Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Greetings Marie, It is nice to meet you. It sounds like you are having some challenges with three children with special needs. Yes, I would like to hear what you have learned in 25+ years of experience, it must be a lot by now. I have four grown children, and one of my three sons has a variety of problems. He is 43 years old now and they started when he was about two years old. One day he just started having seizures, they were very small at first, just twitches basically. I took him to the pediatrician who figured they were seizures and so he started him on anticonvulsants. Valium was new then so he started with it, it was a big mistake. The seizures escalated terribly to grand mal scale, he was having seizures of one kind or other nearly every day. He had an EGG but it didn't show anything. I read an article on Valium and realized he was addicted so took him off, it also was bad, very bad, he had withdrawal, but I got him off. Then the doctor tried Dilantin, that was awful too. I gave it to him for a number of years and regret I ever did, cannot stand to see old videos of him drugged out on the stuff. I took him to a special ed school here in our area for a number of years, but he did awful there. I think a good share of his problems came from the drugs he took. They said he was retarded, but I was always skeptical, for one he never did good in any classes they put him in, just did not want to "comply" they called it, so they labeled him "non-compliant," and tried programs to make him comply, to break his spirit actually, and they failed also. I kind of liked it they failed, there was a part of me that admired his spirit. Then he was mainstreamed into junior high, was actually off drugs for a few years, and began to do better in some ways, but being thrust into public school made him go crazy and he began to have meltdowns, would bound around the house and tear things up, pull down the curtains, etc. All the while he would bite his arm and scream, but he did not talk anymore. Then we tried high school mainstreaming but it was bad too. I took him out of school when he was 18, and he slowly started to get better, no more meltdowns. Now he has many problems, has a new diagnosis, CP, Cerebral Palsy, no doubt from all the seizures. He does not swallow well so is on a food tube, and he wears Depends now too. We have to watch him closely for pneumonia, but otherwise he is very alert and very healthy, has gained at least 20 lb. on the food tube. His days are spent sitting in his chair playing with his old tennis shoe and a shoe lace, he laces the lace in and out of the holes. He has always liked putting little things in holes, all his life. He is pretty happy doing that, works hard all day, and at bed time is very glad to go to sleep, no more violence, meltdowns, and very few seizures these days. Life is peaceful. He walks with help, is strong but has no balance anymore, and he likes to walk so we walk him. It helps him to breath deeply and then we give him Albuterol treatments to keep his lungs working better, his doctor said he needs that. Well that is about it here, it has been an interesting life for our family that is for sure. He loves it when his nieces and nephews come over, my grandkids. Jump right in, can't wait to hear more from you, Carolyn, a mom and grandma in Oregon New to Group Hello Everyone, I am a mom with of 3 wonderful children all with some form of High functioning Autism. I have a wonderful young adult daughter who we raised without knowing what was wrong until 2 years after our identical twin boys were both diagnosed ASD. She was 14 at the time of her diagnosis, our boys were 5 then. Our daughter and 1 twin are both Aspergers although my son is more severe than his older sister and my other son is Autism NOS "not otherwise specified" and is our most challenging. I have learned so much as a parent of special needs and as a professional working with special needs children and adults that I have wanted to learn much more. I joined your group for an opportunity to share my 25+ years experience and to grow more myself too. Thank you for the priviledge of chatting with you and I am looking forward to getting to know you and your special ones. Thanks Marie www.freedom4families.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Thank you Carolyn for the nice welcome. It is very appreiciated. You definitely have a lot to contribute as well from what I read of your story. Thank you again for sharing. Sometimes I think the hardest thing about having special needs kids is that we end up spending so much of our time wrapped up in our family and how much work is involved, that other families don't have to go through, that we forget the outside world exists out there at all. I find it difficult to share with others what we go through, but our lives have improved a lot over the years and it is definitely easier than it was when my boys were little. We did try the medication route with our most severe but he had some serious and unusual side affects and we decided for us that medicating our children was not an answer. So far we have been able to stick to that commitment and all 3 of our kids are not medicated. I live in Canada and services up here are not as accessible as in the US and also the research is about 5 to 10 yrs behind the US as well, so if you want to help your ASD child up north, then the Internet is your best resource. We have debated about moving back to the US several times but it is very hard to move for the kids, so we muddle through up here and I learn all I can about scientifically proven therapies such as ABA, so I can use them with our boys. Thanks again Marie www.freedom4families.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Hello and welcome to the group. First here's a big (((hug)))! I know what you are going through. My, dd, Bre (16) has bad thought ocd involving death and had thoughts of killing herself too. Pure-O is hard to treat, but thanfully we have a really good therapist who specializes in ocd and she has helped Bre so much. She still struggles time to time, but for the most part is living her life quite well. Bre is on zoloft and buspar for meds. Bre had therapy for a year and now goes as needed. Ocd comes and goes and different stressors will make it worse. Right now her grandpa is not doing well and her boyfriend is going off to college so she is having alot of anxiety. I never reassure her when I know it is ocd. It is so hard because as parents we want to reassure and say everything is fine. We talk alot about how life IS a big risk in general. There are no quarantees and something could happen to anyone at any time. I don't sugar coat things because that just fuels the ocd fire. Bre had to learn to ride out the anxiety and that is very hard for her. But with time and exposures she is learning how to do that. Does your dd, still see an ocd specialist? I highly recommend one who really knows ocd. I always remind Bre that when ocd gets bad again that she can overcome it again. We switched her from luvox to zoloft recently. I hope with age that someday she will no longer have to be on meds. But for now she does need them. I am not sure about what to do for the rituals. Maybe reward her when she doesn't retrace steps, etc. Bre does nothing that I can see. She is more reassurance seeking. So someone else can respond to that. Do try to take care of yourself and it is natural to get discouraged from time to time. When I am feeling down I post here and someone always lifts me up!! Sandy > > Hi Everyone, > I recently joined this group in the hopes that it would be more > helpful. Originally, I belonged to another group for OCD > sufferers and while it was informative I didn't feel that it helped > me as a parent. My 16 yr old daughter has OCD. She was diagnosed > over a year ago and had immediate success with Paxil and a LCSW. > Therpay was stopped after about 1/2 yr. Then this Sept. her OCD > resurfaced big time. We started seeing the therapist again but no > luck. We decided to try another drug so our family dr. sent us to a > psychiatrist as he was not comfortable with Luvox. WE were at 300 > mg and really no difference so we changed from LCSW to > psychiatrist. Her OCD has everything to do with dying. Either > herself or others close to her. WE had immediate results with new > person and CBT in fact we got off all Luvox and just kept Serequel > for night. All of the sudden it seems to be resurfacing again. And > I am frazzled. It is so hard to watch her struggling and wondering > if I am doing all I should. Is it that the medicine was really > working? Do you all respond when your child is retracing steps, > laying things a certain way, etc.? Or do you just let it go. I was > told not to reassure her if she calls and asks me if I am ok but I > am never sure what I should be doing when she is performing her > rituals. Any thoughts would be appreciated. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Hello and welcome to the group. First here's a big (((hug)))! I know what you are going through. My, dd, Bre (16) has bad thought ocd involving death and had thoughts of killing herself too. Pure-O is hard to treat, but thanfully we have a really good therapist who specializes in ocd and she has helped Bre so much. She still struggles time to time, but for the most part is living her life quite well. Bre is on zoloft and buspar for meds. Bre had therapy for a year and now goes as needed. Ocd comes and goes and different stressors will make it worse. Right now her grandpa is not doing well and her boyfriend is going off to college so she is having alot of anxiety. I never reassure her when I know it is ocd. It is so hard because as parents we want to reassure and say everything is fine. We talk alot about how life IS a big risk in general. There are no quarantees and something could happen to anyone at any time. I don't sugar coat things because that just fuels the ocd fire. Bre had to learn to ride out the anxiety and that is very hard for her. But with time and exposures she is learning how to do that. Does your dd, still see an ocd specialist? I highly recommend one who really knows ocd. I always remind Bre that when ocd gets bad again that she can overcome it again. We switched her from luvox to zoloft recently. I hope with age that someday she will no longer have to be on meds. But for now she does need them. I am not sure about what to do for the rituals. Maybe reward her when she doesn't retrace steps, etc. Bre does nothing that I can see. She is more reassurance seeking. So someone else can respond to that. Do try to take care of yourself and it is natural to get discouraged from time to time. When I am feeling down I post here and someone always lifts me up!! Sandy > > Hi Everyone, > I recently joined this group in the hopes that it would be more > helpful. Originally, I belonged to another group for OCD > sufferers and while it was informative I didn't feel that it helped > me as a parent. My 16 yr old daughter has OCD. She was diagnosed > over a year ago and had immediate success with Paxil and a LCSW. > Therpay was stopped after about 1/2 yr. Then this Sept. her OCD > resurfaced big time. We started seeing the therapist again but no > luck. We decided to try another drug so our family dr. sent us to a > psychiatrist as he was not comfortable with Luvox. WE were at 300 > mg and really no difference so we changed from LCSW to > psychiatrist. Her OCD has everything to do with dying. Either > herself or others close to her. WE had immediate results with new > person and CBT in fact we got off all Luvox and just kept Serequel > for night. All of the sudden it seems to be resurfacing again. And > I am frazzled. It is so hard to watch her struggling and wondering > if I am doing all I should. Is it that the medicine was really > working? Do you all respond when your child is retracing steps, > laying things a certain way, etc.? Or do you just let it go. I was > told not to reassure her if she calls and asks me if I am ok but I > am never sure what I should be doing when she is performing her > rituals. Any thoughts would be appreciated. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Hi, welcome to the group! I joined this group years ago when my now 18 yr old son was back in 6th grade and OCD seemed to pop up overnight. This group was always my best support, somewhere to go to vent/complain on bad days or ask for suggestions, offer some, or just read and know I wasn't alone! Just my thoughts here re your daughter - Since her OCD seems to come back so strong when off medication and she doesn't seem able to - right now - fight back with CBT/ERP alone, if she is willing to stay on medication, I would go back on and stay on it for a while. If OCD seems to disappear when she's on medication, many times parents will have the doctor back their child's dosage down so that there is *some OCD* to work on in therapy, where the child/teen can learn and participate in how to handle/treat their OC behaviors. My son used to have rituals, redo things. He went off his Celexa at the end of 10th grade, after almost 2 years on it...(let's see, began it about first day of 9th grade, stopped it last month of 10th grade...) and, as I feared, OCD popped back up about 7-8 months later. And this time he refused to go back on medication...still isn't on it and just suffers with scrupulosity/religious issues, bad thoughts; nothing like he first began OCD with. We never could find a therapist around our area but managed the first time, slowly, and got through it all and was doing well! Just read & read about OCD, got tips here, etc., and tried things on our own. Would have gone much faster/better with an experienced therapist, I'm sure. There's different ways you/she might approach things like retracing steps, laying things a certain way. Just some thoughts - I think Sandy mentioned rewards. That's a good motivator for a lot of kids/teens. She could earn $ or points that she could " build up " over time to get some item she might be willing to earn or some " event " she might like. And reward *effort*, just trying to " boss back " OCD is worth some $/points. She may not " boss back " each time she retraces, or other, each day. Some parents have found setting aside time to work on OCD helps, ignore it the other times of the day. For instance, if there is a place she always retraces steps, at that time have her try it and try not to retrace/repeat them; she might try just delaying (even by seconds, work up to minutes) giving in to the urge/need to redo it. Same with laying things a certain way; try to mess them up and wait trying to " fix it " or try to on purpose lay them the wrong way. I was a " nag " with at times. If things just seemed too hectic to work on OCD or I wanted him calm/stress-free for homework or something, I would often just comment to him as I saw him do some OCD thing (or even if I was, ahem, accommodating him at the time), I would say something like, " Now you know what you (or I) should do is... " or ask him to tell me what it was we/he should have been doing regarding bossing back/working on his OCD. And it helps some people to not try to work on *all* the OC behaviors - guess you know that though. But many times just picking 1,2 or 3 things to work on, ignore the rest of them, helps; a little success with 1 thing sometimes makes it easier to breeze through some of the others. Humor works sometimes. If she calls to see if you're OK, you could try some joking answer, " no I'm not, I'm standing on my head and can't seem to get down...or you're on a runaway horse or you're getting a headache from someone who keeps calling to see if you're okay or.... If she calls a lot, try to set a limit on how many times/day. Even just decreasing 1 or 2 calls after a week or so is progress, baby steps maybe but still progress. Well, just some very quick thoughts and typing! Glad you found us! single mom, 3 sons , 18, with OCD, dysgraphia and Aspergers(autism/mild) > > Hi Everyone, > I recently joined this group in the hopes that it would be more > helpful. Originally, I belonged to another group for OCD > sufferers and while it was informative I didn't feel that it helped > me as a parent. My 16 yr old daughter has OCD. She was diagnosed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 Hi and welcome. is right. . read all you can to educate yourself on OCD and how correct treatment is done for OCD. Good authors are Tamar Chansky, Aureen Wagner, and March. Finding a qualified therapist is also very important, but they can be rare. CBT (cognitive behavioral therapy) for OCD and ERP (exposure and response prevention) are the main things a therapist should be using with your daughter. We are seeing a therapist that has started our son on a few small things and we are working our way up to the tougher stuff. He is doing exposures to wanting to straighten certain things to a certain angle so that they feel right. So far he is responding well, so we are very hopeful. Eventually, the psychologist says we will use loop tapes to desensitize our son to the intrusive thoughts that plague him. I would guess that your daughter is relapsing when you take her off of the meds. Our son relapsed after 7 months of having his meds gone, and like Chris's son, our son's OCD also changed in some ways. . .More intrusive thought stuff this time. He is back on meds, but we are trying to keep it at a level where he is getting some relief, but not total relief, so we can work on the therapy part. We are very hopeful at this time. It's very easy for OCD to frazzle us, so I think we all can understand that feeling. You will find people here who can relate and know what it's like to watch your beloved child struggle with OCD. It's a great place to get support, understanding, and helpful information. Again, welcome. BJ > > Hi Everyone, > I recently joined this group in the hopes that it would be more > helpful. Originally, I belonged to another group for OCD > sufferers and while it was informative I didn't feel that it helped > me as a parent. My 16 yr old daughter has OCD. She was diagnosed > over a year ago and had immediate success with Paxil and a LCSW. > Therpay was stopped after about 1/2 yr. Then this Sept. her OCD > resurfaced big time. We started seeing the therapist again but no > luck. We decided to try another drug so our family dr. sent us to a > psychiatrist as he was not comfortable with Luvox. WE were at 300 > mg and really no difference so we changed from LCSW to > psychiatrist. Her OCD has everything to do with dying. Either > herself or others close to her. WE had immediate results with new > person and CBT in fact we got off all Luvox and just kept Serequel > for night. All of the sudden it seems to be resurfacing again. And > I am frazzled. It is so hard to watch her struggling and wondering > if I am doing all I should. Is it that the medicine was really > working? Do you all respond when your child is retracing steps, > laying things a certain way, etc.? Or do you just let it go. I was > told not to reassure her if she calls and asks me if I am ok but I > am never sure what I should be doing when she is performing her > rituals. Any thoughts would be appreciated. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 Hi and welcome. is right. . read all you can to educate yourself on OCD and how correct treatment is done for OCD. Good authors are Tamar Chansky, Aureen Wagner, and March. Finding a qualified therapist is also very important, but they can be rare. CBT (cognitive behavioral therapy) for OCD and ERP (exposure and response prevention) are the main things a therapist should be using with your daughter. We are seeing a therapist that has started our son on a few small things and we are working our way up to the tougher stuff. He is doing exposures to wanting to straighten certain things to a certain angle so that they feel right. So far he is responding well, so we are very hopeful. Eventually, the psychologist says we will use loop tapes to desensitize our son to the intrusive thoughts that plague him. I would guess that your daughter is relapsing when you take her off of the meds. Our son relapsed after 7 months of having his meds gone, and like Chris's son, our son's OCD also changed in some ways. . .More intrusive thought stuff this time. He is back on meds, but we are trying to keep it at a level where he is getting some relief, but not total relief, so we can work on the therapy part. We are very hopeful at this time. It's very easy for OCD to frazzle us, so I think we all can understand that feeling. You will find people here who can relate and know what it's like to watch your beloved child struggle with OCD. It's a great place to get support, understanding, and helpful information. Again, welcome. BJ > > Hi Everyone, > I recently joined this group in the hopes that it would be more > helpful. Originally, I belonged to another group for OCD > sufferers and while it was informative I didn't feel that it helped > me as a parent. My 16 yr old daughter has OCD. She was diagnosed > over a year ago and had immediate success with Paxil and a LCSW. > Therpay was stopped after about 1/2 yr. Then this Sept. her OCD > resurfaced big time. We started seeing the therapist again but no > luck. We decided to try another drug so our family dr. sent us to a > psychiatrist as he was not comfortable with Luvox. WE were at 300 > mg and really no difference so we changed from LCSW to > psychiatrist. Her OCD has everything to do with dying. Either > herself or others close to her. WE had immediate results with new > person and CBT in fact we got off all Luvox and just kept Serequel > for night. All of the sudden it seems to be resurfacing again. And > I am frazzled. It is so hard to watch her struggling and wondering > if I am doing all I should. Is it that the medicine was really > working? Do you all respond when your child is retracing steps, > laying things a certain way, etc.? Or do you just let it go. I was > told not to reassure her if she calls and asks me if I am ok but I > am never sure what I should be doing when she is performing her > rituals. Any thoughts would be appreciated. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Hi Everyone, Thank you for all the helpful advice. Actually, we were lucky enough to find a therpaist in port that works solely with CBT and ERP. It has helped tremendously. We went back for an appt today and when he called me in he said that knows exactly what needs to be done and probably could teach someone how to do it. It is that she is saying she can't at times. Her OCD isn't as widespread as it was earlier - seems to be mainly at home, especially at night and also a spike right before her menstrual cycle (which was weird when he said that he had asked that because that was something I was noticing). He is a very unusual therapist but took to him right away which was surprising. He asked her if there was anything that we could do to try and help her over an incident. She really couldn't think of anything. He doesn't like medication and I have to agree to a point. I'm always wondering what will happen later in life if she takes too much medicine now. I am a special education teacher and see what constant change in medication does to some kids. WE decided to see how it goes this week and he will see her back in a week. (he was seeing her everfy 2- 3 weeks). Thanks again for all your help and support. I feel that this is a much better place for me than the last support group. It is so hard to understand the OCD when you don't have it but interesting to read and receive help from parents that are dealing with it. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Hi Everyone, Thank you for all the helpful advice. Actually, we were lucky enough to find a therpaist in port that works solely with CBT and ERP. It has helped tremendously. We went back for an appt today and when he called me in he said that knows exactly what needs to be done and probably could teach someone how to do it. It is that she is saying she can't at times. Her OCD isn't as widespread as it was earlier - seems to be mainly at home, especially at night and also a spike right before her menstrual cycle (which was weird when he said that he had asked that because that was something I was noticing). He is a very unusual therapist but took to him right away which was surprising. He asked her if there was anything that we could do to try and help her over an incident. She really couldn't think of anything. He doesn't like medication and I have to agree to a point. I'm always wondering what will happen later in life if she takes too much medicine now. I am a special education teacher and see what constant change in medication does to some kids. WE decided to see how it goes this week and he will see her back in a week. (he was seeing her everfy 2- 3 weeks). Thanks again for all your help and support. I feel that this is a much better place for me than the last support group. It is so hard to understand the OCD when you don't have it but interesting to read and receive help from parents that are dealing with it. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Great news about your daughter's progress, Deb. Maybe she should teach all our kids how to do it. Now that I mention it, wouldn't it be great to have an older teen with OCD teach other kids how s/he worked through it? Maybe some day we'll have such a support group in every town... F. dwheeler221 <dwheeler2211@...> wrote: Hi Everyone, Thank you for all the helpful advice. Actually, we were lucky enough to find a therpaist in port that works solely with CBT and ERP. It has helped tremendously. We went back for an appt today and when he called me in he said that knows exactly what needs to be done and probably could teach someone how to do it. It is that she is saying she can't at times. Her OCD isn't as widespread as it was earlier - seems to be mainly at home, especially at night and also a spike right before her menstrual cycle (which was weird when he said that he had asked that because that was something I was noticing). He is a very unusual therapist but took to him right away which was surprising. He asked her if there was anything that we could do to try and help her over an incident. She really couldn't think of anything. He doesn't like medication and I have to agree to a point. I'm always wondering what will happen later in life if she takes too much medicine now. I am a special education teacher and see what constant change in medication does to some kids. WE decided to see how it goes this week and he will see her back in a week. (he was seeing her everfy 2- 3 weeks). Thanks again for all your help and support. I feel that this is a much better place for me than the last support group. It is so hard to understand the OCD when you don't have it but interesting to read and receive help from parents that are dealing with it. Deb --------------------------------- Building a website is a piece of cake. Small Business gives you all the tools to get online. --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Deb, maybe would work on just one thing between appts so she can report attempts/progress to the therapist, it could be her homework assignment. And don't know if I mentioned this before but some people have found setting up a certain time of the day to be helpful, e.g., maybe could do her OCD homework between 3:30 and 4 or something. I think menstrual cycles affect women in a lot of ways. I know of others with " issues " that seem to spike during their cycle. At night does seem to be harder for kids sometimes, less distraction I guess. And bedtime can be really tough for some! Was hard for for quite a while. Still is to a degree but in a different OCD way than years ago. Well, I'm glad to hear of a great therapist and hope can manage to get over that hump in her way! > > Hi Everyone, > Thank you for all the helpful advice. Actually, we were lucky > enough to find a therpaist in port that works solely with > CBT and ERP. It has helped tremendously. We went back for an appt > today and when he called me in he said that knows exactly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Welcome! Our 7 year old son was diagnosed w/OCD a few months ago and at the time when everything really hit the fan, I found this site very helpful. I would highly recommend the book " Freeing Your Child from Obsessive-Compulsive Disorder " (Tamar Chansky). It is full of great info. and practical ideas to implement. We were able to find a psychologist who does CBT and ERP, but I'm not sure we've done much ERP at this point. It may be because his is primarily the " bad thought " type and his biggest compulsion is confessions, although he does have a couple of checking rituals at times. I hope you find that just being able to connect with other parents here who can relate to the myriad of OCD challenges can be very helpful. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 A little more... We are in Boston, and I am wondering if there are others here from Boston as well. A ped friend of mine recommended we talk with Dr. Sundel and I noticed in the archives that someone else mentioned him. Are there other people in the area with whom we should speak? I'm open to talking to ANYONE! A bit more detail...Mia's fevers generally come out of nowhere. she'll be perfectly fine, and then start heating up, and next thing you know she's got 102, 103, 104...It's never gone over 104.6, thankfully. We went to Children's Hospital in May on the recommendation of our pediatrician for bloodwork and a urinalysis. Her white blood cell count was 20,000, so we also had an xray to rule out pneumonia. All of the other cultures came back negative. I am learning from reading the archives that if we get more blood drawn there are lots of important numbers to ask for, but at our hospital visit we were starting out with the idea that it might be an infection. We haven't noticed mouth sores but now that we know what to look for we will certainly look. I hate this idea of waiting for the next fever to strike, but at least we know it's nothing contagious and that we can treat it with tylenol and motrin in the meantime. Thanks again, Corrie > > Hi everyone, > My name is Corrie Stone- and my daughter, Mia, has just been given a preliminary > diagnosis of . She is sixteen months and has been getting fevers since January. Our > pediatrician at first thought there was a chance it might be FMF, and emailed a > rheumatologist colleague who thought it actually sounded like , given the regularity of > Mia's fevers. We haven't met with the rheumatologist yet and he will of course run other > tests, as there is a family history of childhood arthritis, but in the meantime we're working > with the idea that it might be . I've been reading through the archives and given other > people's descriptions of their children, it sounds pretty accurate to me. > > I feel so lucky that our pediatrician " caught " this pretty early--it sounds like others have > really struggled to get their doctors to think outside the box. Our Ped thought that it was so > strange that we were literally there once a month, and that when I would bring Mia in two > days later she was completely fine. > > We're not certain that it's , but in the meantime I am learning so much by reading > other people's stories. Thanks for sharing, and for letting us join you. > > Corrie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hi Corrie, I'm in Rhode Island. There are a few people on here from the boston area and Mass in general. Many see Dr. Sundel. I think he is the person you want to go see in the area. there is a lot of good info in the links section. including this one from printo.com http://www.printo.it/pediatric- rheumatology/information/UK/pdf/13_FEVER_UK.pdf > > > > Hi everyone, > > My name is Corrie Stone- and my daughter, Mia, has just been given a > preliminary > > diagnosis of . She is sixteen months and has been getting fevers since January. > Our > > pediatrician at first thought there was a chance it might be FMF, and emailed a > > rheumatologist colleague who thought it actually sounded like , given the > regularity of > > Mia's fevers. We haven't met with the rheumatologist yet and he will of course run other > > tests, as there is a family history of childhood arthritis, but in the meantime we're > working > > with the idea that it might be . I've been reading through the archives and given > other > > people's descriptions of their children, it sounds pretty accurate to me. > > > > I feel so lucky that our pediatrician " caught " this pretty early-- it sounds like others have > > really struggled to get their doctors to think outside the box. Our Ped thought that it > was so > > strange that we were literally there once a month, and that when I would bring Mia in > two > > days later she was completely fine. > > > > We're not certain that it's , but in the meantime I am learning so much by reading > > other people's stories. Thanks for sharing, and for letting us join you. > > > > Corrie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hi Corrie, I'm in Rhode Island. There are a few people on here from the boston area and Mass in general. Many see Dr. Sundel. I think he is the person you want to go see in the area. there is a lot of good info in the links section. including this one from printo.com http://www.printo.it/pediatric- rheumatology/information/UK/pdf/13_FEVER_UK.pdf > > > > Hi everyone, > > My name is Corrie Stone- and my daughter, Mia, has just been given a > preliminary > > diagnosis of . She is sixteen months and has been getting fevers since January. > Our > > pediatrician at first thought there was a chance it might be FMF, and emailed a > > rheumatologist colleague who thought it actually sounded like , given the > regularity of > > Mia's fevers. We haven't met with the rheumatologist yet and he will of course run other > > tests, as there is a family history of childhood arthritis, but in the meantime we're > working > > with the idea that it might be . I've been reading through the archives and given > other > > people's descriptions of their children, it sounds pretty accurate to me. > > > > I feel so lucky that our pediatrician " caught " this pretty early-- it sounds like others have > > really struggled to get their doctors to think outside the box. Our Ped thought that it > was so > > strange that we were literally there once a month, and that when I would bring Mia in > two > > days later she was completely fine. > > > > We're not certain that it's , but in the meantime I am learning so much by reading > > other people's stories. Thanks for sharing, and for letting us join you. > > > > Corrie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Hi , Welcome to the group. I'm sure you will find it a great source of information and support! My son was diagnosed last year at age 4 with ocd. Hugs! Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Hi , and welcome. My now 12yo daughter was similar at age 3. I took her for an psych opinion when she was that age, and the doctor said she couldn't diagnose her yet. When she was 7, the same doctor diagnosed her with ADHD (which was very obvious) with OCD tendencies. At age 12, her OCD went out of control. I used to think my daughter had aspergers or some form of autism because of her oddities. So many I'm not sure I can remember everything from back then. She's still definitely different! Laurie brendapreston <brendapreston@...> wrote: My name is and my 3 year old was just diagnosed with possible OCD. Because of his age, it is impossible to get a diagnosis. We brought him to a neurologist because he has shown some of the symptoms of autism and asperbers. So far, he is developmentally right on track, verbally great, but completely obsessed with certain items. He is fixated on balloons, strings, rocks, weeds. He collects things. He ties things. He doesn't want to play with his toys the way they are intended. He drives us crazy! We have an appt. with a psychologist who specializes in children and behavioral modification. At this time, he is too young to medicate and I feel better exploring other avenues first. I myself have ocd and have lived with nervous tics from early childhood. I'm on Paxil now and doing great. Just wanted to see if anyone else has preschoolers like me. Thanks, Our list archives, bookmarks, files, and chat feature may be accessed at: / . Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ), Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D. (http://massgeneral.org/pediatricpsych/staff/geller.html ),Aureen Pinto Wagner, Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are Birkhan, Castle, Joye, Kathy Mac, Gail Pesses, and Kathy . Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at louisharkins@... , louisharkins@... , louisharkins@... . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi Kris, Thank you for your response. You son is lucky to have such understanding parents. Funny, wants to pick EVERY weed he sees. We brought him to soccer and he was more interested in the dandelions than the ball. We start to see a therapist next month. tells me that he NEEDS these things and I do believe him. It's just hard knowing when enough is enough. Without his fixated objects around, he does much better. It's just hard keeping them away. > > > > My name is and my 3 year old was just diagnosed with > possible OCD. Because of his > > age, it is impossible to get a diagnosis. We brought him to a > neurologist because he has > > shown some of the symptoms of autism and asperbers. So far, he is > developmentally right on > > track, verbally great, but completely obsessed with certain items. > He is fixated on balloons, > > strings, rocks, weeds. He collects things. He ties things. He > doesn't want to play with his toys > > the way they are intended. He drives us crazy! > > > > We have an appt. with a psychologist who specializes in children > and behavioral modification. > > At this time, he is too young to medicate and I feel better > exploring other avenues first. I > > myself have ocd and have lived with nervous tics from early > childhood. I'm on Paxil now and > > doing great. > > > > Just wanted to see if anyone else has preschoolers like me. > > > > Thanks, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi Kris, Thank you for your response. You son is lucky to have such understanding parents. Funny, wants to pick EVERY weed he sees. We brought him to soccer and he was more interested in the dandelions than the ball. We start to see a therapist next month. tells me that he NEEDS these things and I do believe him. It's just hard knowing when enough is enough. Without his fixated objects around, he does much better. It's just hard keeping them away. > > > > My name is and my 3 year old was just diagnosed with > possible OCD. Because of his > > age, it is impossible to get a diagnosis. We brought him to a > neurologist because he has > > shown some of the symptoms of autism and asperbers. So far, he is > developmentally right on > > track, verbally great, but completely obsessed with certain items. > He is fixated on balloons, > > strings, rocks, weeds. He collects things. He ties things. He > doesn't want to play with his toys > > the way they are intended. He drives us crazy! > > > > We have an appt. with a psychologist who specializes in children > and behavioral modification. > > At this time, he is too young to medicate and I feel better > exploring other avenues first. I > > myself have ocd and have lived with nervous tics from early > childhood. I'm on Paxil now and > > doing great. > > > > Just wanted to see if anyone else has preschoolers like me. > > > > Thanks, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi, . I'm VickieG, aka: onelildeltagirl. I was diagnosed after a really bad car accident in 1984. I received numerous blood transfusions during that time and a couple years later received a call after donating blood for a cause. They simply said that I have the antibodies in my system and should see a dr. I thought that when you have antibodies for something in your system that your body has fought off something and has cleared it from your system. So, I told the lady I wouldn't give blood anymore and I am fine. Well, I finally say a dr. in GA a few years ago and he explained it to me. But with no symptoms and my feeling so well, no damage to my liver after all that time, we decided that he would do blood testing every three or six months and just keep an eye on it. Then, we moved to TN. where my new dr. said that if you have it, you need to get treated. So here I am. In treatment and in this support group. I just took my 6th. Pegasys shot last Tuesday night and have had very few symptoms. I get tired a lot and dizzy and I noticed some irritibility today for the first time. I can't handle stress any more at all. So, I stay resting as much as possible these days. I' ve never been much of a drinker although I love a good mixed drink now and then. It's hard sometimes when you live with a drinker. I also had to see a psychiatrist before my dr. would start treatment. No problems there. I've noticed I'm beginning to ramble more and more. Welcome to our group. Hugs. VickieGbeatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi, . I'm VickieG, aka: onelildeltagirl. I was diagnosed after a really bad car accident in 1984. I received numerous blood transfusions during that time and a couple years later received a call after donating blood for a cause. They simply said that I have the antibodies in my system and should see a dr. I thought that when you have antibodies for something in your system that your body has fought off something and has cleared it from your system. So, I told the lady I wouldn't give blood anymore and I am fine. Well, I finally say a dr. in GA a few years ago and he explained it to me. But with no symptoms and my feeling so well, no damage to my liver after all that time, we decided that he would do blood testing every three or six months and just keep an eye on it. Then, we moved to TN. where my new dr. said that if you have it, you need to get treated. So here I am. In treatment and in this support group. I just took my 6th. Pegasys shot last Tuesday night and have had very few symptoms. I get tired a lot and dizzy and I noticed some irritibility today for the first time. I can't handle stress any more at all. So, I stay resting as much as possible these days. I' ve never been much of a drinker although I love a good mixed drink now and then. It's hard sometimes when you live with a drinker. I also had to see a psychiatrist before my dr. would start treatment. No problems there. I've noticed I'm beginning to ramble more and more. Welcome to our group. Hugs. VickieGbeatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi , It doesn't matter to any of us how you got the dragon. Welcome sweetie to he group. I am Pat aka WW [worry wart] 61 yrs. and on tx for 18 weeks now. Problems with low blood counts so am on procrit now and I hate the stuff lol. Always get copies of labs and tests done on you it helps alot. hugs and welcome...ww/patbeatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi , It doesn't matter to any of us how you got the dragon. Welcome sweetie to he group. I am Pat aka WW [worry wart] 61 yrs. and on tx for 18 weeks now. Problems with low blood counts so am on procrit now and I hate the stuff lol. Always get copies of labs and tests done on you it helps alot. hugs and welcome...ww/patbeatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi ~~ I'm new to the group in the last few days and am really feeling welcomed by the group...this seems like it will be a good place for us to hang out. I'm sure there will be several that will be able to offer support and information for you. Best wishes with your biopsy results and Drs. appointment next week. Keep in touch and let us know how it goes. Blessings, beatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi ~~ I'm new to the group in the last few days and am really feeling welcomed by the group...this seems like it will be a good place for us to hang out. I'm sure there will be several that will be able to offer support and information for you. Best wishes with your biopsy results and Drs. appointment next week. Keep in touch and let us know how it goes. Blessings, beatch38 wrote: Hi everyone, I was diagnosed with Hep C a few years ago, I did nothing about it. I'm not sure how I got it. But I remember a time when I got sick, and couldn't drink alcohol it made me deathly ill. I think I got the virus around that time of my life, thats been close to ten years ago. My viral load is high. I didn't know to ask how high or the numbers but will next time. I had a liver biopsy a week and a half ago, and have a doc. appt. next week. He (the doc) has to get permission from my psych. to treat me with intergen. Which I have , he left it up to me. I take pysch drugs. I never take tylenol. I noticed people who are on treatment say they use tylenol, Is there anything wrong with using Advil or something else. I have decided to get treated, I don't feel well, I'm always tired, and I get hot and sweaty. I sleep alot. Body aches.. I don't drink anymore but I use pain meds occasionally and am on 4 different medications. My diet is not the best. Im 42 and the way i've lived my life i doubt if i would be high on the list to get a transplant so I would like to save my liver. I wonder if there is anything i should ask my doc. tues. when I go. Im glad this group is here. thnk you Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
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