Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Mark: Re Enbrel, with systemic JRA there has not been as much success as with other types of RA. Our son Elliot, also 5, tried Enbrel for about a year, but gave it up. But it's probably worth a try. Re prednisone, there are studies that show that alternate-day treatment helps to not arrest growth as much (even if you have to double the dose on the alternate day). That's what Elliot does now. Keep in touch. Charlie > was diagnosed with Systemic Onset JRA at 14 mos. then he went > into complete remission around a year later. Then around his 5th > birthday this past October he had another flare up. > > Currently he is taking 10mg of Prednisone /day, 22mg of Naproxen/day > and 17.5mg of MTX/week. > > Starting today he will begin getting 2 injections /week of Enbrel. > > My wife and I are wondering if the Enbrel will allow us to reduce the > Prednisone? > > Thanks, > > Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Hi Mark, Good luck with the Enbrel treatments. As mentioned, it hasn't seemed to be quite as successful with the small numbers of children who have the systemic subtype of JRA who have taken it but even in this category, it has helped some ~ sometimes tremendously. I think you should know within 6 months if it's working. Probably a lot sooner. They say it works better when taken in conjunction with continuing MTX. Please keep us updated on how responds. You will be in our thoughts. Take care, Georgina Mark Bradford wrote: > > was diagnosed with Systemic Onset JRA at 14 mos. then he went > into complete remission around a year later. Then around his 5th > birthday this past October he had another flare up. > Currently he is taking 10mg of Prednisone /day, 22mg of Naproxen/day > and 17.5mg of MTX/week. > Starting today he will begin getting 2 injections /week of Enbrel. > My wife and I are wondering if the Enbrel will allow us to reduce the > Prednisone? > Thanks, > Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Hi Pepi, I knew she was going to have her son tested, but I didn't know that she had done it. I am so sad to hear that he tested pos. I hope that she can at least get him the proper treatment, but with the runaround she has been through I can't say that I am opptomistic. Now her fight takes on a whole new meaning....she will be bearing claws and teeth to make sure something happens. Thanks for letting me know the latest. Your Lyme Friend, in Stuttgart, Germany ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ I think her son tested poss on both IgG and IgM, she thinks she gave it to him Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 hi robbin, i have been following your story silently....im sorry to hear that you daughter is in so much pain....my prayers will be with you and her...i am glad that atleast now you have an idea of what may be going on. god bless bonny >From: Robbin40@... >Reply- > >Subject: about >Date: Thu, 15 Feb 2001 22:56:32 EST > >hi yall >just to let yall know how things are going >melissa still is out of school this being week 3 >took her to neurology yesterday and the first doctor said >the headaches were due to medication he went to the head dr >and had him come check melissa >this dr checked her from head to toe >his thoughts are the mennigitis that she had caused some damage >maybe just scarring but also due to the JRA the inflamation factor >has caused the membrane to collect fluid on the brain >and has caused the knot on the neck he advised its rare but not impossible >this problem and cause she has JRA this could be the reason of the >headaches >he also said he wouldnt tell me anymore until he has the brain MRI done >we go for that mar 7th then see him mar 14th unless the medication doesnt >work >or at least ease it >her left elbow and knee are still acting up and her allergys started >yesterday >this doctor put her on Elavil 12.5 mgs at bedtime for 2 weeks then raise it >to 25mgs at bedtime >i called the pediatricain today to let her know and to tell me would the >Elavil >have ANY reaction to her other medications she called back and told me to >stop the flexaril and start the Elavil as directed and call her if i have >any problems >hopeing this is whats going on if it is maybe this will get fixed >she is taking it ok she just wants the headaches gone >i will let yall know more when i do >she goes the 22nd to the rhuemy and the 23rd to her pediatricain >Robbin _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi, I posted about my son , 3,9 year old, two months ago.Posting # 60143. is , as I had written before, extremely verbal, aware of other kids, imitates great, and does many other things; obssessed with cars, lines up them from time to time, scripts a lot, rigidity etc. However, 8 months ago he couldn't put two words together, today he can say sentences of 7-8 words together, asks questions, and is quite fun-loving. He is not on any diet.We tried two times to give him enzymes (ZP and AFP) and backed off after a few days because, the first time he started head banging, which he hadn't done before, and scared us, and the second time he got rash all over the upper part of the body. Problems or not, we had to keep trying . It has been a week now, he is on ZP and AFP, one cap per major meal and half per snack. And, this time we are doing Epsom salts baths in the evening - 60g in a very small bath tub (are we overdosing?). What we see is, is VERY verbal now, he was so even before, but now he is saying something, and comments and scripts often, all the time. Not yet conversational. And he sleeps like a log. He used to toss and turn, and cry , as you all know how it is.We are, generally speaking, quite pleased. My question is: He is still very, very " oppositional " . He can't take " No. " as an answer. And, he would not compromize for his life.There are so many things he wouldn't do although he knows perfectly well how to do them. We know he has a yeast problem. He got tested at the Great Plains Lab. a couple of months ago and the test came back positive (ONE PLUS-Geotrichium species;I guess this is not that high, and few abnormal Yeast KOH). We want badly to deal with the behavioral issues that might stem from the yeast. So, should we start giving him No-Fenol right away or wait another couple of weeks on just ZP and AFP. If yes, how much? Should we try now any yeast fighter, GSE, etc? Or in a month? Should we start giving him zinc? He seems to react favourably to magnesium,which was low at testing, and we know, from the GPL., he is zinc deficient. Any comment shall be greatly appreciated and thank you for all your postings, Kristian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 My daughter didn't have the Happy Child Effect from ZP and Pep that some children see. She was angry and/or anxious most of the time. The anxiety partially responded to NF but was resolved by the OLE. Eliminating anxiety eased transitions and surprised in general. NF has an effect on yeast so it is fair to say to some degree that giving NF will help with yeast. NF breaks down the cell wall that can form as a protective barrier around yeast. Yeast with this hard shell is resistant to normal antifungals. However NF goes far beyond yeast for my daughter. There seems to be some sugar regulating properties to it as well as breaking down the amine neurotransmitters like dopamine and serotonin. I expect there are more things NF does, we just don't know yet. OLE seemed to treat a viral problem in my daughter. While she was on it she developed and resolved some rashes and an infection, I believe to be subclinical measles (measles without rash). After this she stopped the OLE and did not regress. From what I read into your reports, your son is doing well on enzymes and now the other issues that stand out. This doesn't preclude yeast but I suspect it there is much more. P --- kristiankatzori <kristiankatzori@...> wrote: > Could you explain what other things were addressed > with No Fenol and > OLE? And, as I mentioned, is supposed to have a > yeast problem, > given his test results. > Thanks, > Kristian > > > > > Hi, > > > > > > I posted about my son , 3,9 year old, two > months > > > ago.Posting # > > > 60143. is , as I had written before, > extremely > > > verbal, aware of > > > other kids, imitates great, and does many other > > > things; obssessed > > > with cars, lines up them from time to time, > scripts > > > a lot, rigidity > > > etc. However, 8 months ago he couldn't put two > words > > > together, today > > > he can say sentences of 7-8 words together, asks > > > questions, and is > > > quite fun-loving. He is not on any diet.We tried > two > > > times to give > > > him enzymes (ZP and AFP) and backed off after a > few > > > days because, the > > > first time he started head banging, which he > hadn't > > > done before, and > > > scared us, and the second time he got rash all > over > > > the upper part of > > > the body. Problems or not, we had to keep trying > . > > > It has been a week > > > now, he is on ZP and AFP, one cap per major meal > and > > > half per snack. > > > And, this time we are doing Epsom salts baths in > the > > > evening - 60g in > > > a very small bath tub (are we overdosing?). What > we > > > see is, is > > > VERY verbal now, he was so even before, but now > he > > > is saying > > > something, and comments and scripts often, all > the > > > time. Not yet > > > conversational. And he sleeps like a log. He > used to > > > toss and turn, > > > and cry , as you all know how it is.We are, > > > generally speaking, quite > > > pleased. > > > My question is: He is still very, very > > > " oppositional " . He can't > > > take " No. " as an answer. And, he would not > > > compromize for his > > > life.There are so many things he wouldn't do > > > although he knows > > > perfectly well how to do them. We know he has a > > > yeast problem. He got > > > tested at the Great Plains Lab. a couple of > months > > > ago and the test > > > came back positive (ONE PLUS-Geotrichium > species;I > > > guess this is not > > > that high, and few abnormal Yeast KOH). We want > > > badly to deal with > > > the behavioral issues that might stem from the > > > yeast. > > > So, should we start giving him No-Fenol right > away > > > or wait another > > > couple of weeks on just ZP and AFP. If yes, how > > > much? > > > Should we try now any yeast fighter, GSE, etc? > Or in > > > a month? > > > Should we start giving him zinc? He seems to > react > > > favourably to > > > magnesium,which was low at testing, and we know, > > > from the GPL., he is > > > zinc deficient. > > > Any comment shall be greatly appreciated and > > > thank you for all your postings, > > > Kristian > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 , How long was your daughter on OLE, and what dosage? Did you see any negatives when you first started it? Nell > My daughter didn't have the Happy Child Effect from ZP > and Pep that some children see. She was angry and/or > anxious most of the time. The anxiety partially > responded to NF but was resolved by the OLE. > Eliminating anxiety eased transitions and surprised in > general. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 How much NF did you give your daughter at the beginning? When did you start it? Thanks, Kristian > > > > > > > Hi, > > > > > > > > I posted about my son , 3,9 year old, two > > months > > > > ago.Posting # > > > > 60143. is , as I had written before, > > extremely > > > > verbal, aware of > > > > other kids, imitates great, and does many other > > > > things; obssessed > > > > with cars, lines up them from time to time, > > scripts > > > > a lot, rigidity > > > > etc. However, 8 months ago he couldn't put two > > words > > > > together, today > > > > he can say sentences of 7-8 words together, asks > > > > questions, and is > > > > quite fun-loving. He is not on any diet.We tried > > two > > > > times to give > > > > him enzymes (ZP and AFP) and backed off after a > > few > > > > days because, the > > > > first time he started head banging, which he > > hadn't > > > > done before, and > > > > scared us, and the second time he got rash all > > over > > > > the upper part of > > > > the body. Problems or not, we had to keep trying > > . > > > > It has been a week > > > > now, he is on ZP and AFP, one cap per major meal > > and > > > > half per snack. > > > > And, this time we are doing Epsom salts baths in > > the > > > > evening - 60g in > > > > a very small bath tub (are we overdosing?). What > > we > > > > see is, is > > > > VERY verbal now, he was so even before, but now > > he > > > > is saying > > > > something, and comments and scripts often, all > > the > > > > time. Not yet > > > > conversational. And he sleeps like a log. He > > used to > > > > toss and turn, > > > > and cry , as you all know how it is.We are, > > > > generally speaking, quite > > > > pleased. > > > > My question is: He is still very, very > > > > " oppositional " . He can't > > > > take " No. " as an answer. And, he would not > > > > compromize for his > > > > life.There are so many things he wouldn't do > > > > although he knows > > > > perfectly well how to do them. We know he has a > > > > yeast problem. He got > > > > tested at the Great Plains Lab. a couple of > > months > > > > ago and the test > > > > came back positive (ONE PLUS-Geotrichium > > species;I > > > > guess this is not > > > > that high, and few abnormal Yeast KOH). We want > > > > badly to deal with > > > > the behavioral issues that might stem from the > > > > yeast. > > > > So, should we start giving him No-Fenol right > > away > > > > or wait another > > > > couple of weeks on just ZP and AFP. If yes, how > > > > much? > > > > Should we try now any yeast fighter, GSE, etc? > > Or in > > > > a month? > > > > Should we start giving him zinc? He seems to > > react > > > > favourably to > > > > magnesium,which was low at testing, and we know, > > > > from the GPL., he is > > > > zinc deficient. > > > > Any comment shall be greatly appreciated and > > > > thank you for all your postings, > > > > Kristian > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Zinc poses problems for a lot of kids, even those who show as deficient on labs. Get trial sizes if you can, gets expensive throwing away bottle after bottle. I would use the No-Fenol in combo with GSE, much more effective. Congratulations on getting through the tough spots with the enzymes. For us No-Fenol was the toughest to adjust to, but very much worth it. Good luck to you and your son. About > Hi, > > I posted about my son , 3,9 year old, two months ago.Posting # > 60143. is , as I had written before, extremely verbal, aware of > other kids, imitates great, and does many other things; obssessed > with cars, lines up them from time to time, scripts a lot, rigidity > etc. However, 8 months ago he couldn't put two words together, today > he can say sentences of 7-8 words together, asks questions, and is > quite fun-loving. He is not on any diet.We tried two times to give > him enzymes (ZP and AFP) and backed off after a few days because, the > first time he started head banging, which he hadn't done before, and > scared us, and the second time he got rash all over the upper part of > the body. Problems or not, we had to keep trying . It has been a week > now, he is on ZP and AFP, one cap per major meal and half per snack. > And, this time we are doing Epsom salts baths in the evening - 60g in > a very small bath tub (are we overdosing?). What we see is, is > VERY verbal now, he was so even before, but now he is saying > something, and comments and scripts often, all the time. Not yet > conversational. And he sleeps like a log. He used to toss and turn, > and cry , as you all know how it is.We are, generally speaking, quite > pleased. > My question is: He is still very, very " oppositional " . He can't > take " No. " as an answer. And, he would not compromize for his > life.There are so many things he wouldn't do although he knows > perfectly well how to do them. We know he has a yeast problem. He got > tested at the Great Plains Lab. a couple of months ago and the test > came back positive (ONE PLUS-Geotrichium species;I guess this is not > that high, and few abnormal Yeast KOH). We want badly to deal with > the behavioral issues that might stem from the yeast. > So, should we start giving him No-Fenol right away or wait another > couple of weeks on just ZP and AFP. If yes, how much? > Should we try now any yeast fighter, GSE, etc? Or in a month? > Should we start giving him zinc? He seems to react favourably to > magnesium,which was low at testing, and we know, from the GPL., he is > zinc deficient. > Any comment shall be greatly appreciated and > thank you for all your postings, > Kristian > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Thank you for your answer. We have been advised by the GPL to give OoO or Uva Ursi for his yeast.Do you think these are interchangeable with GSE? And wouldn't be too much on him to give No Fenol and GSE at the same time? Kristian > Zinc poses problems for a lot of kids, even those who show as deficient on > labs. Get trial sizes if you can, gets expensive throwing away bottle after > bottle. I would use the No-Fenol in combo with GSE, much more effective. > Congratulations on getting through the tough spots with the enzymes. For us > No-Fenol was the toughest to adjust to, but very much worth it. Good luck to > you and your son. > About > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 > My question is: He is still very, very " oppositional " . He can't > take " No. " as an answer. And, he would not compromize for his > life. For my son, this would be either viral or lack of B6/B12. >>We know he has a yeast problem. Yeast can also cause this problem. > So, should we start giving him No-Fenol right away or wait another > couple of weeks on just ZP and AFP. If yes, how much? I would consider giving 1/4 to 1/2 capsule No-Fenol, see if that helps. GSE along with No-Fenol worked very well for my kids. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi , Thank you for your answers to all my questions. May I ask how your daughter is doing now, after two years on No-Fenol and OLE? Please, do excuse my curiosity, if my question is too " nosy " . Kristian- -- In , Fred Davies <mrrva@y...> wrote: > My daughter was nearly the same age as your son (3 yr > 11 m) and it was almost 2 years ago when she started > NF. I started with a few grains and worked up very > gradually. After a month she was taking half a cap in > her yogurt each day. > > There doesn't seem to be a time of day that is better, > any time of day is good. What does seem better is to > give it in yogurt. > > Some kids can't do it that way though, some have to > start with a whole cap. > > I forgot to say that I thought the epsom salt dose was > fine. When my daughter was starting enzymes I would > give her two or more a day. I think the extra > magnesium is good for them. > > P > > --- kristiankatzori <kristiankatzori@y...> wrote: > > > How much NF did you give your daughter at the > > beginning? When did you > > start it? > > Thanks, > > Kristian > > > My daughter didn't have the Happy Child Effect > > from ZP > > > and Pep that some children see. She was angry > > and/or > > > anxious most of the time. The anxiety partially > > > responded to NF but was resolved by the OLE. > > > Eliminating anxiety eased transitions and > > surprised in > > > general. > > > > > > NF has an effect on yeast so it is fair to say to > > some > > > degree that giving NF will help with yeast. NF > > breaks > > > down the cell wall that can form as a protective > > > barrier around yeast. Yeast with this hard shell > > is > > > resistant to normal antifungals. > > > > > > However NF goes far beyond yeast for my daughter. > > > There seems to be some sugar regulating properties > > to > > > it as well as breaking down the amine > > > neurotransmitters like dopamine and serotonin. I > > > expect there are more things NF does, we just > > don't > > > know yet. > > > > > > OLE seemed to treat a viral problem in my > > daughter. > > > While she was on it she developed and resolved > > some > > > rashes and an infection, I believe to be > > subclinical > > > measles (measles without rash). After this she > > > stopped the OLE and did not regress. > > > > > > From what I read into your reports, your son is > > doing > > > well on enzymes and now the other issues that > > stand > > > out. This doesn't preclude yeast but I suspect it > > > there is much more. > > > >.com/new_mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , Congratulations! I am extremely happy for your daughter and your family. is on the enzymes (ZP and AFP) and he gets Epsom salts baths. Nothing else.Yes, we are giving him the enzymes in his yoghurt. We plan to start giving him No Fenol. Do you think we should wait till we've passed the three week adjustement period? He doesn't seem to have any adverse reaction to the enzymes this time. I am sorry to ask you so many personal questions, but could you share with me what you have tried (supplements, therapies etc.) and in what order? We can not, obviously, copy you , but , at least, could look into the same direction from time to time. For example, you mention in your e-mail B6/B12 - this is something we are thinking about, but do not know when to begin. As I said before, one of ' biggest problems is behavioural, anxiety, transitions;agression is not really an issue, irritability - yes. Thanks, Kristian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 We rotated Ooo, GSE and OLE. I believe Uva Ursi is like OLE, however didn't like some of what I found on Uva Ursi, that's why we chose OLE. Administering all three at once might be overkill, might be too uncomfortable to stomach. Although, I've been dosing once a day GSE with the Flagyl ( Flagyl in place of the OoO to kill the Clostridia my son has), a few hourse after the Flagyl, but it is dicey. I would experiment on yourself first, just to get a feel for what your child will undergo, recognizing you need to adjust dosage accordingly. Some of us parents dose the OLE, then give OoO and then follow with GSE. The yeast that can flourish when you kill off the bacteria, via the OoO, sort of requires the GSE to follow the OoO dosing. But like I said, we were rotating, not doing all at once. Although the No-Fenol was given several times daily. For us it is more effective to alter/balance the negatives and positives rather than address all the negatives at once. What I mean is, I attack the bad bacteria via the OoO, and dose heavily a few hours later with a good couple of probiotics, and do this several times a day. Not massive dosing, but in increments througout the day. While I'm doing the GSE, in combo with the No-Fenol, use a little modified SCD, cut out the corn syrup for a few days in the diet and increase the protein in the diet for purposes of energy, etc. Die off causes severe lethargy in our household. The papain and bromelain in the enzymes really help us out a great deal. I love the fact that the enzymes break that hard shell the bacteria and virus' protect themselves with, makes it much easier for our " treatments " to penetrate. About > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Thank you . We'll have this in mind when we start dealing with yeast and bacteria. Kristian > > > Zinc poses problems for a lot of kids, even those who show as > > deficient on > > > labs. Get trial sizes if you can, gets expensive throwing away > > bottle after > > > bottle. I would use the No-Fenol in combo with GSE, much more > > effective. > > > Congratulations on getting through the tough spots with the > > enzymes. For us > > > No-Fenol was the toughest to adjust to, but very much worth it. > > Good luck to > > > you and your son. > > > About > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 , Rattle on,thats what we are here for. Yes,the WBC is white blood cells and if it's below normal the body isn't able to fight infection.Most likely though if it was low your rheumy whould have let you know. It sounds to me that alot of the problems is haveing has alot to do with being exposed to a large number of children for the first time. My kids rarely got sick until they started daycare/preschool at 2 and 4 yrs old.They got slammed with everything under the sun and thats where caught the virus that started his JRA journey. Mom means well but try and ignore the comments the best you can.If wants breakfast for dinner and dinner for breakfast give it to her.In the beginning these kids lose their appetite and lose weight and need all the extra calories they can get.Bring on the ice cream,lol Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
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