Guest guest Posted August 30, 2001 Report Share Posted August 30, 2001 Dear Amy, I'm so sorry that your son crashed over the weekend. I can't imagine how you handle that - or how you are strong enough to send him back to school. Good for you! Annie's chief phobia is vomiting. I hope she never hears about chronic or cyclic vomiting! When she is really worrying, she says 'what if I throw up over and over? What if I can't stop?" Yikes. Your poor son. How do they treat him? Do they give him meds to stop the vomiting or do they just keep him from getting dehydrated? And is the long-term solution CBT? Just curious - don't answer if you don't feel like it or don't have time. Good luck to you - and to all. We will survive another school year. P.S. at Annie's last psych appt., the doc told me to call him this week. He repeated that several times and kept saying "i don't want you left alone if there are any problems". I left feeling like I was being thrown into the lions' den. "How bad can it be? " I thought. Ha! He apparently remembered last year better than I did! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Hello Amy, My 11 yod, , has Asperger's Syndrome which is on the high-end as well. I can't address her incontinence issue, so I will leave that to other's more experienced. However, I can tell you that there is a urine test that can be done to detect gluten and casein. I have been saving up to have the test done. My daughter was seen by a DAN! specialist and he really wants to check those levels...but it's $344 and not covered by insurance. I have hesitated starting the diet until we get the test results (and because the doctor wants her eating her regular diet for the test). As far as support for the gluten-free/casein-free diet, I belong to a HUGE email group called GFCF . This has been a big help in understanding how to read labels, gathering recipes, etc. You can subscribe by sending a blank email to GFCF-subscribe . There is also a website called GFCFDiet.com. I hope this helps! Peace, Mommy to , 11, AS _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Hello Amy, My 11 yod, , has Asperger's Syndrome which is on the high-end as well. I can't address her incontinence issue, so I will leave that to other's more experienced. However, I can tell you that there is a urine test that can be done to detect gluten and casein. I have been saving up to have the test done. My daughter was seen by a DAN! specialist and he really wants to check those levels...but it's $344 and not covered by insurance. I have hesitated starting the diet until we get the test results (and because the doctor wants her eating her regular diet for the test). As far as support for the gluten-free/casein-free diet, I belong to a HUGE email group called GFCF . This has been a big help in understanding how to read labels, gathering recipes, etc. You can subscribe by sending a blank email to GFCF-subscribe . There is also a website called GFCFDiet.com. I hope this helps! Peace, Mommy to , 11, AS _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Hello Amy and WELCOME! You have come to the right place for the information on this 'dragon'. You will find everyone to be helpful and so very knowledgeable, and not just about Stills. I hope your meds work for you and you can continue to live the normal life-style you are accustomed to. Take care and rest when reguired. XO __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Hi Amy welcome to the group, sorry it has taken me so long to write, my cable modem is all messed up and I can barely get online now anyway, what does your hubby do in the army? My hubby flies chinooks, we are in Savannah Georgia. We would love to come to Ft. Carson, there is talk that they may move task force (160th SOAR) there, if so then he could request that. We are limited in our bases that we can go to. We have Bragg, and Hunter in Savannah for stateside, then Hawaii, Alaska or Germany or Korea and that is it. The chinook community is very small. I have been on pins and needles since Christmas, my hubby's unit is in Afghanastan, he got to the unit right after they deployed so they told him they would send him over there in March, well March came and went, then they said May, May came and went, then said July, well he is still here. They are bringing his unit back home now and the company from Bragg is replacing them for the time being. Im sorry you are having some troubles with methotrexate. It takes about 6 weeks to build up in your system. I take enbrel which has worked much better than methotrexate did for me, tricare covers it, but there is a waiting list for it now. Remicade is another option and so is the new drug kineret. I know most RD's still want to start out with mtx but if I was just diagnosed I would push to skip mtx and head straight for the biologic agents (remicade, kineret) because there are less side effects with them. Mtx can cause headaches, Im not aware of it causing tremors and tremors isn't common with still's. what other meds are you on now? well take care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 In a message dated 9/28/2002 9:10:43 PM Central Daylight Time, pickndaisies2002@... writes: > Do you have aol or msn or ? Ever notice my email address? Hehe... and on , I'm piercemeagain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Dear Amy, I wish you were not having such a difficult time. I am so glad that you have decided to find another Doc. I hope you will find a good one that you feel comfortable with. It is so frustrating when friends and family are not supportive of our disease. I will be praying that you will start feeling better soon. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Hi Carmen: I have also gone your route of checking the chat room at odd hours. I think the best way to do it is to check your AIM, ICQ, MSN, or other instant messaging lists and see if anyone is on line and then ask if they would like to chat. If that doesn't work try sending an e-mail to the group asking if anyone is awake and if they would like to chat. You would be very surprised at the number of people awake and just wanting someone to talk to to ). Take care now and be PAIN FREE! We Will Win Love Y'all Mom & Dad Bob & Carole Please Visit the International Stills Disease Foundation Web Site at: www.stillsdisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Hi Carmen: I have also gone your route of checking the chat room at odd hours. I think the best way to do it is to check your AIM, ICQ, MSN, or other instant messaging lists and see if anyone is on line and then ask if they would like to chat. If that doesn't work try sending an e-mail to the group asking if anyone is awake and if they would like to chat. You would be very surprised at the number of people awake and just wanting someone to talk to to ). Take care now and be PAIN FREE! We Will Win Love Y'all Mom & Dad Bob & Carole Please Visit the International Stills Disease Foundation Web Site at: www.stillsdisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 > that is beautiful, Amy! I felt willing to take the chance, felt at peace. My kids were basically grown and I knew if He wanted me, well, He could just snatch me up out of nowhere. > > Marta > Amen, Marta, Amen! Sharon in Onyx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 Darlingtons wrote: > Oh Amy, I am so sorry for your situation! That seems so cruel to say he > would be home one date then change it to a later one! We all love you > and support you sweetheart and PLEASE tell your hubby thank you from all > of us!! I have forgotten where you live Amy?? Thinking of you, Louise. > > DOGEJA@... wrote: > > > I too am feeling blue. On Weds. we were told our husbands would be > home > > from Iraq in October, then hours later we were told it won't be until > > next march > > or April. AND they are moving to Mosul (where the brothers were > > killed) YIKES > > Please keep my husband in all your thoughts. Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 In a message dated 1/25/2004 9:42:38 AM Pacific Standard Time, mjs93311@... writes: > marta > who hopes no one is hating her for this thread... I refuse to hate you (even though I am envious). LOL We love you, Marta, and rejoice in your success! Hugs and blessings, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 marta - i am behind on my digests, so i just saw this tonight. YES! i did want those, if you still have them. maybe i could get them at the meeting in a couple of weeks? thanks for thinking of me. ~amy~ ps - how could any of us hate you? i am thrilled that you are doing so well, and you are much to cute for us to hate you!! > did you have dibs on my size 8 charcoal stretch gabardine slacks > from Pennys? I am ready to give them away. I got a pair of fours, > wanted sixes, but they had almost nothing six. > > I am not too keen on buying a bunch of fours since I think I will > rebound or at least put on some muscle and get bigger. > > marta > who hopes no one is hating her for this thread... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Amy, Thanks for the nice long post ! I really enjoyed reading it. I am still in the weight loss stage, but can identify with many things you stated. Yes it takes time, but it comes along slowly. PW lap ds 7-15-03 down 105 pounds and counting > > you will find your style, and you will find yourself comfortable in > your new body, just know that it happens differently for everyone, > and it will happen in the time and way that is right for you. > ~amy c~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Amy, Thanks for the nice long post ! I really enjoyed reading it. I am still in the weight loss stage, but can identify with many things you stated. Yes it takes time, but it comes along slowly. PW lap ds 7-15-03 down 105 pounds and counting > > you will find your style, and you will find yourself comfortable in > your new body, just know that it happens differently for everyone, > and it will happen in the time and way that is right for you. > ~amy c~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 hey sweetie - thanks for asking. he is slowly getting better. someone told me he looked frail, and i think that has been the hardest thing - my dad has always been very strong and healthy - it is hard to see him showing his age and frailty. the doctors expect a full recovery, and on march 13 he and my mom will celebrate their 50th anniversary. he is very grateful for the prayers and support that our family has continued to receive from this group. thank you! see you tuesday! ~amy c~ > Amy, > How is your daddy doing??? Prayers are still with you and your family > God bless,Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 hey sweetie - thanks for asking. he is slowly getting better. someone told me he looked frail, and i think that has been the hardest thing - my dad has always been very strong and healthy - it is hard to see him showing his age and frailty. the doctors expect a full recovery, and on march 13 he and my mom will celebrate their 50th anniversary. he is very grateful for the prayers and support that our family has continued to receive from this group. thank you! see you tuesday! ~amy c~ > Amy, > How is your daddy doing??? Prayers are still with you and your family > God bless,Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Amy, Hearing the diagnosis when Rebekah, then 29 months, was devastating even though we had suspected the disease all along. We were scared and worried and ....well a lot of emotions. Then, we were rushed into treatment because Rebekah's condition was so poor. So, we had to quickly learn a new way of living. Plus, we had 3 other children to take care of. Fast forward to today: Rebekah has been diagnosed for 2 years and 4 months. She has been receiving IVIG at home for 18 months. She has grown and hasn't been to the doctor in NINE MONTHS for anything! At first glance, you would not know that she has any health problems. On closer association, you would notice that she is more tired than her peers and is more emotional. We never believed that she would live, much less do as well as she is doing. You and your dh are at a very low moment right now, but, armed with a correct diagnosis, you won't need to fight with your doctor for aggressive treatment as much. You will be more aware of the need to keeps germs away from your son. And, truly, you will incorporate this into your life, just like you would if your son had a more common disease. Hang in there, girl and let that guilt go. It might not have been a recessive gene at all; it might have been a fluke genetic mutation. I'd encourage you to get a full diagnosis before you decide on any course of treatment. I assume that your doctors are checking his titers for his vaccines, too. Then, make a decision with your doctors about what to do. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2 Rebekah, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Amy: I wanted to share our experience with you. Our dd started immune testing after she recovered from pneumococcal meningitis as an infant. At a year old, she had partial T-cell deficits, low IgG, IgM and absent IgA. All confirmed. She had trouble making antibodies to Hib, polio and Prevnar (the conjugated pneumococcal vaccine). She had no isohemagglutinins at age 1-1/2, which is a marker for immune disorder since it's the very basic function of reacting to blood types other than your own. We were devastated, of course, and they told us that since she had functional, antibody deficits, that this was NOT transient, she would have it for life. They usually don't diagnose CVID at a year of age since immune defs can be transient and improve with age. But they were so sure because of 's multiple deficits. Well, at age two her IgG came up quite a bit and the t-cells seemed fine. Isohemagglutinins present! We still had the IgA (absent) and pneumococcal antibody def. At age three, her IgA was not only present, but NORMAL!!! The immuno couldn't explain it, sort of shrugged her shoulders. I looked heavenward and said thanks! IgG and IgM normal. Still the pneumo antibody problem though. Now at age five, she still has the pneumo antibody deficiency, which is concerning of course, and she certainly is not as healthy as I'd like. But she is going to preschool -- something we didn't dare dream of before. She usually looks absolutely healthy, she's actually tall for her age! She's feisty and bright and usually full of energy. Every time I see her doing something I never thought she'd be able to do (or feared she'd not live long enough to do), like being on a stage in a ballet recital or even bounding excitedly into preschool class, I get tears in my eyes. Sometimes I still get down (like last week!), but I soooo appreciate all the things she's been able to do and all the improvements she's been lucky enough to make. One thing I did not have when she was diagnosed was HOPE. They basically gave us no reason to think she'd improve. This was confirmed with multiple tests and three different docs in the practice looking at her case. So of course you are upset for , and rightly so. But just don't give up hope. We were told 's def. was not transient, no way. And she's improved in all but one area!! And I still have hope for that one, too, though some days it's harder to believe that than others!!!! Please read the post with " Welcome to Holland " . I first read that here a few years back and I love it. It is true, there are kindnesses we have experienced we never would have if had never had any PID. I'm not going to analyze whether or not it's " worth " it of course, what would be the point. I'm just saying there are good things you can take from it if you look reallllllly hard! In our case, we thought we could not financially afford for me to be a stay-at-home mom. But 's ped insisted I quit my job to stay home with her after she had had a second deadly illness as an infant. In a way it was a Godsend... we are managing ok financially and I get to raise my kids. So it's a complicated blessing -- I would never have wished PID on my child, but it has allowed us to be together 24/7. (another complicated blessing!! hee hee hee!) Good luck in this long journey -- (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Amy & thanks for your replies. (I've switched names -- my own account as opposed to my dh's.) We live in Indianapolis and will be having the MRI done at Riley Children's Hospital. But all this has been directed by my ped so far. I've looked at the list of orthopods at Riley. There are a couple who list scoliosis as a specialty. I think I'll ask the ped to refer us there. > Hi Amy, > I was told that the MRI is for checking to see if there is any > problem with the spinal cord. For my dd, they always use the x ray > to measure the curve. I would not want my peditrician to handle > scoliosis. I would want someone with a lot of experience to be > handling it. My suggestion would be to find a pediatric orthopedic > specialist that specializes in spinal problems. Do you have a > children's hospital nearby? They often have pediatric spinal > specialists. Shriners hospitals also handle scoliosis, sometimes it > takes a while to get in, but the treatment is given without charge. > Good Luck. > mary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 In a message dated 6/18/2004 10:29:02 AM Eastern Daylight Time, writes: As we are all aware this this community the acronym PID stands for Primary Immune Deficiency, but being new to this world I am quickly realizing that the " rest of the world " does not know what we are referring to necessarily! LOL! That is too funny!! The doctors that we have seen and on websites such as the Baxter website ( _www.immunedisease.com_ (http://www.immunedisease.com) ) refer to it as PI and not PID. That way there is less confusion about it. The hospital and docs here say " primary immunodeficiency " instead of " primary immune deficiency " . Don't know why they can't all get on the same page! LOL! Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 , It's left lumbar. If you look at the x-ray taken from the front (through the belly), he looks fine. If you look at the x-ray taken from the back, that's where you see it. I didn't ask the doc how much experience he's had w/this type of scoliosis. He's an ortho surgeon w/speciality in scoliosis. He told me he's never had to operate on a child w/this type of scoliosis. You mention congential deformity. Here's another question for you all. Robbie has what his ped calls a " double buttcrack. " It's REALLY long! When the ped first saw it, she said that sometimes they look for signs of spina bifida when they see that, but that he was ok. So, now that in combo w/the kyphosis has me wondering if there isn't something I/we should be looking at closer? Developmentally, he's fine. Crawled at 7 months. Walked at 15 months. Climbs, runs (a bit wobbly but he's only been walking for 2 months). Would the MRI or the x-ray have shown if there is anything to be concerned about? I don't mean to be a pain -- and I don't want to seem naive. I guess I was so looking for good news, that I didn't think critically enough when we were at the ortho. Next time, I'll have some of you on conference call so you can tell me what I'm forgetting to ask ! Amy > Hi Amy, > I can't remember where you said the bone sticking out is. I mean is > it thoracic or lumbar. My dd Gabi has the hemivertabrae, but they > are lateral hemis so far as we know. They are missing half on the > side of the vertabrae. I guess for kyphosis, the part of the > vertabrae that is not fully formed is on the anterior side. So, it > is on the side of the vertabrae that you could see if you could look > through the front of a person's body. For example, if you feel down > someone's back, you can feel those sharp things sticking out, that > would be the posterior side of the vertebra. When they send a > person to get an x ray, they may write anterior posterior spine, so > that means that they want the x ray to show the anterior part of the > vertabrae, the flat part instead of the pointy parts. Does that make > any sense? or was that whole explanation totally irritating? > Do you think the doc has a good amount of experience with this kind > of scoli? From what I understand, if the bone is not fully formed, > this is considered to be a congenital type problem, that is the > person is born with it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Can anyone eloborate a little more on the "double butt crack"? I have never heard of this... thanks, HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 In a message dated 8/13/2004 9:29:11 PM Eastern Daylight Time, rn4premies@... writes: When we where at s Hopkins they had told us to watch for CVID around the time of puberty, That is when things really got bad for Britt. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 wat do u mean? blueyedaze@... wrote: In a message dated 10/8/2004 12:57:20 PM Eastern Standard Time, angeldelight1989@... writes: thats so nice to hear i have a g-tube so i wouldnt have to worry about not being able to swallow, did they numb you when u had your c-section? i hope so well being at my young age i am just learning about what i can and cant do. however my sister doest help me at all. when i was 10 she really basterd my confidence she said " i couldnt move out because i wouldnt be able to do anything for myself, no one will love me, i cant have kids and i wont b able to get a job " so ever since then i have been trying to prove her wrong i may not be able to phhysicaly hurt her but i can mentaly .....i have already looked into independant liveing arangement and i have and a number of boyfriends (more then her) i have also had sex so i know i can do that haha but dont tell noo one else please. me and him split up though because he fancyed my sister who has a spectacular figure but brains like shit .....as you can gather i dont like my sister very much hehe. i have this one lad saying he loves me and will be there for me all the time etc and he also said if i married you and we had kids i would always be there with you but i am not sure yet how old was you when you had you baby??? i am not small i am 5ft and a 1/2 and i weigh 8 stone but i like being the way i am. do ur hips dislocate and can u move your arms a great deal or not? Actually, your g-tube probably wouldn't last through your 2nd trimester. Pregnancy will cause your body to change and when a baby grows, your stomach becomes compressed. I think it's great you're looking toward your future, but I encourage you to enjoy the present. Teenagers are considered high risk as it - SMA will only complicate the issue. I was 24 when Olivia was born. Amy In love with Will, 11/3/95 Mama to Olivia, born 9/18/03 (http://lilypie.com/) (http://daisypath.com/) Quote Link to comment Share on other sites More sharing options...
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