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Hello everyone, we need your help so badly. Our beautiful healthy happy 19 month old girl woke up on July 3rd of this year with a swollen right knee. X-rays, blood work, you know the drill, showed nothing. An orthopedist listened to the symptoms..no weight on right foot….swollen knee.. wouldn't stand in morning..limping by the afternoon….and said..JRA!! We were floored. Another ortho..took an x-ray and saw a fracture..what a relief!!! It's an injury!! Shelby (our daughter) wore a cast for 3 weeks….her happy spirit started to change..we attributed it to the “healing” of her knee……The cast came off August 6th- we were so happy!!!! We were told that she would crawl..then pull up..then walk..like she learned to do at 13 months….But…this never happened…her knee stayed swollen….it stayed bent in the bent position in which it was casted in….for 4 weeks we waited for her to get movement back…she could only crawl and drag it behind her. on September 3rd, her left foot ankle and toes swelled up. We were sent to ped rheum..yes..it it JRA. Take Naproxen..do physical therapy..come back in a month. Her spirit improved on the Naproxen..but she can't put weight on the knee. We insisted on an MRI- showed swelling and fluid. By October 1 her other knee started to swell….her wrist..you all too sadly know the story. We went to a holistic md…did food allergy tests..minerals..told us to improve diet (eliminate wheat,dairy,sugar- we're halfway there)..looked at the yeast/fungus conenction..(doing supplements candex toe eliminate yeast, probiotics) and a supplement called Enhansa which is curcumin (tumeric) for imflammation….he put Lyme back on table for us ….She was positive on Band 41 (the WB that shows the 10 not the 3 bands)…so we sent her blood to Igenex and should hear anyday. We thought she was getting better…..can now sit on a tricycle and put her legs on ground….yesterday..went to a new ped rheum..she examined her (very roughly) and said that it is an EVERY JOINT!!!!!!!! We are devastated. She wants to start methotrexate..but..Shelby has never been vaccinated (we believe the vaccinations are damaging to the immune system..hahaha)…The docs want us to get her vaccines so they can give her these drugs to suppress her immune system. She's at daycare everyday…exposed to everything…..WHY Can't I find a doc to give us antibiotics???? Two rheumatologists told em that abx therapy is unproven. We're praying the Lyme comes back positive!!!! I'm ready to go to Mexico and get her antibiotics!!!!!!! Even if she were vaccinated..you can still get the measles, mumps, etc….the doc says “but it won't be as bad”….but..what about swine flu??? I can't see suprpessing her system now…we don't know what to do. I found you all through Dr mercola's website…he uses abx in Chicago..PLEASE..if anyone can help us….any pediatrician willing to give a abx. (no one can believe that docs write these scrips for anything all the time..but not this!)….I'm serious about Mexico…..Please..if anyone knows how to help us…..We're in Westchester County NY…will travel anywhere to get our girl better. So hard to see your child in pain. Everyday. (I've emailed Suzanne and she's been terrific!!!!!!! ) THANK YOU FOR LISTENING. Yvette evalon@aol.com
Yvette, I just deleted to double-up on the Personal Progress Threads and transferred your post here to the General Discussion area, as the other threads don't generate responses and are for creating a personal diary only. Hopefully others will see your post here and respond.
I've found your private message to me and will respond in a minute.
Peace, Maz
Yvette,
I am so sorry to hear of your baby's illness. I can only tell you from my own experience that AP does work for RA. Please hang on until someone else from this site responds to your questions. They can help you find a doctor who is experienced in AP treatment. My prayers are with you and your family.
Love, Judy
Evalon,
My heart goes out to you. I too am a mom with a child suffering from RA, although not so so young as yours, so can relate to your fierce desire to find help. You have found a great place to start on your road back. I'm still learning myself but we are seeing progress. There are many, many parents, spouses and adult children on this site advocating for loved ones and finding a way back to health so you are in good company. You will find a wealth of information on this site. Be forewarned there is a lot to learn and the road is slow but I believe it is “the” answer.
I might mention that Minocin is known to cause serious discoloration of the teeth in young children but in my opinion, a small price to pay considering the alternatives. Good luck and God Bless.
Kind Regards,
Tam
Yvette,
I'm so sorry to hear about your little one.
It sure sounds like Lyme to me so I'm glad you are pursuing that angle. My LLMD is in Missouri and before he became a Lyme specialist he was a pediatrician so definitely treats children. All LLMDs that I know of have long wait lists so I would be calling around and get on those lists while you're sorting through this.
I'll PM you his info.
Take care…..kim
Hi Evalon,
Welcome the the RBF. I'm so sorry to hear of your daughter's trials, I think she may be the youngest member of our little group. I would be so frightened if I was in your shoes, I hope that you can find an AP doctor soon. I can't see putting a toddler on a biologic and then sending her off to daycare everyday. But remember that antibiotics also come with side effects, e.g. tetracycline causes adult teeth to stain gray from the inside when given to young children. Minocycline is is the same family of abx, but I'm not sure if it causes the same thing. Maz or Kim or Cheryl would know more. But teeth can be fixed, altho expensively, some of the side effects of these heavy hitting drugs can be much more serious. You mentioned she is taking naproxen, make very sure that she is eating with that med, it can cause ulcers. Please try very hard to avoid prednisone if you can.
I can't believe she has it in every joint, at such an early stage, it's no wonder the doctors are throwing the heavy hitters at her. They're most likely worried about more than joint damage. One thing to keep in mind is that for the AP to work, the inflammation surrounding the joints has to decrease to let the abx into the joint. With her level of inflamation and massive joint involvement, it may take a strong anti-inflammatory AT FIRST, but that doesn't mean she'll have to take it forever. The fact that you have caught it so soon is in her favor. Without AP, she would have to take those stronger meds for a very long time, possibly her entire life. What AP will do is give her the chance to get better and no longer need to more dangerous meds. Best wishes,
linda
Hi Evalon
Thank God you have found roadback! your GP should prescribe the antibiotics, once you learn all about this treatment and print off information to show your doctor, you will be the one to educate them.
You may never need an AP doctor to administer clyndymincin IVs because those who start the antibiotics like minocyne early in their diagnosis soon get better.
God Bless you and your lovely baby.
Rosemary
Evalon,
One of the things you might consider doing is to call Dr. J. S. in Ida Grove, Iowa. He is a prince of a physician, and has longtime experience. He is always happy to speak with patients and/or their physicians.
Dr. Thomas McPherson Brown treated a JRA patient of Dr. S's many years ago and turned things around. Later, Dr. S learned about treating patients with Dr. B's protocols. He is one of the most respected AP physicians. I believe you can trust his advice. If you post a request for his telephone number, Maz or Cheryl will be able to give you his number and perhaps others.
Best of luck to you and your little one. I believe you are wise in your approach to finding help for your baby. The things your naturopath has you doing should also help with her recovery. If she has Lyme, then Maz and some others are knowledgeable of physicians that may be better for treating her than Dr. S.
God bless,
AF
There is a Dr. J that is a pediatrician in Connecticutt that has been treating children with Lyme for a long time. I think he should be high on your list. Unfortunately, due to your baby's age, you are going to find your choice of doctors limited. It's really sad that the doctors can turn so quickly to methotrexate and be so quick to dismiss the possibility of Lyme or other infectious causes. I know it's hard to swim against the current but you're going to have to. I don't have Dr. J's contact info but if you post on Lymenet http://www.lymenet.org in Seeking a Doctor someone will provide it to you. I know he has a waiting list so my advice would be to let them know that you can come at the drop of a hat. Also, if you can get in with Dr. S in Ida Grove sooner perhaps he would coordinate with him.
Yvette,
I am brand new to this bulletin board, as well as newly diagnosed with RA, but have heard wonderful things about doctors at the Northampton Wellness Associates in Northampton, MA. I have an appointment there myself next month and from what I hear, they have a lot of experience with AP.
Wishing you the best,
Phyllis
[user=1730]evalon[/user] wrote:
WHY Can't I find a doc to give us antibiotics????
Yvette–
I am so sorry to hear about your baby's condition. You are in my prayers.
Because I am unable to tolerate antibiotics, my LLMD has me on herbal alternatives. I take SPIRO for my Lyme, but think it would be difficult for your baby because of the taste. At my last visit I was put on grapefruit seed extract. I have read that it is the most powerful herbal antibiotic. I agree–I herx quite a bit–however, it is doing good because I no longer have my evening temperatures!!! My naturopath (not my LLMD) told me to increase slowly because of its potency. You might want to check with your naturopath about using grapefruit seed extract until you can get an abx.
Please keep us informed–
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Yvette,
Re: Possibility of your baby having celiac syndrome from something she's eating at home or the day care. There's a post on RBFBB last year discussing this might even trigger yeast (which you mentioned, I believe).
Re: Carlson Labs has specially made products for children, which medical doctors requested they create for such as autistic patients… and that taste good for compliance for children patients in particular.
Was looking for a specific link for products for children at Carlsons Labs. I have two of their thick booklets about their products (which children's specialists/physicians talked them into making years ago). Their products are made very pure, without the usual additives, etc., and taste good so that compliance isn't a problem with children's illnesses. If you are interested, I suggest your find Carlsons Laboratories link and get their 800 number. I called several years ago about something, and they asked me if I'd like to have the two (free) catalogs. I was interested, and they have been a godsend. They even have excellent probiotics that are resistant to certain types of antibiotics.
Was thinking if you have to treat your 19-month-old baby girl with any supplements, the Carlson's products might really appeal to you, so she doesn't spit it out.
Also, the thought occurred to me and am wondering if she might be consuming something (especially flour products with gluten in them, and even milk and sugar can be culprits) that may have irritated her gastrointestinal tract and created a “celiac syndrome” (not true celiac disease, with the same symptons). Dr. RK told me she takes most of her AP patients off gluten, sugar, and milk, and routinely sees improvement. Am thinking you might like to give some consideration to getting your baby gluten free to see if there's improvement. I understand this takes a good while to see results. This problem can create all sorts of referred pain. If you go to http://www.drrima.com, you may find a link to information on this subject. The web site has been re-worked the past year, and I haven't spent much time there recently.
Good luck to you,
AF
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