Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Gillian, maybe you could get your doctor to contact Dr. Kastner at NIH because as far as I know, if Colchicine works for your son, that's supposed to be the equivalent of a pretty firm diagnosis for FMF. Unfortunately, The testing isn't 100 percent reliable either. My son has yet to test positive for FMF or any of the other genetic dosorders but NIH considers that his symptoms and his response to Colcicine are a diagnosis in them selves. Pat, mom to PJ, 14 year old, FMF --------------------------------- Park yourself in front of a world of choices in alternative vehicles. Visit the Auto Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 " Thank you Pat! You are a wealth of information! " LOL! Yeah, experience does that to you! Research, research and more research! --------------------------------- Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 We just took our son to a pediatric neurologist and he assured us that Ian's temps in the 105's and 106's do not hurt his brain unless we can't get them down. It seems hard to believe, but all the docs seem to agree. carol Re: Colchicine Question to anyone who knows. I know they say the high temps will not hurt small children and there bodies are made to handle it even kids without . at what age are they not considered able to handle a high temp. when I took alfonso to the ER once with a 103 temp they told me anything that high they take very seriously. and that was low for one of his temps .. are these 105 and 106 temps frying him at this older age just a thought maybe someone has input take care chicks ************ ********* ********* ******** See what's free at http://www.aol. com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 To my knowledge it only comes in pill form. I've gotten grief for this (mostly from my inlaws:) but we put it in 1/2 a spoonful of chocolate syrup and he takes it fine. To me if that's all I have to do to take a pill two times a day it's worth it. There is a way to mix it in water, but I haven't had to do that. Taryn Mom to Evan 4 y.o. Clinical FMF Re: Colchicine My son was tested for TRAPS and it was negative. The doctor took weekly blood draws for a month to test for cyclic neutropenia, and that came back negative as well. So our doctor figures that Kai has periodic fever syndrome, but he found that Colchicine seems to work really well with it. It is reassuring to hear that the side effects aren't too bad. How do you give the medicine to your son -- is it in pill form? Does he take it pretty well or is it a fight? Thanks! Gillian --- molson77@... wrote: > My son, Evan/4 y.o., is on colchicine. His doctors > believe he has Familial > Mediterranean Fever although his genetic testing was > negative. We were > apprehensive about colchicine at first. After > researching and discussing in > detail with our ped. rheum. we found there to be > minimal side effects (diarrhea > until correct dosage is found) and no long term > effects on the body. He is on > .3 mg in the am and .6mg in the pm. Evan is now > going on 14 weeks without a > flare (he was getting one every 3 weeks like > clockwork) and we have a clinical > diagnosis of FMF since the colchicine seems to be > helping. Hope this helps. > Let us know what you decide. > > Taryn > Mom to Evan, 4 y.o., FMF > > > > ************************************** See what's > free at http://www.aol.com. > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games. http://sims./ ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 What do you give your daughter to drink when she is fevering?? I give my son gatorade often, so he doesn't dehydrate. If I give him any gatorades that are colored green, blue, or purple, we get the bright green BM. Just a thought!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 When she fevers the only drink she seems to want is water...which she drinks a lot of....maybe that has something to do with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 When she fevers the only drink she seems to want is water...which she drinks a lot of....maybe that has something to do with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 is on her third month of Colchicine. For the first month or so, it upset her stomach a lot. Now, there are no side effects but the Colchicine is not helping the fevers. is still fevering every 2- 3 weeks. Before Colchicine, she was on Cimetidine and that didn't help either -except for one 6 week break. We visit Texas Children's in Houston again next month for a re-evaluation. Good luck with the Colchicine. I hope it helps for your child :-) Misty Mom to Zachary 8.5 years and 5 years () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 is on her third month of Colchicine. For the first month or so, it upset her stomach a lot. Now, there are no side effects but the Colchicine is not helping the fevers. is still fevering every 2- 3 weeks. Before Colchicine, she was on Cimetidine and that didn't help either -except for one 6 week break. We visit Texas Children's in Houston again next month for a re-evaluation. Good luck with the Colchicine. I hope it helps for your child :-) Misty Mom to Zachary 8.5 years and 5 years () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 FRAN thank-you for getting back to me i was wondering why do you think the mayo clinic just told me that more than likely he has is it only because he did test negative for fmf . i do know that he does not follow all of the symptoms of phapa and we are also struggling with exspressive and receptive lanuage delay and he will be 3 at the end of feb. i took him off of colchrine 5 days ago and today he did get a fever so still know he still has the fevers and that the colchrine works please give me your imput emily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Re: the language delay. My son has an expressive delay, but they still consider him to have . Although growth and development being normal is an important aspect of , I do believe you can have the speech delay and still have . Speech delays impact up to 10-12% of young children, so it is quite possible that our children are just part of that statistic - with the cyclical fever piece, whether it be , FMF etc, being a separate variable in all of this. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Re: the language delay. My son has an expressive delay, but they still consider him to have . Although growth and development being normal is an important aspect of , I do believe you can have the speech delay and still have . Speech delays impact up to 10-12% of young children, so it is quite possible that our children are just part of that statistic - with the cyclical fever piece, whether it be , FMF etc, being a separate variable in all of this. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Re: the language delay. My son has an expressive delay, but they still consider him to have . Although growth and development being normal is an important aspect of , I do believe you can have the speech delay and still have . Speech delays impact up to 10-12% of young children, so it is quite possible that our children are just part of that statistic - with the cyclical fever piece, whether it be , FMF etc, being a separate variable in all of this. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I am not fran, but would like to answer a quick question. I was told that Pfapa is diagnossed when they have the periodic fevers and mouth/throat sores. We did all genetic testing and was negative for all, so since he was negative and he has mouth/throat sores, they call it . Have they discussed tonsillectomy with you???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Hello, my son has been on colchicine since the end of November. He did get a fever in December and in January on schedule. However, the fever only lasted about 2 days and only got as high as 101 for one day. Normal fever would range 5 to 8 days, and go to 104-105 about every 21 days. We are now 70 days fever free. My son does still get some symptoms in which we think a fever is coming on, but nothing ever develops. So far the colchicine has been working great!!! We get labs done every 3 months, and everything came back good. Just out of curiosity how old is your child and what dose of colchicine is he on? My son is 3years old and is on .3mg everyday. Good Luck, and keep us posted on your childs progress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Debbie, Our son started on colchicine back in May of last year. His doctors warned us that it may take until June or July before we saw effects. However, we only saw two very mild cases in July and August, I believe. That said, he has occasionally had achy joints around the times he probably *should* have had his fevers. All told, and we learned the hard way, DO NOT miss a dose. He had one of his worst fever bouts this January due to a missed dose by only 12 hours. Good luck! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hello. My daughter started colchicine in Jan. The doc perscribed .3 twice daily for out 2 and half yr old. I thought this was too much so give it to her once a day. After a couple weeks her hair started to grow (like crazy! She has not had much and actually lost a lot over the past 18 months.) And she has gone on a growth spurt! She did have a high fever episode but it came at 6 weeks rather than 4 weeks. I am not sure if it is the med or coincidence! I am still going to give it to her and see what happens next month. Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi , Our son is almost 27 months old, and is on 0.6 mg once a day. His labwork always comes out well, and he doesn't have loose stools, which can be a side effect. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi , Our son is almost 27 months old, and is on 0.6 mg once a day. His labwork always comes out well, and he doesn't have loose stools, which can be a side effect. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi --My son is 3.5 years old. He is on .6 mg of colchicine every day. He's been taking it for about 3 weeks. He usually gets fevers every 18-24 days--and this one was in 31days! and it was much milder--only ranged betweed 100 - 103! He also had less stomach pains. We haven't been instructed to get any labs yet--what are the labs for? I'd like to ask his Dr. about getting checked if needed. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi --My son is 3.5 years old. He is on .6 mg of colchicine every day. He's been taking it for about 3 weeks. He usually gets fevers every 18-24 days--and this one was in 31days! and it was much milder--only ranged betweed 100 - 103! He also had less stomach pains. We haven't been instructed to get any labs yet--what are the labs for? I'd like to ask his Dr. about getting checked if needed. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Melody has been fevering since 3 months. She started on colchicine around 1 1/2 yrs. and we felt it was no help. Last March after a horrible episode we were desperate and decided to try again, and was perscribed 2 1/2 tabs. Only she wasn't yet 2 and couldn't swallow the pills. The doctor suggested finding a " mom and pop " pharmacy that could make it into a liquid. This was a wast of time. She continued to fever on regular schedule. I was frustrated because the liquid could only be made in a 10 day supply. Then one day in August Melody asked if she could swallow the pills, and she has only fevered two times related to bad colds. The fever was only 100 - 101, but at times she does complain of mild headache, or sotomache. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Melody has been fevering since 3 months. She started on colchicine around 1 1/2 yrs. and we felt it was no help. Last March after a horrible episode we were desperate and decided to try again, and was perscribed 2 1/2 tabs. Only she wasn't yet 2 and couldn't swallow the pills. The doctor suggested finding a " mom and pop " pharmacy that could make it into a liquid. This was a wast of time. She continued to fever on regular schedule. I was frustrated because the liquid could only be made in a 10 day supply. Then one day in August Melody asked if she could swallow the pills, and she has only fevered two times related to bad colds. The fever was only 100 - 101, but at times she does complain of mild headache, or sotomache. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Hi Debbie, The labs are pulled to make sure that the drug is not overloading his liver and causing the liver enzymes (AST, ALT) to increase. It is a pretty common side effect of many drugs, and to remedy it, it usually only has to have the dosage decreased a little bit. We also have a CRP and ESR drawn as well in order to make sure there is not any inflammation present, which may cause amyloidosis if my son were to eventually be diagnosed with FMF. The fact that his inflammation levels are normal also suggests that the colchicine is working in his case! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Has anyone heard of using colchicine (gout medicine - blocks uric acid production/retention) as a treatment of mycoplasma? I just found an article on Gouty Arthritis (http://www.garynull.com/Documents/Arthritis/Gouty_Arthritis.htm) while I was investigating the protein " ubiquitin " which, apparently, is used by the body to control/dissolve other proteins. It would seem that one of the theories about RA is that certain fungi and/or bacteria (mycoplasma, ie) can set off the over production of ubiquitin as a result of their release of toxins. This results in unwanted tissue and immune destruction. The article seems to have been written from a dental point of view but hey, ... it caught my eye. Rick Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.