Guest guest Posted October 14, 2001 Report Share Posted October 14, 2001 Hi , I can relate. When my son was that age he was afraid of the windshield wipers in the car, rain and ceiling fans. These things terrorized him and he took his terror out on me. He would claw and try to choke me. I never got any answers other than he would grow out of it. They were right, he did, but the memories are still vivid in my mind. Doorways are a hard thing to avoid. The only solution is anything that would distract but that doesn't always work as I am sure you have probably tried. I hope you can find some compromise. Charlyne Mom to Zeb DS-? 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2001 Report Share Posted October 14, 2001 Hi , What a rough weekend you went through . I might not be of much help but my son has gone through those sensory behavior when he did not get enough sleep . Do you know if Rebekah had enough rest or ate well . Is rebekah under any medication ? I do remember when my son was 3 , we carried him alot when that would happen or put him on a stroller , since he was still able to fit in it . That is how we dealt with it . He would kick , yell , but once we went through those doorways he would calm down and always had a toy to hold on to . He still does it a little not the negative behavior, but like he has to rush under the doorway , leans down like he might hit it or maybe it seems to enclosed . Glad he SORT of outgrew that issue . This is not knowing how to deal with it because I did not know about the other diagnosis . I just knew I was not going to sit at home and we needed to go out and enjoy . Once started having those ugly behavior , my husband would just pick him up and away we go , home . knew he had his dad wrapped around his little pinky . My give in way, was leaving him in the stroller . Just thought I share my story , which is not an answer . Luck with Rebekah in finding answers for her as there are alot of, might be questions ? Sites to share : http://www.geocities.com/~kasmom/sid.html http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm http://home.ptd.net~blnelson/SIDWEBPAGE2.htm http://www.geocities.com/Heartland/Trail/5136/index.html (under behavior or CAPD ) Hope something helps , Rebekah is still very young and how I would love to start all over with all the information available in finding ways to have dealt with these challenges . Take care . Irma, 13,DS/ASD. > --- > > > Hi everyone > have just returned from a weekend away which turned > out to be the weekend from Hell!!! > Rebekah seems to have gained a fear of doorways.She > flew into a dreadful panic everytime we approached one > kicking, hitting and screaming. I feel so guilty as I > feel like i've subjected her to 2 days of terror-it > was intended to be a nice break for all of us. > Has anyone else encountered this problem? and if so do > you have any tips for over coming it? > I think that her school doesn't believe how bad things > are at home as we keep getting shining reports from > them. But to be honest we're meant to be going to > Lanzarote in 6 weeks time and I'm tempted to cancel as > I don't want to put her through 2 weeks of upset > again. > Any ideas? > mum to Rebekah 3 DS/? > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2001 Report Share Posted October 14, 2001 > > --- > > > > Hi everyone > > have just returned from a weekend away which turned > > out to be the weekend from Hell!!! > > Rebekah seems to have gained a fear of doorways.She > > flew into a dreadful panic everytime we approached one > > kicking, hitting and screaming. I feel so guilty as I > > feel like i've subjected her to 2 days of terror-it > > was intended to be a nice break for all of us. > > Has anyone else encountered this problem? and if so do > > you have any tips for over coming it? > > I think that her school doesn't believe how bad things > > are at home as we keep getting shining reports from > > them. But to be honest we're meant to be going to > > Lanzarote in 6 weeks time and I'm tempted to cancel as > > I don't want to put her through 2 weeks of upset > > again. > > Any ideas? > > mum to Rebekah 3 DS/? > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Hi We've just come back from Lanzarote on Thursday. It was a fantastic holiday, too good to be missed, so don't cancel. I don't know what your accommodation is but we had booked a villa. It was the most relaxing time we have ever had. Jamiie could walk in and out of the villa to his hearts content and we did not have to worry about him going to other people's food or slapping their legs (something he loves to do when he see bare skin). hasn't been afraid of doorways, but he has been afraid of lifts and escalors (still is sometimes). He is afraid of Cristmas trees though and there were some trees in Lanzarote that we had to avoid. Hope you enjoy your holiday ( UK) Re: HELP!! > > > --- > > > > Hi everyone > > have just returned from a weekend away which turned > > out to be the weekend from Hell!!! > > Rebekah seems to have gained a fear of doorways.She > > flew into a dreadful panic everytime we approached one > > kicking, hitting and screaming. I feel so guilty as I > > feel like i've subjected her to 2 days of terror-it > > was intended to be a nice break for all of us. > > Has anyone else encountered this problem? and if so do > > you have any tips for over coming it? > > I think that her school doesn't believe how bad things > > are at home as we keep getting shining reports from > > them. But to be honest we're meant to be going to > > Lanzarote in 6 weeks time and I'm tempted to cancel as > > I don't want to put her through 2 weeks of upset > > again. > > Any ideas? > > mum to Rebekah 3 DS/? > > > > Hi , > Sorry to hear that you had a bad time over the weekend away.I havent > been through anything like that with , but he has been so > terrified about nothing that it scares me when he reacts that > way.Dont be too hasty in cancelling your holiday as Im sure you > deserve a break. We took to Eurodisney last year, he loved all > the rides but as soon as any Disney character came near us he freaked > out. > Lelsey, 10 DS/ASD? > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 In a message dated 10/14/01 1:56:14 PM Eastern Daylight Time, jokerman1uk@... writes: > I feel so guilty as I > feel like i've subjected her to 2 days of terror-it > was intended to be a nice break for all of us. > Has anyone else encountered this problem? and if so do > you have any tips for over coming it? Hi , This is a sensory problem. Maddie's old SI therapist saw a 21 year old woman with DS who suddenly developed a fear of escalators and it was impeding on her ability to do her job. Jeanetta worked with Colleen for about 3 months and she did get better. I think you probably need to speak with an SI therapist. BTW, Colleen's mom was able to get all her sessions paid for by health insurance. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 I'm glad that you had a good trip. I'm glad that it was helpful. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 I'm reposting this from aids-schmaids ...This afternoon (January 23) I returned a phone call from an oldacquaintance and former H.E.A.L.-San Diego member who has been"HIV-positive" and drug-free for 15 years.He currently has KS and various fungal infections, and in his own words his doctors have "promised me a major opportunistic infection" if he doesn't go on the anti-HIV drugs immediately. He's very proud of having resisted the AIDS terrorism so far but he's concerned because he's genuinely ill and his T-cell counts are down to 28 (for whatever that means), and his doctors have opened up on him with both barrels to scare him into taking the meds.He is NOT online, so I am e-mailing this alert to my AIDS dissidentcontacts in hopes someone can relay me some information: eithersomething that has worked for someone else in a similar situation or the name of a doctor in the Southern California area he could see who would treat him for the illnesses he actually has and not for the great bogeyman of "HIV disease."PLEASE — if you have any information I can pass on to this man send it to me ASAP! Help me help him!Mark Gabrish ConlanH.E.A.L.-San Diego Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 1. Juice fresh organic vegetables, including 2/3 cloves of FRESH RAW GARLIC. It takes a while to get used to this pungent mixt, but it is a miracle cure. 2. Take lots of Chinese mushroom extract - Cordyceps, Ganoderma, Coriolus. A company in Europe called MRL manufucture them. 3. Pray, and get many others to pray for him. Never underestimate the power of prayer. 4. Stop fearing Death. Jack Re: HELP!! I'm reposting this from aids-schmaids ...This afternoon (January 23) I returned a phone call from an oldacquaintance and former H.E.A.L.-San Diego member who has been"HIV-positive" and drug-free for 15 years.He currently has KS and various fungal infections, and in his own words his doctors have "promised me a major opportunistic infection" if he doesn't go on the anti-HIV drugs immediately. He's very proud of having resisted the AIDS terrorism so far but he's concerned because he's genuinely ill and his T-cell counts are down to 28 (for whatever that means), and his doctors have opened up on him with both barrels to scare him into taking the meds.He is NOT online, so I am e-mailing this alert to my AIDS dissidentcontacts in hopes someone can relay me some information: eithersomething that has worked for someone else in a similar situation or the name of a doctor in the Southern California area he could see who would treat him for the illnesses he actually has and not for the great bogeyman of "HIV disease."PLEASE — if you have any information I can pass on to this man send it to me ASAP! Help me help him!Mark Gabrish ConlanH.E.A.L.-San Diego Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi Barb, I feel your pain. My son is exactly the same. I have gone around and around about what is worth battling. I really don't know. My son who is just five has about three outfits that he will wear. I don't fight. I do not allow him to wear them to bed as he'd like, this is a fight. On easter I insisted he wear good clothes to church. Normally I let him decide. Well, he spent forty minutes locked in the bathroom trying to get the clothes to feel " just right " . We deal with terrible tantrums also regarding his need for perfection. Our therapist told us to tell him that is OC flea bothering him and we cannot help until he is gone because we aren't going to let him waste our time. IT IS SO HARD! The oc flea comes from the book Blink, BLink, Clop, Clop why do we do the things we can't stop. It is about farm animals bothered by this little flea who make the animals feel like he is bigger and stronger than them. Jake amazingly at his young age was able to understand this, however, when he is in a moment, he can't stand the mention of OC flea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi Barb, I feel your pain. My son is exactly the same. I have gone around and around about what is worth battling. I really don't know. My son who is just five has about three outfits that he will wear. I don't fight. I do not allow him to wear them to bed as he'd like, this is a fight. On easter I insisted he wear good clothes to church. Normally I let him decide. Well, he spent forty minutes locked in the bathroom trying to get the clothes to feel " just right " . We deal with terrible tantrums also regarding his need for perfection. Our therapist told us to tell him that is OC flea bothering him and we cannot help until he is gone because we aren't going to let him waste our time. IT IS SO HARD! The oc flea comes from the book Blink, BLink, Clop, Clop why do we do the things we can't stop. It is about farm animals bothered by this little flea who make the animals feel like he is bigger and stronger than them. Jake amazingly at his young age was able to understand this, however, when he is in a moment, he can't stand the mention of OC flea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi Barb, I feel your pain. My son is exactly the same. I have gone around and around about what is worth battling. I really don't know. My son who is just five has about three outfits that he will wear. I don't fight. I do not allow him to wear them to bed as he'd like, this is a fight. On easter I insisted he wear good clothes to church. Normally I let him decide. Well, he spent forty minutes locked in the bathroom trying to get the clothes to feel " just right " . We deal with terrible tantrums also regarding his need for perfection. Our therapist told us to tell him that is OC flea bothering him and we cannot help until he is gone because we aren't going to let him waste our time. IT IS SO HARD! The oc flea comes from the book Blink, BLink, Clop, Clop why do we do the things we can't stop. It is about farm animals bothered by this little flea who make the animals feel like he is bigger and stronger than them. Jake amazingly at his young age was able to understand this, however, when he is in a moment, he can't stand the mention of OC flea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi Barb, What you are describing is identical to what I have gone through with my OCD son who is now almost 9. From age 3 on, getting dressed was a 2 hour ordeal of refusals to where things, to screaming matches. This was before he was diagnosed and treated for OCD and I was not certain if he was being strong willed or had a problem. Our pediatrician was no help as she just told me that he was strong willed and my parenting skills were lacking. I can assure you, this behavior goes way beyond a child being " just strong willed " . After my son was diagnosed and I agreed to have him try Prozac (which he still takes) it became clear that what he was experiencing was not a matter of him wining the " sock wars " , but a real chemical imbalance that caused clothing to feel incredibly uncomfortable. With the introduction of the SSRI, these sensations in his body lessened, and although he still only wears a certain brand of sock inside out, he can at least get them on without the trouble he experienced before and his reactions to new clothing is not as extreme as it was int he days before medication and erp. I believe you are in the process of finding a Dr. for your son......try to hang in there and know that you are doing what is best for him. Blessings, in Southeastern PA Eloi wrote: refuses to wear certain sock s due to " bumps " and just not feeling right. Yesterday we went through three pair, finally I called my DH ( who says I enable to act this way ) and gave the phone . I could hear my DH tell that the bumps in the sock create air pockets to warm his feet. ( who by the way is Five ) said Dad You are Annoying ME " , I just walked out of the room. I then talked to my husband who said he is fine he will wear the socks now . Ya right was sitting in the bathroom saying I am not wearing those socks. Well needless to say he wore a pair after much crying and saying I 'm having a bad day. So after preschool we went to Sears and bought 16.00 worst of new socks ( only 6 pairs of socks) . This am he refuses to wear them , he wants to wear the dirty pair from yesterday that he did not want to wear yesterday!!! Sorry this is long , my question is Do I make him wear sock s? Or do I give in and let him wear dirty socks. What if no sock s he will wear? Do I make him put on a pair I say? Help!! Yesterday we went through three sets of cloths because his 6 year old brother " sat on his cloths while naked " I know the six year old should not of done this but they don't need to go in the dirty cloths. No this morning we are fighting because of clothes he has none because they are dirty. He does not want to put son because they are not snapped. I told him I could snap them for him he agreed. Why doe she not just ask if I can snap them? Does he really think he can't wear them? I am lost! Barb Mom to 5 OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi and Barb, I have a 9year old with TS, OCD and ADHD.They say he has ODD too, but I believe it just seems that way when OCD and his out of whack sensory system is acting up (which is quite a bit) . He was dx. when he was 4. I had the same sock problem.(still do sometimes, but not as bad) Rubbing the bottom of his feet with a soft plastic scrub brush (the kind DR's use to scrub with) and also his arms and legs and back (several times a day if you can) really helped his brain learn or be desensitized to the nerve to brain sensations. I am torn with happiness and sadness that I keep reading the exact same problems from you guys that I have felt I was all alone for years. Some of the same thoughts that I have thought. " This is beyond " high maintenance " . is on Luvox, Clonadine, Ritalin, and risperdal. Now that he is in a special resource class with an IEP plan things are more easy going. We dont get horrible notes everyday and meetings weekly with teachers. But it still is very hard. Really not many breaks with this multiple thing. If the Tourettes is better, the OCD may be worse, or the ADHD or so on. Very rarely do we have a break when everything seems under control, but my increasing knowledge of these disorders is leading to less frustrating expectations which help. I hate giving all those meds, but I am afraid to take him off when overall he is doing OK. I hate his weight gain. At 9, he is 110 pounds with his blood pressure a little high because of the weight and (he is on Clonadine every 4 hours) which is a blood pressure med. I pray that research will create a safer and more effective meds for these disorders. With more and more people and children suffering with these, you would hope it would become more of a priority in med research. Maybe these aren't life threatening in the deadly way, but it sure can make many lives miserable when out of control. I pray for all of us in this boat. God Bless You Cheryl Joye wrote: Hi Barb, What you are describing is identical to what I have gone through with my OCD son who is now almost 9. From age 3 on, getting dressed was a 2 hour ordeal of refusals to where things, to screaming matches. This was before he was diagnosed and treated for OCD and I was not certain if he was being strong willed or had a problem. Our pediatrician was no help as she just told me that he was strong willed and my parenting skills were lacking. I can assure you, this behavior goes way beyond a child being " just strong willed " . After my son was diagnosed and I agreed to have him try Prozac (which he still takes) it became clear that what he was experiencing was not a matter of him wining the " sock wars " , but a real chemical imbalance that caused clothing to feel incredibly uncomfortable. With the introduction of the SSRI, these sensations in his body lessened, and although he still only wears a certain brand of sock inside out, he can at least get them on without the trouble he experienced before and his reactions to new clothing is not as extreme as it was int he days before medication and erp. I believe you are in the process of finding a Dr. for your son......try to hang in there and know that you are doing what is best for him. Blessings, in Southeastern PA Eloi wrote: refuses to wear certain sock s due to " bumps " and just not feeling right. Yesterday we went through three pair, finally I called my DH ( who says I enable to act this way ) and gave the phone . I could hear my DH tell that the bumps in the sock create air pockets to warm his feet. ( who by the way is Five ) said Dad You are Annoying ME " , I just walked out of the room. I then talked to my husband who said he is fine he will wear the socks now . Ya right was sitting in the bathroom saying I am not wearing those socks. Well needless to say he wore a pair after much crying and saying I 'm having a bad day. So after preschool we went to Sears and bought 16.00 worst of new socks ( only 6 pairs of socks) . This am he refuses to wear them , he wants to wear the dirty pair from yesterday that he did not want to wear yesterday!!! Sorry this is long , my question is Do I make him wear sock s? Or do I give in and let him wear dirty socks. What if no sock s he will wear? Do I make him put on a pair I say? Help!! Yesterday we went through three sets of cloths because his 6 year old brother " sat on his cloths while naked " I know the six year old should not of done this but they don't need to go in the dirty cloths. No this morning we are fighting because of clothes he has none because they are dirty. He does not want to put son because they are not snapped. I told him I could snap them for him he agreed. Why doe she not just ask if I can snap them? Does he really think he can't wear them? I am lost! Barb Mom to 5 OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi and Barb, I have a 9year old with TS, OCD and ADHD.They say he has ODD too, but I believe it just seems that way when OCD and his out of whack sensory system is acting up (which is quite a bit) . He was dx. when he was 4. I had the same sock problem.(still do sometimes, but not as bad) Rubbing the bottom of his feet with a soft plastic scrub brush (the kind DR's use to scrub with) and also his arms and legs and back (several times a day if you can) really helped his brain learn or be desensitized to the nerve to brain sensations. I am torn with happiness and sadness that I keep reading the exact same problems from you guys that I have felt I was all alone for years. Some of the same thoughts that I have thought. " This is beyond " high maintenance " . is on Luvox, Clonadine, Ritalin, and risperdal. Now that he is in a special resource class with an IEP plan things are more easy going. We dont get horrible notes everyday and meetings weekly with teachers. But it still is very hard. Really not many breaks with this multiple thing. If the Tourettes is better, the OCD may be worse, or the ADHD or so on. Very rarely do we have a break when everything seems under control, but my increasing knowledge of these disorders is leading to less frustrating expectations which help. I hate giving all those meds, but I am afraid to take him off when overall he is doing OK. I hate his weight gain. At 9, he is 110 pounds with his blood pressure a little high because of the weight and (he is on Clonadine every 4 hours) which is a blood pressure med. I pray that research will create a safer and more effective meds for these disorders. With more and more people and children suffering with these, you would hope it would become more of a priority in med research. Maybe these aren't life threatening in the deadly way, but it sure can make many lives miserable when out of control. I pray for all of us in this boat. God Bless You Cheryl Joye wrote: Hi Barb, What you are describing is identical to what I have gone through with my OCD son who is now almost 9. From age 3 on, getting dressed was a 2 hour ordeal of refusals to where things, to screaming matches. This was before he was diagnosed and treated for OCD and I was not certain if he was being strong willed or had a problem. Our pediatrician was no help as she just told me that he was strong willed and my parenting skills were lacking. I can assure you, this behavior goes way beyond a child being " just strong willed " . After my son was diagnosed and I agreed to have him try Prozac (which he still takes) it became clear that what he was experiencing was not a matter of him wining the " sock wars " , but a real chemical imbalance that caused clothing to feel incredibly uncomfortable. With the introduction of the SSRI, these sensations in his body lessened, and although he still only wears a certain brand of sock inside out, he can at least get them on without the trouble he experienced before and his reactions to new clothing is not as extreme as it was int he days before medication and erp. I believe you are in the process of finding a Dr. for your son......try to hang in there and know that you are doing what is best for him. Blessings, in Southeastern PA Eloi wrote: refuses to wear certain sock s due to " bumps " and just not feeling right. Yesterday we went through three pair, finally I called my DH ( who says I enable to act this way ) and gave the phone . I could hear my DH tell that the bumps in the sock create air pockets to warm his feet. ( who by the way is Five ) said Dad You are Annoying ME " , I just walked out of the room. I then talked to my husband who said he is fine he will wear the socks now . Ya right was sitting in the bathroom saying I am not wearing those socks. Well needless to say he wore a pair after much crying and saying I 'm having a bad day. So after preschool we went to Sears and bought 16.00 worst of new socks ( only 6 pairs of socks) . This am he refuses to wear them , he wants to wear the dirty pair from yesterday that he did not want to wear yesterday!!! Sorry this is long , my question is Do I make him wear sock s? Or do I give in and let him wear dirty socks. What if no sock s he will wear? Do I make him put on a pair I say? Help!! Yesterday we went through three sets of cloths because his 6 year old brother " sat on his cloths while naked " I know the six year old should not of done this but they don't need to go in the dirty cloths. No this morning we are fighting because of clothes he has none because they are dirty. He does not want to put son because they are not snapped. I told him I could snap them for him he agreed. Why doe she not just ask if I can snap them? Does he really think he can't wear them? I am lost! Barb Mom to 5 OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Dear Barb, Everyone on this list has been through The Clothing Thing, I think. If you search the archives you'll probably come up with a million posts on the subject!! When my daughter first got sick with OCD at 4 1/2 the SOCK thing was HUGE. We couldn't begin to figure out why suddenly socks bothered her so much. We just let her go without. Then she flipped because she was sure that she wasn't allowed to go to preschool without socks, so we talked to her teacher who, bless her heart, didn't wear socks the next day just to make Annie more comfortable. Now, five years later, she still hates socks (and shoes) and will try every single day of the year to get away with wearing slip-on sandals to school (and everywhere) but when we insist on real shoes (when it's snowing for example) she can do it without a huge crisis. Clothes are still an issue, but she just avoids any that are too difficult and the preteen peer pressure makes her want to wear most " normal " things. My theory on this is that almost all four - six year olds go through difficult stages with clothes, and OCD makes the normal " pickiness " overwhelming. It is a sensory thing - so many of our OCD kids have problems with integrating their various sensations. So, you have two choices. You can fight this as an OCD thing - and try to gradually desensitize him through exposure to the dreaded socks - or you can not fight this particular battle and concentrate on others, letting him wear what he wants. Different people solve it different ways. If it is controlling your life (and it seems to be) I'd work on exposure - treat it like any other OCD symptom. If it isn't such a huge thing, don't worry about it. Clothing issues generally subside somewhat with time anyway. That's just my opinion, obviously. Sending you a ton of sympathy in sock-solidarity, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 You would just eat every 2-3 hours during the time when you're awake. It doesn't matter if lunch is at 3am. Or if you eat dinner right before you pass out at 7am. If you're awake, you're eating. Get an insulated cooler and some of those blue ice thingies and take your meals to work with you. Things like cottage cheese, fruit, canned tuna, yogurt, hard boiled eggs, half sandwiches, protein shakes, and bars travel really well. You can also make up a bunch of little meals like chicken and rice, divide them into those cheap Gladware containers. Then you'll have whole meals ready to stick in the microwave. Also, check out the recipes for protein pudding and Raylene's jello (try this link http://www.taskoski.com/raylene/recipes/Desserts/desserts.html). Smushy sweet chilled stuff like that is good when it's time for a meal at 4am. If I were to attempt to microwave fish at that hour, I would definitely hurl. I would try to exercise when you first wake up (whether it's morning or night) rather than right before you sleep. Exercise right before bed can make insomnia worse. Also, if you start with the intense exercise, your sleep becomes even more important. Things like putting poster board on your windows to make the room dark, keeping the room cool, turning the ringer off on the phone, maybe having a fan or other white noise so you're not hearing stuff outside every hour or two. When I'm working odd shifts I'm BAD about staying asleep. I'll get like 4 hours here and another hour or two there. After a year of that, I end up sick and exhausted. It's better if you can make yourself do 6-8 hours in a row no matter what oddball time it is. Hope that gives you some ideas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 > You can also make up a bunch of little meals like chicken and rice, divide them > into those cheap Gladware containers. Then you'll have whole meals > When I'm working odd shifts I'm BAD about staying asleep. I'll get like 4 hours > here and another hour or two there. After a year of that, I end up sick and > exhausted. It's better if you can make yourself do 6-8 hours in a row no matter > what oddball time it is. > > Hope that gives you some ideas. > > ..thanks for the advice. I will follow your notes about the food and the recipes. I was just concerned about the goofy hours. I generally work out in the mornings, accept for the 7 days that I am scheduled on day shift. As far as sleeping is concerned, I have no problem with it. Even when I work the night shift, I get 7 hours sleep during the day, by doing exactly what you texted. No phones (I have an emergency in my room, just in case), room darkening shades and I live in a rural area, so noise is not a problem. Anyway, I thank you for the tidbits of info...I will get hoping on BFL asap. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 adabfree wrote: > Hello Everyone...I'm new here. I've been investigating and reading > on the BFL challenge and I must admit it sounds so very interesting > and wonderful. I've seen some terrific before and after pictures and > it's very inspiring. But I have a few questions. So, if anyone can > help or answer them for me I would be very grateful. Welcome to the group And to BFL!!! Everyone else already answered your questions so I'll just say welcome Serenity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Les and Macey both have granulomas in their chest that are consistent with a possible past fungal infection which could be an inactive TB infection or histoplasmosis. Les has more than Macey and his doctor has mentioned repeating his TB skin test for good measure but that she's sure he's not active. Macey's hasn't grown in the past 2 yrs of chest CT's and Les just had his first one this year so we'll see next year. But seeing as Les has more than Macey it obviously took time for them to build up so progressive disease is possible. The doctors are aggressive with chest infections in both Les and Macey but there is not treatment for the granulomas which usually are calcified and just remnants of old illness. Macey has had one nasal polyp and it is true that polyps at a young age are normally only seen in CF patients. But sinusitis is a part of the CF disease and if you think about how much sinusitis PID kids deal with then it's only similarity not necessarily a relation. The polyps can be removed from that area but have a tendency to come back. Nasal steroids have helped Macey keep them away. She's been off them for 9 months now so I'm waiting to see if anything develops. Our experience in a nutshell. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Don;t know what to tell you...but please know that you and your sister are in my thoughts and prayers. Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Lynne, We've only had 8 infusions, also, but the longest we've seen serious side effects was 4 days. We've seen milder side effects (headaches) for 8 days. HTH Pam wife to (15 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 help!! So what do yall think? that this could be a virus, or is this IVIG related, the headaches and nausea with it? Thank you, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Kody had this about 2 weeks ago. It was just another virus but it was a particularly nasty one. With him, the vomiting only lasted about 48 hours, but then he ran a low fever (unusual for him to run any fever) for the two weeks since. No other symptoms, just low fever, hovering at 100. Diane, Mom to Kody Please feel free to visit my website for parents of children with multiple special needs : www.geocities.com/schmidtzoo/SNAK.index.html -- help!! Dear Group: Last night Sis came up with a bad headache, then she was nauseous. I gave her benedryl and motrin, 325mg. Then this morning, the same thing, then she started throwing up, projectile. She has reflux too, but she has never projectiled like that. I called the Dr. she said she thinks it's too far out from the IVIG done on the 9th to still be having side effects. The one on the 9th was our 8th infusion. All day long she has felt awful. I gave her a phenegren suppository at 12:45 pm, it didn't knock her out. She got sick again around 3. The dr. said to start her on a teaspoon of liquid every thirty min, for two hours, if she couldn't hold it, to go to the ER. I haven't checked my mail in a few days, it was nice to see that maybe we wouldn't have to sit there, that was my fear if we have to go. I gave her another phenegren 30 min ago, she finally went to sleep, it's 9:23 pm. So what do yall think? that this could be a virus, or is this IVIG related, the headaches and nausea with it? Thank you, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Actuallly, Sandi, I attempted to cut off my finger on Christmas day. So I had to get one as well. Yes, it is common to get a very red sore place when you get a tetanus. It will take several days for it to subside. You also may have a fever. You can put ice on it but try to use it so it does not get too stiff. I am so sorry. If it is not improving in 3-4 days then you will need to check on it. It can take over a week for the soreness to go away. But it should gradually get better. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Barbie, Thank you for the info. The Doc thinks it will take a little extra time because of my immune system. He did say to massage the area, but that sounds way to painful. I can barely stand to touch it at all. By the way, maybe the two of us could go knife free next Christmas!! That is when I actually cut my finger, I just didn't get the stitches until New Year's Day. Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 I did not get the stitches either but because I am diabetic they would not stitch it. I was also told that after 6-8 hours they do not stitch . Lucas is on a med Respiradol for his very agressive behavior. He was on Depakote and then Oxycarbazepine and in both cases he had very severe side effects. We are seeing great improvements in his behaviours and hate to lose our med but, we have been having Tachycardia for the last couple of days with and irregular heart beat. It can be a side effect. I have spent the last couple of hours trying to track down a doctor to decide what to do . I do not want to head into the ER if I can avoid it and finally got one of the peds to talk me through and we are going to do an EKG tomorrow to make sure he is OK. Just something else to worry about I guess. Everyone wanted me to take him to the ER tonight but he is feeling fine. My immunologist gave me a pulse ox to bring home to just keep track tonight. So we will check in tomorrow. BARBIE Quote Link to comment Share on other sites More sharing options...
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