Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Hi everyone, I thought it about time I introduced myself to you all. I have been on the list for about three weeks soaking up all ya'lls good advice. My name is , I am 52 years old, 5'2 " if I haven't shrunk LOL gotta check that. As of yesterday I weighed 136 and 31% body fat when I officially began the BFL challenge. My goal is to lose down to 115 - 118 and be able to fit into a size 5. My hubby took the dreaded before photos last night. Can someone that has completed a challenge tell me if I need to get the film processed right away. I have yet to receive my competition packet which was mailed on 12/19 so I don't know all the rules. I have been doing the weights and cardio for a month trying to learn them all and when I started I weighed 144 so I have lost some, yea! But just started the eating part and supplements yesterday. I have noticed I feel sleepy and tired since I started the eating part, are any of you experiencing this? If there is someone in this group that is near my age and needs to lose around the same as I, and would like to be email buddies feel free to email me at jc4sunny1107@.... Thanks for all the great advice. Good luck everyone! Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 In a message dated 1/7/2003 3:13:38 PM Central America Standard Time, jc4sunny1107@... writes: > I have noticed I feel sleepy and tired since I started > the eating part, are any of you experiencing this? , Me!! I am so tired! I didnt say anything because I thought I was the only one that isnt bursting with energy. I dont know how long it will last, but hoepfully soon. I could go to sleep right here! Oh and welcome to the group! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Thanks Amy, I guess this must just be a side effect of all the carbs? Glad to know I am not alone, lol thanks again > Me!! I am so tired! I didnt say anything because I thought I was the only > one > that isnt bursting with energy. I dont know how long it will last, but > hoepfully soon. I could go to sleep right here! > Oh and welcome to the group! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Thanks so much for letting Amy and I know what to expect. I'm sure I can make it for a week lol, can't wait for the burst of energy! > > I think the bosy just needs time to adjust to all the new physical > challenges we're putting on it...weight training, intense cardio, > actual healthy food!! In my first challenge, I was dragging and > tired for about a week. Then I found myself having more energy than > ever before, at least during the day...at night, I was still ready to > fall into bed by 10 pm. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 In a message dated 1/7/2003 4:05:18 PM Central America Standard Time, jc4sunny1107@... writes: > Thanks so much for letting Amy and I know what to expect. I'm sure I can > make > it for a week lol, can't wait for the burst of energy! > Yes, but this is my fourth week! I am hoping maybe it will get better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Sorry Amy, I did not know. Are you taking any supplements? > Yes, but this is my fourth week! I am hoping maybe it will get better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 I think the bosy just needs time to adjust to all the new physical challenges we're putting on it...weight training, intense cardio, actual healthy food!! In my first challenge, I was dragging and tired for about a week. Then I found myself having more energy than ever before, at least during the day...at night, I was still ready to fall into bed by 10 pm. > In a message dated 1/7/2003 3:13:38 PM Central America Standard Time, > jc4sunny1107@a... writes: > > > > I have noticed I feel sleepy and tired since I started > > the eating part, are any of you experiencing this? > > , > > Me!! I am so tired! I didnt say anything because I thought I was the only one > that isnt bursting with energy. I dont know how long it will last, but > hoepfully soon. I could go to sleep right here! > Oh and welcome to the group! > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 In a message dated 1/7/2003 8:28:38 PM Central America Standard Time, jc4sunny1107@... writes: > Sorry Amy, I did not know. Are you taking any supplements? > Yes Betalean and just started taking Betagen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Doesn't the betalean give you energy? I am taking betatrim and it gives me some energy, but also makes me have dry mouth. In a message dated 1/7/2003 9:14:44 PM Central America Standard Time, amy0421@... writes: > Yes Betalean and just started taking Betagen. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Lynda, I think the tingling does sound like a pinched nerve. Of course the doctor should rule out any other problems but I know sometimes I get shooting pain up my neck and back. I go to the chiropractor and he really helps me out with it. I don't understand why doctors when they can't come up with any physical problems that are wrong always offer depression medicine. It make me angry. Did you try using some wet heat to help you. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Dear Lynda, Unfortunately, I've had the exact pain you described in your shoulder blades and by your collar bone area. So far all I've been told is they are related to PA. I do have a bad disc in my neck that could aggravating the whole situation, but the collar bone area is very common for pain with PA. My rheumatologist told me that most people have a spot or their whole collar bone area hurts with PA. To prove it, it just reached over and poked me on my lower neck area and I almost kicked him. It was almost like a reflex the pain hurt so bad. So it might all be related to PA. Hopefully, your rheumatologist will be able to ease your mind. I think it's wonderful to hear that you have been so symptom free for so long. I haven't had a real break with this since it hit me almost 6 years ago now. I am finally getting some relief with Arava and right now consider it my golden pill. I've had so many bad side effects from most of the biologics on the market now. I'm glad they help so many people, but they seem to be toxic to my system. One other thing I wanted to mention was the Xanax will probably also help relax the area that hurts. I've also had fibromyalgia for over 20 years now and I don't know if I would have made it without Xanax over the years. I have had my muscles in such bad knots that they actually pinch nerves and cause all kinds of strange symptoms and sensations. I know a lot of people are afraid to take it due to the addiction problems, but I have days when I never take it and used to go weeks. Since my PA has been so bad lately, I've used it more. I can honestly say, I've never felt myself craving a Xanax, but everyone is different. The facial tingling is strange and that does sound like nerve related problems. I know a pinched nerve can cause lots of problems and I was wondering if you have any numbness? Or a feeling like something is going to sleep? Until you get the X-ray's back no one is going to know for sure. Well I mainly wanted to welcome you to our group and I hope you find some answers soon. Hopefully it will let up and you'll be back to your old self in a few days. . Let us know what happens and I hope it's nothing serious and just something as simple as a pulled muscle. Take care, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 -Hi Lynda, sorry you are going through a rough time but it sounds like your docs are really on top of it. I " m glad you will have an MRI and see a specialist. I get bad pa pain in the shoulders and all the way around the collar bone. I also have experienced tingling from meds....I have no idea if this is your problem but it sounds like they will look into it for you. good luck and let us know how you come out with it all, Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Lynda, Welcome. Good to see you've " found " your voice. I think most of us have done a few weeks or months lurking before taking the plunge. You might end up like me, not being able to shut up. Lol Hope you get some joy from the Rheumatologist when you get to see him. It does sound like you may have a bit more going on like pinched nerves. I have had problems with my neck and shoulders but no tingling or anything like that and I am sure in my own mind that it is all PA related. Again, best of luck over the coming weeks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 , Hello and welcome. The first thing to do when you suspect cyclic fevers... keep a log... indicate start and finish days and signs and symptoms.... You need to monitor temp height.... and if the temp is relieved in ANY way with Tylenol and/or Motrin. You will need to do blood tests.... to see if there is an elevation in SED rate... or CRP and see if there is a shift in her WBC diff. These are all indicators. Not sure if your childs fevers run high.... Kids with tend to run very high.... especially when younger... infant and toddler years.... Also the clinical signs are important to track... can asssit in diagnosis and possiblity of genetic disorder vs . God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 , Hello and welcome. The first thing to do when you suspect cyclic fevers... keep a log... indicate start and finish days and signs and symptoms.... You need to monitor temp height.... and if the temp is relieved in ANY way with Tylenol and/or Motrin. You will need to do blood tests.... to see if there is an elevation in SED rate... or CRP and see if there is a shift in her WBC diff. These are all indicators. Not sure if your childs fevers run high.... Kids with tend to run very high.... especially when younger... infant and toddler years.... Also the clinical signs are important to track... can asssit in diagnosis and possiblity of genetic disorder vs . God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 , Definately go see an infectious disease specialist. I'm guessing it could be lots of things that could cause your daughter symptoms. but it sounds like you are on the right track. My son is just newly diagnosed and we are just waitign for him next fever. Liek waiting for the pot to boil. His fevers have run every 17 days and that tiem is now again. I hope I don't see it but I kinda do just to know if it will stay on 17 days so at least I can plan for them. Well as best I can anyway.. Marie Mom to age 10 mo (diagnosis last month) and daughter Madalyn age 9 Mick <daizias@...> wrote: Good morning everyone - My name is , and I just found out about sheerly by accident and I want to look into it more to see if this is what my 5 year old daughter has. Starting about 4 years ago, she had enlarged lymph nodes on her neck. They have been there since she was just over 1 year old, and about every 2 or so months they swell a bit and hurt her. She also develops a fever that coincides with that, and she gets bad canker sores in her mouth, usually at the base of her teeth. Now, I can say that I have always had canker sores, and I always attributed her high repetive fevers to either teething, or some other rampant day care virus. But I accidentally came across mention of , and I am wondering if this might be something to rule in/out. I wanted to run this information by all of you since you are very well acquainted with this syndrome and see if it is something I should pursue. I am not keen on having her blood drawn and CRP and other inflammatory markers checked along with CBCs, but she starts kindergarten next week, and we have already had incidents at day care where she was sent home and not allowed back because of her fever, and I can't have that happen at her new school. If any of you have any opinions, advice, anything, please let me know so I can try to decide what I need to do. Thanks! File - Netiquette Confidentiality and Privacy 1. Postings are often very personal. Any personal information posed by the list members is considered CONFIDENTIAL and should not be shared with any other individuals or any other list. EVERYONE'S privacy is of utmost importance. 2. Please guard the privacy of the persons and content of this list, as you were visiting with a physician. 3. If any individual on the list posts to you privately, do not repost the message to the entire list without first getting their permission. 4. If what you want to post is directed to a single individual vs. the whole list, you should e-mail that person directly. On - you send an e-mail by copy and pasting the email address in the address of your new email, then it will only go to the original poster. If you use your " reply " button, the post will go to the entire list. Please check your " To " and " CC " areas to see exactly who will receive the post. 5. If you are found to be in violation of any of the Netiquette policies, we will write to you off of the list to remind you of these important rules. 6. Anyone who habitually violates policies or breaks confidentiality will be issued an off list warning. Repeated, continual, unrepentant violators will be subject to removal from the list. 7. If any organization, practice, or professional somehow succeed in joining this list under fraudulent misrepresentation, they will be immediately unsubscribed. This message will be sent monthly as a reminder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 , Definately go see an infectious disease specialist. I'm guessing it could be lots of things that could cause your daughter symptoms. but it sounds like you are on the right track. My son is just newly diagnosed and we are just waitign for him next fever. Liek waiting for the pot to boil. His fevers have run every 17 days and that tiem is now again. I hope I don't see it but I kinda do just to know if it will stay on 17 days so at least I can plan for them. Well as best I can anyway.. Marie Mom to age 10 mo (diagnosis last month) and daughter Madalyn age 9 Mick <daizias@...> wrote: Good morning everyone - My name is , and I just found out about sheerly by accident and I want to look into it more to see if this is what my 5 year old daughter has. Starting about 4 years ago, she had enlarged lymph nodes on her neck. They have been there since she was just over 1 year old, and about every 2 or so months they swell a bit and hurt her. She also develops a fever that coincides with that, and she gets bad canker sores in her mouth, usually at the base of her teeth. Now, I can say that I have always had canker sores, and I always attributed her high repetive fevers to either teething, or some other rampant day care virus. But I accidentally came across mention of , and I am wondering if this might be something to rule in/out. I wanted to run this information by all of you since you are very well acquainted with this syndrome and see if it is something I should pursue. I am not keen on having her blood drawn and CRP and other inflammatory markers checked along with CBCs, but she starts kindergarten next week, and we have already had incidents at day care where she was sent home and not allowed back because of her fever, and I can't have that happen at her new school. If any of you have any opinions, advice, anything, please let me know so I can try to decide what I need to do. Thanks! File - Netiquette Confidentiality and Privacy 1. Postings are often very personal. Any personal information posed by the list members is considered CONFIDENTIAL and should not be shared with any other individuals or any other list. EVERYONE'S privacy is of utmost importance. 2. Please guard the privacy of the persons and content of this list, as you were visiting with a physician. 3. If any individual on the list posts to you privately, do not repost the message to the entire list without first getting their permission. 4. If what you want to post is directed to a single individual vs. the whole list, you should e-mail that person directly. On - you send an e-mail by copy and pasting the email address in the address of your new email, then it will only go to the original poster. If you use your " reply " button, the post will go to the entire list. Please check your " To " and " CC " areas to see exactly who will receive the post. 5. If you are found to be in violation of any of the Netiquette policies, we will write to you off of the list to remind you of these important rules. 6. Anyone who habitually violates policies or breaks confidentiality will be issued an off list warning. Repeated, continual, unrepentant violators will be subject to removal from the list. 7. If any organization, practice, or professional somehow succeed in joining this list under fraudulent misrepresentation, they will be immediately unsubscribed. This message will be sent monthly as a reminder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi . My name is . My son is 3 years old and has had periodic fevers since nine months old. My first pediatrician insisted that my son was just susceptible to viruses. I am also a nurse so when I began noticing the distinct pattern I questioned him. He had no more answers for me and would not do any further blood work so I switched doctors. My ped was referred to me by a fellow nurse. I am so glad I did. He was very helpful and willing to listen. I was referred to an ID doc at the Women and Children's Hospital of Buffalo. He was wonderful as well and researched until he finally diagnosed my son with periodic fever disorder. My son was actually the first he had ever officially diagnosed in this area. My advice to you is to keep switching doctors and do not stop until you find someone willing to listen and to help you. No one knows your child better than you and your child alone. Having the medical background also helps (although some docs don't even listen to us). I'm not sure how much you have discovered with your research but there are a few fever disorders not often known of by even doctors. HIDS, TRAPS and FMF are a few. These are genetic disorders and with the right testing can be diagnosed. I do not believe that just because your son does not have mouth sores he is automatically ruled out for . This is a very well known symptom, but as you know all patients with different diseases or disorders can exhibit different symptoms or regularities just for themselves. I wish you luck and if you would like to email me with questions feel free. - son of J.J. 3 years old <threedrescue@...> wrote:I wanted to indtroduce myself and my family to the group. My name is and my son that has (or so we think)is my oldest-Zachery. Zachery is 3, I also have a daughter who is 15 months old named Cadence, and another son named Tristan who is 8 weeks old. I am a nurse and I have been in the medical field for over 8 years and I am also just starting my NNP masters program, so it was a bit suprising to me how much I didnt know about fever conditions. Our ordeal started when Zachery was only 8 weeks old. He recieved his vaccinations and whithin 12 hours he had a fever of 106, was vomitting, and lethargic. After being admitted to the hospital they tried to tell us they though he had meningitis- I strongly doubted this and felt it was completely related to the vaccination. The hospital refused to corrolate the 2 at all, so after 3 days in the hospital his fever subsided and we were sent home. 1 month later he had another fever of 106 that lasted 4 days and he was again admitted to the hospital for those 4 days. They did numerous amounts of blood work on him and told us that he was " just a sick baby with a weak immune system " . So when he got a fever again the next month I called the pediatrician who stated that we just had to learn to deal with a sick child and that we shouldnt let him around other kids because they were making him sick. We dealt with the fevers for the next year and a half just treating him with motrin and tylenol for 4 to 6 days a month. I did a lot of research in the mean time and I was having a hard time getting any solid information about what can cause fevers in children besides the basic information about colds, and certain serious diseases. We never vaccinated him again (as I stronly believe that is what started this for him) and we switched pediatricians. The new Ped did some more tests but said he didnt see any evidence of Zachery having any major disease that would cause cyclical fevers. I asked him about at that time and he basically told us that because Zachery didnt get mouth sores that most likely wasnt the issue, and also that his white blood cell count should go down as well. We were again told that we just had a " sickly child " . We just switched ped's again 2 months ago to a man that seemed more proactive in trying to find the cause for his fevers. Ironically my son skipped July but he just broke out with a fever yesterday. As far as his symptoms it has gotten easier to identify them as most of them he was unable to communicate to us when he was a baby. He of course gets a high fever, complains of his neck, throat, and mouth hurting, sometimes he says his head hurts, and he gets very tired on the 3rd and 4th day. (He acts lethargic on the first 2 days until you give him medicine to bring the fever down and then he acts normal) We have asked to see a ID Specialist but the best one here in the valley was not the nicest person in the world and had told our ped he wouldnt even see us- and this was before any blood work was done. So needeless to say I dont think much of that Dr. and we are currently looking for a different specialist. Zachery 4/02 Cadence 5/04 Tristan 6/05 Apache Jct, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hello . Just a note...my daughter started at age 1 and the mouth sores really didnt appear until 2-3 years old. All the other symptoms were the same as your Zachery. Sue Hegelein Southampton, NJ > I wanted to indtroduce myself and my family to the group. > My name is and my son that has (or so we think)is my > oldest-Zachery. > Zachery is 3, I also have a daughter who is 15 months old named > Cadence, and another son named Tristan who is 8 weeks old. > I am a nurse and I have been in the medical field for over 8 years > and I am also just starting my NNP masters program, so it was a bit > suprising to me how much I didnt know about fever conditions. > Our ordeal started when Zachery was only 8 weeks old. He recieved > his vaccinations and whithin 12 hours he had a fever of 106, was > vomitting, and lethargic. After being admitted to the hospital they > tried to tell us they though he had meningitis- I strongly doubted > this and felt it was completely related to the vaccination. The > hospital refused to corrolate the 2 at all, so after 3 days in the > hospital his fever subsided and we were sent home. 1 month later he > had another fever of 106 that lasted 4 days and he was again > admitted to the hospital for those 4 days. They did numerous amounts > of blood work on him and told us that he was " just a sick baby with > a weak immune system " . So when he got a fever again the next month I > called the pediatrician who stated that we just had to learn to deal > with a sick child and that we shouldnt let him around other kids > because they were making him sick. > We dealt with the fevers for the next year and a half just treating > him with motrin and tylenol for 4 to 6 days a month. I did a lot of > research in the mean time and I was having a hard time getting any > solid information about what can cause fevers in children besides > the basic information about colds, and certain serious diseases. We > never vaccinated him again (as I stronly believe that is what > started this for him) and we switched pediatricians. The new Ped did > some more tests but said he didnt see any evidence of Zachery having > any major disease that would cause cyclical fevers. I asked him > about at that time and he basically told us that because > Zachery didnt get mouth sores that most likely wasnt the issue, and > also that his white blood cell count should go down as well. We were > again told that we just had a " sickly child " . We just switched ped's > again 2 months ago to a man that seemed more proactive in trying to > find the cause for his fevers. Ironically my son skipped July but he > just broke out with a fever yesterday. > As far as his symptoms it has gotten easier to identify them as most > of them he was unable to communicate to us when he was a baby. He of > course gets a high fever, complains of his neck, throat, and mouth > hurting, sometimes he says his head hurts, and he gets very tired on > the 3rd and 4th day. (He acts lethargic on the first 2 days until > you give him medicine to bring the fever down and then he acts > normal) > We have asked to see a ID Specialist but the best one here in the > valley was not the nicest person in the world and had told our ped > he wouldnt even see us- and this was before any blood work was done. > So needeless to say I dont think much of that Dr. and we are > currently looking for a different specialist. > > > Zachery 4/02 > Cadence 5/04 > Tristan 6/05 > Apache Jct, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , Welcome to the group. I think most of us here have a similar story to the one you have described below. My son is 22 months and has been fevering since 10 months. His fevers did not become regular until he was about 14 months - then they started every six weeks. I have been told each time it is a virus - but the last time I went armed with what I knew from this group, and I spoke up. One doctor in the office had never even heard of , and the other doctor said she had seen a couple cases, but the children had to be older. That night I had to take my son to the emergency clinic and the doctor there had experience with , but said that he didn't think my son had it because his lymph nodes were not swollen. He did however have canker sores and fever blisters. I later read an article that stated the percentage of patients in a study that presented with each common symptom and swollen lymph nodes were the least sited symptom, and canker sores was somewhere in the 70% range. I just wanted to add my thoughts that (as you know) this is a rare conditions that doctors are not familar with it. Most doctor's I think would like to err on the side of common conditions and don't want to believe they may be dealing with an exceptional child. I have an appointment to go see the ID doc next Friday. I called and found one myself that I know has had expericence with children with periodic fevers. I then called my PED back and requested a referral. I don't now how it will go next Friday, but I am hoping that it will be a step in the right direction. Since you are in Arizona you may want to check out some of the hospitals in the major metro areas and search on their websites for PED ID docs. Then call their office and see if they are familiar with these conditions. If your insurance won't give you a referral you may have to pay out of pocket. Best of luck to you and your family, Mom to Al-hieser, 22 months San Francisco <threedrescue@...> wrote: I wanted to indtroduce myself and my family to the group. My name is and my son that has (or so we think)is my oldest-Zachery. Zachery is 3, I also have a daughter who is 15 months old named Cadence, and another son named Tristan who is 8 weeks old. I am a nurse and I have been in the medical field for over 8 years and I am also just starting my NNP masters program, so it was a bit suprising to me how much I didnt know about fever conditions. Our ordeal started when Zachery was only 8 weeks old. He recieved his vaccinations and whithin 12 hours he had a fever of 106, was vomitting, and lethargic. After being admitted to the hospital they tried to tell us they though he had meningitis- I strongly doubted this and felt it was completely related to the vaccination. The hospital refused to corrolate the 2 at all, so after 3 days in the hospital his fever subsided and we were sent home. 1 month later he had another fever of 106 that lasted 4 days and he was again admitted to the hospital for those 4 days. They did numerous amounts of blood work on him and told us that he was " just a sick baby with a weak immune system " . So when he got a fever again the next month I called the pediatrician who stated that we just had to learn to deal with a sick child and that we shouldnt let him around other kids because they were making him sick. We dealt with the fevers for the next year and a half just treating him with motrin and tylenol for 4 to 6 days a month. I did a lot of research in the mean time and I was having a hard time getting any solid information about what can cause fevers in children besides the basic information about colds, and certain serious diseases. We never vaccinated him again (as I stronly believe that is what started this for him) and we switched pediatricians. The new Ped did some more tests but said he didnt see any evidence of Zachery having any major disease that would cause cyclical fevers. I asked him about at that time and he basically told us that because Zachery didnt get mouth sores that most likely wasnt the issue, and also that his white blood cell count should go down as well. We were again told that we just had a " sickly child " . We just switched ped's again 2 months ago to a man that seemed more proactive in trying to find the cause for his fevers. Ironically my son skipped July but he just broke out with a fever yesterday. As far as his symptoms it has gotten easier to identify them as most of them he was unable to communicate to us when he was a baby. He of course gets a high fever, complains of his neck, throat, and mouth hurting, sometimes he says his head hurts, and he gets very tired on the 3rd and 4th day. (He acts lethargic on the first 2 days until you give him medicine to bring the fever down and then he acts normal) We have asked to see a ID Specialist but the best one here in the valley was not the nicest person in the world and had told our ped he wouldnt even see us- and this was before any blood work was done. So needeless to say I dont think much of that Dr. and we are currently looking for a different specialist. Zachery 4/02 Cadence 5/04 Tristan 6/05 Apache Jct, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Mike- I take it you're in Salt Lake City, Utah? Or are there more Primary Children's Hospitals in the country?? I'd just like to know how it goes- if the T & A is successful a few months down the road. I just took my daughter in to ID at Primary's back in July and we're on the Cimetadine routine for now, but she's had two fevers since starting the medication seven weeks ago. They've been less severe in temperature and duration, but I'd still like to find more of a long term solution. She's just barely starting kinderarten, and I hate to think of the battles to come with her missing two or three days a month due to this. Thanks- Estelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2009 Report Share Posted December 5, 2009 Hi, my name is Jennie. The genetic testing recently came back that my 3 yr old, Jedidiah, has CMT 1A. Though, I didn't really need the tests to know it. (The doc's did) Jedidiah struggles with his balance and leg and foot pains. He is 47 months, but has the gross motor skills of a 34 month old. He started Physical Therapy a couple months ago, and has orthotics for his shoes. We have been to several neurologists, but they all say the same thing- it won't affect him til he's older. They don't listen to me when I tell them it affects him NOW. How would they know? They don't live with him and see his pain when he sometimes just falls down because of the pain in his legs and feet; and their hearts don't break when he tries desperately to do something and can't. His fine motor and mental development are at and above target age. Jedidiah's father, tells me not to worry about it, just to tell Jedidiah to man up and deal. I know there is no cure; I know it is about managing the symptoms. What I don't know is how to help my little boy and if I am doing enough. No doctors or even his PT know much about the disease, and either don't want to learn or don't care to find out how to help or the proper pt. The daycare left his shoes on one day and didn't take them off, so when I picked him up to take him to pt, his feet were raw and red from the orthotics. I took his shoes off in the car, and when we got there, his PT saw his feet, and yet still made him jump on a trampoline (or attempt to); the whole time my son was bawling (he rarely cries). Needless to say, I am in the middle of switching PT's. However, the new one doesn't seem to know a thing about CMT either. Just waiting to see if she is willing to learn. Aargh! Guess I've been rambling on... Would like to know if anyone has ideas, suggestions, etc... Quote Link to comment Share on other sites More sharing options...
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