Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Under the circumstances....CALL, tell them you want her seen. they might say go to ER , ----so go , but make sure she doesn't sit near folks ..If she is already weakened, she will be able to pick-up something else easier too. Bless your heart & hers. I hope this weekend proves she is doing better. LOVE & HUGS, grandmomBEV Is this normal? Hello, all. I posted my first message last week. I have a little girl, her name is Sommer Rose, shes gonna be 11 on the 20th of this month. Anyway, I had mentioned in my first post that she was diagnosed at age two with cf, and she was in the hospital,her first time with pneumonitis the week of the 29th of june. My question is, is it normal for her to be so exhausted all the time since shes been ill? i left her with my mom today while I worked and my mom said she slept all day, litterally. when i picked her up at six she was asleep. she just looks so wasted and she has no energy. im just wondering if i should be worried,, im still waiting for uc davis to call and tell me when her appt. is,, that is what they said theyd do, im not supposed to call and make it, they are supposed to call me. if anyone has any advice, id be so greatful thanku! ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 please do not wait any longer to see a dr for this it could very well be that her O2sats are dropping and she is lethargic not that she is really sleepy. Take her to the Emergency room ASAP and have them run tests and X-rays Maureen Is this normal? > Hello, all. I posted my first message last week. I have a little > girl, her name is Sommer Rose, shes gonna be 11 on the 20th of this > month. Anyway, I had mentioned in my first post that she was > diagnosed at age two with cf, and she was in the hospital,her first > time with pneumonitis the week of the 29th of june. My question is, > is it normal for her to be so exhausted all the time since shes been > ill? i left her with my mom today while I worked and my mom said she > slept all day, litterally. when i picked her up at six she was > asleep. she just looks so wasted and she has no energy. im just > wondering if i should be worried,, im still waiting for uc davis to > call and tell me when her appt. is,, that is what they said theyd do, > im not supposed to call and make it, they are supposed to call me. if > anyone has any advice, id be so greatful thanku! > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Dear Sommer's Mom (which by the way is a beautiful name) As I write this its 12:23 and my 14 year old is still sleeping. She tires very easily and I think it is completely normal. Her body does this so she stays a little healthier. I don't worry unless it interferes with her enjoy and living her life, then I panic. But so far, it's not so bad. I think that when they sleep, they need it - its their body's way of letting them know - hey slow down! Just my opnion though. Never hurts to call the doc just to confirm. And be sure she's getting those vitamins, they do make a difference. G. mom of samantha 14 w/cf bobby 7, matty 10 no cf Is this normal? > Hello, all. I posted my first message last week. I have a little > girl, her name is Sommer Rose, shes gonna be 11 on the 20th of this > month. Anyway, I had mentioned in my first post that she was > diagnosed at age two with cf, and she was in the hospital,her first > time with pneumonitis the week of the 29th of june. My question is, > is it normal for her to be so exhausted all the time since shes been > ill? i left her with my mom today while I worked and my mom said she > slept all day, litterally. when i picked her up at six she was > asleep. she just looks so wasted and she has no energy. im just > wondering if i should be worried,, im still waiting for uc davis to > call and tell me when her appt. is,, that is what they said theyd do, > im not supposed to call and make it, they are supposed to call me. if > anyone has any advice, id be so greatful thanku! > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 In a message dated 7/12/2003 6:56:35 AM Central Daylight Time, nrthrncalmama@... writes: > > Hello, all. I posted my first message last week. I have a little > girl, her name is Sommer Rose, shes gonna be 11 on the 20th of this > month. Anyway, I had mentioned in my first post that she was > diagnosed at age two with cf, and she was in the hospital,her first > time with pneumonitis the week of the 29th of june. My question is, > is it normal for her to be so exhausted all the time since shes been > ill? i left her with my mom today while I worked and my mom said she > slept all day, litterally. when i picked her up at six she was > asleep. she just looks so wasted and she has no energy. im just > wondering if i should be worried,, im still waiting for uc davis to > call and tell me when her appt. is,, that is what they said theyd do, > im not supposed to call and make it, they are supposed to call me. if > anyone has any advice, id be so greatful thanku! Hey I have a daughter also that will be 11 on the 21 of this month and she also has CF. My daughter has not had pneumonia but I know it takes a lot out of a person. I was told by a friend who's daughter was in a basement when a tornado pulled there house off of there foundation that when you body has gone through a stressful situation that is how you body deals with stress and healing is by sleeping. Her daughter would sleep anytime she would sit down for about a couple of month and she took her to the doctor and that is what he told her. I am know doctor but if she is not coughing or have any other symptoms I would just give her some time to heal. Sleep is the best thing. Hope this helps. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi, Cindy. Welcome to the list. Sorry to hear that your son's nocturnal screaming has returned. It does happen, and hopefully it will subside soon. I know some use supplementations for it--taurine, melatonin, etc. Maybe they can echo their experiences. We use homemade epsom salt oil with a little lavender oil mixed in. We massage it on his back first (where he will tolerate the touching best), and then on his stomach and temples. It cuts the crying time down to about 15-20 minutes. Fortunately, as time went on with the diet, we have very few night terrors, seizures, or screaming episodes. Most of Dakota's night time crying seemed to be gastric problems, and once the gas pains subsided, then he was ok. Hopefully, this will suside in time for all of you as well. SCD 2 years Mom to Dakota (8--NF, CDD, Seizures) and (6--happy, healthy, supportive little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 > Can anyone tell me if night time wakings with terrible > screaming/crying is normal? My son has been having this for the past > two nights since starting the diet. We used to have a lot of this in > the past, but his sleeping had just started improving the past couple > of weeks. He is non-verbal and cannot tell me how he is feeling, but > after about one hour of screaming, he seems fine again. > Thanks, > Cindy (mom of Kasam ASD) > > Dear Cindy, Elaine describes these night wakings and seizures in her book. They sound similar to what her daughter Judy suffered. The symptoms disappeared shortly after Judy started SCD and never returned. Most adults who needed SCD describe cramping and gas to the extent where they just wanted to curl up and be left alone so it is no wonder non verbal children are so frustrated and uncomfortable they either retreat or have tantrums. Carol F. Celiac, MCS, Latex Allergy, EMS SCD 6 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi Thank you for your support. Hopefully they decrease soon because after he is done screaming he stays up the rest of the night and sleeps all morning. It is back to school and work tomorrow. Can you tell me how you made your homemade epsom salt oil? Thanks Cindy (mom to Kasam 4 1/2 ASD) - In pecanbread , " and C. TwoBears " wrote: > > Hi, Cindy. > > Welcome to the list. > > Sorry to hear that your son's nocturnal screaming has returned. > > It does happen, and hopefully it will subside soon. > > I know some use supplementations for it--taurine, melatonin, etc. Maybe they can echo their experiences. > > We use homemade epsom salt oil with a little lavender oil mixed in. We massage it on his back first (where he will tolerate the touching best), and then on his stomach and temples. It cuts the crying time down to about 15-20 minutes. Fortunately, as time went on with the diet, we have very few night terrors, seizures, or screaming episodes. Most of Dakota's night time crying seemed to be gastric problems, and once the gas pains subsided, then he was ok. Hopefully, this will suside in time for all of you as well. > > > SCD 2 years > Mom to Dakota (8--NF, CDD, Seizures) and (6--happy, healthy, supportive little brother) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 Hi, Cindy. Sorry that I was not online until now to answer your question. I hope that both of you had an easy night last night. I am a huge fan of epsom salts. Evening epsom salts baths really helped, as well, with night screaming. Then adding the oils/sprays for melt downs/screaming worked well for us when we just could not do the baths. www.enzymestuff.com/epsomsalts.htm has great information on espom salts and how to make the lotions/creams/sprays/sponges. For the oils, I heat up three tablespoons water plus four tablespoons salts plus 12 tablespoons coconut oil. I add several drops of lavender oil to assist with relaxing/calming. Sponging one part salts to four parts water works well--especially if you do any sensory integration/Wilbarger brushing--our OT uses the sponge and epsom salts instead prior to therapy with great success. We have tried to poulstice patches at night (salts mixed with water under a bandage), but Dakota pulled them off more than he didn't--but it worked well with our younger son when he had die-off. We keep a bottle of one part salts with two parts water in the fridge during the summer. For kids who have a hard time eating and regulating body temp during hot weather, this works great. Also during the summer, we mix it our salts with sunscreen with good success Good luck, and I hope all of you get some sleep! SCD 2 years Mom to Dakota (8--NF, CDD, Seizures) and (6--Happy, healthy little brother) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 Hi Thank you for your reply and all of your suggestions. We actually were able to get about seven hours of sleep last night, yea I tried putting some salt in water and then mixed it with some lavender gel I found from and . I will try some other of your suggestions as well. Kasam also gets adjusted weekly by a chiropractor, and this always helps him sleep well. Today was the day for an adjustment, so here's hoping for more sleep. Cindy (mom of Kasam 4 1/2 ASD) > > Hi, Cindy. > > Sorry that I was not online until now to answer your question. I hope that both of you had an easy night last night. > > I am a huge fan of epsom salts. Evening epsom salts baths really helped, as well, with night screaming. Then adding the oils/sprays for melt downs/screaming worked well for us when we just could not do the baths. www.enzymestuff.com/epsomsalts.htm has great information on espom salts and how to make the lotions/creams/sprays/sponges. > > For the oils, I heat up three tablespoons water plus four tablespoons salts plus 12 tablespoons coconut oil. I add several drops of lavender oil to assist with relaxing/calming. > Sponging one part salts to four parts water works well--especially if you do any sensory integration/Wilbarger brushing--our OT uses the sponge and epsom salts instead prior to therapy with great success. > > We have tried to poulstice patches at night (salts mixed with water under a bandage), but Dakota pulled them off more than he didn't--but it worked well with our younger son when he had die- off. > > We keep a bottle of one part salts with two parts water in the fridge during the summer. For kids who have a hard time eating and regulating body temp during hot weather, this works great. Also during the summer, we mix it our salts with sunscreen with good success > > Good luck, and I hope all of you get some sleep! > > > > > > SCD 2 years > > Mom to Dakota (8--NF, CDD, Seizures) and (6--Happy, healthy little brother) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Praises for sleep!! I am glad that you had a better night, and I hope that Kasam's adjustment helped even more with sleep. Aren't chiroprators wonderful?! It does wonders for Dakota, as well. I hope things continue to go well. SCD 2 years Mom to Dakota (8--NF, CDD, Seizures) and (6--happy and healthy) Quote Link to comment Share on other sites More sharing options...
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