Home Forums General Discussion Please help ! Daughter with JIA 5 years old

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  • #372385
    A Friend
    Participant

    @Zeljana wrote:

    @A Friend wrote:

    @Zeljana wrote:

    Zeljna,
    From what you wrote above, the biggest red flag for me was the finding of candida. AF

    Thank you for help.
    When they find candida in her stool we immediately started with anticandida diet and Nystatine, she was taking Citrofit Extract Grapefruit seed) and after a while we repeated tests.They were negative.Although she is on antibiotics now so we must do the tests again.She is taking probiotics to prevent yeast overgrowth.We have done so much test that maybe I forgot few of them.
    We also tryed serrapeptase enzyme capsules, colodial silver, cod liver oil.
    We did tests ( mouth, nose, throath) for bacterial infections.They were sterile.

    I am going to look into Dr.Crook’s method.
    Thank you so much!

    #372386
    Suzanne
    Participant
    Zeljana wrote:

    I was wondering did you consider to take amoxicillin for a longer period of time besides azithromiycin? Was there a reason why she took it only for a month?
    I am thinking that maybe I will give Ema both for a longer period.
    I was talknig to Evalon (Yvette) a few month ago and her daughter was for 1,5 year on both antibiotics.
    Was there any sideffects from amoxicilline that your daughter had experienced?

    /quote]

    I can consider things all day long, but it takes a doctor to write the prescription! She only took it for one month because they were covering their butts over a positive Lyme test. If there had been any noticeable change, I’m sure I could have convinced them to go longer. In hindsight, I wish she could have stayed on the azithromycin to see what the combo would have done. My oldest took both for pneumonia, no problem.

    She complained of her feet falling asleep a lot while she was on it, so that could be a side effect or herx. It was the only time it happened, and I heard through the grapevine about another child who had the same thing while on it. It wasn’t bad enough to discontinue it, and the other child also stayed on it.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #372387
    Suzanne
    Participant

    @Zeljana wrote:

    Before and after she was diagnosed nobody did the strep titar.We aksed for it last year and there it was S.PYOGENS and latter they find S.AUREUS.
    They are resistent to lots of antibiotics (erythromicin, azithromicyin…).If strep is deep in muscles and soft tissue pinicillin is not enough.

    Maybe there is some strep that causing this.
    Did your daughter had strep infection or her tonsills removed?

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #372388
    A Friend
    Participant

    @Zeljana wrote:

    @Suzanne wrote:

    She has also been on amoxicillin for a month (no change) and Clindamycin for six months (no change and azithromycin was much easier on her stomach so we switched back).

    In my heart, I believe she needs a combination of antibiotics for a cure. When it is a child who has a great quality of life, it is hard to want to experiment on them to find the right mix. I hope that someday, whatever she has will be identified and treated appropriately. Until then, we are happy to see her attend school every day and enjoy all of the activities she participates in. There is nothing holding her back.

    Don’t forget probiotics, too!

    Hi Suzanne!

    I have decided that we will introduce azithromicyn MF 200 mg. instead erythromycin. I was wondering did you consider to take amoxicillin for a longer period of time besides azithromiycin? Was there a reason why she took it only for a month?
    I am thinking that maybe I will give Ema both for a longer period.
    I was talknig to Evalon (Yvette) a few month ago and her daughter was for 1,5 year on both antibiotics.
    Was there any sideffects from amoxicilline that your daughter had experienced?

    Thank you!

    #372389
    A Friend
    Participant

    EDIT: Zeljana, my face is also red! 😳 The link I posted in this spot was not the link I thought I was pasting. But am adding another one that could possibly be of much benefit, and has for me in the past:
    http://www.sgn80.com/docs/one_world_whey_report.pdf
    [End of Edit]

    I can feel so many prayers from the Board for you and your Sweet Girl! Hope they will lift you up!!!

    A Friend

    @Zeljana wrote:

    @A Friend wrote:

    Good morning, Zeljana,

    I just returned last night from several days out of town. The RBF message that popped into my e-mail was this one between you and Suzanne.

    I’m sure you and your physician are considering every treatment option carefully. Hope my message does not frighten you, but wanted to share with you some ways to enhance our liver. My own liver had apparently taken a beating before I was prescribed Zithromax as a 2nd abx when an abnormal lab showed a need for such as it. My AP physician added pulsed Zithromax on alternate days to my pulsed Minocin. This will probably not happen to your little one — and especially if this possibility is known about and extra liver support to help with its detoxification is given. But thought if you are aware of liver helps such as these, it might be reassuring.

    Two things in the following links might reinforce her liver if her physician thinks appropriate for her. I actually had to get off all meds and supplements for a time when I had a very volatile reaction with the addition of the Zithromax, and that was at a time when I had also just found information about nondenatured whey protein (and its quickly making glutathione and the amino acids role in detoxification) in Dr. Paul Cheney’s research. And since that time, I include specific supplements for liver protection and help with detoxification. These discussions are included in the Roadback links below. Good luck with the new medication regimen.

    Two links to messages on RBF BB:

    viewtopic.php?f=1&t=5921

    viewtopic.php?f=1&t=5921&start=10#p69759

    The link below was quickly found this morning (just as illustations of what might be available):

    http://altmedicine.about.com/od/aznaturalremedyindex/a/liver_herbs.htm

    Prayers for you and your little one…
    AF

    Hi AF!

    Thank you so much for this information.
    You really are a friend!
    I have just remembered that she was using “milk thisle” year ago but with all this on our mind we completely forget about it.So, thank you again for this reminder!
    You are our Guardian angel:))

    #372394
    Maz
    Keymaster

    Hi

    #372399
    Suzanne
    Participant

    @Zeljana wrote:

    Did anyone have sores in the corners of the lips ???

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #372400
    A Friend
    Participant

    @Zeljana wrote:

    Hi all!

    We have started Zitromax two weeks ago ( she only gets 150 mg once in 10 days) and for now there is no much change although she was walking without limping yesterday but today she is complaining on pain in her knee and nausea .We are also trying to reduce her corticosteroids ( 4 mg every other day).She was on 4 mg every day.

    I emailed two AP doctors ( one is in America and other is in Turkey).They have completely different opinions about same antibiotics.One doctor is for erythromicine ( or amoxicilline with zitromax )and the other is pronouncedly against giving it for children ( e.g. Zitromax, chlaritromicine-macrolides).His opnion is that she must take ampicilin.
    We have decided to stay on this pulse dose of Zitromax ( azythromicine) and we will see how her body will react.It is still too early to tell.Maybe this nausea was Herx???

    Did anyone have sores in the corners of the lips ???
    She is having them for a some time and her pediatrition thinks it may be fungi.
    She also have capillaries on her cheeks. ❓

    I also have trouble finding “Milk thistle” for cleaning her liver because I can only find capsuls for adults.
    Every day is a struggle but we will win this. I know it in my heart. πŸ˜€

    #372401
    A Friend
    Participant

    @Zeljana wrote:

    Hi AF!
    Thanks for staying around with us ! πŸ˜€

    AF wrote: My privilege… just hoping to be of some help.

    We have dealth with candida in her stool and she was on Nystatin too.We also gave her grapefruit seed extract but you are right, candida maybe came back.I also googled Dr.Crooks work before when you mentioned it in previous post and this is worth to look into much deeper and we will do the tests again.
    She is on probiotics for a long time, at the moment she is taking VSL#3.

    Unfriendly organisms do not grow where our bodies have the recommended pH/alkaline environment.

    I have also read about that.We are giving her soidum ascorbate for that but not sure if the dosage is right because there is no info for children.We are giving her 120 mg.

    [AF: Go to http://www.arthritistrust.org and when it opens, there will be a long list of Articles Important. Click on this title. It will give you a long list of Articles in alphabetical order. Go down to an article beginning: Vitamin C… and it’s by Dr. Cathcart. If you read it, Dr. Cathcart tells exactly how to arrive at the correct dosage… and this is to bowel tolerance. It tells you to test bowel tolerance using powdered Ascorbic Acid. Then when that is determined, it was suggested that we get two types of powders to better keep minerals in balance also — one is Sodium Ascorbate and the other is Calcium Ascorbate. When bowel tolerance is determined (according to Dr. C’s directions) that could be the best dosage. You do not want her to get loose bowels. If this happens, then back down to a lower dosage retesting again. My spouse takes his powder in orange juice; I put mine in about 4 ounces of pure water with lemon juice and a bit of Kal brand stevia (I don’t like most of the stevia products, but have loved Kal brand for a very long time… it tastes like sugar is in it). If she improves over time, you may have to decrease the amount of Ascorbic Acids used, as the body (when we used to be able to make it in our bodies eons ago, would make what we need, and decrease when we didn’t need as much). Another place where you can find trustworthy information is to do a search for LPI Micronutrient Research Center, and when it opens, do a search in a little window at the bottom-left on the screen, and put it Vitamin C (or any other supplement you’d like to know about). Good luck with your learning and tweaking!

    B vitamins in the links above (along with other things) are so important, and B vitamins we don’t use flushes out in the urine. I was impressed with these two links quickly found. Hope they are helpful.

    I must speak with pediatrition about B vitamins.She may have B12 deficiency due to intake antibiotics.

    [AF responds: When we have yeast fungal overgrowth, we have a huge shortage of good bacteria that our friendly organisms have the responsibility of making to keep our bodies healthy). So many doctors that should know about these things, unfortunately look at us like we are crazy. Make sure you ask these kinds of questions of healthcare professionals knowledgeable of natural medicine. There are usually these kinds of professionals, but unfortunately we have to sometimes search for them — like Dr. Crook, the pediatric allergist… an MD who had to educate himself and others. ]
    Thank you again!

    #372398
    A Friend
    Participant

    @Zeljana wrote:

    @A Friend wrote:

    [AF: Go to http://www.arthritistrust.org and when it opens, there will be a long list of Articles Important.

    Thank you again AF!

    I am on this site since yesterday!There is lots of new information on it.Looks I will be reading it for many more nights…
    You are keeping me awake. πŸ˜†

    Zeljana, you are becoming a virtual fountain of information, I know. It is obvious you are as bright as a new dollar. And you’ve been placed in a situation where you can be so much help to parents with sick children.

    Hugs,
    AF

    #372402
    Anonymous
    Participant

    @Zeljana wrote:

    Hi!

    Today I have done home test with saliva for Candida. Ema does not have it but I tested myself also. I do. πŸ™„
    I also done urine testing for pH with test strips and pH in her urine was 6. According to instruction inside the box it is normal.
    I also started giving to her liquid vitamins wich, among others, contains vitamin B12 and B6. I am hoping that it will help to get ride of the sores on her mouth.

    It seams to me that she have less stiffness in the morning and she is walking better since switching to Zitromax although she is still limping and complaining about knee pain.
    Time will tell.If Zitromax would not help we will try Amoxicilline with Zitromax or maybe Ampicilin alone.
    But for now we will stay on Zitromax for couple of months.

    #372393
    A Friend
    Participant

    @Zeljana wrote:

    Hi!

    Today I have done home test with saliva for Candida. Ema does not have it but I tested myself also. I do. πŸ™„
    I also done urine testing for pH with test strips and pH in her urine was 6. According to instruction inside the box it is normal.
    I also started giving to her liquid vitamins wich, among others, contains vitamin B12 and B6. I am hoping that it will help to get ride of the sores on her mouth.

    It seams to me that she have less stiffness in the morning and she is walking better since switching to Zitromax although she is still limping and complaining about knee pain.
    Time will tell.If Zitromax would not help we will try Amoxicilline with Zitromax or maybe Ampicilin alone.
    But for now we will stay on Zitromax for couple of months.

    #372392
    A Friend
    Participant

    Zeljana wrote: “I can not find if children can use this? I would love to try this for her.”

    I will look over information to see about children’s intake. And perhaps Maz or others may have this information about children’s use.
    AF

    #372390
    A Friend
    Participant

    @Zeljana wrote:

    Hi AF!

    More great and helpful informations from you! πŸ™‚

    @A Friend wrote:

    One thing I accidentally stumbled upon was when I added ImmunoPro to diet at bedtime on an empty stomach. It is comprised of nondenatured whey protein containing amino acids, which I’d learned we must have for metabolic detoxification. It is known for quickly making glutathione (by researcher Dr. PC). That was really a boost to helping me stay in a more alkaline pH range.
    AF

    I can not find if children can use this? I would love to try this for her.

    Zeljana, the following is from a search I did today about children’s use. There is much more about the benefits of ImmunoPro. A search on RBF BB search window may also be helpful… but don’t remember children’s use being discussed, even though the literature below mentions children’s use:

    A search using words: immunopro use by children
    This turned up a number of finds on ImmunoPro and Children. I suggest you repeat the same search above.

    An excerpt from what was written on this site/link cited from the ImmunoPro instructions:
    http://www.rockwellnutrition.com/ImmunoPro-Rx.html

    #372391
    Anonymous
    Participant

    Hi Zeljana,

    I am sorry to hear about your daughter tummy problem. When they prescribed anti inflammatory for my daughter, she had lots of tummy issues as well . She had issue even after we stop NSAID’s . The only thing really helped her was slippery elm. She was having couple of them every day. Thanks God it is gone now she tolerates Clarithromycin well .

    Lysine is tablet that she was having one every day, 500mg. You may get it liquid as well I think. After we started Lysine, she never had sore around the lips. I have continued Lysine for couple of months one a day. These day I am giving one every couple of days.

    Warm hugs to your girl as well. One thing for sure is, once all is over you will remember the pain more than they do. My daughter almost forgot that she was limping last summer.

    Lots of hugs to you and your daughter. Hang in there. Nuket

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