Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Wow Lori your little girl has had a challenging history. My prayers are with you. I think your doctors will look at everything going on in her body. as you read here research the file section and links. There are many disorders which may cause periodic fevers. Her medication history is similar to drugs used at the NIH for fever disorders. For children who have significant PFS (periodic fever syndromes) I have seen Methotrexate and Remicade used to assist with the fevers. I have opted not to use them with my son at this point. These disorders will overlap. Many of the kids here were initially mis-diagnosed with JRA and later changed to one of the PFS. I think the docs were hasty with the other kids as they had no boney or cartilage changes. My cousins daughter has JRA and also suffers from the uveitis issues. Please feel free to ask questions. Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Lori - I just wanted to respond because we also see the rheumatologists and infections disease doctors at Stanford - and, as it sounds like you are, we have been very pleased. We worked a lot with Dr. Lee and Dr. Gantz. My daughter's situation is not similar to yours, so I don't have much advice. My daughter had a couple of fevers around 10 months old (some with sore in her mouth), that the doctors couldn't explain. Then, after she turned 1 year old, she had a really bad fever that landed her at Stanford. At that point she also had an enlarged liver and spleen. They tested her for malignancies as well (bone marrow and liver biopsy). The doctors thought Systemic JRA was a strong possibility, but she never developed the arthritis. She was on prednisone, which brought all her symptoms under control. We weaned her off of that, and once she was completely off, she started getting fevers again. This time they were short (1- 2days) and controlled, no other symptoms. We put her on naprosyn, which seemed to help and possibly be why they were short and controlled. We tested her for the genetic fever syndroms (which the doctors at Stanford supported), and she tested postivie for one of the FMF symptoms. We tried Colchicine, but it didn't help. We eventually took her of all of the meds, and thankfully, since then, my daughters fevers have pretty much " disappeared " over the last 10 months or so, so we are hoping she's over whatever she had going on. The doctors at Stanford also helped us get into the NIH study, which was helpful and helped put our minds at ease. With your daughter's situation, I can't help but to wonder if its a reaction to being on the immune suppressive medications. That her immune system is readjusting? Are you also a member of the JRA group? If so, you may want to try posting there and seeing if any of the folks there have experienced anything similar after weaning off similar medications. By the way, its great to hear that her Poly JRA is under control! Good luck and sorry I couldn't be more helpful. I understand how hard it is to see your young child go through so much at an early age. But they are troopers and stronger than we think - I know I get my strength from my daughter. am (mom to Layla) > > Hello all, > > My daughter, Sammy, is 6.5 years old, and has been having periodic fevers > and other symptoms (mild mouth sores, enlarged tonsils, swollen lymph > nodes, abdominal pain, fatigue) for about five months. Initially, the fevers > were occurring about every two weeks, and would last about 24 hours or less. > She'd get tired in the afternoon, start running a pretty high fever (102-103) > by dinner, and then be pretty much back to normal the next day. This past > week, the fevers lasted closer to five days, and she was really wiped out. > Sunday the fever left and her energy and appetite quickly ramped up. By Monday > she was back to going full speed all day and eating everything in sight. > > She was diagnosed with the autoimmune diseases pauciarticular juvenile > rheumatoid arthritis (JRA) and uveitis four years ago, shortly before her third > birthday. Up until recently, she was on the immunosuppressive RA drug, Humira, > which she had been on for two years, and she was on a similar drug, > Remicade, for a year before that. Because these drugs increase a patient's risk for > lymphoma, when her rheumatologist noticed enlarged lymph nodes in her neck in > March, Sammy was immediately tested for malignancy (spinal tap, bone marrow > biopsy, lymph node biopsy) as well as many possible infectious diseases. > Everything came back negative, thank God, but while we are trying to figure out > what's behind these latest symptoms, she has been taken off all systemic > drugs to allow her immune system to function without suppression. > > Another possible data point -- she was taken off of the NSAID Naprosyn > around Christmas, and the DMARD Methotrexate at the end of February, shortly > before the fevers began. She had been on both of these drugs pretty much > continuously since the JRA and uveitis were diagnosed four years ago. We were in the > process of trying to wean her off all the medications to see if her uveitis > had gone into remission. Since coming off the Humira, the uveitis has > returned, and is being treated topically for the time being with steroid drops. > > She has not yet been diagnosed with anything, but while doing my own > research I discovered and was struck by how well the symptoms matched up with > what Sammy has been experiencing. I talked to her rheumatologist about it > today, and while she is familiar with (she treats other kids for it), she > hasn't really been thinking along those lines given Sammy's other autoimmune > diseases and the fact that she has been immunosuppressed for so long. We > see infectious disease specialists next week, who also see kids with , and > Sammy's rheumatologist has encouraged me to discuss it with them. One > possibility is that we will try Cimetidine to see if it helps, since there isn't > really any risk to that. We will also continue testing her for other > autoimmune disorders. > > I am so glad to have found this group, as I was feeling very frightened and > frustrated. Sammy has been through an incredible amount in her short life > with the JRA, uveitis, and uveitis-related complications (cataract and > glaucoma). Despite all the medications and surgeries she has been through, she is a > very cheerful, energetic little girl, which is why it's so hard to see her so > uncharacteristically subdued when these fevers hit. I am trying to remain > hopeful that what's behind this latest challenge is indeed that will > respond to something relatively simple like Cimetidine, prednisone, or > tonsillectomy. We are fortunate to have access to top-notch pediatric > rheumatologists and infectious disease specialists at Stanford University's Lucile Packard > Children's hospital, and I'm grateful for that. > > Anyway, that's my LONG introduction! Thank you all for sharing your > experiences. It is helping me gather a lot of information that I am preparing to > take to our appt. next week. If any of you have experience with in > conjunction with autoimmune diseases like JRA, I'd really appreciate hearing from > you. (Sammy's rheumatologist has not had any patients with this experience.) > > Wishing all our children good health, > > --Lori Toomey, mom to Sammy (6.5 years old, JRA, uveitis, ?) > Cupertino, CA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 We are currently using Methotrexate and Infliximab at the NIH for our 7yr old son, Nino. This is after many drugs have been tried and failed. There are down sides, many...to all of these toxic medications, but...in our situation, it is giving him QUALITY days...Prayers are sent your way...Lori(Nino's Mom) Fran Bulone <fbulone@...> wrote: Wow Lori your little girl has had a challenging history. My prayers are with you. I think your doctors will look at everything going on in her body. as you read here research the file section and links. There are many disorders which may cause periodic fevers. Her medication history is similar to drugs used at the NIH for fever disorders. For children who have significant PFS (periodic fever syndromes) I have seen Methotrexate and Remicade used to assist with the fevers. I have opted not to use them with my son at this point. These disorders will overlap. Many of the kids here were initially mis-diagnosed with JRA and later changed to one of the PFS. I think the docs were hasty with the other kids as they had no boney or cartilage changes. My cousins daughter has JRA and also suffers from the uveitis issues. Please feel free to ask questions. Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Lori! Earlier, I responded too soon. Your story sounds similar to ours, and JRA was suspected in the early days...PLEASE remain hopeful....there are many forms of PFS that are being discovered each and every day. The researchers at the NIH are fabulous at what they do. Good luck in our journey...please keep in touch! Lori (Nino's Mom) LoriToomey@... wrote: Hello all, My daughter, Sammy, is 6.5 years old, and has been having periodic fevers and other symptoms (mild mouth sores, enlarged tonsils, swollen lymph nodes, abdominal pain, fatigue) for about five months. Initially, the fevers were occurring about every two weeks, and would last about 24 hours or less. She'd get tired in the afternoon, start running a pretty high fever (102-103) by dinner, and then be pretty much back to normal the next day. This past week, the fevers lasted closer to five days, and she was really wiped out. Sunday the fever left and her energy and appetite quickly ramped up. By Monday she was back to going full speed all day and eating everything in sight. She was diagnosed with the autoimmune diseases pauciarticular juvenile rheumatoid arthritis (JRA) and uveitis four years ago, shortly before her third birthday. Up until recently, she was on the immunosuppressive RA drug, Humira, which she had been on for two years, and she was on a similar drug, Remicade, for a year before that. Because these drugs increase a patient's risk for lymphoma, when her rheumatologist noticed enlarged lymph nodes in her neck in March, Sammy was immediately tested for malignancy (spinal tap, bone marrow biopsy, lymph node biopsy) as well as many possible infectious diseases. Everything came back negative, thank God, but while we are trying to figure out what's behind these latest symptoms, she has been taken off all systemic drugs to allow her immune system to function without suppression. Another possible data point -- she was taken off of the NSAID Naprosyn around Christmas, and the DMARD Methotrexate at the end of February, shortly before the fevers began. She had been on both of these drugs pretty much continuously since the JRA and uveitis were diagnosed four years ago. We were in the process of trying to wean her off all the medications to see if her uveitis had gone into remission. Since coming off the Humira, the uveitis has returned, and is being treated topically for the time being with steroid drops. She has not yet been diagnosed with anything, but while doing my own research I discovered and was struck by how well the symptoms matched up with what Sammy has been experiencing. I talked to her rheumatologist about it today, and while she is familiar with (she treats other kids for it), she hasn't really been thinking along those lines given Sammy's other autoimmune diseases and the fact that she has been immunosuppressed for so long. We see infectious disease specialists next week, who also see kids with , and Sammy's rheumatologist has encouraged me to discuss it with them. One possibility is that we will try Cimetidine to see if it helps, since there isn't really any risk to that. We will also continue testing her for other autoimmune disorders. I am so glad to have found this group, as I was feeling very frightened and frustrated. Sammy has been through an incredible amount in her short life with the JRA, uveitis, and uveitis-related complications (cataract and glaucoma). Despite all the medications and surgeries she has been through, she is a very cheerful, energetic little girl, which is why it's so hard to see her so uncharacteristically subdued when these fevers hit. I am trying to remain hopeful that what's behind this latest challenge is indeed that will respond to something relatively simple like Cimetidine, prednisone, or tonsillectomy. We are fortunate to have access to top-notch pediatric rheumatologists and infectious disease specialists at Stanford University's Lucile Packard Children's hospital, and I'm grateful for that. Anyway, that's my LONG introduction! Thank you all for sharing your experiences. It is helping me gather a lot of information that I am preparing to take to our appt. next week. If any of you have experience with in conjunction with autoimmune diseases like JRA, I'd really appreciate hearing from you. (Sammy's rheumatologist has not had any patients with this experience.) Wishing all our children good health, --Lori Toomey, mom to Sammy (6.5 years old, JRA, uveitis, ?) Cupertino, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi Your docs are testing appropriately! It usually takes up to a year for a MORE accurate diagnosis. With symptoms that your child is having including the relatively severe abdominal pain they need to look into disorders such as Chron's disease.. And other unusual diseases aside from PFS's. The genetic studies are VERY important too. Where do you live? If you are in the NY area, I would DEFINITELY recommend going to NIH. It takes a while to get the appointment, but contacting Plass the pediatric research nurse will get the ball rolling. You will need to gather his pertinent medical records, a few showing the elevation with CRP, and if his WBC's elevate get copies of some of those records. Any other changes in differential should be sent along with any Immunoglobulins and Complement studies that most likely have been done. Some of the genetic periodic fever disorders have intense colon and abdominal involvement. And note that a child can still have one of the PFS that are genetic without having an actual mutation. This is why it is so difficult sometimes to diagnose. Also get either your Pediatrician or the Specialist to write a summary letter to Dr. Kastner the director indicating the fever pattern and their conclusions. Fax ALL of this to along with the paperwork she will send you when you contact her. plassn@... The research group really knows the most about all the fever disorders. They are wonderful. It takes anywhere from 3-6 months to get a return call to set up an appointment once they have your information. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 Your story sounds all too familiar and distresing. I am sorry you and your family are going through this....Dr. Brandt Groh and Dr. Barbara Ostrov are wonderful PFS docs at hershey Medical Center, Hershey Pennsylvania. Where are you located? Dr. Groh actually serves as the VP on The Nino Fund-PSHMC. They are wonderful. Also, you are in great hands if you can get into the NIH-our son Nino has undergone a colonoscopy every year for the last three years, it is a good to find out what's going on, especially if your son is having constipation...I know the tests get to be incredibly hard on your child and the family, but never loose hope. So much is being learned and tested on the PFS's....our children truly are heroes and are paving the way for other kids..... God Bless. Lori Todaro loropallo <loropallo@...> wrote: Hello, I have an 8 year old son. He has been having these fevers for at least a year and a half. For the first year every 4 weeks I would be in the Doctors office. My son would be lethargic with fevers up to 106'F. He would complain of leg pain, throat pain, headache & constipation. He would get very whiney. Each time I was told it was viral and sent home. Each time a strep test would be done and come back negative. After a full year of this I finally realized that the fever was cyclical like a menstrual period, always showing itself in the last week of the month or first week of the month. After doing some research and finding this message board I raised the question to the Practice of my son having periodic fever syndrome. They thought I was crazy until I dropped off reports and data. They then sent me to a pediatric Rheumatology department of a teaching hospital. For the last 6 months I have been going through tests. At one point the pediatrician thought he was having appendicitis. He was rushed to the ER and after CT scan results were complete all was fine except for some intestinal inflammation. Next he was sent for upper GI series & Lower bowl follow through, all was fine. Now they are recommending a colonoscopy... How many tests do our kids need to go though before a diagnosis? Wouldn't it be easier & quicker to just do the genetic testing to identify the genes in question? Can anyone tell me the blood indicators that identify Periodic Fever Syndrome? My son's CRP levels are high, C-Reactive and his THS levels are off. I'm waiting for his imuniglobin levels. In the past the pediatricians thought he had thalassemia because his hemoglobin count was low. Any feedback would be greatly appreciated. Is it worth it to contact the NIH in Bethesda, MD? I don't know of any other place that is Active in Periodic Fever Syndrome in the Tri-state area in the North East. Can anyone recommend a good doctor in the Tri-state area that is on the cutting edge of research on Periodic Fever Syndome? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 it's me again....Fran's response clearly represents our 7 year old son. He does have a form of PFS-STILL undiagnosed-as a result of not finding the mutation, but not from the lack of trying. However, colitis was found and the beginning stages of Crohn's-common in some genetic PFS....also, his response to the treatment, methotrexate and Infliximab has pointed them(NIH)in certain areas too. Be aggressive, and always have HOPE! Fran Bulone <fbulone@...> wrote: Hi Your docs are testing appropriately! It usually takes up to a year for a MORE accurate diagnosis. With symptoms that your child is having including the relatively severe abdominal pain they need to look into disorders such as Chron's disease.. And other unusual diseases aside from PFS's. The genetic studies are VERY important too. Where do you live? If you are in the NY area, I would DEFINITELY recommend going to NIH. It takes a while to get the appointment, but contacting Plass the pediatric research nurse will get the ball rolling. You will need to gather his pertinent medical records, a few showing the elevation with CRP, and if his WBC's elevate get copies of some of those records. Any other changes in differential should be sent along with any Immunoglobulins and Complement studies that most likely have been done. Some of the genetic periodic fever disorders have intense colon and abdominal involvement. And note that a child can still have one of the PFS that are genetic without having an actual mutation. This is why it is so difficult sometimes to diagnose. Also get either your Pediatrician or the Specialist to write a summary letter to Dr. Kastner the director indicating the fever pattern and their conclusions. Fax ALL of this to along with the paperwork she will send you when you contact her. plassn@... The research group really knows the most about all the fever disorders. They are wonderful. It takes anywhere from 3-6 months to get a return call to set up an appointment once they have your information. Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Welcome Cat! I am age 46, I have fibro, asthma and allergies, chronic sinusitis and a few other medical problems(nothing fatal!), I am on 22 Rx meds. My daughter age 22 has cystic fibrosis. What is your reason for joining us, if you don't mind sharing? love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Welcome, , we try to be good listeners, and we understand even when we can't help. Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Welcome, , we try to be good listeners, and we understand even when we can't help. Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 > Hi I can tell you only from my experience that I like to have answers and for me that comes from genetic testing. You can do the reading on teh different periodic fever syndromes in the material Fran has collected on the site. It gives a lot of info. I have read on this site over and over that is a diagnosis after elimination of other disorders. Others here will post more medical info that they have received from NIH, from their doctors, and of course Fran is very knowledgable. Just keep reading and asking questions. My daughters symptoms have increased so we have decided to do the genetic testing. She has had a boatload of bloodwork drawn but our information has been that a diagnosis needs genetic testing which is a swab and it is sent off for testing. Maybe others have different experiences. We all are on a search for answers here I think, even if our child has a diagnosis. It is just great we have a place to come to. Good luck to you! Lori Mom to four daughters including (2) ?PFS > From: Keri and <wgerber@...> > Date: 2006/08/24 Thu PM 12:43:00 EDT > > Subject: introduction > > Hello, I just joined this group and wanted to send an introduction. My > son , who will turn 3 Sept 3, has been getting periodic fevers > since March 2005, about 1 1/2 years ago. The fevers are usually about > 105 for a few days, then 102 for a few days, then just another day or > two of general tired behavior. They're not real predictable like I can > write it on the calendar, but they're almost always between 2 and 6 > weeks apart. Only one time were they 9 weeks apart. The only other > symptom is really swollen lymph nodes in the neck and very stiff and > sore neck. Motrin will make the fever go away (and the soreness), but > not until one hour after I give it, and then it wears off 2 hours before > the time I can give it again, so that only provides relief for about 3 > hours at a time, and I can only give it 6 hours apart they tell me. > But, during those 3 hours he's pretty much normal acting except not > eating maybe. Sometimes his throat is a little red, but nothing very > noticeable there. > > After a bunch of " it's just a virus " doctor visits I stopped going to > the doctor and just documented it all. Then when I had a definite > pattern I went back to our pediatrician who tested him for mono, cat > scratch disease, etc. All that was negative and he referred us to an ID > doctor who said she believes has . They did some blood work > to check his immunoglobin (sp?) levels and that was ok. So she wants to > see him during his next fever and then she mentioned trying the > prednisone. She did not even mention genetic testing like you guys have > been discussing, this is the first place I've seen that. Is this > something I need to pursue? My husband is of Greek origin, I don't > really know mine. I myself had periodic fevers all the time as a kid > until first grade when I got my tonsils out - I literally missed half of > kindergarten. But who knows if that was the same thing, I definitely > agree about not jumping to surgery of course. > > So, that's what's going on with us now. I'm still reading through all > of the literature you've collected, that's a great resource. I will say > is completely healthy except for this. He never gets any colds, > infections, stomach problems, nothing at all - even during the winter - > except for this. And even while he has it, he's not too bad usually > except for those first two days, but then the Motrin helps a lot. > > I am curious about this genetic testing though. Do you think it's ok > for the doctor to just treat him as if he has this or should more tests > be run? I realize the answer may be in those documents, but if you > could just give me this shortcut I'd really appreciate it. I've got a 3 > month old (no fevers there yet!) and life is just SO busy right now with > the new baby and the periodic fevers. > > Thanks, > Keri Gerber > Mom to , almost 3 > Austin, TX > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Hi there! I am up in Fort Worth and my son is also 3 and has been fevering about 15 months so I hear you on all that. Everyone here leans toward genetic testing and I would love to do it - if we can ever get in with ID again - just found out today that I have to wait till 9-11-06 - so 2 more agonizing weeks till we figure out what they want to do . . . Read up and check out NIH in land - they are specialists in these disorders . . . Good luck - and if you find a great doc in Austin let me know - it's only a three hour drive! Hannah Aidan - 3 years old and fevering for 15 months Sid - 5 - healthy boy thank God . . . > > Hello, I just joined this group and wanted to send an introduction. My > son , who will turn 3 Sept 3, has been getting periodic fevers > since March 2005, about 1 1/2 years ago. The fevers are usually about > 105 for a few days, then 102 for a few days, then just another day or > two of general tired behavior. They're not real predictable like I can > write it on the calendar, but they're almost always between 2 and 6 > weeks apart. Only one time were they 9 weeks apart. The only other > symptom is really swollen lymph nodes in the neck and very stiff and > sore neck. Motrin will make the fever go away (and the soreness), but > not until one hour after I give it, and then it wears off 2 hours before > the time I can give it again, so that only provides relief for about 3 > hours at a time, and I can only give it 6 hours apart they tell me. > But, during those 3 hours he's pretty much normal acting except not > eating maybe. Sometimes his throat is a little red, but nothing very > noticeable there. > > After a bunch of " it's just a virus " doctor visits I stopped going to > the doctor and just documented it all. Then when I had a definite > pattern I went back to our pediatrician who tested him for mono, cat > scratch disease, etc. All that was negative and he referred us to an ID > doctor who said she believes has . They did some blood work > to check his immunoglobin (sp?) levels and that was ok. So she wants to > see him during his next fever and then she mentioned trying the > prednisone. She did not even mention genetic testing like you guys have > been discussing, this is the first place I've seen that. Is this > something I need to pursue? My husband is of Greek origin, I don't > really know mine. I myself had periodic fevers all the time as a kid > until first grade when I got my tonsils out - I literally missed half of > kindergarten. But who knows if that was the same thing, I definitely > agree about not jumping to surgery of course. > > So, that's what's going on with us now. I'm still reading through all > of the literature you've collected, that's a great resource. I will say > is completely healthy except for this. He never gets any colds, > infections, stomach problems, nothing at all - even during the winter - > except for this. And even while he has it, he's not too bad usually > except for those first two days, but then the Motrin helps a lot. > > I am curious about this genetic testing though. Do you think it's ok > for the doctor to just treat him as if he has this or should more tests > be run? I realize the answer may be in those documents, but if you > could just give me this shortcut I'd really appreciate it. I've got a 3 > month old (no fevers there yet!) and life is just SO busy right now with > the new baby and the periodic fevers. > > Thanks, > Keri Gerber > Mom to , almost 3 > Austin, TX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 Hi , I'm glad you could find a moment to yourself to find this group! There are alot of supportive,understanding ,loving individuals here and nothing is to out of bounds to discuss here! Please feel free to just ask questions and share! I'm a single mom and I have a 9yr old autistic son.Limited verbally.He was dx'd at 3yrs old and dx'd with epilepsy at 4. His aggressive and self injurous behaviors started just this past year and it has been extremely difficult.He is on meds and I also supplement with vitamins,his behavior has drastically improved.He would hit,scratch,pinch,bite and be destructive .My son used to do the " toe walking " and lots of hand flapping but once he got into early intervention those things went away.He still may handflap now but it's when he's happy or excited about something and thats just fine! My son's language is very sing-song since he loves barney and wiggles but he uses scripted or chunks of language pretty appropriately but as your daughter,he's not conversational yet.Well,I've blabbed enough..I look forward to hearing from you! Stacey From: <srqmomof3@...> Date: 2006/08/24 Thu AM 08:23:50 CDT autism Subject: Introduction Hi My name is and I the mother of 3 children. My youngest, Emma, is a heart transplant patient and was recently diagnosed with Autism and Mental Retardation. Im lost in this right now, I have always known that she was developmentally delayed (she is developmentally around 2) but for some reason these diagnosis' are hitting me pretty hard. Here are her symptoms: -She is verbal, but very delayed, repeats alot, uses commands instead of conversation -aggression, headbanging, self injury (biting scratching self) -hand flaps, verbal and physical ticks, ALWAYS MOVING. Those are just a few, but right now I need to go see why she is so quiet.... thanks for listening Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 Hi , I'm glad you could find a moment to yourself to find this group! There are alot of supportive,understanding ,loving individuals here and nothing is to out of bounds to discuss here! Please feel free to just ask questions and share! I'm a single mom and I have a 9yr old autistic son.Limited verbally.He was dx'd at 3yrs old and dx'd with epilepsy at 4. His aggressive and self injurous behaviors started just this past year and it has been extremely difficult.He is on meds and I also supplement with vitamins,his behavior has drastically improved.He would hit,scratch,pinch,bite and be destructive .My son used to do the " toe walking " and lots of hand flapping but once he got into early intervention those things went away.He still may handflap now but it's when he's happy or excited about something and thats just fine! My son's language is very sing-song since he loves barney and wiggles but he uses scripted or chunks of language pretty appropriately but as your daughter,he's not conversational yet.Well,I've blabbed enough..I look forward to hearing from you! Stacey From: <srqmomof3@...> Date: 2006/08/24 Thu AM 08:23:50 CDT autism Subject: Introduction Hi My name is and I the mother of 3 children. My youngest, Emma, is a heart transplant patient and was recently diagnosed with Autism and Mental Retardation. Im lost in this right now, I have always known that she was developmentally delayed (she is developmentally around 2) but for some reason these diagnosis' are hitting me pretty hard. Here are her symptoms: -She is verbal, but very delayed, repeats alot, uses commands instead of conversation -aggression, headbanging, self injury (biting scratching self) -hand flaps, verbal and physical ticks, ALWAYS MOVING. Those are just a few, but right now I need to go see why she is so quiet.... thanks for listening Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Welcom Tera, I hope your appointment goes well. I'm new to the group too and have found it to be a tremendous support. Bonnie Rochester, NY mom to (5) and (11) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Tera - I was just at ID yesterday in Fort Worth . . . who are you seeing? We saw Dr. . Hannah Aidan - 3 - fevering 16 months Sid - 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 I am new to this posting thing and my reponse to you was not complete.....and I seem to be posting multiple times....I'll get the hang of it!!! We are seeing DR Marc Mazade....did you like the staff, facility, etc??? Tera Kaia-3-fevering 3 months hannahls73 <hannahlsmith@...> wrote: Tera - I was just at ID yesterday in Fort Worth . . . who are you seeing? We saw Dr. . Hannah Aidan - 3 - fevering 16 months Sid - 5 --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Angie,Welcome; this is a wonderful group of people. All I can tell you is that what you are going through is normal.... the falling apart. My Partner and I both have Spina Bifida and Hydrocephalus. We started living together in 2001. When I moved in, he had a pressure sore and was hospitalized for three weeks, with an even longer recuperation at home. A few months after that, I hurt my back and had to have surgery. It took four months to diagnose the problem, and a year to heal after the surgery to correct it. Then (my Partner) had six surgeries in three months. At the same time, I had surgery that ended up being unsuccessful. All of that was between October 2001-August 2004. As a result of the unsuccessful surgery, I remained sick from January 2004 until August of this year. Finally, after two years of doctors calling me addicted to pain meds, it was proven that there was indeed a problem, and I had surgery last month. For the first time in two years, I'm headache free and getting back to my life. I should be happy, right? But just when I should be happiest, I found myself " losing it. " I think that when we or someone we love is sick, we get used to operating on " automatic pilot. " We don't think about what needs to be done; we just do whatever it takes to get ourselves and our loved ones through each day. When the health crisis has passed and our brains and bodies are given the opportunity to slow down, we start thinking about everything that's happened, and it slaps us in the face. We can't believe all that we've been through, and that we actually MADE IT!!! I would think it's like realizing that you've just survived a war; and in a way, you have. For a long time, living in crisis mode, automatic pilot, was normal for you. As messed up as it sounds to most people, I think those of us on this list know what I'm talking about. Now that things have settled down, you've got to get used to a new normal, and change, even for the better, is never easy. Give yourself time to adjust, time to reflect on everything you and your family have been through. Write if it helps (it helps me). Write to the people on this list; we understand what you've gone through/are going through. Eventually your emotions *will* even out. You won't feel like you're " losing it " forever; I promise. Tracey-- Tracey White (tracey.white@...)Life Partner to Piskur (Commitment Ceremony: 8/5/00) " They go dancing, around and around, without any cares; and her very first true love is holding her close; and for a moment, she isn't scared. " - Skin (Sarabeth) by Rascal Flatts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 hi angie, it sure does sound like you have your plate full but it sounds like you are strong willed and determined as well. i joined the group to find support and i am sure that is why you came here as well. you will meet lots of new people and make great friends. hope to hear from you again soon. evelyngreydove <angcass@...> wrote: Hi everyone and thank you for letting me join your group. I look forward to getting to know you all. My name is Angie and I am carer for my son and elderly mother. I have Anklyosing Spondylitis and Isthmic Spondylolsthesis (just don't ask me to pronounce the last one) All boils down to a bad back & various joint problems. Resulting in CFS and osteo arthritis etc. At the moment my left arm and hand are numb (still moving though) and I have balance problems. It's been put down to nerve damage caused by two discs prolapsing earlier this year, but am trying to avoid going to see a specialist. They only want to operate and I always refuse. I passed the HLA B27 gene onto my youngest son (didn't know I had it at the time) He is on heavy duty drugs to help keep him out of a wheel chair. He also has Crohnes disease and a stack of other stuff. Hospital is a second home for him. He's just finished a Uni degree and is working part time. Believe me I never dreamt that he'd ever achieve what he has. He's also a profound dyslexic, dysgraphic and his short term memory is terrible. We home schooled as we hit problems with the ed authorities. I lost my husband to Motor Neurone Disease 6 years ago. We were together for just over 32 years. He died here at home as I'd promised. I then went straight into nursing my father who died 12 weeks later. I do have two brothers who basically deserted us all through this. So 'brother' is rather a dirty word to me. Looking after my mother was down to me, as I was told at my father's funeral. At least my brothers stick by their words. She is an unstable insulin dependant diabetic. Riddled with arthritis, and the latest is that her kidneys are not functioning as they should be. There will be even more hospital appointments in the pipe line for that. She's had a couple of minor operations due to diabetic damage over the years. It's quite a balancing act as she is still independent and resents too much interference, yet demands help. I also keep an eye on my nextdoor neighbours, helping when I can. She is blind, gout and arthritis in practically every joint, with heart problems. Her husband has just come out of hospital following major surgery for an aneurysm. Promptly had a stroke when he returned home. They too were deserted by family but pleased to say they seem to be visiting now all the panic has died down. It's been a terrible time over the past four months here. Never knew what was going to happen day to day. Now that the worst seems to be over I feel as if I'm falling apart. Even the easiest task seems beyond me. Totally the opposite of what I am normally like. I take everything in my stride usually. Hopefully it won't last long. A few good nights sleep would be a boon. Angie Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 Hi Angie- wow, that is alot of stuff! I can sympathize with you and all the caregiving problems, though mine aren't nearly that heavy. My son has schizophrenia and needs looked after daily. He's independent, but needs some supervision. Husband is an ex and not much help. My brother is pretty much tied up with his own life and havent talked to him in two years! Sister is severly mentally ill and is needy, has caseworkers, etc, but good ol' dad is a pretty spry youngster at 83! thank goodness! sounds like you have depression. I did/do too, but I am now embarking on diet which I think will cure alot of it. Its for celiac disease. I noticed when I stopped eating, cause I was either too lazy to buy food, or too lazy to make it, that I felt better. I would mainly eat milk and cereal, soup, but no yeast breads. My therapist, whom I just started seeing, said I should look into celiac's disease websites. I mentioned to her that I had to chew Maaloxe every time after eating spaghetti or pizza and of course, I am always lacking energy, tired, down and ready to die. Stomach indigestion, irritable bowel, constipation, AND depression is a big side affect of wheat allergies! I am hooked on finding out all I can, eliminating all wheat products and yeasts, and also going vegan (although milk and egg products okay). I hope to chat with you and all other members of this site, cause it's so nice to just be yourself! and not have to keep up a smiling face when youre down and tired. Hi to all, hope your week is off to a good start, or will get better tomorrow! linda > > Hi everyone and thank you for letting me join your group. I look forward to getting to know you all. > > My name is Angie and I am carer for my son and elderly mother. I have Anklyosing Spondylitis and Isthmic Spondylolsthesis (just don't ask me to pronounce the last one) All boils down to a bad back & various joint problems. Resulting in CFS and osteo arthritis etc. At the moment my left arm and hand are numb (still moving though) and I have balance problems. It's been put down to nerve damage caused by two discs prolapsing earlier this year, but am trying to avoid going to see a specialist. They only want to operate and I always refuse. > > I passed the HLA B27 gene onto my youngest son (didn't know I had it at the time) He is on heavy duty drugs to help keep him out of a wheel chair. He also has Crohnes disease and a stack of other stuff. Hospital is a second home for him. He's just finished a Uni degree and is working part time. Believe me I never dreamt that he'd ever achieve what he has. He's also a profound dyslexic, dysgraphic and his short term memory is terrible. We home schooled as we hit problems with the ed authorities. > > I lost my husband to Motor Neurone Disease 6 years ago. We were together for just over 32 years. He died here at home as I'd promised. I then went straight into nursing my father who died 12 weeks later. I do have two brothers who basically deserted us all through this. So 'brother' is rather a dirty word to me. > > Looking after my mother was down to me, as I was told at my father's funeral. At least my brothers stick by their words. She is an unstable insulin dependant diabetic. Riddled with arthritis, and the latest is that her kidneys are not functioning as they should be. There will be even more hospital appointments in the pipe line for that. She's had a couple of minor operations due to diabetic damage over the years. It's quite a balancing act as she is still independent and resents too much interference, yet demands help. > > I also keep an eye on my nextdoor neighbours, helping when I can. She is blind, gout and arthritis in practically every joint, with heart problems. Her husband has just come out of hospital following major surgery for an aneurysm. Promptly had a stroke when he returned home. They too were deserted by family but pleased to say they seem to be visiting now all the panic has died down. > > It's been a terrible time over the past four months here. Never knew what was going to happen day to day. Now that the worst seems to be over I feel as if I'm falling apart. Even the easiest task seems beyond me. Totally the opposite of what I am normally like. I take everything in my stride usually. Hopefully it won't last long. A few good nights sleep would be a boon. > > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 Dear Angie, God Bless you sweetie, you do so much for everyone. Your body is telling you take care of ME now! I'm and have had a few tragedies in my life as well. MY brother was murdered 20 yrs ago and I loved him very much still do and miss him every day. My dad died 22 yrs ago and same thing. Same w/ fibro and kid w/ cf. love, Orange Co Introduction Hi everyone and thank you for letting me join your group. I look forward to getting to know you all. My name is Angie and I am carer for my son and elderly mother. I have Anklyosing Spondylitis and Isthmic Spondylolsthesis (just don't ask me to pronounce the last one) All boils down to a bad back & various joint problems. Resulting in CFS and osteo arthritis etc. At the moment my left arm and hand are numb (still moving though) and I have balance problems. It's been put down to nerve damage caused by two discs prolapsing earlier this year, but am trying to avoid going to see a specialist. They only want to operate and I always refuse. I passed the HLA B27 gene onto my youngest son (didn't know I had it at the time) He is on heavy duty drugs to help keep him out of a wheel chair. He also has Crohnes disease and a stack of other stuff. Hospital is a second home for him. He's just finished a Uni degree and is working part time. Believe me I never dreamt that he'd ever achieve what he has. He's also a profound dyslexic, dysgraphic and his short term memory is terrible. We home schooled as we hit problems with the ed authorities. I lost my husband to Motor Neurone Disease 6 years ago. We were together for just over 32 years. He died here at home as I'd promised. I then went straight into nursing my father who died 12 weeks later. I do have two brothers who basically deserted us all through this. So 'brother' is rather a dirty word to me. Looking after my mother was down to me, as I was told at my father's funeral. At least my brothers stick by their words. She is an unstable insulin dependant diabetic. Riddled with arthritis, and the latest is that her kidneys are not functioning as they should be. There will be even more hospital appointments in the pipe line for that. She's had a couple of minor operations due to diabetic damage over the years. It's quite a balancing act as she is still independent and resents too much interference, yet demands help. I also keep an eye on my nextdoor neighbours, helping when I can. She is blind, gout and arthritis in practically every joint, with heart problems. Her husband has just come out of hospital following major surgery for an aneurysm. Promptly had a stroke when he returned home. They too were deserted by family but pleased to say they seem to be visiting now all the panic has died down. It's been a terrible time over the past four months here. Never knew what was going to happen day to day. Now that the worst seems to be over I feel as if I'm falling apart. Even the easiest task seems beyond me. Totally the opposite of what I am normally like. I take everything in my stride usually. Hopefully it won't last long. A few good nights sleep would be a boon. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 Hi , This group is amazing me. I want to reach out and give you all a great big hug. I too lost my eldest brother - through cancer 17 years ago. His death tore me apart as we were very close. I can't even imagine how you managed to come to some sort of terms with loosing your brother like that. I suppose its the same as everything that life throws at us, you do because you have to. Angie M <brenda.morey@...> wrote: Dear Angie, God Bless you sweetie, you do so much for everyone. Your body is telling you take care of ME now! I'm and have had a few tragedies in my life as well. MY brother was murdered 20 yrs ago and I loved him very much still do and miss him every day. My dad died 22 yrs ago and same thing. Same w/ fibro and kid w/ cf. love, Orange Co Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 That's right Angie, my daughter is named , love your name! The Lord is there if we only lean upon him. love and God Bless, Re: Introduction Hi , This group is amazing me. I want to reach out and give you all a great big hug. I too lost my eldest brother - through cancer 17 years ago. His death tore me apart as we were very close. I can't even imagine how you managed to come to some sort of terms with loosing your brother like that. I suppose its the same as everything that life throws at us, you do because you have to. Angie .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Misty - Hi there . . . welcome to the group. I don't have much time to type right now - but I think you will find this site very helpful and everyone very welcoming. We live in Crowley and also go to Cooks. We have seen Dr. there in the ID dept. Do you live in the area and have you see Dr. Murhpy? Who is your Ped? And who have you tried? Our Ped. is Dr. . My son is three and has been fevering for 17 months and just got diagnosed with but they are testing for cyclic nuetropenia right now. Anyways - sorry about all the questions ... I just like hearing from people in our area. Hang in there and Prayers for all, Hannah Aidan -3 Sid - 5 Fort Worth, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Thank you Hannah, Our first ped. was Eva Carrizales (sp?), second Connie Maileg, current primary is Lydia Bishop. All are in Arlington. Dr. Bishop was the one who finally listened. We are at the same ID clinic-different doctor. Our doctor there is Dr. Whitworth although we have also seen Dr. Egger when Dr. Whitworth was out. Are you going through blood draws now for cyclic neutropenia? We did that last spring. The women in the lab at Cooks are the best! was so brave for the 2 months she had blood draws. They always gave her (and her brother!) stickers, suckers, and hugs. On her last draw, one of the techs have her a bunny purse. It turned a painful situation into something more manageable. Thank you for the welcome and I'm happy to hear from someone in our area! Misty Mom to Zachary 7.5 and 4 \ > > Misty - Hi there . . . welcome to the group. I don't have much time > to type right now - but I think you will find this site very helpful > and everyone very welcoming. > > We live in Crowley and also go to Cooks. We have seen Dr. > there in the ID dept. > > Do you live in the area and have you see Dr. Murhpy? Who is your > Ped? And who have you tried? Our Ped. is Dr. . > > My son is three and has been fevering for 17 months and just got > diagnosed with but they are testing for cyclic nuetropenia > right now. Anyways - sorry about all the questions ... I just like > hearing from people in our area. > > Hang in there and Prayers for all, > > Hannah > Aidan -3 > Sid - 5 > Fort Worth, TX > Quote Link to comment Share on other sites More sharing options...
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