Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Hello Ilana, Thank you for checking with your cousin and aunt. I am so sorry that your sons are sick. My son had mouth sores in between fevers. This is a confusing thing to deal with because there don't seem to be any absolutes in symptoms and diagnosis. I wish you and your family well and hope they feel better soon! Tracie, Mom of 6 Hi from Israel First of all, thanks again. I told you last week about my cousin, she is now 25, she had mouth sores for years, fevers, but that was 20 years ago, and my aunt hardly rembers. As for my son Gal, he had fever last month 05.13.04. He had the white spots in his tonsils. Yesterday 02.06 he had fever 104 and he has the stains again. Today we went to the ENT and he explained that strep stains are usually cream color and not white as in PFAFA. Still he was sent to a throat cultive (I don't know how to say it in English) The doc said he knows about 20 kids with PFAFA and that he is almost sure my son has it. I'm not sure now, my other son Raz had a virus 2 days ago. 24 hours fever 103. So I tought Gal just catched it from him. Maybe PFAFA kids any time they have high fever the have sores? This is very confusing for me. Blessings from Israel. Ilana - mom of Gal (boy) almost 5. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Hello Ilana, Thank you for checking with your cousin and aunt. I am so sorry that your sons are sick. My son had mouth sores in between fevers. This is a confusing thing to deal with because there don't seem to be any absolutes in symptoms and diagnosis. I wish you and your family well and hope they feel better soon! Tracie, Mom of 6 Hi from Israel First of all, thanks again. I told you last week about my cousin, she is now 25, she had mouth sores for years, fevers, but that was 20 years ago, and my aunt hardly rembers. As for my son Gal, he had fever last month 05.13.04. He had the white spots in his tonsils. Yesterday 02.06 he had fever 104 and he has the stains again. Today we went to the ENT and he explained that strep stains are usually cream color and not white as in PFAFA. Still he was sent to a throat cultive (I don't know how to say it in English) The doc said he knows about 20 kids with PFAFA and that he is almost sure my son has it. I'm not sure now, my other son Raz had a virus 2 days ago. 24 hours fever 103. So I tought Gal just catched it from him. Maybe PFAFA kids any time they have high fever the have sores? This is very confusing for me. Blessings from Israel. Ilana - mom of Gal (boy) almost 5. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Just wondering do you have paracetamol in Israel? Paracetamol is also known as acetaminophen. Same as Tylenol. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Just wondering do you have paracetamol in Israel? Paracetamol is also known as acetaminophen. Same as Tylenol. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Thanks Fran so much. I'm so worried now, Gal has fever since last Wednesday 104. I had some Tylenol I bought in the States last year. No Tylenol or Motrin available here, but maybe something else with Acetaminophen. Gal has lost so much weight since the fevers started. Still the doc said no steroids. The ENT doc, said he knows about 20 kids with PFAFA, maybe we should try a third opinion. The ped, keept telling me it was Strep. Thanks again so much. Ilana mom of Gal 5 yrs. Fran Bulone <fbulone@...> wrote: Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Thanks Fran so much. I'm so worried now, Gal has fever since last Wednesday 104. I had some Tylenol I bought in the States last year. No Tylenol or Motrin available here, but maybe something else with Acetaminophen. Gal has lost so much weight since the fevers started. Still the doc said no steroids. The ENT doc, said he knows about 20 kids with PFAFA, maybe we should try a third opinion. The ped, keept telling me it was Strep. Thanks again so much. Ilana mom of Gal 5 yrs. Fran Bulone <fbulone@...> wrote: Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Kusit & others, Kusit -- First, is it legal for us to send you Tylenol? Does it have to be carried into Israel? We feel comfortable in declaring , now 6 and who has had fevers since he was 18 months old, healthy and fever free. My wife, Tracie, may not have told you everything Nick has gone through. We were told by a GI doc that he had Cystic Fibrosis and that he would surprised if the pulmonary doc did not confirm that diagnosis. Before the pulmonary doc visit an x-ray revealed a possible mass between his lungs, cancer? Well on the same day we found out about both CF and the mass, he did not have either. If you count the residents and doctors on rotation the doc count is 32 not 20. We've seen some of the best doctors in the world; Dr Kastner at NIH, Dr Senders at UC , Dr Emery UCSF now in Seattle to name a few. We have also experience one very bad doc, our old family doc who would not refer Nick out to save his life. Dr P thought he knew everything and if he could not diagnose Nick no one could.... RUN as fast as you can from this type of doc. The best doc's quickly admit they do not know everything and that they can learn from others. The doctors( Kastner, Senders and Emery) I mentioned all admitted that they did not know it all. This told me they were willing to look outside what they normally see. Some things that I strongly feel helped us get better care and made better use of the doctor visits: Keep records of everything medical about your child. As Tracie said we have a full 3 inch notebook with Nick's medical records. Food and things they come in contact with ???? Get a complete copy of your child's records to a new doc a week before your appointment with a note asking the doc to read through it before your appointment ( a good doc will). This work out very nicely and we had more productive doctor visits. They will read it... We hand carried Nick's Cat scan to Dr Kastner just in case he wanted to see it. See a specialist for all symptoms... the ID doc thought he might have Uvitus (eye pain during fevers) and sent us to an Ophthalmologist... no Uvitus. Keep an Excel spreadsheet on your child's temperature every day and the meds given. Then graph the day and temperature, the pattern will jump out at you and your doc. We had kept the day and temp but I did not graph it until I emailed it to Dr Kastner. When I did the graph I saw that the peak temperature during the episodes would build, for example the first cycle would peak at 101.5F, then no fever to 3 week then another fever would come on and it would peak at 102.4. No fever for 3 weeks. The next cycle would peak at 103.5, this would continue until the peak temp was 104 to 105F. Then the next cycle would peak at 101.5 (for example) and this cycle would repeat until he hit 104 to 105. Search the internet and research your doc. Know what she/he's good at.... I email with a mother in , Calif who's son also had a T & A done and he is now fever free. He had serious pulmonary and GI issues. The bottom of his feet also pealed at the end of each episode. After his T & A all this went away and he gained 10 pounds in 2 months ( he's about 5 y.o.). We know that a T & A may not be for every child but who knows.... Much of what I mentioned may not be new but if we help one family it's worth it. Our thoughts and prayers will continue to be with you all, Tim, dad of 6 Re: Hi from Israel Thanks Fran so much. I'm so worried now, Gal has fever since last Wednesday 104. I had some Tylenol I bought in the States last year. No Tylenol or Motrin available here, but maybe something else with Acetaminophen. Gal has lost so much weight since the fevers started. Still the doc said no steroids. The ENT doc, said he knows about 20 kids with PFAFA, maybe we should try a third opinion. The ped, keept telling me it was Strep. Thanks again so much. Ilana mom of Gal 5 yrs. Fran Bulone <fbulone@...> wrote: Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Kusit & others, Kusit -- First, is it legal for us to send you Tylenol? Does it have to be carried into Israel? We feel comfortable in declaring , now 6 and who has had fevers since he was 18 months old, healthy and fever free. My wife, Tracie, may not have told you everything Nick has gone through. We were told by a GI doc that he had Cystic Fibrosis and that he would surprised if the pulmonary doc did not confirm that diagnosis. Before the pulmonary doc visit an x-ray revealed a possible mass between his lungs, cancer? Well on the same day we found out about both CF and the mass, he did not have either. If you count the residents and doctors on rotation the doc count is 32 not 20. We've seen some of the best doctors in the world; Dr Kastner at NIH, Dr Senders at UC , Dr Emery UCSF now in Seattle to name a few. We have also experience one very bad doc, our old family doc who would not refer Nick out to save his life. Dr P thought he knew everything and if he could not diagnose Nick no one could.... RUN as fast as you can from this type of doc. The best doc's quickly admit they do not know everything and that they can learn from others. The doctors( Kastner, Senders and Emery) I mentioned all admitted that they did not know it all. This told me they were willing to look outside what they normally see. Some things that I strongly feel helped us get better care and made better use of the doctor visits: Keep records of everything medical about your child. As Tracie said we have a full 3 inch notebook with Nick's medical records. Food and things they come in contact with ???? Get a complete copy of your child's records to a new doc a week before your appointment with a note asking the doc to read through it before your appointment ( a good doc will). This work out very nicely and we had more productive doctor visits. They will read it... We hand carried Nick's Cat scan to Dr Kastner just in case he wanted to see it. See a specialist for all symptoms... the ID doc thought he might have Uvitus (eye pain during fevers) and sent us to an Ophthalmologist... no Uvitus. Keep an Excel spreadsheet on your child's temperature every day and the meds given. Then graph the day and temperature, the pattern will jump out at you and your doc. We had kept the day and temp but I did not graph it until I emailed it to Dr Kastner. When I did the graph I saw that the peak temperature during the episodes would build, for example the first cycle would peak at 101.5F, then no fever to 3 week then another fever would come on and it would peak at 102.4. No fever for 3 weeks. The next cycle would peak at 103.5, this would continue until the peak temp was 104 to 105F. Then the next cycle would peak at 101.5 (for example) and this cycle would repeat until he hit 104 to 105. Search the internet and research your doc. Know what she/he's good at.... I email with a mother in , Calif who's son also had a T & A done and he is now fever free. He had serious pulmonary and GI issues. The bottom of his feet also pealed at the end of each episode. After his T & A all this went away and he gained 10 pounds in 2 months ( he's about 5 y.o.). We know that a T & A may not be for every child but who knows.... Much of what I mentioned may not be new but if we help one family it's worth it. Our thoughts and prayers will continue to be with you all, Tim, dad of 6 Re: Hi from Israel Thanks Fran so much. I'm so worried now, Gal has fever since last Wednesday 104. I had some Tylenol I bought in the States last year. No Tylenol or Motrin available here, but maybe something else with Acetaminophen. Gal has lost so much weight since the fevers started. Still the doc said no steroids. The ENT doc, said he knows about 20 kids with PFAFA, maybe we should try a third opinion. The ped, keept telling me it was Strep. Thanks again so much. Ilana mom of Gal 5 yrs. Fran Bulone <fbulone@...> wrote: Not sure where you read this but the most common treatment for kids who have and high temps is ALTERNATING Motrin and Tylenol every 3 hours (dose depends on weight) around the clock. THis is because the fevers go high and are difficult to manage. Fran Fran A Bulone Mom to ph 4yrs old Waxhaw, NC Owner & Moderator Group I just have one more question, I use Advil to reduce Gal's fever. I read most of the parents use Tylenol, any reason? Thanks again from Israel !!! Quote Link to comment Share on other sites More sharing options...
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