Help need answers 3 year old with JRA symptoms

[DAR]

can any one give an insite on this a friends 3 year old daughter, she has a swollen knee, stiff neck and she has entire digits that are swollen, she has had a rash on her stomach with pimples, the bad thing is she just moved with her parents to Sri Lanka a third world country, father in military, the health care there is so bad its like going backwards 100 years, the military now medflighted them to Singapore to have a doctor check her out, he is going to check for lymes but because they do not have lymes diease over there will he really know how to read the results, the little girl most likely picked up this or what ever from living in Wisconsin the last few years, her toenails are coming in thick, and she has bouts with diarrhea, the doctor in Singapore thinks she has a type of Juvenile arthritis, and has told the family that no antibiotic is available for this, I have told the mother about this site and she would love to get any information she could to help her daughter.

[Suzanne]

No matter where you live, it is hard to get antibiotics for a child diagnosed with JRA. Hopefully the doctors will think some type of infection is causing the joint pain and swelling and treat the infection. The mom needs to stress the pimples and diarrhea if she does not think it is autoimmune, even though the joint pain and swelling is scarier. Systemic JRA causes a rash, but it comes and goes with high fevers and I’ve never heard it described as pimples. It wouldn’t cause diarrhea that I know of.

Children can get arthritis from a virus, and this sounds it could be viral. Antibiotics would not help, but it does go away on its own when the virus clears. They could culture the pimples and a stool sample to see if there is anything viral, bacteria, or fungal.

I will be hoping for a bad virus that passes and is just a bad memory!

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

[Maz]

Hi DAR,

Fortunately, in many southeast Asian countries, it’s possible to get antibiotics over the counter. There is a pediatric Lyme specialist in CT who may be willing to consult via phone and my LLMD also does phone consults. As this family are overseas, they may be willing to consult via phone without having seen the child to at least provide guidance on what abx to try for her. She is too young for tetras, but plenty of other options.

Many tickborne diseases cause rashes and the other symptoms you’re describing, including Wisconsin ehrlichiosis:

http://www.sciencedaily.com/releases/2011/08/110803174745.htm

Obviously, none of us here can say if the child has Lyme or other tickborne diseases (TBDs), but there is nothing wrong is trying prophylactic abx to see if she responds and is probably the safer option than putting a tiny thing on immunosuppressant therapy, especially if all else has been ruled out.

If I can provide the LLMD contact info for them to try to get a phone consult, would be happy to send these to you for them. Also, although not a Lyme Literate MD, Dr. S. in Iowa will consult freely on abx therapy for patients abroad if needed.

[morninglory333]

Thanks for sharing this site and posting about my granddaughter DAR. I’m not sure if I’m posting this in the right place or if it can be connected to your post at all (copy & pasted to edit the original?) Anyway, I just wanted to add that she has had several different rashes in the past year. About 2-1/2 months ago she woke up with red spots all over her torso with raised white heads that looked just like an outbreak of chicken pox except that they never blistered and they went away in a few days- this was while in Wisconsin. Another rash she had a couple weeks later (in Sri Lanka) resembled hives or insect bites on her arms and legs that showed up overnight (she was also drenched in sweat which seems to be happening more & more often). This rash seemed to respond to the Sri Lanka equivalent to Benedryl so they originally thought it was an allergic reaction to mango. They are now ruling that out because she’s eaten it since without a problem- but they’re not sure if it was mosquito bites or not. She has been tested for the disease that mosquitoes commonly carrier there which was negative. Looking back I remember her limping down the stairs some mornings but the swollen knee wasn’t really noticed until she came down with this hive type rash 8 weeks ago. The knee has worsened to the point that she cannot straighten it and walks with a limp all the time- it’s the worst in the morning when she can’t even bear weight on it. The doctors are draining the fluid from the knee today and injecting steroids. She’s also having bone scans and testing a stool sample for parasites. Bone infection, lupus and leukemia have been ruled out by blood tests so far. She came down with a different rash yesterday on her torso that was not raised at all- just red spots. This was followed shortly after with her middle finger swelling up. Another symptom I remember was her getting very dazed one morning and nearly passing out- she snapped right out of it when we gave her a drink of water. Not sure if that could be related at all but at this point I’m trying to put all the “dots” out there and hopefully some connections can be made. Another “dot”= a swollen dark red middle toe was the very first sign that I remember of something odd going on- I think it’s been swollen around 6 months. Thanks for all your help!

[lynnie_sydney]

Yes you’re posting in the right place…just keep responding in this thread (topic) unless you want to start a new one. Your first 3 posts will need moderator approval before being visible on open forum so may not come up straight away (spam preventive measure). After that, they’ll come straight up. Am sure you’ll receive some more perspectives…. and Maz has given you some options to consider in her post above.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[A Friend]

@DAR wrote:

can any one give an insite on this a friends 3 year old daughter, she has a swollen knee, stiff neck and she has entire digits that are swollen, she has had a rash on her stomach with pimples, the bad thing is she just moved with her parents to Sri Lanka a third world country, father in military, the health care there is so bad its like going backwards 100 years, the military now medflighted them to Singapore to have a doctor check her out, he is going to check for lymes but because they do not have lymes diease over there will he really know how to read the results, the little girl most likely picked up this or what ever from living in Wisconsin the last few years, her toenails are coming in thick, and she has bouts with diarrhea, the doctor in Singapore thinks she has a type of Juvenile arthritis, and has told the family that no antibiotic is available for this, I have told the mother about this site and she would love to get any information she could to help her daughter.

DAR, these questions came to my own mind after reading your post above?
Was the child healthy before moving to Sri Lanka? Did she have any reactions after any vaccinations?
Did she have any new vaccines, etc. before moving from Wisconsin to there?
Has she been eating any suspect foods? or had any new hazardous exposures — environment or otherwise?

It could be helpful if the doctor treating her (or if some of her family) are open to contacting Dr. S in Iowa. Maz could help with getting this contact information for/to them. Dr. S is so kind and generous in consulting with patients/doctors in and out of the country. [ I personally was involved with the brother of a patient who was given my contact information by a physician in another state. I talked with the brother who then called me and I suggested the sister’s physician contact Dr. S. The brother contacted me after that, from time to time after they had received info and a plan, and her progress was remarkable, as his sister had become bedfast prior to Dr. S getting involved.

Hopeful for a good outcome. Prayers for this little one and her family.

AF

[BG]

DAR,

Have blood cultures and blood smears been done in addition to other tests for infections?

Because of the rash and other symptoms described, I’m suspecting a strep or staph infection that’s become systemic, maybe in addition to one or more other bacterial, viral, or protozoal infections.

I’m also questioning whether the child might have undiagnosed celiac disease of childhood.

Barb

[Maz]

Morningglory, it’s great you managed to join us in the midst of what must be a very upsetting time while posted abroad. Big kudos to you for just having the fortitude to log on and start researching.

Tick-borne disease can be highly immunosuppressive and can remain relatively latent in healthy persons until some triggering infection or other insult to immunity comes along (shock, stress, surgery, acute infection of some type, etc). Many Lyme patients deal with environmental sensitivities (food allergies or multiple chemical sensitivity, for e.g.) and, if you get a chance to read The New Arthritis Breakthrough, by Henry Scammell (digital e-book versions available), you’ll quickly learn that Brown actually described rheumatic diseases as “bacterial allergies.” Literally, the rheumatic patient’s body becomes sensitive/allergic to bacterial toxins. This is why he’d often manage hypersensitive patients’ symptoms with anti-histamines.

It’s really important to get as informed as possible about the treatment, because it’s a treatment for “upstream swimmers.” Conventional medicine recognizes there is probably an infectious or other environmental trigger for rheumatic diseases, but that once the “autoimmune” process is initiated, the only way to control it is by administering immunosuppressant therapies. We’re here to tell you that there is an alternative option – long-term antibiotic therapy – and we’ve had a number of JIA/JRA patients here who are toddlers up through teens, and they’re done remarkably well on the treatment (like Suzanne’s daughter and others, too). Immune supportive things may also be necessary, however, like dietary modifications and definitely including probiotics.

Initially ruling out other diagnoses and acute infections are imperative at this stage and you’re probably in fantastic hands with the docs in Malaysia and may even get a more comprehensive infectious disease work-up than one would get in the west. All the suggestions above are ones to consider…multiple vaccinations needed for childhood and travel can contribute to suppressing immune function. I have also traveled extensively as a child in the far east and aware of what is involved in this as well as the various parasitic and other infections to which folk from the west are not accustomed. If your child has been exposed to tick-borne infections, multiple vaccinations and foreign bugs, then these factors alone bolster forming a case for antibiotic therapy once a thorough evaluation has been run and (if) a rheumatic disease is diagnosed.

Worth bearing in mind that if a person is immunocompromised, then antibody testing (like the standard tests for Lyme) are near worthless…a struggling immune system can’t produce enough antibody to the infection to show up on the test. This is sometimes why the sickest rheumatic patients get passed over on a Lyme diagnosis.

Hang in there, Mom. Once you get a better picture of what is going on, if you need further resources to pursue the treatment, we’d be happy to provide physician info to either fly home to begin treatment or to hopefully get started out there in consultation with a US doc by phone/email.

[morninglory333]

@A Friend wrote:

@DAR wrote:

can any one give an insite on this a friends 3 year old daughter, she has a swollen knee, stiff neck and she has entire digits that are swollen, she has had a rash on her stomach with pimples, the bad thing is she just moved with her parents to Sri Lanka a third world country, father in military, the health care there is so bad its like going backwards 100 years, the military now medflighted them to Singapore to have a doctor check her out, he is going to check for lymes but because they do not have lymes diease over there will he really know how to read the results, the little girl most likely picked up this or what ever from living in Wisconsin the last few years, her toenails are coming in thick, and she has bouts with diarrhea, the doctor in Singapore thinks she has a type of Juvenile arthritis, and has told the family that no antibiotic is available for this, I have told the mother about this site and she would love to get any information she could to help her daughter.

DAR, these questions came to my own mind after reading your post above?
Was the child healthy before moving to Sri Lanka? Did she have any reactions after any vaccinations?
Did she have any new vaccines, etc. before moving from Wisconsin to there?
Has she been eating any suspect foods? or had any new hazardous exposures — environment or otherwise?

It could be helpful if the doctor treating her (or if some of her family) are open to contacting Dr. S in Iowa. Maz could help with getting this contact information for/to them. Dr. S is so kind and generous in consulting with patients/doctors in and out of the country. [ I personally was involved with the brother of a patient who was given my contact information by a physician in another state. I talked with the brother who then called me and I suggested the sister’s physician contact Dr. S. The brother contacted me after that, from time to time after they had received info and a plan, and her progress was remarkable, as his sister had become bedfast prior to Dr. S getting involved.

Hopeful for a good outcome. Prayers for this little one and her family.

AF

Hello AF and thanks for your concern for my g-daughter. I’ll answer the questions as best I can and hopefully her mom can get on the forum soon and fill in any blanks. I have outlined a lot of her history in my first posted reply regarding the timeline of symptoms I feel may be connected. I believe the first thing may have been the swollen middle toe which I would guess started several months before they left for Sri Lanka- there had been no changes in diet, environment etc. that we could connect. Doctors were puzzled & didn’t think much of it since it didn’t seem to bother her at all. She also had random night sweats, rashes, diarrhea, etc. for several months before they moved (they didn’t all start simultaneously though). I’m almost positive there were no reactions to vaccinations as her mom watched that closely & only allowed one vaccination at a time for that very reason. The only food reaction that I can recall (hives in this case) were eggs which they pretty much eliminated from her diet early on. She ate really well (a lot for her size actually) yet stayed small according to the doctors’ charts. She ate mainly fruits & veggies at first and as she got older more grains were introduced to her diet (oatmeal, whole wheat or gluten free bread, pancakes etc. but very little sweets or refined flour) so I suppose it’s possible there’s some connection to grains/gluten. I know they have eaten a lot of curry in Sri Lanka where the symptoms seem to be escalating but I have no clue what’s in curry. Thank you for the information on the doctor in Iowa- that could be very helpful in this situation and will definitely pass the information on to my daughter.

[morninglory333]

@Maz wrote:

Hi DAR,

Fortunately, in many southeast Asian countries, it’s possible to get antibiotics over the counter. There is a pediatric Lyme specialist in CT who may be willing to consult via phone and my LLMD also does phone consults. As this family are overseas, they may be willing to consult via phone without having seen the child to at least provide guidance on what abx to try for her. She is too young for tetras, but plenty of other options.

Many tickborne diseases cause rashes and the other symptoms you’re describing, including Wisconsin ehrlichiosis:

http://www.sciencedaily.com/releases/2011/08/110803174745.htm

Obviously, none of us here can say if the child has Lyme or other tickborne diseases (TBDs), but there is nothing wrong is trying prophylactic abx to see if she responds and is probably the safer option than putting a tiny thing on immunosuppressant therapy, especially if all else has been ruled out.

If I can provide the LLMD contact info for them to try to get a phone consult, would be happy to send these to you for them. Also, although not a Lyme Literate MD, Dr. S. in Iowa will consult freely on abx therapy for patients abroad if needed.

Thank you for the information regarding my granddaughter’s symptoms Maz- Any contact information for doctors who would be willing to consult with my daughter over the phone would be really appreciated!

[morninglory333]

Thank you for the information regarding my granddaughter’s symptoms Maz- Any contact information for doctors who would be willing to consult with my daughter over the phone would be really appreciated!
Morninglory

@Maz wrote:

Hi DAR,

Fortunately, in many southeast Asian countries, it’s possible to get antibiotics over the counter. There is a pediatric Lyme specialist in CT who may be willing to consult via phone and my LLMD also does phone consults. As this family are overseas, they may be willing to consult via phone without having seen the child to at least provide guidance on what abx to try for her. She is too young for tetras, but plenty of other options.

Many tickborne diseases cause rashes and the other symptoms you’re describing, including Wisconsin ehrlichiosis:

http://www.sciencedaily.com/releases/2011/08/110803174745.htm

Obviously, none of us here can say if the child has Lyme or other tickborne diseases (TBDs), but there is nothing wrong is trying prophylactic abx to see if she responds and is probably the safer option than putting a tiny thing on immunosuppressant therapy, especially if all else has been ruled out.

If I can provide the LLMD contact info for them to try to get a phone consult, would be happy to send these to you for them. Also, although not a Lyme Literate MD, Dr. S. in Iowa will consult freely on abx therapy for patients abroad if needed.

[Suzanne]

@morninglory333 wrote:

Anyway, I just wanted to add that she has had several different rashes in the past year. Another rash she had a couple weeks later (in Sri Lanka) resembled hives or insect bites on her arms and legs that showed up overnight She’s also having bone scans and testing a stool sample for parasites. Bone infection, lupus and leukemia have been ruled out by blood tests so far. She came down with a different rash yesterday on her torso that was not raised at all- just red spots. Another “dot”= a swollen dark red middle toe was the very first sign that I remember of something odd going on- I think it’s been swollen around 6 months. Thanks for all your help!

This is the first time in nearly a decade of reading children’s stories that I have seen one with so much in common with my daughter. Especially the toe.

Her tests were also negative, but they did treat for an infection because of how she presented. My daughter never had a knee involved, though. The response to the steroids will give you some clues, I think.

It is very hard for a little one to go through so much testing and so many procedures. Hard on the child and the parents. It is also hard to get anyone to agree to anything outside the mainstream when it is a very young child. I hope that something declares itself beyond a shadow of a doubt so she can begin the right therapy.

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

[Maz]

@morninglory333 wrote:

Thank you for the information regarding my granddaughter’s symptoms Maz- Any contact information for doctors who would be willing to consult with my daughter over the phone would be really appreciated!
Morninglory

Hi Morninglory,

Have sent you a PM (private message) with a list of pediatric docs as per above. Just click above where it says (1 new message) to retrieve it. You have posted 3 times on the open forum, so should be able to send/receive PMs now. If you have any trouble, let me know and we can move to email. 🙂

[Author]

Posts