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

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  • #372403
    A Friend
    Participant

    @Zeljana wrote:

    @A Friend wrote:

    Zeljana, the following is from a search I did today about children’s use. There is much more about the benefits of ImmunoPro.
    AF

    Thank you AF for this information.I will speak to petiatrition about it.Yesterday I went to pharmacy and they did not heard of it or any products like that bur they can import it.I have also asked about Lysine and I have got the same answer. πŸ™„

    #372395
    Anonymous
    Participant

    Hi Zeljana,

    Thank you for the afternoon update. My heart sunk when I read the first part, then raised up again with the update.

    Hang in there, there will be ups and downs. All your efforts will pay off at the end for sure.

    Hugs to you and your daughter,

    Nuket

    #372396
    A Friend
    Participant

    @Zeljana wrote:

    Hi !

    She just wake up and she can not stand on her legs. I had to carry her on the toalet.
    It seems to me that her knee is swollen. πŸ˜₯
    I am hopping that it is Herx…
    __________________________________________________________________________________________________
    Update: this afternoon she was better and she even went to the park with my husband and he says she was running!!!

    Today was a good day after all what happened this morning.. πŸ˜€

    Zeljana,

    The following may not be related to your little one’s problems, but taking a look at this information could possibly give you ideas as to whether any of this “seems” to relate to your daughter’s condition.

    Have you ever felt that your little one had any reactions to any early vaccines they give babies/children? Did anything change in her health patterns after she had vaccines? You are working so hard, and reading so much, I hate to give you another link to explore, but am thinking some of the reactions and information in this paper just might be helpful … even if the causes of problems, and the problems themselves, were not triggered by the exact same thing. What this doctor/researcher writes may suggest protocols that could possibly be helpful to you for seeking help from a knowledgeable physician.

    Below is copied/pasted from the link:

    http://www.dreddyclinic.com/ADHD/Digestive_&_Metabolic_Problems_Abound_in_Patients_With_ADHD_&_Autism.pdf
    First excerpt:
    …Live virus vaccines, such as the one for measles are particularly problematic, said Dr. Bradstreet. “The way it is injected, the virus gets immediate access to the tissues in which it prefers to proliferate the lymph nodes and CNS-and escapes immune system clearance. As a result, residual virus can become a problem. In one recent study, 50% of a cohort of children with autism had cerebrospinal fluid antibodies to measles virus proteins found in the MMR vaccine. Many ADHD/autism children also have a unique form of irritable bowel disease in which proteins traceable to vaccine strains of measles are found.

    While there is still much room for debate about the connection between vaccines and neurodevelopmental disorders, there is a growing consensus that children with ADHD and autism typically have gastrointestinal problems, and that the two are related.

    The GI tract in most of these patients is, to put it bluntly, a total mess, said Dr. Bradstreet. He insisted that without cleaning up the gut problems, it is impossible to make headway in resolving ADHD and autism. Lower GI dysfunction, enzyme deficiencies and impairments of hepatic detoxification pathways are very common.
    [End of first excerpt]

    [Another excerpt quoted:]
    …Over the years, Dr. Bradstreet has developed sophisticated therapeutic protocols centered on correcting digestive problems, eliminating allergens and environmental toxins, and improving nutrition. Whenever possible, he prefers to treat these kids without pharmaceuticals. “I only use drugs as a rescue modality.”

    While ADHD and autism are related in many ways, and sometimes overlap, Dr. Bradstreet believes they are distinct conditions. He rejects the notion that autism is simply an extreme form of ADHD. However, he contends that both reflect altered brain and CNS function, which are the net result of environmental toxin overload, abnormal immunologic reactions, impaired hepatic detoxification, and GI dysfunction which can sometimes be extreme.

    [End of quoted material]

    Keep the faith… I believe as we get a “bigger picture” of possible problems, the pieces of our puzzle will eventually come together.

    AF

    #372397
    A Friend
    Participant

    @Zeljana wrote:

    @A Friend wrote:

    The following may not be related to your little one’s problems, but taking a look at this information could possibly give you ideas as to whether any of this “seems” to relate to your daughter’s condition………….
    AF

    Hi AF!
    Yes, lots of parents, including myself think that there is relation in vaccination and autoimmune disorders.
    I mentioned it before in my posts but there is no much that I can do if it is the case. I also am affraid to vaccinate my youngest ( 8 month old) with live vaccine. I have three daughter and the first two was vaccinate to the date.Ema had first simptoms of JIA two months after live vaccines. Second daughter ( Mia, almoust 4 years old) did not walk until she was 17 month old. She also spoke her first words much latter than “normal” kids. We took Mia to the neurologist and he sad that she has floopy infant sindrom.But luckly she turns out just fine, but she have little problem with spech and making sense in sentences. I think that all this preservatives are to dangerous for childrens small bodyes and they are too strong for their immune system who has not yet developed.
    I spoke to so many doctors about it but of course, they do not see the connection between vaccination.
    In our country immunization is required and the constitutional court has ruled that parents have no right to decide on this matter. Unvaccinated children have many problems in kindergarten and school,parents have trouble with social services , fines… 😑

    Zeljana,

    My heart truly goes out to you and this dilemma. Back when my four were babies, we knew nothing about the downside of vaccinations, etc. Nor did we have the kind of instant communication and available research we do today. Maybe, (hopefully) some of the things that are quoted in the above post about Dr. Wakefield’s suggestions will be helpful for your little ones. Giving the liver support would be a good place to start (such as silymarin or milk thistle) — for the liver each night is hard at work during our body’s metabolic detoxification. You might look over the suggestions. I know that a B-Complex vitamins are very necessary (assorted fresh vegetables are good sources. as are B-complex vitamins).

    Something many do not know is that we should never take a single B Vitamin, but should take a complete B-Complex, as they all work together. B Vitamins are not toxic even at high doses. EDIT If we need a larger dose of any of the B vitamins in the complex, then I’ve read we can add additional single B vitamins if we choose to do so. B vitamins the body does not need wash out with the urine and get flushed away. Evidence we are taking B vitamins can be seen in the color of the urine in the toilet bowl — it will look quite yellow. In my opinion, that is a good sign. All of the B-Complex vitamins have special jobs to do, in many areas of the body.

    Also, Vitamin C is very important, because our bodies long ago lost the ability to make Vitamin C. And the powder forms of it are good choices to use (as either: Sodium Ascorbate, Calcium Ascorbate, or Ascorbic Acid). (Just did a search about forms of Vitamin C and hit the jackpot with this link to Linus Pauling Institute: http://lpi.oregonstate.edu/ss01/bioavailability.html — and this is a link that will show you a chart giving the recommended dosage of forms of Vitamin C for babies and children: http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/

    We can take forms of Vitamin C to bowel tolerance. If we get a bit of diarrhea, then back down the dose to pre-diarrhea dose. Encourage you to read this information, as it is inexpensive but very important in giving the body a way to repair. Also, do people in your area make homemade sauerkraut? and kefir? These two things are rich in probiotics, which are healthy for the gut system.

    Prayers for you and your precious family,
    AF

    #372404
    Maz
    Keymaster

    @Zeljana wrote:

    So, we have decided to introduct another antibiotic, Amoxicilline, along with Zitromax.
    Maybe this combo will do better for her.

    We also send a sample from the lips sore to testing and we’ll get the results on Monday to see if there is a bacteria or staphylococcus because in last couple of days her corners of the lips were very cracked and it is spreading.

    Zeljana, this all sounds very wise on both fronts. Let us know how the testing turns out and hope the new abx combo moves her progress along a bit more swiftly.

    #372405
    Suzanne
    Participant

    I just logged in to post this! I’m going to start a separate thread so because might not catch it here.

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

    #372406
    zeljana
    Participant

    Hi all!

    My daughter is not good. We have change her antibiotic from erythromicin to amoxicillin and zitromax in June.
    Her CRP is not good. We have just get her results and it is 89. Last month it was 34 and it is rising again.
    I do not know why. My middle daughter is having virus infection so maybe she get some infection from her and it has nothing to do with JIA. I am comfoting myself.

    I am starting to wonder if I am doing the wright thing. Her fingers on leg are starting to bend inwards because she is having trouble walking of knee pain and she spares her leg. She start complaining on her neck pain and hand fingers.
    I do not know what to do.
    Maybe the dosage is to small or we should go back to erythromicin although zitromax is stronger but she is taking it once a week.
    Now I think that we are moving backwards.

    I am atill against biologics but I am scared for her future and damages on her joints.
    She is on AP from november 2013. I belive that some lab test should be better by now.
    I apologize for writting because I am in tears now.

    Any thoughts or advice please…

    Zeljana

    #372409
    Anonymous
    Participant

    Hello Zeljana,

    I am so sorry to hear this……………….:(

    I wish there is something I could do to help. Sending all my warm thoughts to your way..Nuket

    #372410
    Maz
    Keymaster

    @zeljana wrote:

    My middle daughter is having virus infection so maybe she get some infection from her and it has nothing to do with JIA. I am comfoting myself.

    I am starting to wonder if I am doing the wright thing. Her fingers on leg are starting to bend inwards because she is having trouble walking of knee pain and she spares her leg. She start complaining on her neck pain and hand fingers.
    I do not know what to do.
    Maybe the dosage is to small or we should go back to erythromicin although zitromax is stronger but she is taking it once a week.
    Now I think that we are moving backwards.

    Hi Zeljana,

    So sorry to hear you’re so worried about your baby girl. πŸ™ Have you tried emailing or calling Dr. S. in Iowa for his insights for you on what might be occurring? He may be able to suggest a dosage change for her that might solve the issue. CRP is a funny thing, especially in the early days and, yes, it is not specific for RA, JIA or any other rheumatic disease. It’s just a sensitive marker for inflammation, so other types of passing infection can also cause it to be elevated.

    The “dance” to remission is very much a 2 or 3 step forward and 1 or 2 step backwards dance all the way to remission. Antibiotic therapy is not immunosuppressive, so flares can and will still occur until remission is reached. It’s just that as time goes on, these flares should begin to become less frequent, less intense and shorter in duration.

    Is there any chance she is in rebound flaring from tapering or coming off her cortisone? I seem to recall you said she had been on a course to go stay with her Grandma? Something like that, but my memory is not as reliable these days.

    Also, any chance you can list her supplements and diet type in your signature line as this can help to prompt more response from others who may recognize what might be going on? Thanks!

    Oh…one last quick question…did you receive results of the rash biopsy yet?

    #372407
    Anonymous
    Participant

    Zeljana,
    Sores in the corner of the lips mean lack of vitamins B. It happens to me sometimes and when I take vitamin B complex it disappears immediately.
    I am wondering why your child didn’t start with Minocin – tetra group. I would follow Maz’s advise and contact Dr S. as soon as possible.
    Also not long time ago someone on our forum wrote that most AP doctors don’t use any longer Azithromycin /Zithromax/ because it can cause severe heart problems.
    Best wishes to your child.
    Linda L.

    #372416
    zeljana
    Participant

    Have you tried emailing or calling Dr. S. in Iowa for his insights for you on what might be occurring?

    Hi Maz!
    I do not know why I do not get notifications on my email on my posts.
    Yes, I wrotte to him and I got his reply yesterday. We will change dosage of Zitromax to 2x a week and continue on Amoxicilline every day.

    Is there any chance she is in rebound flaring from tapering or coming off her cortisone?

    She is on this dosage for a long time. We did not start tapering yet.

    Also, any chance you can list her supplements and diet type in your signature line as this can help to prompt more response from others who may recognize what might be going on? Thanks!

    I will but my previous profile was deleted and there was lots of information wich I had about her history. Now it seems I can not find the time to writte it all again.

    Oh…one last quick question…did you receive results of the rash biopsy yet?

    She did have sores on her mouth and I post resuluts but my profile was deleted and that post too.
    They came negative on strep.

    #372417
    zeljana
    Participant

    @Nuket wrote:

    Hello Zeljana,

    I am so sorry to hear this……………….:(

    I wish there is something I could do to help. Sending all my warm thoughts to your way..Nuket

    Thank you Nuket!

    Because my old profile is deleted and I open new one with same name I do not get replys on my posts on my email because system is not recognize that I am the same Zeljana but the new one.
    I must search for your posts regarding my loggin topic on registration.

    #372418
    zeljana
    Participant

    “Linda L”]Zeljana,
    ]Sores in the corner of the lips mean lack of vitamins B. It happens to me sometimes and when I take vitamin B complex it disappears immediately.

    Yes I, am giving her multivitamines and B is in it.

    I am wondering why your child didn’t start with Minocin – tetra group. I would follow Maz’s advise and contact Dr S. as soon as possible.

    Unfortunately, she is too young for tetras- Mino or Doxy.

    Also not long time ago someone on our forum wrote that most AP doctors don’t use any longer Azithromycin /Zithromax/ because it can cause severe heart problems.

    I have done reshearch prior giving her Zitromax and I have found that-qoute
    “Researchers concluded that

    #372419
    Anonymous
    Participant

    Sorry Zeljana, I meant B Complex. Please make sure your child gets all vitamins B. Has she been checked for Vit 12 level?
    Linda L.

    #372420
    Maz
    Keymaster

    @zeljana wrote:

    I do not know why I do not get notifications on my email on my posts.

    Have you checked your spam box? Sometimes email systems pick up the automated notifications as spam and relegate them to that folder.

    Yes, I wrotte to him and I got his reply yesterday. We will change dosage of Zitromax to 2x a week and continue on Amoxicilline every day.

    Glad to hear you connected with Dr. S. It’s good to connect with him any time you have any concerns about your daughter’s progress.

    She is on this dosage for a long time. We did not start tapering yet.

    Okay, so that is good to know as it is an indication that her dose needed tweaking and her symptoms aren’t due to rebound from tapering off the cortisone.

    I will but my previous profile was deleted and there was lots of information wich I had about her history. Now it seems I can not find the time to writte it all again.

    When you have time to re-write this info, it should help others to respond. As you will see from looking at the main site and the RBFV message above, the site has been flooded with spam and we have been dealing with this behind the scenes on the forum for a while now. Posters on the forum fortunately don’t have to see all the spam the volunteers delete each day. RBF will have a new site and forum in the near future, so this should be behind us then.

    She did have sores on her mouth and I post resuluts but my profile was deleted and that post too.
    They came negative on strep.

    Not clear if the spots were in her throat or on the outside of her mouth, but sounds like they have cleared up now, so that’s a good thing. πŸ™‚

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