Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Hello and welcome Angie, Please accept my sympathy for the loss of your son. How hard that must have been and to now be worried about Kayliegh, that's an awful lot for a mom. Thirteen months is still at an age where you can recieve good correction, it may take a bit longer than the younger babies, but I have seen many older babies look great after treatment. My son (now 15) had a metopic suture that appeared to be closed, but did not have the typical headshape of a severe case all he had was a ridge that you could feel and by the time he was three you would have never known anything was there and never had another problem.Hopefully Kayliegh will do the same. Where are you going for treatment? What specialist are you seeing? Maybe someone here has used the same one and can share thier experiences. I'm so glad you found this group too, it will be so helpful for you to have many others going through the same things. Let us know how things go. CAROLG > Hi my name is Angie and I am new here. I just got the call yesterday > that my 4th child Kayleigh whom is 13 months old has mild > plagiocehaly. I was always concerned about a spot in the back of her > head that I actually thought was a closed suture. My first son Jordan > had craniosynostosis, and had surgery when he was four months old. We > lost him during that surgery due to an allergic reaction to a blood > transfusion. So I have always been obsessive about my childrens heads > since then. I have repeatbly ask the doctor about this spot in > Kayleighs head and he has always told me the sutures were open. So at > her last check up I ask him again and he said that we should see a > neurosergeon just to be on the safe side. I was relieved and scared > to death at the same time. We had to go for a ct scan last Tuesday > and they had to put her to sleep. I just got the results back > yesterday and they told me that all her sutures were open except her > metopic suture, but she then told me that that particular suture is > the only one that begins to close in infancy so that may be normal > for Kayleigh. I am scared to death, that wasn't even the spot that we > were concerned about. I have been doing research and looking at > pictures of children with closed metopic sutures and I don't believe > that Kayleigh is going to need surgery but I don't want to get my > hopes up ya know. Her forhead looks great to me. So anyway I suppose > the ridge in the back of her head is what they are calling the mild > plagiocephaly, I am really nervous about that as well because she is > already 13 months old. She has an appointment Tuesday with the > specialist, I am hoping and praying we get some good news. Anyway I > am sorry this is so long, I am glad to have found this support group, > when I had my first son I didn't have the internet and I knew no one > that was going through the same things. Thanks for reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Hello and welcome Angie, Please accept my sympathy for the loss of your son. How hard that must have been and to now be worried about Kayliegh, that's an awful lot for a mom. Thirteen months is still at an age where you can recieve good correction, it may take a bit longer than the younger babies, but I have seen many older babies look great after treatment. My son (now 15) had a metopic suture that appeared to be closed, but did not have the typical headshape of a severe case all he had was a ridge that you could feel and by the time he was three you would have never known anything was there and never had another problem.Hopefully Kayliegh will do the same. Where are you going for treatment? What specialist are you seeing? Maybe someone here has used the same one and can share thier experiences. I'm so glad you found this group too, it will be so helpful for you to have many others going through the same things. Let us know how things go. CAROLG > Hi my name is Angie and I am new here. I just got the call yesterday > that my 4th child Kayleigh whom is 13 months old has mild > plagiocehaly. I was always concerned about a spot in the back of her > head that I actually thought was a closed suture. My first son Jordan > had craniosynostosis, and had surgery when he was four months old. We > lost him during that surgery due to an allergic reaction to a blood > transfusion. So I have always been obsessive about my childrens heads > since then. I have repeatbly ask the doctor about this spot in > Kayleighs head and he has always told me the sutures were open. So at > her last check up I ask him again and he said that we should see a > neurosergeon just to be on the safe side. I was relieved and scared > to death at the same time. We had to go for a ct scan last Tuesday > and they had to put her to sleep. I just got the results back > yesterday and they told me that all her sutures were open except her > metopic suture, but she then told me that that particular suture is > the only one that begins to close in infancy so that may be normal > for Kayleigh. I am scared to death, that wasn't even the spot that we > were concerned about. I have been doing research and looking at > pictures of children with closed metopic sutures and I don't believe > that Kayleigh is going to need surgery but I don't want to get my > hopes up ya know. Her forhead looks great to me. So anyway I suppose > the ridge in the back of her head is what they are calling the mild > plagiocephaly, I am really nervous about that as well because she is > already 13 months old. She has an appointment Tuesday with the > specialist, I am hoping and praying we get some good news. Anyway I > am sorry this is so long, I am glad to have found this support group, > when I had my first son I didn't have the internet and I knew no one > that was going through the same things. Thanks for reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hi Joyce I don't know why you would be reacting to cooked foods other than yu have made a change in your diet and it takes time for the body to readjust to the change. It could be a coincidence that the sinus infection occurred at the same time. I urge you to follow this diet. I have had candida most of my life also and also have MCS. Also I was vegetarian for about 12 years. After following the diet 5 months I am now much better and have healed back to the time when I had my first major MCS reaction. I just keep getting better but it took a lot of feeling pretty bad before I reached this point. So read the files and try the diet it could be the answer you are looking for. Perhaps someone else can address your question about the cooked foods. Take care Laurie > To make this short, I am 50, female, and suffering from candida for most of my life. I was on a raw diet for about 3 months, and felt good except for the weakness. Went back on cooked food, mainly meat, and came down with a sinus infection big time, requiring two rounds of antibiotics! I am allergic to most foods: dairy, some fruits, grains plus I have MCS. Would like to know why my body is reacting like this to cooked foods. > > > TO JESUS THROUGH MARY, > > JOYCE > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 hi sarah i'm new too 34 years and not officially diagnosed as yet - so no med's (have to have 1 more round of blood tests but 80% sure) welcome, these are a great bunch of people cheers mel (from australia) [ ] New here I just wanted to introduce myself. My name is . I am 30 years old and have been dx'd with RA for 2 1/2 years. I have been married 7 years come Monday with no kids. I am in the process of moving to London, England. I am on MTX, enbrel, pred. and folic acid. I look forward to getting to know everyone here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 : Welcome to the group. There's plenty of wonderful people here and tons of great information. I'm sure that if you have questions, if you post - you will usually find an answer. All the best, > I just wanted to introduce myself. My name is . I am 30 years > old and have been dx'd with RA for 2 1/2 years. I have been married 7 > years come Monday with no kids. I am in the process of moving to > London, England. I am on MTX, enbrel, pred. and folic acid. I look > forward to getting to know everyone here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Hi , Welcome to the group! I am so glad your here, it is a great place to be. May I ask where you live now? That would be cool to move to London, I have been there many years ago. I look forward to getting to know you, Take care, Tawny > I just wanted to introduce myself. My name is . I am 30 years > old and have been dx'd with RA for 2 1/2 years. I have been married 7 > years come Monday with no kids. I am in the process of moving to > London, England. I am on MTX, enbrel, pred. and folic acid. I look > forward to getting to know everyone here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Hi Tawny, thank you for your welcome it seems like a wonderful place. I am currently living in Ohio. Yes, it is very exciting to get this oppurtunity to move there esp as it means I get to see more of my family who still live there. > > I just wanted to introduce myself. My name is . I am 30 years > > old and have been dx'd with RA for 2 1/2 years. I have been married > 7 > > years come Monday with no kids. I am in the process of moving to > > London, England. I am on MTX, enbrel, pred. and folic acid. I look > > forward to getting to know everyone here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Welcome . I can't imagine moving out of the country. I had a hard enough time moving out of state! I hope the move goes smoothly. I've always wanted to go to England since that is where my mom is from. I'm also on enbrel and mtx and have had RA for 30 years. Nice to meet you. a On Sep 20, 2005, at 9:22 PM, wrote: > I just wanted to introduce myself. My name is . I am 30 years > old and have been dx'd with RA for 2 1/2 years. I have been married 7 > years come Monday with no kids. I am in the process of moving to > London, England. I am on MTX, enbrel, pred. and folic acid. I look > forward to getting to know everyone here. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Hello Ivy - Perhaps you were thinking of craniosynostosis? which is the premature fusion of the fontanels (which can also cause the misshapen head). If you do a search on that spelliing you are sure to find information. I would tend to agree with you that the sooner, the better... can you get in sooner? or another opinion? It is standard to have x-rays for cranio first because often that requires surgery. I am sure if you posted pictures we could all take a look for you. Rhonda Mom to Collin - DOC Band Grad 9/03 Owner - Precious Bambino (The Plagio Shop) www.preciousbambino.commama2kaylanalex <mama2kaylanalex@...> wrote: Hi, my name is Ivy, i have a 4 1/2 month old daughter named Mikayla. She had her 4month checkup last week and her doc was very concerned with how flat her head was (and it is very very flat in the back). He said he thought it possibly could be cranial stenosis. However, he wants to wait until her 6 month appointment to get x-rays, to see ifit has straightened on its own. I seriously dont think it is going to. So of course i went home and did research on the internet like crazy and found that she doesnt seem to have cranial stenosis, butsomething else i had stumbled on which was plagiocephaly. I read stories of children who went through it, and thats where i found this message board, so i thought i would read some posts and look at pics of some kids, and i swear on some of them i feel like i am looking at my own daughter. I am wondering if i post some pics if maybe some of youcan tell me whether i am overreacting or i have reason to be concerned about her waiting 2 more months.....I just think that the sooner wecan find out whats going on, the sooner we can get things going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Im sorry, yes that is what i was talking about, i just didnt spell it right, im not the best speller sometimes lol. Yes i can probably get her in sooner, at least i hope so, i just dont want to wait until it gets even worse, cause its pretty bad already i think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi Ivy! Welcome to the group. I just wanted to say that I would definatly push for x-rays sooner than 6 months. The head hits the best growth spurt before/around 6 months of age, and if she did need to be in a helmet/band, than that would be the ultimate time to have her in one for fast correction! Although she would see improvements if in a helmet later than that. My son was 8 months when he got his DOCband, and he's still in it for just 2 more weeks, and he's had great results! Do post some pics of her so we can check her out, that would help! Lacy Waydon 11 months DOCband since 6/20--grad on 10/14 > Hi, my name is Ivy, i have a 4 1/2 month old daughter named Mikayla. > She had her 4month checkup last week and her doc was very concerned > with how flat her head was (and it is very very flat in the back). > He > said he thought it possibly could be cranial stenosis. However, he > wants to wait until her 6 month appointment to get x-rays, to see if > it > has straightened on its own. I seriously dont think it is going to. > So of course i went home and did research on the internet like crazy > and found that she doesnt seem to have cranial stenosis, but > something > else i had stumbled on which was plagiocephaly. I read stories of > children who went through it, and thats where i found this message > board, so i thought i would read some posts and look at pics of some > kids, and i swear on some of them i feel like i am looking at my own > daughter. I am wondering if i post some pics if maybe some of you > can > tell me whether i am overreacting or i have reason to be concerned > about her waiting 2 more months.....I just think that the sooner we > can > find out whats going on, the sooner we can get things going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Ivy, Welcome. What your ped is concerned with is called craniosynostosis, and it is where the sutures in the skull have fused together. This can be a dangerous ailment that can result in surgery and should be ruled out, as soon as possible. An x-ray or cat scan can tell. If it is ruled out then what your baby has sounds like a bad case of brachycephaly and it can be treated with helmet/band therapy. I would contact the ped and tell them that you want an x-ray or scan set up now because if the cranio is ruled out you are at the optimum time for the best results from helmet/band therapy. Here is a website that can help you understand things a bit better. www.cranialtechnologies.com CAROLG > Hi, my name is Ivy, i have a 4 1/2 month old daughter named Mikayla. > She had her 4month checkup last week and her doc was very concerned > with how flat her head was (and it is very very flat in the back). > He > said he thought it possibly could be cranial stenosis. However, he > wants to wait until her 6 month appointment to get x-rays, to see if > it > has straightened on its own. I seriously dont think it is going to. > So of course i went home and did research on the internet like crazy > and found that she doesnt seem to have cranial stenosis, but > something > else i had stumbled on which was plagiocephaly. I read stories of > children who went through it, and thats where i found this message > board, so i thought i would read some posts and look at pics of some > kids, and i swear on some of them i feel like i am looking at my own > daughter. I am wondering if i post some pics if maybe some of you > can > tell me whether i am overreacting or i have reason to be concerned > about her waiting 2 more months.....I just think that the sooner we > can > find out whats going on, the sooner we can get things going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi Ivy, Welcome to the group! The younger a baby is banded the better and faster the correction. A baby doesn't get banded " over night " there are steps that need to be taken. If you wait until she's 6 1/2 months there's a good chance she won't get into a band until she' 7 1/2 months 8 months old. I'd request x-rays be done to rule out craniosynostosis. Once that came back negative I'd ask for a script for a band. Are you located near any Cranial Tech offices? They offer free evaluations. Here is their web site: Http://www.cranialtech.com Click on clinic locations. Good luck and please keep us posted. > Hi, my name is Ivy, i have a 4 1/2 month old daughter named Mikayla. > She had her 4month checkup last week and her doc was very concerned > with how flat her head was (and it is very very flat in the back). > He > said he thought it possibly could be cranial stenosis. However, he > wants to wait until her 6 month appointment to get x-rays, to see if > it > has straightened on its own. I seriously dont think it is going to. > So of course i went home and did research on the internet like crazy > and found that she doesnt seem to have cranial stenosis, but > something > else i had stumbled on which was plagiocephaly. I read stories of > children who went through it, and thats where i found this message > board, so i thought i would read some posts and look at pics of some > kids, and i swear on some of them i feel like i am looking at my own > daughter. I am wondering if i post some pics if maybe some of you > can > tell me whether i am overreacting or i have reason to be concerned > about her waiting 2 more months.....I just think that the sooner we > can > find out whats going on, the sooner we can get things going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi Ivy, Welcome to the group! The younger a baby is banded the better and faster the correction. A baby doesn't get banded " over night " there are steps that need to be taken. If you wait until she's 6 1/2 months there's a good chance she won't get into a band until she' 7 1/2 months 8 months old. I'd request x-rays be done to rule out craniosynostosis. Once that came back negative I'd ask for a script for a band. Are you located near any Cranial Tech offices? They offer free evaluations. Here is their web site: Http://www.cranialtech.com Click on clinic locations. Good luck and please keep us posted. > Hi, my name is Ivy, i have a 4 1/2 month old daughter named Mikayla. > She had her 4month checkup last week and her doc was very concerned > with how flat her head was (and it is very very flat in the back). > He > said he thought it possibly could be cranial stenosis. However, he > wants to wait until her 6 month appointment to get x-rays, to see if > it > has straightened on its own. I seriously dont think it is going to. > So of course i went home and did research on the internet like crazy > and found that she doesnt seem to have cranial stenosis, but > something > else i had stumbled on which was plagiocephaly. I read stories of > children who went through it, and thats where i found this message > board, so i thought i would read some posts and look at pics of some > kids, and i swear on some of them i feel like i am looking at my own > daughter. I am wondering if i post some pics if maybe some of you > can > tell me whether i am overreacting or i have reason to be concerned > about her waiting 2 more months.....I just think that the sooner we > can > find out whats going on, the sooner we can get things going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Welcome . Sorry about your diagnosis, but glad you found us. This article is full of info on the diagnosing of RA: http://www.aafp.org/afp/20050915/1037.html How was your RA diagnosed? a On Oct 4, 2005, at 9:56 AM, cindy_4798 wrote: > Hello everyone, Im cindy, 44, single mother of an awsome 7 yr old girl > and 3 cats. I have fm, and I think ra, have been dx with add and > as of > now the only med i am on is ritalin. I recently became aware of a > close relative that was dx with ra, and I'm trying to find out what > the > protocol is for being dx with it. I was dx with fm over 10 years ago, > but the last 2 I have seen a dramatic increase in pain and > fatigue. It > used to be primarily muscle type pain, but my ankle and knee joints > have practically crippled me in the last 6 months. I also have bone > pain in my shins which I am going to address at my next appt which is > Friday. > I have also suffered from depression most of my adult life, and now I > am entering perimenopause to add fuel to the fire. (sigh) : ( > I had thyroid surgery in april, which turned out to be non-malignant > lesion, thank goodness. I am un-employed, and have not been able so > far to qualify for disability, but am going to keep trying. > The last couple weeks, I have been in so much pain, to the point of > tears. I must tell you I have a very high pain thresh hold after 10 > years of illness, but I am desperate to find something that will help. > Any advice/info you can share would be helpful. Moral support is also > needed. T > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi , My name is also and I am 36 with RA diagnosed when I was 14, so I know what your going through. But it sounds to me like your rummy is not doing his/her job if you are in that much pain. I'm not saying that I don't have pain but it is miner compared to what I here out there. I have been seeing the same rummy for about 18 years and he is awsome. My visits are once every 2 months and thats just to have blood work pretty much and so far no probs.If by any chance your in the LA, Ca. area you might want to look him up. Well hope to hear from you again and welcome. Dots (Dr. Gelfand (562) 861-0954) cindy_4798 <cindy_4798@...> wrote:Hello everyone, Im cindy, 44, single mother of an awsome 7 yr old girl and 3 cats. I have fm, and I think ra, have been dx with add and as of now the only med i am on is ritalin. I recently became aware of a close relative that was dx with ra, and I'm trying to find out what the protocol is for being dx with it. I was dx with fm over 10 years ago, but the last 2 I have seen a dramatic increase in pain and fatigue. It used to be primarily muscle type pain, but my ankle and knee joints have practically crippled me in the last 6 months. I also have bone pain in my shins which I am going to address at my next appt which is Friday. I have also suffered from depression most of my adult life, and now I am entering perimenopause to add fuel to the fire. (sigh) : ( I had thyroid surgery in april, which turned out to be non-malignant lesion, thank goodness. I am un-employed, and have not been able so far to qualify for disability, but am going to keep trying. The last couple weeks, I have been in so much pain, to the point of tears. I must tell you I have a very high pain thresh hold after 10 years of illness, but I am desperate to find something that will help. Any advice/info you can share would be helpful. Moral support is also needed. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Sara, There is a term called " Sticky Sutures " which can make it difficult to tell weather the sutures are truly closed or not, so the scan is the best next step. Try not to worry too much until you have more concrete evidence from the scan. Is the baby's head misshaped at all? There is a website called Capps kids that will also be of help to you, www.cappskids.org they deal with craniosynostosis as well as plagiocephaly. Not all babies with closed or sticky sutures require surgery, so try to relax until you are sure what to worry about. Please let us know how the scan goes. I wish you the best of luck. CAROLG > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Sara, There is a term called " Sticky Sutures " which can make it difficult to tell weather the sutures are truly closed or not, so the scan is the best next step. Try not to worry too much until you have more concrete evidence from the scan. Is the baby's head misshaped at all? There is a website called Capps kids that will also be of help to you, www.cappskids.org they deal with craniosynostosis as well as plagiocephaly. Not all babies with closed or sticky sutures require surgery, so try to relax until you are sure what to worry about. Please let us know how the scan goes. I wish you the best of luck. CAROLG > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hi Sara, My dd had x-rays done and then had to have a ct-scan done as well. Everything turned out ok, she just had plagio and not craniosynostosis. I was terrified that she did though. Your son will be in my prayers. Good luck w/the ct-scan please let us know how it goes and what the results are. > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hi Sara, My dd had x-rays done and then had to have a ct-scan done as well. Everything turned out ok, she just had plagio and not craniosynostosis. I was terrified that she did though. Your son will be in my prayers. Good luck w/the ct-scan please let us know how it goes and what the results are. > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hi Sara, I see that Carol and have already replied to you. Welcome to the group, we look forward to hearing from you. Natasha Atlanta, GA > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hi Sara, I see that Carol and have already replied to you. Welcome to the group, we look forward to hearing from you. Natasha Atlanta, GA > Hi my name is Sara My Ds is 9months old and at 9month appt Dr thought > Ds head was small and soft spots may be closed went for an xray and > the xray came back with not real sure if soft spots are closed. So > this friday we are going to get a Ct scan done. I am very nervus. > Wondering what info you all can give me. > > thank you > Sara and logan 12-27-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Hi Darlene! Welcome! I hope this group provides you with as much emotional support and valuable information as it has me. Just having some place to vent has helped me cope so much better. Blessings to you, laura dorsch03 <dorsch03@...> wrote:Hi. My name is Darlene, I am 54, and I was diagnosed with RA 16 months ago. I had had a lot of pain in my left wrist for about a year. Mmy primary Dr. tried different meds. For a long time he thought my porblem was tenditnitous (?), However, after trying several pain releavers, nothing which I may add worked, he sent me to see a Rhumetologist. When I called to make an apppointment, he told me to have blood tests done before I went to him.Before I had made the appointment, one finger on my right hand bent inward toward my palm. This terrified me. I had no idea what had happened. There was no warning. I had the tests and when I had my appointment with him, he told me then that I had RA. I did not know much about RA. My mother had arithritis,however. He immediately started me on Prednisone for 2 weeks and then come back to him and we would talk stratedgy. He said the Prednisone would work quickly, and it did. He then put me on methotrexate. First 4 a week, then 6 a week, and then 8 a week. This did not work as well as I had hoped. He then added Arava. Before the Arava, I was having flare ups once a week. After 1 month on the Arava, I have had no flare ups. I have been on this combo for 5 months and it seems to be working for now. When I was first diagnosed, we had just had 2 beautiful grandchildren in 4 months. I was totally unable to hold them, which greatly depressed me. I still have to be careful, as I never know if my hands will fail me. I know there is no cure, but I only hope to take care of our family, we still have a 13 yo in the house, and enjoy the grandchildren, there are 5. It has taken its toll on me though. I get tired so quickly. I also have Thyroid problems, so I know that doesn't help with being tired.Some days its just all I can do to get to 9PM. My family tries, but they don't understand what I go through daily. I am so blessed to have found this group. Thank you for listening, didn't mean to go on so. It's so hard for me, I have always been healthy and never had to rely on meds just to go on. Again, thank you for being there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 Congrats on your adoption. We also adopted from China last year. Our daughter will be finishing her third band today. She started her second band at 14 months and our OT thought she might be 1-2 months older. You are great parents to pursue this issue. I wish you much luck. Where is your daughter from? Ours is from Dianbai in the Guangdong province. Regards, Jenni mom to Lilly Faye & Mike <chinadopt@...> wrote: Hi Everyone, Wow... there really is a group for EVERYTHING! My name is Faye and I am mom to an amazing 14 month old little girl named Camille who we adopted from China this past summer. Camille came to us with a shaved head which is flat in the back on the right side. I wasn't too concerned about it and figured it wouldn't be noticable once her hair grew in. I have noticed over the past several weeks that her hair growth has made the flat spot more noticable and I even had a woman in the grocery store ask me what happened to her head. Through internet research, I found out about positional plagiocephaly, and I finally was able to get an appointment with a doctor at Children's hospital for a consultation. I am still new at this and learning a lot. Our appointment is not until November 23, which seems like a long time from now. One of my major questions is, how old is too old for a child to be treated without surgery? We were told Camille was born in August 2004, but my pediactrician has her doubts and thinks Camille may actually be younger. Thanks in advance for your advice and expertise. Faye in NJ FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 Congrats on your adoption. We also adopted from China last year. Our daughter will be finishing her third band today. She started her second band at 14 months and our OT thought she might be 1-2 months older. You are great parents to pursue this issue. I wish you much luck. Where is your daughter from? Ours is from Dianbai in the Guangdong province. Regards, Jenni mom to Lilly Faye & Mike <chinadopt@...> wrote: Hi Everyone, Wow... there really is a group for EVERYTHING! My name is Faye and I am mom to an amazing 14 month old little girl named Camille who we adopted from China this past summer. Camille came to us with a shaved head which is flat in the back on the right side. I wasn't too concerned about it and figured it wouldn't be noticable once her hair grew in. I have noticed over the past several weeks that her hair growth has made the flat spot more noticable and I even had a woman in the grocery store ask me what happened to her head. Through internet research, I found out about positional plagiocephaly, and I finally was able to get an appointment with a doctor at Children's hospital for a consultation. I am still new at this and learning a lot. Our appointment is not until November 23, which seems like a long time from now. One of my major questions is, how old is too old for a child to be treated without surgery? We were told Camille was born in August 2004, but my pediactrician has her doubts and thinks Camille may actually be younger. Thanks in advance for your advice and expertise. Faye in NJ FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
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