is here to support you so take full advantage of it. I did and I feel so much better knowing I have a place to voice a concern or ask a question. Best of luck- Shari Mom of Hannah- 6 months plagio and tort --- In Plagiocephaly , " Jen " <ronandjenvelez@p...> wrote: > > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > plagio. I am in the process of trying to get her ped to refer her to > a specialist to have her evaluated. funny, how they seem a little > reluctant... the nurse said " oh, a lot of kids have flat spots... it > should take care of itself " . I'm calling the Dr on Wednesday (she is > out of the office until then) and I'm going to pretty much demand a > referral. Since is only 2.5 Months old, I want to start > treating her now. No facial asymmetry yet, but her right ear is > farther forward than her left and her head is definitely mishappen. > I've been working on repositioning her and working to get her to turn > her head to the left... though she often resists. > > Any advice or suggestions would be greatly appreciated. > > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hi Jen and welcome to the group. It was great chatting earlier. Please keep us posted on the repo and s next doctors visit. Angie and Jenna Hi, I'm new > > > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > plagio. I am in the process of trying to get her ped to refer her to > a specialist to have her evaluated. funny, how they seem a little > reluctant... the nurse said " oh, a lot of kids have flat spots... it > should take care of itself " . I'm calling the Dr on Wednesday (she is > out of the office until then) and I'm going to pretty much demand a > referral. Since is only 2.5 Months old, I want to start > treating her now. No facial asymmetry yet, but her right ear is > farther forward than her left and her head is definitely mishappen. > I've been working on repositioning her and working to get her to turn > her head to the left... though she often resists. > > Any advice or suggestions would be greatly appreciated. > > Jen > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 HI Jen~ We didn't need a referral to be evaluated. I had them send a copy of the evaluation to my sons Dr., and on our next visit he took me more seriously. I too was told it would correct on its own. I don't remember the journal that the doctor had but it had a length article on plagio and it said 90 percent correct on their own. But I wasn't going to wait and see. My son got his helmet about 4 weeks ago. I didn't even need a percription. I'm not messing with insurance either. The place we got our helmet has a payment plan and as long as we pay something ea. month there is no interest. We filed for the insurance, but didn't wait for approval, and so far haven't heard anything. Good Luck Leigh- -- In Plagiocephaly , " Angie Pope " <apope04@c...> wrote: > Hi Jen and welcome to the group. It was great chatting earlier. Please > keep us posted on the repo and s next doctors visit. > > Angie and Jenna > Hi, I'm new > > > > > > > > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > > plagio. I am in the process of trying to get her ped to refer her to > > a specialist to have her evaluated. funny, how they seem a little > > reluctant... the nurse said " oh, a lot of kids have flat spots... it > > should take care of itself " . I'm calling the Dr on Wednesday (she is > > out of the office until then) and I'm going to pretty much demand a > > referral. Since is only 2.5 Months old, I want to start > > treating her now. No facial asymmetry yet, but her right ear is > > farther forward than her left and her head is definitely mishappen. > > I've been working on repositioning her and working to get her to turn > > her head to the left... though she often resists. > > > > Any advice or suggestions would be greatly appreciated. > > > > Jen > > > > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Hi Jen, Welcome to the group! Our story is similar to yours. I demanded a referral from our " oh it'll round out when she's older and if not her hair will cover it " ped when Hannah was about 2 mos old. At 3 mos she was seen by a pedi neurosurgeon and dx w/very severe plagiocephaly. She's 22 mos now and graduated from her third DOCband in July. You're doing a great thing by being proactive and dealing with this early. Check out our files/links for some great repoing info. Where are you located? How would you rate her severity (severity assessments in our links section)? We'd love to see pics if you want to post them! , mom to Hannah, DOCgrad Cape Cod, Ma --- In Plagiocephaly , " Jen " <ronandjenvelez@p...> wrote: > > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > plagio. I am in the process of trying to get her ped to refer her to > a specialist to have her evaluated. funny, how they seem a little > reluctant... the nurse said " oh, a lot of kids have flat spots... it > should take care of itself " . I'm calling the Dr on Wednesday (she is > out of the office until then) and I'm going to pretty much demand a > referral. Since is only 2.5 Months old, I want to start > treating her now. No facial asymmetry yet, but her right ear is > farther forward than her left and her head is definitely mishappen. > I've been working on repositioning her and working to get her to turn > her head to the left... though she often resists. > > Any advice or suggestions would be greatly appreciated. > > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 When my son would only keep his head turned to one side (the left) his specialist told me to do a neck exercise which consisted of turning his head from right to left (shoulder to shoulder) 10 times and to do it every time I changed him. It worked. It didnot however help reshape his head. <sarahhollis@...> wrote: Hi Jen, Welcome to the group! Our story is similar to yours. I demanded a referral from our "oh it'll round out when she's older and if not her hair will cover it" ped when Hannah was about 2 mos old. At 3 mos she was seen by a pedi neurosurgeon and dx w/very severe plagiocephaly. She's 22 mos now and graduated from her third DOCband in July. You're doing a great thing by being proactive and dealing with this early. Check out our files/links for some great repoing info. Where are you located? How would you rate her severity (severity assessments in our links section)? We'd love to see pics if you want to post them!, mom to Hannah, DOCgradCape Cod, Ma> > Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and > plagio. I am in the process of trying to get her ped to refer her to > a specialist to have her evaluated. funny, how they seem a little > reluctant... the nurse said "oh, a lot of kids have flat spots... it > should take care of itself". I'm calling the Dr on Wednesday (she is > out of the office until then) and I'm going to pretty much demand a > referral. Since is only 2.5 Months old, I want to start > treating her now. No facial asymmetry yet, but her right ear is > farther forward than her left and her head is definitely mishappen. > I've been working on repositioning her and working to get her to turn > her head to the left... though she often resists.> > Any advice or suggestions would be greatly appreciated.> > Jen :)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Hi Jen, Welcome to the group. Katelyn is very young and should respond well to aggressive repositioning and stretching. I'm sure someome has already pointed you towards are repo files. If not here is a nother link ... Repositioning Headquarters Detailed repo strategies and information, photos of repo ideas from our group members, and more. Check out the Repositioning and Tummy Time folder in the Links section of the group for a lot more information on and products for repositioning. Tummy time is going to be key for Katelyn. It will help with the tort. Here is a link to our tort files. Torticollis Help Stretching tips and muscle location pics Let us know how the discussion with the dr goes today. mom to na DOC Grad Jen <ronandjenvelez@...> wrote: Hi, my name is Jen and my Daughter Katelyn (DOB 8/2/04) has tort and plagio. I am in the process of trying to get her ped to refer her to a specialist to have her evaluated. funny, how they seem a little reluctant... the nurse said "oh, a lot of kids have flat spots... it should take care of itself". I'm calling the Dr on Wednesday (she is out of the office until then) and I'm going to pretty much demand a referral. Since is only 2.5 Months old, I want to start treating her now. No facial asymmetry yet, but her right ear is farther forward than her left and her head is definitely mishappen. I've been working on repositioning her and working to get her to turn her head to the left... though she often resists.Any advice or suggestions would be greatly appreciated.Jen :)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also have RA although I don't know a lot about it. I also have osteo, so I don't know which is causing which joint to ache. I took Enbrel for a while, it is suppose to slow the progress of RA. I stopped because I had skin problems from it. Right now I am debating about a new rheumatologist. It seems all they can do is give med. There seems to be some good info about meds in this chat. I know RA is scary, life is scary. Its one day at a time, that is really all we have, who knows about tomorrow? lsykeswvu <lsykes@...> wrote: Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hello Lisie! I know where your coming from. I was just diagnosed last week also. One day my hands and feet were fine, and the next day they were swollen up like balloons. My fingers and wrists were extremely stiff and painful in the morning, and by afternoon some of the stiffness and pain had diminished some. You could have knocked me over with a feather when my doc said it was RA. I am already taking pain meds for chronic back problems, but for some reason they don't help my joint pain too much. Heat and ICYHOT helps the most. My feet and hands are back to normal size as of yesterday, but I still have extreme pain in my right thumb and wrist. I hope this will start to diminish too. I am 41 years old but feel 61 LOL. I am also Mom to 2 year old twins, and some mornings it is sooooo hard to get up and get the day going. There are times I get very depressed because I want to go places with my babies and experience fun things with them, but most days it is very difficult just to get them dressed in the morning. Thank God for a supportive husband, even tho he doesn't understand alot of whats going on with me. I wish I had some advice to give, but I guess we will learn together. This is a great place to be. Hugs C -- [ ] Hi, I'm new Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hi Lisie - I understand being scared and confused - I remember when I was first diagnosed and I know that most on this list probably went through the same feelings. It's hard to accept the thought that the disease you have is something that can completely debilitate your life, and that there is not really anything out there that " cures " it. There's a certain amount of grieving we do - grieving at the loss of the style of life we once had. However, don't give up all hope! I strongly recommend that you do a lot of research at this point and really look into the treatment options. This is the time to decide that YOU are the best one to assess what's going on with your body, and the doctor should be your educated assistant. You're young and have a long life in front of you, so you want to look at long-term results and not just what's going to temporarily fix the problem now. There are options out there that have had good results with a large number of people. Personally I'm a strong believer in the use of antibiotics to fight RA, and there are many people who have used the antibiotic protocol successfully and have obtained remission for years while remaining on nothing but an every-other-day dose of antibiotics. It's not the quickest way to relieve your pain, but I think anyone that is looking at 20, 30, 40 years or so of treatment should focus on the long-range goals and not just immediate relief. When you go in to see your doctor, take in print-outs of various treatments. Look up the typical drugs: methotrexate, plaquenil, prednisone, enbrel etc. Know the potential side effects. Also look up the use of antibiotics with RA (minocin/minocycline and doxycycline). Look up the various pain meds (ibuprofen, acetaminophen, celebrex, oxycodone). Know the pros and cons of each treatment. Think of your life and your goals and what you want long-term. And when you go in, let your doctor know what your thoughts are on it all. The doctor should be your coach in this, but your treatment is YOUR choice. I was diagnosed with RA almost seven months ago. I chose to use the antibiotic protocol, but I've also added in some other meds for various reasons. I use prednisone (very small dose, every other day) to help reduce the inflammation in the joints so that the antibiotics can work. I use plaquenil (for now, this is temporary) to help retard any joint damage while the antibiotics work. I also use various pain meds as needed - I used quite a bit of oxycodone when I was flaring badly, but rarely need anything other than a bit of Advil these days. It was not easy at first, because it's typical to run into increased problems as the bacteria in the joints starts to die off. But I am active and busy these days, working at a fishing lodge and training and showing my dogs. I still hurt, and there are days when my fingers won't bend all the way and my knees, ankles and shoulders are sore. But I CAN function, and I feel that my treatment (MY choice of treatment) is something that will work long-term with a reduction in meds instead of the typical increase you see when using the other drugs. There IS life with RA - it's a matter of finding the treatment that will work best for you. Don't just blindly follow your doctor's recommendations. Some doctors are sadly lacking in current information and only want to prescribe the typical drugs. Be proactive in your treatment and you will be very glad down the road! Good luck, and keep us posted as to how things are going. in Alaska ----- Original Message ----- From: lsykeswvu Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 > > Hi, I just found your group here. I just came across some signs in my town about autism > from Generation Rescue. I looked at the site and it's possible my middle son has mercury > poisoning. > > I am going to contact a woman in my area who is a support person. > > Honestly, I am a bit overwhelmed at times, and feel like I'm just starting on this path, > especially the healing road for my little Eli. Kala--- Welcome. In this group you are going to learn a lot. Take it easy. Here you are a good place to start: http://home.earthlink.net/~moriam/ > > Anyways, thanks for creating this group. > > > > Shan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Welcome to the List ! I think you found a very good place to find support and answers. I recommend that you take a look at the Files section on the left. Also, feel free to post questions, I think you will find many friendly supportive people here willing to share their experiences and advice. Neil > > Hi, I just found your group here. I just came across some signs in my town about autism > from Generation Rescue. I looked at the site and it's possible my middle son has mercury > poisoning. > > I am going to contact a woman in my area who is a support person. > > Honestly, I am a bit overwhelmed at times, and feel like I'm just starting on this path, > especially the healing road for my little Eli. > > > Anyways, thanks for creating this group. > > > > Shan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Welcome to the group...I am curious as to which town you live in? Only because my family and I just put up a bunch of signs in our town of Monroe, WA. My son's name is also Eli! Just curious. :0) Hope -------------- Original message -------------- From: " kalamoko " <kalamoko@...> > > Hi, I just found your group here. I just came across some signs in my town about autism > from Generation Rescue. I looked at the site and it's possible my middle son has mercury > poisoning. > > I am going to contact a woman in my area who is a support person. > > Honestly, I am a bit overwhelmed at times, and feel like I'm just starting on this path, > especially the healing road for my little Eli. Kala--- Welcome. In this group you are going to learn a lot. Take it easy. Here you are a good place to start: http://home.earthlink.net/~moriam/ > > Anyways, thanks for creating this group. > > > > Shan > ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 --Not to discourage you from a diagnosis, but keep in mind that more insurance companies cover apraxia or mitochondrial disorder(if you find carnitine deficiency), than will help with autism diagnosis. Plus many good treatments for autism are from DAN doctors who aren't covered by insurance co. Please know that I'm not trying to discourage, just help you avoid headaches and bill. Many families I know have to apply for grants to help cover their expenses, whereas a diagnosis of apraxia will get you more funds and speech sessions. - In , " ladonna_nm " <ladonna_nm@...> wrote: > > Hello everyone, my name is LaDonna, and I'm the proud mommy of 2 1/2 > year old twin girls, and Tori. > > Tori has been in speech therapy since she was 18 months, and she is > now also receiving occupational therapy as well. This July, we will > have her evaluated by a team of doctors to see if they think she has > any form of autism. > > My daughter is very " talkative " and babbles constantly...she can > even count to 10. Up until age 2, the only thing she would say > was, " Uuuhhhhh, aaahhhhh. " Now, it seems like she's trying to > talk...it's hard to explain...it's more of a tone than words that > help us determine exactly what she is trying to say. Like when > she's counting, it sounds > like, " Uhn...oooo....feeee.....oooooorrr...eye...is....gaga... " and > so on. > > She loves looking in the mirror and babbling to herself, and she is > very animated with her hands. I'm hoping to find out in July what's > going on with her so we can get her some more intensive therapy. > > Anyway, I'm looking forward to knowing all of you! > > LaDonna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 what is mitochondrial disorder??? [ ] Re: Hi, I'm New --Not to discourage you from a diagnosis, but keep in mind that more insurance companies cover apraxia or mitochondrial disorder(if you find carnitine deficiency), than will help with autism diagnosis. Plus many good treatments for autism are from DAN doctors who aren't covered by insurance co. Please know that I'm not trying to discourage, just help you avoid headaches and bill. Many families I know have to apply for grants to help cover their expenses, whereas a diagnosis of apraxia will get you more funds and speech sessions. - In , " ladonna_nm " <ladonna_nm@...> wrote: > > Hello everyone, my name is LaDonna, and I'm the proud mommy of 2 1/2 > year old twin girls, and Tori. > > Tori has been in speech therapy since she was 18 months, and she is > now also receiving occupational therapy as well. This July, we will > have her evaluated by a team of doctors to see if they think she has > any form of autism. > > My daughter is very " talkative " and babbles constantly...she can > even count to 10. Up until age 2, the only thing she would say > was, " Uuuhhhhh, aaahhhhh. " Now, it seems like she's trying to > talk...it's hard to explain...it's more of a tone than words that > help us determine exactly what she is trying to say. Like when > she's counting, it sounds > like, " Uhn...oooo....feeee.....oooooorrr...eye...is....gaga... " and > so on. > > She loves looking in the mirror and babbling to herself, and she is > very animated with her hands. I'm hoping to find out in July what's > going on with her so we can get her some more intensive therapy. > > Anyway, I'm looking forward to knowing all of you! > > LaDonna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 Seek a DAN! Dr. > > Hello everyone, my name is LaDonna, and I'm the proud mommy of 2 1/2 > year old twin girls, and Tori. > > Tori has been in speech therapy since she was 18 months, and she is > now also receiving occupational therapy as well. This July, we will > have her evaluated by a team of doctors to see if they think she has > any form of autism. > > My daughter is very " talkative " and babbles constantly...she can > even count to 10. Up until age 2, the only thing she would say > was, " Uuuhhhhh, aaahhhhh. " Now, it seems like she's trying to > talk...it's hard to explain...it's more of a tone than words that > help us determine exactly what she is trying to say. Like when > she's counting, it sounds > like, " Uhn...oooo....feeee.....oooooorrr...eye...is....gaga... " and > so on. > > She loves looking in the mirror and babbling to herself, and she is > very animated with her hands. I'm hoping to find out in July what's > going on with her so we can get her some more intensive therapy. > > Anyway, I'm looking forward to knowing all of you! > > LaDonna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 Hi im a worker for miss mays and I too am new so we can share tips together Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 -Basically in laymans terms it is a fault of some kind in the processing of energy/foods in the cells of our body. There are some forms of DNA and RNA that are mutated and are not working properly. OR>>>> It may be a secondary process by which something externally like an autoimmune condition or otherwise is acting upon these cells in our skin, digestive, heart, lungs, nerves, etc.... the whole body to break them down . It may be very complex or very minor such as a Carnitine deficiency. Please do not look up lots of info online as it is a group of over 300 diseases and not helpful most often. Just know that if you get a neuro/metabolic workup it includes many of the same or similiar tests that DAN doctors will do. (Although a DAN doctor will definately be able to help you much more with supplements and reading these tests!Just keep an open mind about how to work your insurance for what it is worth! My son simply has a carnitine deficiency due to " inborn error of metabolism " and has an abnormal amino acid profile (which from reading is common in autism). He also benefits from many of the supplements and dietary interventions discussed on this site! Hope this helps, -- In , Dina Weinman-Frie <dwfrie@...> wrote: > > what is mitochondrial disorder??? > [ ] Re: Hi, I'm New > > > --Not to discourage you from a diagnosis, but keep in mind that more > insurance companies cover apraxia or mitochondrial disorder(if you > find carnitine deficiency), than will help with autism diagnosis. > Plus many good treatments for autism are from DAN doctors who aren't > covered by insurance co. Please know that I'm not trying to > discourage, just help you avoid headaches and bill. Many families I > know have to apply for grants to help cover their expenses, whereas > a diagnosis of apraxia will get you more funds and speech sessions. > > - In , " ladonna_nm " > <ladonna_nm@> wrote: > > > > Hello everyone, my name is LaDonna, and I'm the proud mommy of 2 > 1/2 > > year old twin girls, and Tori. > > > > Tori has been in speech therapy since she was 18 months, and she > is > > now also receiving occupational therapy as well. This July, we > will > > have her evaluated by a team of doctors to see if they think she > has > > any form of autism. > > > > My daughter is very " talkative " and babbles constantly...she can > > even count to 10. Up until age 2, the only thing she would say > > was, " Uuuhhhhh, aaahhhhh. " Now, it seems like she's trying to > > talk...it's hard to explain...it's more of a tone than words that > > help us determine exactly what she is trying to say. Like when > > she's counting, it sounds > > like, " Uhn...oooo....feeee.....oooooorrr...eye...is....gaga... " > and > > so on. > > > > She loves looking in the mirror and babbling to herself, and she > is > > very animated with her hands. I'm hoping to find out in July > what's > > going on with her so we can get her some more intensive therapy. > > > > Anyway, I'm looking forward to knowing all of you! > > > > LaDonna > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Hello , I am sorry you have to be here but glad you found us. I have no suggestions on your back but there are many that will be able to. Just wanted to Welcome!! Marsha [ ] Hi, I'm new Hello, I am a new member of this group. I have not been completely diagnosed with RA, but am diagnosed with Pindalderomic Rheumatoid for now. I have an appointment with the Rheumatologist next month, so all this is new for me. I am 34 and my joints seem to be getting worse. One area that it affects more than others is a joint in my back where I have a hemi-vertabrae with scoloiosis. When I get a flare up, the pressure in that area shoots pain and burning down my legs. Standing for more than 5 minutes is unbearable. Does anyone have suggestions on relief when this happens? I hate missing work, but think pushing it and going to work will aggravate it more. My neurologist has increased the neurontin, but hasn't helped this morning. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 Welcome Mindy,....It does sound like arthritis to me. You have many of the RA symptoms. I'm glad your seeing your doctor on the 14th. You really need to see a rheumatologist? You might talk with your doctor. Oh yeah, I sure know about the popping and cracking. I can't even sneak up on someone. You take care, and let us know how your doing, and what the doc thinks, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Hi: I am a 32 year old mother of three children ages 5, 17 mos and 17 mos (all boys). I have been lurking around on this message board hoping I can find someone with a similiar story as mine. I guess the only way to find that is to tell my story. I'll try to be brief but here goes... When I was about 5 months pregnant with the twins I started having excrutiating back, hip and pelvic pain, so much so that it felt like my pelvis was going to snap at any given point. I complained to the docotr who told me that it was just a normal part of being pregnant and that there was really nothing I could do about it. after another 4 excruiating months I delivered my sons and thought the worse was over. Wrong! The pain continued for another 3 months before one day I awakened unable to get out of the bed or move. I sought emergency room treatment twice in one week only to be given a diagnosis of " back pain " . Yes, I know. My back hurts! Once I was finally able to see a physician assistant (my " doctor " who I never met was somehow never available)she tried unsuccessfully to convince me that I had pelvic floor dysfunction (despite my telling her I did not have any incontinence or anything like that). I cried in her office one day because she refused to do any kind of blood test or MRI. Finally she ordered an MRI of my lumbar only and blood test. The results came back with and elevated esr, alkaline phospatase and negative rh factor. She sent me for physical therapy which proved to be unhelpful. I found a new doctor that would be available. I told her about my symptoms and she suspected Lupus and immediately ordered tests. The ANA was negative, RH factor borderline (for that lab the highest " normal was 14 and I was at 14) and ESR elevated (36). She sent me for a MRI of my pelvis which showed some inflammation at the pelvic bone. I was diagnosed with osteitis pubis, started on indomethacin and physical therapy. That was April '07. I continue with this until Sept. '07 when I ended up in the hospital for deep vein thrombosis. I was put on coumadin and iron pills for anemia. I could no longer take the indomethacin and the pain which had been cut down to a dull roar was back in full force. During this time my feet and ankles had joined the party and mornings were horrible. I asked my doctor to please retest for thyroid problems because the babies were now 1 years old and I was still in pain. Although I am still carrying a lot of the baby weight I know people bigger than I with less problems. She gave me a choice to see a othropedist or a rheumatologist. Having already seen the orthopedist for a fibula fracture sustained during all this and less than impressed with his bedside manner, I opted for the rheumatologist. December of '07 I went to the rheumy. This time the rh factor came back 8, esr 41, c-reactive protein elevated 1.16, iron deficient, calcium deficient. He diagnosed inflammatory arthritis and started me on prednisone. The prednisone at the high end of the doses prescribed 30-20 mg worked and the morning stiffness disappeared. However, as it tapers, the symptoms are returning, with some extra headaches (usually at the base of my skull and neck, sometimes behind my eyes) some light headed/dizziness when I stand up and unbelievable fatigue (which I could no longer blame on having just had two babies). The rheumatologist seems to think that my back/hip/pelvic pain is mechanical and that the prednisone wouldn't work (it did)and seems to be concentrating on my feet and hands (which are weak and tingling when I am asleep but not as much of a problem as the whole pelvic girdle thing). Meanwhile I cannot stand on my feet for long perids, walk for long periods, walk up or down stairs without pain and stiffness, lay on one side for too long without pain, roll over in bed without pain.... Has anyone else had inflammatory arthritis present like this? Should I ask for a CT scan of my sacroiliac joints? My next appointment is February 7th. Thank you for taking tthe time to read this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 > > > > > > Hi, I was just diagnosed with RA last week. I am very scared and > > > confused at this point. I go back to the doctor to discuss > > treatment > > > options soon. I am still in the feel sorry for myself and denial > > > stage, but I'm sure I will get past this feeling. I am thirty > > years > > > old and just got married last month. I thought planning a > wedding > > was > > > stressful and know I can see I have much more serious and real > > problems > > > ahead of me. I have been taking pain medicine which helps, but > > does > > > not make me feel 100%. This disease is strange. I can't believe > I > > > feel healthy my whole life and just wake up with a sore joint in > > two > > > fingers one day. I just thought I had slept on it, but soon knew > I > > had > > > a serious problem when I couldn't extend my arm all the way. A > > year > > > later I couldn't pull my body out of bed or lift my arms to do my > > hair > > > or put a shirt on. This is when I started on the medication. I > > spent > > > last evening crying. I don't know anyone with RA and would love > > > someone to talk to or give any advice. > > > > > > Thanks a lot, > > > > > > Lisie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 > > > > > > Hi, I was just diagnosed with RA last week. I am very scared and > > > confused at this point. I go back to the doctor to discuss > > treatment > > > options soon. I am still in the feel sorry for myself and denial > > > stage, but I'm sure I will get past this feeling. I am thirty > > years > > > old and just got married last month. I thought planning a > wedding > > was > > > stressful and know I can see I have much more serious and real > > problems > > > ahead of me. I have been taking pain medicine which helps, but > > does > > > not make me feel 100%. This disease is strange. I can't believe > I > > > feel healthy my whole life and just wake up with a sore joint in > > two > > > fingers one day. I just thought I had slept on it, but soon knew > I > > had > > > a serious problem when I couldn't extend my arm all the way. A > > year > > > later I couldn't pull my body out of bed or lift my arms to do my > > hair > > > or put a shirt on. This is when I started on the medication. I > > spent > > > last evening crying. I don't know anyone with RA and would love > > > someone to talk to or give any advice. > > > > > > Thanks a lot, > > > > > > Lisie > > > > >hi Lisie, my name is melynda im 38 yrs old.ive had RA 4 33 years & believe me its no fun . in the beginning i too felt sorry 4 myself but life goes on!! my RA started in my knees the drs thought it was growing pains,they were soooo wrong! im happily married to a wonderful man & he is very supportive. i to got out of bed but could not sit up, i needed help to put on my shirt ,comb my hair, pull up my pants & so on. with alot of surgeries & rehab. i can do more than before. you know im just glad to b alive 4 my husband & my little girl, Alyssa. HANG IN THERE LISIE Melynda<mapgamez@...> Quote Link to comment Share on other sites More sharing options...
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