lyme treatment for a 5 year old

[Patti D]

Hi all,
I just got an email from a friend who has a 5 yr. old niece diagnosed with lyme. Severe hip pain. Her doctor prescribed 3 weeks of amoxicillin.
I am sorry I am asking as I too have lyme but don't know too much about childrens protocol.
Any suggestions helpful. I told her about doxy but am not sure what else to advise.
Thanks everyone in advance>

Patti

[Maz]

[user=287]Patti D[/user] wrote:

I just got an email from a friend who has a 5 yr. old niece diagnosed with lyme. Severe hip pain. Her doctor prescribed 3 weeks of amoxicillin.
I am sorry I am asking as I too have lyme but don't know too much about childrens protocol.
Any suggestions helpful. I told her about doxy but am not sure what else to advise.

Hi Patti,

So sorry to hear about this little girl with Lyme. 🙁 If it's in a large joint, it's likely pretty entrenched. Three weeks of amoxy probably isn't enough. To give you an idea, when my daughter had her tick bite last year, my LLMD prescribed her 2 months of doxy right off the bat and told her to come back if she was noticing any symptoms. We got her treatment within a few days, so she's been okay so far.

Doxy really isn't a good choice for an under 8, nor any of the tetras, as they stain growing teeth. Amoxy is by far the better choice and is usually a first line treatment, but has she been assessed for coinfections? If these aren't treated, it could pose a larger problem in the longterm.

Any chance this Mom could get her child to Kim's doc, Dr. C for a full work-up?  With children so small it isn't worth risking not getting appropriate care with an LLMD. Unfortunately, the ones willing/able to treat pediatric cases are few and far between, but fortunately Kim's doc will take kids.

Hope your poor tooth is feeling a bit better, Patti, and all the best for your big week next week!!

Peace, Maz

[Suzanne]

Even with skeptical drs. (and me not being 100% sold on a Lyme dx), my daughter was rx'd a month of amox.  I agree three weeks is too short and I'm pretty sure a month would be Standard of Care.

Had there been any improvement, I think they would have gone longer, so make sure anything is documented.

Hip pain in children can be a sign of other things they would treat with abx – stronger abx than amox.   Do you know if there were other dx's they ruled out? 

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

[Patti D]

Thanks Maz ,
I left my neighbor a voice mail to call so hopefully she will. We are having a major snowstorm here so she may be busy shoveling out. She did mention another virus in addition to lyme so maybe the doctor is educated??? Doubt it though.
There is a link on the RB board about I think your doctor, Dr. T from Boston using doxy for a 5 yr old with juvenile arthritis. The joint damage was more of a concern that the teeth enamel being discolored.Apparently the young girl had great success with abx and plays sports and leads a normal life which is awesome.
Kims doctor is located in what state? These folks are from northern Wisconsin and I believe have a brand new baby which may put them in a position to not travel.
Geeze, I hate to hear of all of these sweet little kids getting so sick, here on the board or anywhere else too.
Susanne,
I am sorry about your daughter getting lyme too. I am sending well wishes your way! Hopefully you will get to the bottom of this soon and get her on the road back to good health!

I survived the root canal and feel great. No more pain even without the steroids he really thought I needed. Of course to this day, I think my lyme went through the roof because of the prednisone so now I am considered a non-compliant patient because I will do anything pretty much not to take that nasty drug. Would love to see what the doctors put in my medical chart…ha-ha. Actually I would love to see what the medical community puts in most of our charts! We are a handful to be reckoned with no doubt!

Peace!
Patti

[Maz]

[user=287]Patti D[/user] wrote:

There is a link on the RB board about I think your doctor, Dr. T from Boston using doxy for a 5 yr old with juvenile arthritis. The joint damage was more of a concern that the teeth enamel being discolored.Apparently the young girl had great success with abx and plays sports and leads a normal life which is awesome.

Kims doctor is located in what state? These folks are from northern Wisconsin and I believe have a brand new baby which may put them in a position to not travel.

Hi Patti,

So glad you're feeling more like your old self after getting your tooth sorted. 😀

Dr T is the Boston AP doctor who ran the MIRA and Mino in Early Diffuse Sclero Trials, but I haven't been to see him, as I see a LLMD. Although Dr T used to treat kids, he no longer accepts anyone under 15….go figure…but who knows what pressures these docs experience from their peers for treating outside of standard guidelines for care of pediatric cases? 🙁

I agree that potential teeth staining from the tetracyclines is preferable to putting children on heavy immunosuppressive medication and would be quite happy to pay for dental veneers if it came down to it for a child of mine…it's the old risk/benefit ratio thing. Hmmmm…veneers or joint replacements? Let's see…  

Kim's doc, Dr C, is in Springfield, MO, though you may need to check with her, as he just recently moved offices. May still be in Springfield, but I don't have his new address yet. This would probably be a good 10 hour drive, so understand why it might be difficult with a new baby in tow. There are a couple LLMDs listed for WI, though, if you want that list? They'd have to check if these docs took pediatric cases, though.

Was this little girl CDC positive for Lyme?

Peace, Maz

 

[Kim]

Hey Patti,

Dr. C. has moved his practice to Columbia, Missouri.  How about Trudi's LLMD in Wisconsin?  Trudi seems pleased and Maria just started seeing him and she seems pleased too.

So happy to hear your dental work seems to be behind you now.

Take care…..kim

[Suzanne]

[user=27]Maz[/user] wrote:

  Although Dr T used to treat kids, he no longer accepts anyone under 15….go figure…but who knows what pressures these docs experience from their peers for treating outside of standard guidelines for care of pediatric cases? 🙁

 

I think it is lawyers, not peers.

My understanding was also that it was not that he was treating outside standard guidelines, it was that he was not a pediatrician and his institution made him stop seeing peds patients for that reason.

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

[Patti D]

Ok ,
finally talked to my neighbor today in regards to her niece. She is Elisa positive and lives far north in Wisconsin. The family had a horrible year of tick bites and dad had been on antibiotics at least three times for lyme.
In addition to lyme she has been diagnosed with “toxic synovitis” which is a reactive arthritis that affects the hips and is suposed to run it's course in 5-7 days.
Poor Sydney is past one week and still can barely walk so Mom wants to nip this in the bud.
I already told her about getting a CBC, Sed rate And CRP done as well as seeing a llmd for follow up.
As mentioned she was only prescribed 3 weeks of amoxicillin. She has only seen a GP and is willing to see a specialist. What tests should she ask for for co-infection testing. I gave my lyme book away to someone who was really sick with lyme and now I have no references.
My question is does anyone know any llmds that take pediatrics up in the Twin cities, Minneapolis/St. Paul? She is closer to that city than anything. She also is about two hours from Mayo Clinic.

thanks everyone. She has a follow up with the GP on Monday so I need to call my neighbor tomorrow.
As always, I am so grateful for the help you give to so many. Maz & Kim & Trudi, I know you will be the ones to come through for Sydney.

Patti

[JBJBJB]

[user=287]Patti D[/user] wrote:

so now I am considered a non-compliant patient because I will do anything pretty much not to take that nasty drug. Would love to see what the doctors put in my medical chart…ha-ha. Peace!
Patti

From my health problems I realize I have to take control of what medicine I take, which one I will not take. There are tons of doctors, so if one doc does not want to treat me because I refuse to take his Rx, I will look for others. I do my research first before I put those medicine in my mouth.

I refused to have my lungs CT Scanned 4 times a year by a clinical professor. I told him I would not want to do it. He said, “Unfortunately I won't be able to treat you without the CT scans.”  I told him, “FINE” I will find some one who can treat me without it.  As you know at least 2 % of lung cancers are due to CT Scans.

When my rheumatologist insist to put me on cytoxan, I kissed him goodbye. That week, I found this board. I won't take these toxic medicine. It can only trash me further.

So, Patti, you and I are those few tough and hard to chew cookies.
:blush:
: JB

 

[Maz]

[user=287]Patti D[/user] wrote:

What tests should she ask for for co-infection testing.

My question is does anyone know any llmds that take pediatrics up in the Twin cities, Minneapolis/St. Paul? She is closer to that city than anything. She also is about two hours from Mayo Clinic.

Patti, I'll send the Minnesota LLMD list in a PM to you. I'm not sure which ones would accept pediatric cases, but there is one doc listed as a CAM doc who is a family physician, so that is a possibility. Just don't know how Lyme Literate she may be. The Infectious Disease docs I'd be wary of unless they check out okay with other Lymies in that state. There are support groups by state for Lyme on Yahoogroups where these kinds of questions can be put to others in MN. Would also stay well away from Mayo for Lyme. 🙁

That is a good thing the child is ELISA positive, as there is none of this messing around that needs to be done with specialised testing. The problems that can arise are if the child heads into or is in a chronic state (which sounds like a possibility if she wasn't treated immediately after her bites), which the mainstream doesn't recognize. This is when a good LLMD would be optimal.

As for the most common Lyme coinfections in Wisconsin, your best bet is to give this lady the IGeneX phone number on Monday am (found here: http://www.IGeneX.com) , so she can put a call through to this lab and ask for specifics on what tests she should have run according to her region. Different coinfections seem to be more indigenous to various regions of the US. Here is a link to one study that may help. Erhlichiosis (HGE) seems to be a biggy in WI as well as babesiosis. I'd personally also want to check bartonella.

http://www.ncbi.nlm.nih.gov/pubmed/11317244

Thing is, Patti, having coinfection testing by a standard lab or even with IGeneX, these tests aren't 100%. LLMDs will go by symptoms and total clinical picture, because not to treat on the basis of an inaccurate test is more risky than treating prophylactically. The sickest patients are just assumed to be coinfected, in essence, and treated appropriately by an LLMD.

Here's another link:

http://dhs.wi.gov/communicable/TickBorne/index.htm

Hope something here might help. Kim or other Lymies may be able to supply more info for you to help your friend. Really hope this little girl gets the right care asap. You're such a good friend!

Peace, Maz

 

 

[Suzanne]

[user=287]Patti D[/user] wrote:

In addition to lyme she has been diagnosed with “toxic synovitis” which is a reactive arthritis that affects the hips and is suposed to run it's course in 5-7 days.

Two dx's would be a red flag for me – the hip is the main symptom, yet they are giving it a benign dx?

http://www.nlm.nih.gov/medlineplus/ency/article/000981.htm

“Toxic synovitis is diagnosed when other, more serious conditions have been ruled out, such as:

• Septic hip[/*:1e7w66hp]
• Slipped capital femoral epiphysis[/*:1e7w66hp]
• Legg-Calve-Perthes disease”[/*:1e7w66hp]

I would be concerned about septic hip and that infection maybe causing the positive Elisa.  Three weeks of amox would not treat septic hip:

http://www.eorthopod.com/node/10944

“Antibiotic therapy is the first step in treatment. The type of antibiotic given depends on which bacteria are present. Results are best if antibiotics are started as soon as possible after the diagnosis of a joint infection. First, medication is given intravenously (directly into blood stream) for about seven days and then orally (pills taken by mouth) for another two or three weeks.”

I would think they would be treating the hip more aggressively.

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

[Kim]

Hey Patti,

Gosh, this story is so sad. 

As far as testing for co-infections, my LLMD doesn't bother because he says those tests are not that accurate (even Igenex) and a waste of money.  He treats assuming that they are part of the infection.  As an adult you can sort of deduce what co-infections you have by your symptoms and then the response to certain abx, but with a 5 year old I doubt you could do that.

You are the perfect person to help this family sift through the Lyme insanity and get this baby treated.

Take care…….kim

[Patti D]

JB,
You are right ! If we aren't in the drivers seat for our own healthcare I am convinced it would be difficult to get well. I am so glad you found this board too and also glad no cytoxan ever crossed into your body. As an old chemo nurse I can tell you, the side effects weren't pretty.

Suzanne & Maz & Kim
The childs family doctor was more concerned about the toxic synovitis that the lyme. Their GP said the hip issue is viral related not bacterial. There is no fever. They took an xray of both hips which is also odd to me as septic arthritis is usually in one joint not two which tells me it is semetrical which points to potential for AI issue as a result of untreated lyme. They believe a summer infection of lyme which gave the bug several months to settle in the large joints.
Based on what I read they should have an ultrasound of those joints, more blood testing and more specific antibiotic protocol based on test results.
All of this done by an LLMD so Maz, that doctor list would be great. Also thanks for the heads up on Mayo. I kind of figured that based on their website info on lyme. Too bad as they are located in a hot spot for lyme. So much for following”the crowd”
I love my neighbor( Kim neighbor at the lake) and know how many of her family members have been treated for lyme. There is some other issues here as the father has been treated several times for lyme and always shakes it so he probably thinks his daughter can too which of course is what we are hoping for. But because of what i went through, I have everyone on high alert with what can happen which I guess is turning out to be a blessing and I am able to spead the word to prevent others from writing this off.

For this opportunity, I am grateful so dear sweet little Sydney who I might add is a tough little girl can get the right treatment first time through.
Thanks all!
Maz, I will give her the Igenex lab info too.

Stay warm. Dang it is cold here. What I wouldn't do for a little warm weather. You ladies with the sauna can at least pretend drink fruity drinks(lemon- olive oil no doubt ha) turn on some beach music and visualize. The good news is we have sunshine today !!!!

Patti

[Trudi]

[user=287]Patti D[/user] wrote:

I love my neighbor( Kim neighbor at the lake) and know how many of her family members have been treated for lyme.

Patti–

Is she the neighbor who took our picture?

Maz & Kim & Trudi, I know you will be the ones to come through for Sydney.

I wish I could be of some help.  Aside from Dr. M, I'm not really familiar with any other LLMD.  BTW, my husband was at a pharmacy and the owner told him that Dr. M is the best in the state.  Always like to hear that about someone I'm seeing.

Good luck to Sydney's parents in finding someone off Maz' list to treat their daughter.  As you know, it is not an easy cure–although we know that the young can recover quicker.

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?

[Patti D]

Yeah Trudi
She is the one right next door. It is her niece. She is from Eau Claire originally which as you know is a tick infested nightmare so to say.
Maz gave me a list and I did tell her about your doctor. The name of your doctor & address I gave away too to the man with lyme. Can you PM his name & number again. So sorry but I try to pass on all of the stuff I can and then of course when I need the information again, It is already gone. I need to save stuff better but between the two houses, things getlost. I lost your number too so on your pm could you leave that too. Thanks friend!

Are you staying warm! Dang it is cold isn't it.

Patti

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