Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Christene, I don't have the experience with systemic JRA but two families I met today in Georgia do. I would have to agree with the other replies to this post -- it *could* still be systemic JRA. I realize the doctors want to be sure but please have them consider treating the probable systemic JRA ASAP as they are ruling out other things. The two families from today: A four year old boy with small pin prick rashes that grew to quarter size within hours. A high 105 degree sustained fever. Pain and inability to walk. The great news: a tough couple months but he is in complete remission a year later and is finally off all meds. A seven year old boy with rashes mostly on the stomach. Excruciating pain. Also a high 105 (or even 106) degree fever. A sustained fever, high and low, over a two month period. Pain so bad he couldn't get out of bed and had to be carried for two weeks (even to the bathroom). Good news: in almost complete remission a year later with only very minor flares and currently being tapered off of methotrexate (MTX) I believe. In both cases, these boys were treated aggressively for systemic JRA by the same pediatric rheumatologist before the " official " diagnosis could be made weeks (or months) later. Just more food for thought. Sometimes the parents' experience will provide more information than some of the doctors' opinions. In just a few families I spoke with today almost everybody had " fired " a pediatrician, pediatric rheumatologist, and/or a pediatric ophthamologist. My HMO admitted that in " rare " diseases the parents may end up doing the research and bringing probable treatments to the table with the HMO finally using the information and agreeing (when their initial course of action was haphazard at best initially). Hang in there! Steve (le - 4; pauci + uveitis) We had our appointment with the endocrinologist today. He does not think > 's problems are thyroid related but did take more blood to be sure he can > completely rule that out. After seeing 's foot purple for nearly a full > day I again called her neurologist to see if there was any chance her seizure > med's could be causing some of her problems. She has been on them for so > long and I just wonder. When he called me back last night he has decided to > wean her off of both of her seizure med's. She has not had a seizure for several > years and he was planning to start weaning her off them in April at our next > appt. any way. So he decided to start now. He does not think these med's are > the cause of her problems but does think it is possible that they could > contribute to the JRA problems. So we begin a fairly rapid decrease in her meds. > She has been on Depakote for six years and we will take her off in 10 days. > I trust her neurologist completely but it is a bit scary taking her off it > that quickly. As long as she tolerates that well we will then begin to wean > her off of her Keppra. The Ped. office called back today and we do not know > when she will get into the oncologist yet but should know something by Monday. > With all the troubles we have been having they seem to think we should be > able to get in real soon. has had two good days compared to the last few > weeks. She is still very stiff and sore but her smile is back and she has a > bit more energy then she has for a while. Every little bit is encouraging. I > do ask for prayers for her as she goes off the seizure med's and as we go to > see the oncologist. > > Veri & Jaye 12 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hi, I wish Stacia would reply to your questions and concerns.Her son Hunter went about 4 yrs before diagnosing him with SoJRA. He had the systemic symptoms but not the obvious swollen joints.They seen specialist after specialist to no avail. It is still a sore subject for her but since diagnosis and receiving the right drugs at the right dose he is doing well,as far as I know. Unfortunately for some the classic Arthur symptoms just don't present themselves in the beginning. The pain and screaming and crying you describe still sounds like myalgas(all over body wide muscle pain)very common with systemics. I think it was Val's Robbie but mayby someone elses.They got home and had to go up 3 flights of stairs to get inside.The myalgas were so bad he refused to be carried and it too over 2 1/2 hours for him to creap and crawl up those stairs by himself. I recall s last systemic flair in 2002 and we were next door.One minuite he was running around as best he could and the next he was on the floor using his forearms to pull his body.He refused to let me carry him,he bellied himself through the house,down 3 steps and half way to our house.I hollered for his daddy and he picked him up. started screaming to put him down that he was hurting him.He threw a fit over the pain of just touching him.At the time he had a realy high pain tolerance but the myalgas were just too much. Hang tight and tough and God will get you through. Love hugs and prayers Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Good Evening Everyone! Thanks for all your thoughts and prayers and feedback. I am sorry if I upset anyone in regards to what the Ped Rheumy said to me about being in too much pain to have JRA. I truly believe in my heart he has the Systemic JRA...it's that gut feeling that I have. Tomorrow is the big day for us. My in-laws came up from PA to offer their support and they too believe it's arthritis. Did any of you/children that have JRA experienced such mood swings and loss of appetite? screams when we give him a bath or put him in a hair chair...it's pure agony and we don't know if it " hurts " him or what. Well I will definitely let you know how we made out...again thanks for being there for me...I truly need you in my life! I forgot to mention that I work Saturday through Monday from 4:00 a.m. to 4:30 p.m. so I am not on much during the weekend. Please continue your prayers for and his family and I am thinking of all of you as well. CHRISTENE gabrielles_parents <dlbeer@...> wrote: Christene, I don't have the experience with systemic JRA but two families I met today in Georgia do. I would have to agree with the other replies to this post -- it *could* still be systemic JRA. I realize the doctors want to be sure but please have them consider treating the probable systemic JRA ASAP as they are ruling out other things. The two families from today: A four year old boy with small pin prick rashes that grew to quarter size within hours. A high 105 degree sustained fever. Pain and inability to walk. The great news: a tough couple months but he is in complete remission a year later and is finally off all meds. A seven year old boy with rashes mostly on the stomach. Excruciating pain. Also a high 105 (or even 106) degree fever. A sustained fever, high and low, over a two month period. Pain so bad he couldn't get out of bed and had to be carried for two weeks (even to the bathroom). Good news: in almost complete remission a year later with only very minor flares and currently being tapered off of methotrexate (MTX) I believe. In both cases, these boys were treated aggressively for systemic JRA by the same pediatric rheumatologist before the " official " diagnosis could be made weeks (or months) later. Just more food for thought. Sometimes the parents' experience will provide more information than some of the doctors' opinions. In just a few families I spoke with today almost everybody had " fired " a pediatrician, pediatric rheumatologist, and/or a pediatric ophthamologist. My HMO admitted that in " rare " diseases the parents may end up doing the research and bringing probable treatments to the table with the HMO finally using the information and agreeing (when their initial course of action was haphazard at best initially). Hang in there! Steve (le - 4; pauci + uveitis) We had our appointment with the endocrinologist today. He does not think > 's problems are thyroid related but did take more blood to be sure he can > completely rule that out. After seeing 's foot purple for nearly a full > day I again called her neurologist to see if there was any chance her seizure > med's could be causing some of her problems. She has been on them for so > long and I just wonder. When he called me back last night he has decided to > wean her off of both of her seizure med's. She has not had a seizure for several > years and he was planning to start weaning her off them in April at our next > appt. any way. So he decided to start now. He does not think these med's are > the cause of her problems but does think it is possible that they could > contribute to the JRA problems. So we begin a fairly rapid decrease in her meds. > She has been on Depakote for six years and we will take her off in 10 days. > I trust her neurologist completely but it is a bit scary taking her off it > that quickly. As long as she tolerates that well we will then begin to wean > her off of her Keppra. The Ped. office called back today and we do not know > when she will get into the oncologist yet but should know something by Monday. > With all the troubles we have been having they seem to think we should be > able to get in real soon. has had two good days compared to the last few > weeks. She is still very stiff and sore but her smile is back and she has a > bit more energy then she has for a while. Every little bit is encouraging. I > do ask for prayers for her as she goes off the seizure med's and as we go to > see the oncologist. > > Veri & Jaye 12 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Hi , Our family has been exactly where you are. The last straw for us was the bone marrow procedure with a pediatric oncologist. Boy, that was a fun procedure to witness - OMG!!!!!! I think the ped. oncologist called us within hours of doing it to let us know that he did not have any type of leukemia, but she was 99% convinced he had systemic jra. She also pointed us to the right rheumy who sees most of the kids around here (we had seen a quack, I mean rheumy, who claimed to have ped. patients who told us that our son had no rheumatic condition whatsoever, even after listening to and seeing my almost 4 years of documented story !!!!) As I posted last night, if you want to talk, email me and I'l give you my phone number, or vice versa. I pray that the testing went well this morning and you bring us good news (no cancer). Stacia and Hunter 9 systemic, iritis We had our appointment with the endocrinologist today. He does not think > 's problems are thyroid related but did take more blood to be sure he can > completely rule that out. After seeing 's foot purple for nearly a full > day I again called her neurologist to see if there was any chance her seizure > med's could be causing some of her problems. She has been on them for so > long and I just wonder. When he called me back last night he has decided to > wean her off of both of her seizure med's. She has not had a seizure for several > years and he was planning to start weaning her off them in April at our next > appt. any way. So he decided to start now. He does not think these med's are > the cause of her problems but does think it is possible that they could > contribute to the JRA problems. So we begin a fairly rapid decrease in her meds. > She has been on Depakote for six years and we will take her off in 10 days. > I trust her neurologist completely but it is a bit scary taking her off it > that quickly. As long as she tolerates that well we will then begin to wean > her off of her Keppra. The Ped. office called back today and we do not know > when she will get into the oncologist yet but should know something by Monday. > With all the troubles we have been having they seem to think we should be > able to get in real soon. has had two good days compared to the last few > weeks. She is still very stiff and sore but her smile is back and she has a > bit more energy then she has for a while. Every little bit is encouraging. I > do ask for prayers for her as she goes off the seizure med's and as we go to > see the oncologist. > > Veri & Jaye 12 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Christene, Too much pain to be JRA? Too sick to be JRA? If you could see my face you would be able to see that I am still unable to close my mouth and my eyebrows are probably up near my hairline. However, it is very important to rule out (or correctly diagnose leukemia) to be sure that receives the proper treatment - so please don't think that I question that part of the doctors plan. But I would be inclined to question whether or not your pedi rheumatologist is indeed a pedi rheumatologist - if he or she really is, then I would next question how many systemic onset patients he or she has treated, as well as how much experience he or she has actually had treating chrildren with arthritis. Leukemia was one of the illnesses/diseases ruled out when my Robbie was first so deathly ill. He was also admitted with probable MAS. (Macrophage Activation Syndrome) He was three, almost four years old. He couldn't stand to be touched - but was in too much pain to try to walk - at 3 he was problem solving and decided that If I wrapped him in a blanket it would be less painful for him to be carried. When Robbie was admitted for the second time with his JRA symtptoms (this was the admission where the final diagnosis was made) - he was lethargic, anemic, unable to move on his own, didn't want to be touched due to the pain, his liver and spleen were enlarged significantly, he had inflammation in his lungs and around his heart. He had conjunctivits, tonsilitis and appeared to have an ear infection. There wasn't a part of him that wasn't affected by this horrible disease. He had several inflammed joints as well - but has been admitted with strictly systemic symptoms, with pain all over, but no noticable inflammation in his joints. Too much pain? I still can't get over that comment. It makes me think that the doctor truly has no idea what children with arthritis go through. Too sick. Someone needs to tell that doctor that children die from complications of systemic onset JRA. That doctor should have witnessed my baby waking screaming in the middle of the night with pain in his elbos - and all over - and listened to him cry as I held him and rocked him waiting for his pediatrian's office to open, praying that the 104.5 fever would break soon. Too sick? Give me a break. Chistene, please know that it is very hard to diagnose, and the doc does need to consider all possibilities. You and are in my prayers. Val Rob's Mom (8,systemic) Re: Update on The Pediatric Rheumy doctor felt that was in too much pain to have JRA and had a Pediatric Hematology/Oncology look at him. She too felt that he was too sick acting to have arthritis so once again another blood test and an ultrasound was done on him to check for tumors/masses and see if he's showing any signs of leukemia. His liver and spleen or pancreas were enlarged and he's more anemic than he was a week ago. The good news is that the test didn't show any signs of leukemia as of yet but is going to have the bone marrow test on Monday morning at 9:00. I really don't know at this point what to think but my heart " hurt " . Never in my wildest dream would I have thought he might have " cancer " . I guess right now we just have to pray for . Did any of your kids acted sickly but still had JRA? Well just want to let you know what happened...will give you the updates on Monday. veristroud@... wrote: We had our appointment with the endocrinologist today. He does not think 's problems are thyroid related but did take more blood to be sure he can completely rule that out. After seeing 's foot purple for nearly a full day I again called her neurologist to see if there was any chance her seizure med's could be causing some of her problems. She has been on them for so long and I just wonder. When he called me back last night he has decided to wean her off of both of her seizure med's. She has not had a seizure for several years and he was planning to start weaning her off them in April at our next appt. any way. So he decided to start now. He does not think these med's are the cause of her problems but does think it is possible that they could contribute to the JRA problems. So we begin a fairly rapid decrease in her meds. She has been on Depakote for six years and we will take her off in 10 days. I trust her neurologist completely but it is a bit scary taking her off it that quickly. As long as she tolerates that well we will then begin to wean her off of her Keppra. The Ped. office called back today and we do not know when she will get into the oncologist yet but should know something by Monday. With all the troubles we have been having they seem to think we should be able to get in real soon. has had two good days compared to the last few weeks. She is still very stiff and sore but her smile is back and she has a bit more energy then she has for a while. Every little bit is encouraging. I do ask for prayers for her as she goes off the seizure med's and as we go to see the oncologist. Veri & Jaye 12 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Nothing I can say can express how sad I am. I think all the moms and dads here cry for you because there isn't a time when our own chidlren are sick that we don't fear what you are now going through. I cry for you in your loss. Mayah (mom of Taliesen, systemic jra since 5) ________________________________________________________________________ Date: Sun, 12 Mar 2006 04:05:50 -0000 From: " Jo & Grant " Subject: Re: UPDATE ON ALEX Oh dear God Christene! What can I say? I am grieving with you (my daughter is 26 months old) and my heart goes out to you and Tom, Hannah and Zachary. Sincerest sympathies. " Eternal rest grant to him Oh Lord, May perpetual light shine upon him, May he Rest In peace. " And may God Bless your little and may the Angels take him home. Jo & Grant Bayly, 3, extended oligo Violet, 2 , 13 > > Good Morning! As you know I have not been online the past two days > and I will start off by saying yes that my son was diagnosed on > Wednesday as having JRA. Unfortunuately we are sad to say that our > little precious is no longer with us. He passed away on > Wednesday evening of natural causes as was told to us yesterday > afternoon. I really don't know what else to say but I want to thank > you for all your support. I will leave it at that. > > CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY > ________________________________________________________________________ ________________________________________________________________________ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Christene, I am so sorry for your loss , your family is in my thoughts and prayers. Teri ( belle 11) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi Jen, Happy belated Birthday! I hope you get to feeling better, sinus are just the worst. ~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi Jen, I'm sorry you've been sick - I hope you feel better soon. Glad you had a good birthday! Donna --- from Michigan <volleyjen0416@...> wrote: > Hi Everyone, I ended up getting a bad sinus > infection so I haven't been exercising much except > for the usual playing volleyball and bowling. I > then had TOM come to town which made me feel worse! > Luckily now TOM is gone (almost) and I am going to > start walking again (outside if the temps are in the > mid 60's) and doing my exercise videos/dvds. I know > that is rotten sinus infection can hang around for > months and I can't afford to wait until I'm feeling > 100% well because I will be setting sail at the end > of August. I'm going on a cruise to Alaska in case > I didn't tell you all before and I want to lose a > few pounds before I have to buy clothes for my trip. > > Today (April 16th) is my birthday! I had a > great day. I went to a Detroit Tiger Baseball game > and went out to eat afterwards. It was a little > chilly but the Tigers won so that's all I really > care about > > Well, that's the update on me, > > > Jen > > > --------------------------------- > Love cheap thrills? Enjoy PC-to-Phone calls to 30+ > countries for just 2¢/min with Messenger with Voice. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 happy b-day jen. i was fighting an infection while fighting with this puter. hope you feel better soon. we had to do rounds of anitbiotics and singuluar for a week.get well soon kassia Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Thanks I'm hoping that I will start feeling better soon too! Jenfitgrl222@... wrote: Hi Jen, Happy belated Birthday! I hope you get to feeling better, sinus are just the worst. ~~ How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Thanks Donna, I did have a good birthday. Trying to shake this sinus infection thing. JenDonna M-P <donna112520@...> wrote: Hi Jen,I'm sorry you've been sick - I hope you feel bettersoon. Glad you had a good birthday!Donna--- from Michigan <volleyjen0416@...>wrote:> Hi Everyone, I ended up getting a bad sinus> infection so I haven't been exercising much except> for the usual playing volleyball and bowling. I> then had TOM come to town which made me feel worse! > Luckily now TOM is gone (almost) and I am going to> start walking again (outside if the temps are in the> mid 60's) and doing my exercise videos/dvds. I know> that is rotten sinus infection can hang around for> months and I can't afford to wait until I'm feeling> 100% well because I will be setting sail at the end> of August. I'm going on a cruise to Alaska in case> I didn't tell you all before and I want to lose a> few pounds before I have to buy clothes for my trip.> > Today (April 16th) is my birthday! I had a> great day. I went to a Detroit Tiger Baseball game> and went out to eat afterwards. It was a little> chilly but the Tigers won so that's all I really> care about > > Well, that's the update on me,> > > Jen> > > ---------------------------------> Love cheap thrills? Enjoy PC-to-Phone calls to 30+> countries for just 2¢/min with Messenger withVoice.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi - Sorry I haven't written in a while - I've been crazy and we're getting ready to move soon (unexpected) so I haven't had a lot of free time, but think about you and often. As far as what to tell them.... If I recall, the other place is closer, no? Perhaps, you can use that angle. If you're working with a state agency or school case manager, discuss it with them and let them know. It would be great if the " closer to home " would work. The fact that she's surviving where she is I think speaks that she is stable. My daughter was moved from one residential to another program (at their request). They were very kind though - they explained it to her as she did not fail the program, the program failed her and was not the correct match (this was a co-ed program - definite nightmare). Everything you're describing is very familiar. See, when my daughter went to Residential, although bipolar, she NEEDED behavior modification. Also, she need to be safe and I couldn't keep her safe at home any more. These residential facilities are geared not so much towards an OCD program or bipolar program, etc but behavior modification for these kids. Some of the things you describe are exactly what I also witnessed. BUT, in the long run, there really was a reason. My daughter needed to understand that yes, she had bipolar, BUT she also needed to learn how to live amongst society and behave appropriately and independently if she were to have any chance at success. Yes, she hated it and complained, but at the same time made friends as is and enjoyed helping other residents (underneath her " tough persona " of course). Although at the time I felt exactly what you are feeling, looking back I wouldn't have done it any other way. My daughter is the success she is today because of my " tough love " back then. She readily admits this to me almost every day. I'm proud of the beautiful young woman she has developed into. Well, I'm glad you're keeping us updated - I'll write again soon - It's been crazy hectic and well - not a lot of time in between. I am glad you got to spend part of Mother's Day with and I'm sure she TOTALLY APPRECIATED it. It sounds like you saw some kind of change or " gentleness " to her on the visit. I'm glad it was a successful albeit short visit. Keep us posted and I'll e-mail you soon - PROMISE! In a message dated 5/15/2006 6:03:33 PM Central Standard Time, Kidztalent@... writes: They said if the place she's in now will just confirm that is stable, they will take her. Now....the thing is....what do I say to them? I'm afraid they could get nastier, and won't say that is stable....just so the other place won't take . Geeze.....I feel like I have no control of anything. Well I need to go make some phone calls and see what happens. I'll let you know, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 I am so sorry to hear that - I wish I could help but being in New Zealand it is a long way LOL. I really could not believe this when I read it (I do believe it) but can not believe this is still happening in homes. My heart goes out to you and just reading this post makes me angry and upset.......... Take care and Big Cyber {{{HUGS}}} from little old New Zealand. Cheers Jaxx Update on Hi everyone... I hope you all had a nice Mother's Day. Mine was sort of bittersweet I guess...for lack of a better word. Well I thought I'd update you on and the residential facility she's in. I've been trying to give it a chance even though I'm not happy about her therapist there not " totally buying the whole OCD thing " . really had a good week there last week. She got an award for doing her own program that she made herself for her OCD....since the therapist wasn't willing to do anything to help her with her OCD. took it upon herself to do her own exposure-response therapy with the help of some of the other kids she's gotten to know there. She also earned her way up to the next level where she gets a few more privileges and hit " peak " with earning points on a daily basis which also gets extra privileges. She also helped her roommate to earn the next level as well. Her roommate has been there for 5 months and was still on the bottom level....so helped her and herself to make it to the next level together. She also took it upon herself to run for " exec " and won....which her therapist said is very rare that a kid wins first time running. So all in all...program-wise....she had a great week. So since earning the next level....she was supposed to be given the privilege of an overnight at home over the weekend. Her therapist told me that she thought it might be better for though if I just got a hotel locally (it's 2 hours away)...because she was afraid that may not want to return if I took her home. So I was fine with that especially with the long ride and it being only one night. Well was all excited cause she earned this overnight in time for Mother's Day. She's always made a big deal over Mother's Day. Well the stupid therapist decided that even though had an excellent week...that didn't deserve an overnight cause she thought maybe was only doing such a good job last week so that she could have an overnight. What the hell???????!!!!!!! Whatever 's reason was for having such a good week and really working the program..............whatever!!! She did great!! Doesn't that earn some praise????? What bullsh*t!!!! She totally earned the overnight privilege and had it taken away anyway!!! That is just wrong!!!!! I was so pissed!!!! was in tears. She said it never matters how well she does there.....there's never any praise.....and nothing is good enough. How the hell is this place supposed to be raising her self esteem?? I'm over giving them a chance. So anyway....all they allowed was 2 hours off grounds with me. Of course I tried to make feel everything was fine and not to be upset. I took her to shopping. She wanted to get me something for Mother's Day. She bought me 2 Chicken Soup for the Mother's Soul books. She loves all those Chicken Soup books and has always tried to get me to read them. She even let me hug and kiss her in the mall. In the past, she never even wanted to be seen with me let alone hug or kiss her! Then we picked up something to eat and went back to the facility and had a picnic on the grounds just outside her dorm. While we were sitting there a girl inside had a huge meltdown. You could hear her outside screaming and banging things. said this girl does this almost every day. feels sorry for her. She said the staff is really mean to this girl and pushes her to the tantrum....then they laugh at her. At first, I didn't totally believe that the staff makes fun of the girl. But then a couple other staff members walked by us outside and they were totally mocking and laughing at the girl.....right in front of me!!! I was shocked!! So I can only imagine how it is when I'm not around. So I've decided I'm definitely getting her out of there. I called the place that was originally supposed to go to. (the place we took her to where she became really nasty and threatening and then ended up in the hospital) I told them has been in this other facility and asked what it would take for them to reconsider taking again. They said if the place she's in now will just confirm that is stable, they will take her. Now....the thing is....what do I say to them? I'm afraid they could get nastier, and won't say that is stable....just so the other place won't take . Geeze.....I feel like I have no control of anything. Well I need to go make some phone calls and see what happens. I'll let you know, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 That’s a lovely story! Thank you for sharing it. Sara x Update on Hi All Just a quick update on my (one of many I see!). is 7 years old and was diagnosed with autism at age 3. We started on the GFCF/Sugar free diet before his diagnosis due to severe ezcema. For the first 2 years, we focussed heavily on ABA which worked well for and enabled him to integrate full time into mainstream. After that we have been majoring on biomed and are under Dr Usman in the US. We have been chelating and using MB12 for 18 months. Recently we have started MB12 shots on a daily basis and have also introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is still dumping metals, mainly in the fecal sample. Nickel and cadmium levels have now dropped, as has mercury. More lead, antimony and uranium (where the F*** does that come from!) are coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all the rest in the green. We have also been doing brushing therapy for the last 10 months to work on primative retained reflexes. The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough. Anyway, on thursday last week he came home with another love note, this time signed. My dd and I launched into questioning mode and it turns out that he has kissed her on the forehead and cheek and hugged her and she has 'kissed me a hundred times all over my face'. What is he like!! Apparently 'She liked it!' and 'We are going to get married'. Had to tell his LSA that I was shocked that this was going on in school!! OMG, my 10 year old NT dd has never even looked at boys and here is , who I cried bucket loads of tears over cos he would never have friends, making rather too rapid gains with the opposite sex! At his annual review last week, the SENCO reported he and his best friend Ben had been discussing which of their cousins had kissed and sniggering in that lovely boy way. Couldn't imagine we would ever be here - reading is the next major target for us, seems to have dyslexia. We are doing Fast Forward to reading in the holidays (a computer based programme from the US) I'll keep you informed if it works miracles! Tina -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 That’s a lovely story! Thank you for sharing it. Sara x Update on Hi All Just a quick update on my (one of many I see!). is 7 years old and was diagnosed with autism at age 3. We started on the GFCF/Sugar free diet before his diagnosis due to severe ezcema. For the first 2 years, we focussed heavily on ABA which worked well for and enabled him to integrate full time into mainstream. After that we have been majoring on biomed and are under Dr Usman in the US. We have been chelating and using MB12 for 18 months. Recently we have started MB12 shots on a daily basis and have also introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is still dumping metals, mainly in the fecal sample. Nickel and cadmium levels have now dropped, as has mercury. More lead, antimony and uranium (where the F*** does that come from!) are coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all the rest in the green. We have also been doing brushing therapy for the last 10 months to work on primative retained reflexes. The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough. Anyway, on thursday last week he came home with another love note, this time signed. My dd and I launched into questioning mode and it turns out that he has kissed her on the forehead and cheek and hugged her and she has 'kissed me a hundred times all over my face'. What is he like!! Apparently 'She liked it!' and 'We are going to get married'. Had to tell his LSA that I was shocked that this was going on in school!! OMG, my 10 year old NT dd has never even looked at boys and here is , who I cried bucket loads of tears over cos he would never have friends, making rather too rapid gains with the opposite sex! At his annual review last week, the SENCO reported he and his best friend Ben had been discussing which of their cousins had kissed and sniggering in that lovely boy way. Couldn't imagine we would ever be here - reading is the next major target for us, seems to have dyslexia. We are doing Fast Forward to reading in the holidays (a computer based programme from the US) I'll keep you informed if it works miracles! Tina -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 This is HUGE - well done him!! Anne-Marie -- In Autism Treatment , " Sass and Rem " <Moroza-@...> wrote: > > That's a lovely story! Thank you for sharing it. Sara x > > > > Update on > > > > Hi All > > > > Just a quick update on my (one of many I see!). is 7 years old > and was diagnosed with autism at age 3. We started on the GFCF/Sugar free > diet before his diagnosis due to severe ezcema. For the first 2 years, we > focussed heavily on ABA which worked well for and enabled him to > integrate full time into mainstream. > > > > After that we have been majoring on biomed and are under Dr Usman in the US. > We have been chelating and using MB12 for 18 months. > > > > Recently we have started MB12 shots on a daily basis and have also > introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is > still dumping metals, mainly in the fecal sample. Nickel and cadmium levels > have now dropped, as has mercury. More lead, antimony and uranium (where > the F*** does that come from!) are coming out. Beryllium, Lead, nickel and > tungsten are in the yellow, all the rest in the green. > > > > We have also been doing brushing therapy for the last 10 months to work on > primative retained reflexes. > > > > The big news is that is now in love!! He has been admiring a rather > cute brunette in his class for a while, but I don't think she knew of his > affection til he did a lightening raid in the classroom - ran up, quick kiss > and retreated! Just before half term he came home with a card in his book > bag saying 'Dear , I love you!' annonymous but he claimed it was from O > and told us 'She doesn't run away from me anymore.' We all agreed that was > a breakthrough. > > > > Anyway, on thursday last week he came home with another love note, this time > signed. My dd and I launched into questioning mode and it turns out that he > has kissed her on the forehead and cheek and hugged her and she has 'kissed > me a hundred times all over my face'. What is he like!! Apparently 'She > liked it!' and 'We are going to get married'. Had to tell his LSA that I > was shocked that this was going on in school!! > > > > OMG, my 10 year old NT dd has never even looked at boys and here is , > who I cried bucket loads of tears over cos he would never have friends, > making rather too rapid gains with the opposite sex! At his annual review > last week, the SENCO reported he and his best friend Ben had been discussing > which of their cousins had kissed and sniggering in that lovely boy way. > > > > Couldn't imagine we would ever be here - reading is the next major target > for us, seems to have dyslexia. We are doing Fast Forward to reading > in the holidays (a computer based programme from the US) > > > > I'll keep you informed if it works miracles! > > > > Tina > > > > > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 This is HUGE - well done him!! Anne-Marie -- In Autism Treatment , " Sass and Rem " <Moroza-@...> wrote: > > That's a lovely story! Thank you for sharing it. Sara x > > > > Update on > > > > Hi All > > > > Just a quick update on my (one of many I see!). is 7 years old > and was diagnosed with autism at age 3. We started on the GFCF/Sugar free > diet before his diagnosis due to severe ezcema. For the first 2 years, we > focussed heavily on ABA which worked well for and enabled him to > integrate full time into mainstream. > > > > After that we have been majoring on biomed and are under Dr Usman in the US. > We have been chelating and using MB12 for 18 months. > > > > Recently we have started MB12 shots on a daily basis and have also > introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is > still dumping metals, mainly in the fecal sample. Nickel and cadmium levels > have now dropped, as has mercury. More lead, antimony and uranium (where > the F*** does that come from!) are coming out. Beryllium, Lead, nickel and > tungsten are in the yellow, all the rest in the green. > > > > We have also been doing brushing therapy for the last 10 months to work on > primative retained reflexes. > > > > The big news is that is now in love!! He has been admiring a rather > cute brunette in his class for a while, but I don't think she knew of his > affection til he did a lightening raid in the classroom - ran up, quick kiss > and retreated! Just before half term he came home with a card in his book > bag saying 'Dear , I love you!' annonymous but he claimed it was from O > and told us 'She doesn't run away from me anymore.' We all agreed that was > a breakthrough. > > > > Anyway, on thursday last week he came home with another love note, this time > signed. My dd and I launched into questioning mode and it turns out that he > has kissed her on the forehead and cheek and hugged her and she has 'kissed > me a hundred times all over my face'. What is he like!! Apparently 'She > liked it!' and 'We are going to get married'. Had to tell his LSA that I > was shocked that this was going on in school!! > > > > OMG, my 10 year old NT dd has never even looked at boys and here is , > who I cried bucket loads of tears over cos he would never have friends, > making rather too rapid gains with the opposite sex! At his annual review > last week, the SENCO reported he and his best friend Ben had been discussing > which of their cousins had kissed and sniggering in that lovely boy way. > > > > Couldn't imagine we would ever be here - reading is the next major target > for us, seems to have dyslexia. We are doing Fast Forward to reading > in the holidays (a computer based programme from the US) > > > > I'll keep you informed if it works miracles! > > > > Tina > > > > > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 What a sweetie! Jane Update on Hi All Just a quick update on my (one of many I see!). is 7 years old and was diagnosed with autism at age 3. We started on the GFCF/Sugar free diet before his diagnosis due to severe ezcema. For the first 2 years, we focussed heavily on ABA which worked well for and enabled him to integrate full time into mainstream. After that we have been majoring on biomed and are under Dr Usman in the US. We have been chelating and using MB12 for 18 months. Recently we have started MB12 shots on a daily basis and have also introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is still dumping metals, mainly in the fecal sample. Nickel and cadmium levels have now dropped, as has mercury. More lead, antimony and uranium (where the F*** does that come from!) are coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all the rest in the green. We have also been doing brushing therapy for the last 10 months to work on primative retained reflexes. The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough. Anyway, on thursday last week he came home with another love note, this time signed. My dd and I launched into questioning mode and it turns out that he has kissed her on the forehead and cheek and hugged her and she has 'kissed me a hundred times all over my face'. What is he like!! Apparently 'She liked it!' and 'We are going to get married'. Had to tell his LSA that I was shocked that this was going on in school!! OMG, my 10 year old NT dd has never even looked at boys and here is , who I cried bucket loads of tears over cos he would never have friends, making rather too rapid gains with the opposite sex! At his annual review last week, the SENCO reported he and his best friend Ben had been discussing which of their cousins had kissed and sniggering in that lovely boy way. Couldn't imagine we would ever be here - reading is the next major target for us, seems to have dyslexia. We are doing Fast Forward to reading in the holidays (a computer based programme from the US) I'll keep you informed if it works miracles! Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 In a message dated 12/06/2006 23:07:21 GMT Daylight Time, simon_tinawood@... writes: The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough. >>>OMG, how awesoem and scarey LOL Tom, 11.5 has just announced he is 'going out' with Beth, a girl from his tutor group Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 : I certainly wish I would have known about this camp sooner!! Hannah was really diasappointed we can't go to Atlanta. We live about 1 hour away from Lake Geneva. Are you from Wisconsin? If so, where do you live. We live in Waukesha County in Menomonee Falls. tim chesney <tec1959@...> wrote: First of all thanks to all who gave me the words to confront the doctor about Jen and her shots. As you might not remember Jen was have trouble with the shot methroxate and the side effects. Her eye is flared again. I had to wait 1 week to see the dr. Could not get me in sooner. Well turns out Jens arthritis is in remission and her eye is flared. The dr decide to switch her to pills. ten a week. We were told to crush them and that this would help with side effects. The dr told Jen she has to comply ths time otherwise she will be put on a med that they do by a line. I think Jen will listen this time. Thanks again for your support. We also are wondering if anyone is going to camp Jam in Lake Geneva Wis july 21-23 Thanks and age 12 poly with uvestis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Hi , We live fifteen minutes from Lake Geneva but I know nothing about this camp. Sometimes it seems that communication about things is not so good. ( 8 Poly) > First of all thanks to all who gave me the words to > confront the doctor about Jen and her shots. As you > might not remember Jen was have trouble with the shot > methroxate and the side effects. Her eye is flared > again. I had to wait 1 week to see the dr. Could not > get me in sooner. Well turns out Jens arthritis is in > remission and her eye is flared. The dr decide to > switch her to pills. ten a week. We were told to crush > them and that this would help with side effects. The > dr told Jen she has to comply ths time otherwise she > will be put on a med that they do by a line. > > I think Jen will listen this time. Thanks again for > your support. > > We also are wondering if anyone is going to camp Jam > in Lake Geneva Wis july 21-23 > > Thanks > and age 12 poly with uvestis > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hey all We live in Lake in the Hills Illinois which is 44 miles from the Wis Border. My mother in law lives in Delavan. We have been goin to camp since 2001. seems to make new friends each year. She enjoys it beacuse they have crafts and campfires. They even have a talent show. The children who attend our not spoiled or do not feel sorry for themselves. Their is no name calling like sometimes experience at school. I would like to have gone to the conference beacuse I heard its a learning experience. Camp is more a social and fun thing to do. The conferecne is fun I hear. YOu seem to learn more about your child's condition. I think if you call 312-372-2080 and talk to someone you might still be able to attend camp, and there is one in Wis dells call camp mash. and --- heckmom2 <heckmom2@...> wrote: > Hi , > We live fifteen minutes from Lake Geneva but I know > nothing about > this camp. Sometimes it seems that communication > about things is > not so good. > ( 8 Poly) > > > First of all thanks to all who gave me > the words to > > confront the doctor about Jen and her shots. As > you > > might not remember Jen was have trouble with the > shot > > methroxate and the side effects. Her eye is flared > > again. I had to wait 1 week to see the dr. Could > not > > get me in sooner. Well turns out Jens arthritis is > in > > remission and her eye is flared. The dr decide to > > switch her to pills. ten a week. We were told to > crush > > them and that this would help with side effects. > The > > dr told Jen she has to comply ths time otherwise > she > > will be put on a med that they do by a line. > > > > I think Jen will listen this time. Thanks again > for > > your support. > > > > We also are wondering if anyone is going to camp > Jam > > in Lake Geneva Wis july 21-23 > > > > Thanks > > and age 12 poly with uvestis > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 What a wonderful essay. I agree you have a very special son. Congratulations for instilling such great values in him. Connie stephandkip <stephandkip@...> wrote: has had his CI for three years now. I have been very busy teaching high school for the last two years, but I have tried to check in and read posts when I could. This list really helped us through the CI process. is now 11 and is in the 5th grade. I have always known that he is our most spiritual child and the essay he wrote at school this week just reinforces that. I truly believe that Ben is the wonderful boy that he is because of his hearing loss. Ben may not be able to hear as well as many people, but I believe he listens better than most. Maybe not hearing the world very well allows him to hear the Holy Ghost better. May he never change! Here is the paper he wrote this week: I'm in fifth grade and I want to set some goals. My goals are things I say I will accomplish instead of hope or try to accomplish. If I say " try " then that means I will try and might succeed. If I say " hope " , I probably won't accomplish anything. If I say " will " that means I will do what I have said. One goal I set is to think nicely about other people and have pure thoughts. Another goal I will complete is keeping my room clean. The most important goal for me is to get my homework done fast and still do a good job. My academic goal is to get my homework done quickly. The reason I want to do homework fast is to have enough time to check it over twice and still have time to play or practice basketball. This way I will be able to watch Duke play basketball as well. My behavior goal is to think nicely about people and have pure thoughts. I want to keep my thoughts pure because when I think rudely I hurt myself. When I start to think badly I can sing a song in my head to forget about bad stuff. This goal will help me be a nicer and happier person. My personal goal is to keep my room clean. My room is already clean so all I need to do is keep it nice and clean. I want it clean so I can walk through my room. I will keep my room clean by keeping my four year old sister out of the toy box. I will clean up after myself. These are three goals I will succeed at instead of hope or try to do. My 5th grade goals will be accomplished soon enough. I am a Duke Blue Devil and a Grady Brown Cougar that plans to succeed. I think I will have a pretty good year now that I have goals. " The Miracle at Ohio State " aka Nucleus Freedom Implanted 10/04/2005 Activated 11/1/2005 Surgery: Ohio State University Surgeon: Dr. Bradley Welling http://internalmedicine.osu.edu/article.cfm?ID=2021 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Gosh that was a special message. I sincerely enjoyed reading 's essay. Please tell him how much I liked it and tell him to keep up the good work! His desire to set goals is amazing at his young age. We all need to do this no matter how old we are. You sure have reason to be proud of him. I bet his parents are pretty special as well. Alice http://www..com Quote Link to comment Share on other sites More sharing options...
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