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» LymeNet Flash » Questions and Discussion » Medical Questions » I'm getting very frustrated trying to help my 3yo son

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Author Topic: I'm getting very frustrated trying to help my 3yo son
urpaige
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About five weeks ago I removed a tick from his back. Within two weeks, he had two bulls eye rashes. One at the bite mark and one below to the right.

I wasn't familiar with Lymes, and waited another week or so before taking a picture and taking him to the doctor.

My Mom found some swollen lymph nodes in his shoulders and neck and that got me worried, as well as his complaints that his knees hurt.

He also complained about his neck hurting.

He has woken up with the croup cough, and a 104 degree temp since then, and also had an allergic reaction to the Amoxycillian, and was switched to Bioxin 10 days in.

Today was day 19 of the treatment. He was lathargic and wanted to be held all day last Sunday but seemed to feel pretty good M, T, W and most of Th.

Then Friday, he was looking a little peeked, and running about 99.8 all day long.

Today, (Saturday) he was 100.1 when he got up. I fixed a nice breakfast bacon, eggs, biscuits, and cut up cantalope (he normally loves).

He ate 1/2 of the biscuit and started saying "ouch, ouch, ouch" and reaching for his back.

He got out of his chair and wanted to lay with his blanket after that and wasn't interested in eating. I asked if it was the bones (spine) or muscles and he said the bones hurt.

This went on for a few hours and I finally took him to the ER to be checked out and have some blood work done.

I'm in disbelief, that the ER doctor basically dismissed him as having a "summer virus" after a urine test to rule out a bladder infection.

I gave the doctor all of the info on the Lymes, and he told me we couldn't even be sure my son had that... blah, blah, blah.

Why, wouldn't/don't some medical "professionals" know about lymes?? I just don't get it. Does anyone know if the back hurting could be related? I've got a perscription for 28 days, but am concerned it's not going to be enough...

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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Hoosiers51
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If your son hadn't had bullseye rashes and gotten bitten by a tick recently, maybe it is acceptable for a physician to suggest a flu......

But the doc not addressing the Lyme is insane! Shame on him! You are completely right and being a good Mom by pursuing this.

Keep in mind that a lot of doctors, because of what they were taught, believe that no one should need more than a month to be cured of Lyme, but a lot of people will tell you, that simply isn't true! (Besides...did they test him for coinfections? How do they know those aren't bugging him?)

If your son is acting not like himself, and is in any pain, he certainly needs treatment! You don't want to chance it.

I would go to the "Finding a Doctor"s section under "Questions and Discussion".....use that as a tool, and take him to a doctor that will take his situation seriously!

It absolutely needs to be treated as soon as possible. He will probably be just fine as long as he gets treatment in the beginning of this!!!!

Usually they recommend Doxycycline for after tick bites, as an intial treatment, but it might be different for children....so don't take my word!

Whatever you do, do not let him have a lapse in treatment! I don't know how long they recommend children stay on the treatment though, but try not to stop-start the meds.

Also, look at Igenex.com....they are the most reliable in testing for the coinfections like babesia, bartonella, erlichia. If he happened to pick up any of those from the tick too, you want to find those right away and treat them!

Igenex will mail you a kit, then your doctor must write the order to get the blood drawn. I am SURE he has Lyme, but this is moreso for coinfections.

A lot of regular doctors aren't very aware of those coinfections, so keep that in mind. (unless you find a Lyme Literate doctor)

I know that sounds overwhelming, but it is for the best!

You are lucky that you have pictures of the rash and found it early. That should help him! A lot of children don't ever remember getting bit.

Taking this very seriously now will prevent problems down the road. Best of luck to you, and please find him a Lyme Literate doctor!

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hcconn22
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Back pain is a top symptom of untreated Lyme.

Also ticks can transmit several parasitic infections at the same time-- babesia, bartonolla and ehrlichiosis, STARI, RMSF. Search this board or google Lyme Disease co-infections. These can be equal to or worse than lyme.

Dont want to scare you but get to a doctor who knows and treats lyme.

I know I had unbelievable back pain for 3 months until Dx and treatment. Used to be an elite swimmer that never had pain before Lyme.

I would not expect great deal of support from a standard doctor with regard to Lyme.

Your son will most likely need several months - I might say 2-3 months of Zithromax. This and Doxycycling are the most common early Lyme treatments that seem to work. EARLY being the key.

You most likely will need to find a Lyme Literate Medical Doctor- who treats kids. I only know of one-- Dr J in CT. You can ask others on this board for names.

PLEASE GET AND READ THE BOOK- Cure Unknown by Pam Weintraub. It just came out a few weeks ago and will bring you up to speed on all the problems, controversy and issues with Lyme. Lyme if untreated can be a very serious disease.

Most of us have been passed on by the Main Street medical community when it comes to Dx and treatment of Lyme.

The good news is that children seem to respond better to treatment than adults. Especially early.

Both myself, my wife and 18yr old son have suffered with Lyme. I post to new people here to try to short cut the run around that many new people get when the suspect or get dx with Lyme.

Q- did your son have a blood test i.e. Elisa or Western Blot to test for Lyme Disease.

Take care and use this forum to learn and ask questions-- there are a lot of knowledgeable people here that can help-- but get and read Pam's book-- then you'll get Lyme.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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Hoosiers51
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I have something else I feel like I should bring up too....

You know your son best. If he is not the type to complain or whine much, take anything he says seriously (sorry...I keep using that word! Can't think of anything else).

It is easier to dismiss children's symptoms, I think...whether that be as a parent or doctor. Sometimes adults think they know best.

Sometimes children actually complain less than adults, so it is important to listen to them. As a child, I used to talk about my symptoms, and no one would ever listen to me!

So just pay close attention to him, as I'm sure you already are....

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urpaige
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Thank you both for your quick replies.

Honestly, I am sooo overwhelmed.

My son has never been sick or needed to go to the doctor until now, and suddenly, I'm trying to figure out how I can get him to a doctor hours and hours away.

I'm Mom to five little ones under eight and just don't know how this will happen. It really seems so surreal.

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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groovy2
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Hi Urpaige--

A Bullseye bruise is as close to For Sure
as it gets -

Early and Proper treatment is what is
MOST effective -

Early treatment changes this from a Disaster
to Not a big deal --

Personally I would not take the chance-

Dont be scared of Antibiotics -No Reason-

I agree with what the folks above
have said Also -

Best of Luck --Jay--

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urpaige
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Hoosiers51:
I'm listening very closely to him. He actually has an expressive speech delay so if he is telling me "ouch ack urts" it really means something because he doesn't just talk... I feel sick over this.

[ 29. June 2008, 11:08 PM: Message edited by: urpaige ]

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Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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urpaige
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Any idea how much antibiotic treatment should I be trying to get?

Initially the pedi. perscribed 21 days, but I called and asked to extend it which he agreed to do.

I'm also supplementing with Garlic and good vitamins, and Elderberry concentrate.

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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NJLyme82
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My best advice to you is to get to an LLMD prompmtly!

You won't get adequate treatment from the mainstream medical system. They just don't understand the seriousness and complexity of this illness. Your son could get worse and could become seriously ill if not treated adequately. There could be grave long term consequences if this is not treated properly!

My guess is that if he's still experiencing symptoms toward the end of his treatment he needs more treatment. But I'm not an MD. You need to find an LLMD right away (see seeking doctor section).

I was a kid with Lyme once. My parents knew that somethign wasn't right. Doctor's brushed us off until I developed facial paralysis. By the way I was treated with a few weeks of antibiotics and later developed symptoms that persist until today.

My best advice is to keep an eye on your son for years to come. We still don't know for sure what the long term effects of Lyme are and what it can do o you years down the road.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

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bettyg
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to all,


i sent her kids llmds for:

CONN., NJ, AND WASH. DC!!!


so she has this info!

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urpaige
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bettyg:
Yes, I do have this info as of yesterday, and thank you so much. I just don't have any idea how I'm getting there...but I'll work on it.

[ 29. June 2008, 10:13 PM: Message edited by: urpaige ]

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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hshbmom
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I see you have 5 children under 8...


It looks like you officialy qualify for MOMYS...


Mothers Of Multiple Young Siblings


Have you seen this website?


http://momys.com/


I'm sorry you've had to come to this website, but you're in good company.


Do you have a physician or a health care professional who knows you and trusts you?


It sounds like your child needs help asap, even if you have to go to several doctors or walk-in clinics until you find someone who'll take this illness seriously. Lyme is nothing to dismiss.


You may want to videotape your son when he's complaining or sick, so the physicians will realize you're not just some whacko mom.


Don't get frustrated, it will only complicate your life. You need a plan. Take it one step at a time and you'll accomplish everything you must.


Be aware of possible exposure to yourself, your other children, and husband...and pets. Many times when you begin learning the symptoms of this disease, you notice others in your family have symptoms too. Entire families have contracted this disease, but may have different symptoms.

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urpaige
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hshbmom:


Thank you for this advice. I'm aiming at a plan, but a few minutes of frustration did get in after my wasted trip to the ER yesterday in regards to the back or "bone" pain as my son said. I was lucky enough to get an Infectious Disease doctor on the phone yesterday (he returned my call from the paging system) and he recommended I have him seen for bloodwork with the new sx while on antibiotics. The er doc did a urine test to rule out bladder infection and sent us on our way with a "summer virus" dx.

I am actually a member of MOMYS and tried to get on there a day or so ago but the server was being upgraded. I don't have lots of free time, but have been on the site a little in the past year. Great site by the way, are you a member?

My child's pedi is wonderful so far. I hope this continues. I've known him since before children.

I'm keeping an eye on all the kids. It's really hard though as we live in a rural area with woods around about 60% of our house and fields outside of the lawn around the rest. Cows just next door and we see deer at least once or twice a week in our fields.

I really appreciate all of the advice and support.

[ 29. June 2008, 10:15 PM: Message edited by: urpaige ]

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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roro
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Your son has lyme, and it sounds like its already disseminated to his joints and spine. This is VERY serious and you need to get the appropriate treatment or he will suffer permanent neurological damage.

All the symptoms you describe fit lyme to a T. It is inaccurate to rely on bloodtests, they dont catch every case, only a small percentage are accurate.

Do a search on kids with untreated or undertreated lyme, they have learning difficulties in school and many are permanently physically disabled.

Most doctors do NOT know about lyme and most do NOT treat it. You need to get a LLMD who treats children. He sounds like he needs IV antibiotics immediately.

Knowing what I know now if I were you I would take him to Dr Jones in connecticut. I would spare no cost and get him there ASAP. He isi the best.

It will end up costing you 10 times as much if you let it go untreated and end up with a permanently disabled child.

Another thing you can do is search what the ILADS treatment guidelines say and print it out and bring it to your dr and threaten to sue if your child gets disabled because of lack of treatment.
http://www.canlyme.com/cecilaward.html
and print that out too and bring it to your dr. its a lawsuit a teen got because his IQ dropped 40 points from having lyme and left untreated.

go here and watch this
http://www.openeyepictures.com/underourskin/uos_description.html
click on "view trailer" on the left bar

others say they dont want to scare you. You need to be scared. you have a very sick child who needs treatment ASAP or will have permanent life changing effects.

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urpaige
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Thank you too for the information. I am VERY concerned. It is almost funny to me that I thought I was overwhelmed before Lymes entered our lives.

I was honestly hoping and willing to accept IV antibiotics yesterday at the ER and couldn't believe the Dr. didn't even do a blood count after I told him the ID Dr. I spoke with recommended we come in then for it.

For anyone who has had enough treatment, or if you just know, when is it enough? Today, my son's temp was normal and although he looks a little pale to me, he seems to be acting fine compared to the past few days.

Is this something that the symptoms come and go with?

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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roro
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is he on antibiotics? if he is still on oral antibiotics, maybe he feels better and they are working to keep it at bay.

there are some people who, if it is caught early enough, do recover from a month of doxy.

but if he still has pain, it may have spred to the joints and cause arthritis. the arthritis too can be reversible.

if all of his symptoms are going away with this antibiotics, then it is possible he is on a strong enough dose.

what is he on and what strength? I don't know much about what they give children. My son was on 100mg doxy twice a day for 8 months, with a few rounds of augmentin in there for sinus.

he seems better but I still took him to dr jones to be evaluated. he took 13 vials of blood and spent two hours with him. he is truly the best pediatrician in the world.

I dont know ANYONE who was treated in the ER properly for lyme or even by an infectious disease specialist. they just dont want to treat it. there is too much controversy surrounding this disease.

the LLMD's treat using the ILADs guidelines (international lyme) they are hard to find and do not take insurance. it is even harder to find one who treats children. did you post in the "seeking a doctor" section to find one in your area?

trying to educate an ER doctor or ID doctor to treat your son is going to be difficult. I dont know anyone who has successfully done this. The ID doctors treat according to the IDSA guidelines and usually it is not enough in late stages.

even with a positive test and all the symptoms they still dont want to treat. they spend months sending you around to every kind of specialists and dozens of invasive test, meanwhile it is spreading and getting worse.

then they will say it is MS or ALS or arthritis, and just give pain meds and symptomatic treatments, and give him a wheelchair. many with lyme have been through this nightmare.

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urpaige
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roro, yes my son is on antibiotics still. He took Amoxicilan fir 10 days 2x/day 400mg I believe, then he developed a rash all over his body from an allergic reaction and was switched. He is now taking Bioxin 2x/day 125/5. When this is finished he will have had almost 4 weeks of treatment that started less than a month after being bitten by the tick.

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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mtree
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My gosh urpaige......you have recieved excellent information.... [bow]

So sorry you are going through this.... when its a little guy like yours its just heartbreaking for us that have it.....

he is a lucky little boy to have a mom like you....

the only thing I would like to add....and I don't think anyone has mentioned.....is to

write EVERYTHING down.. what he complains about.....even with your other kids....

.....you've come to the right place...
[hi] mtree

--------------------
worrying about tomorrow takes its strength away from today

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urpaige
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Thank you mtree. I'm trying to write it all down, but have already gotten my dates confused to some degree. Do the symptoms of Lymes typically come and go? Like could he be under the weather for two or three days and then feel great for a couple days and then back down???


Tomorrow I go to see my rhumetologist for a followup visit. He seems to "think" I have fibromyalgia, although I'm not certain that is the right dx, and am now wondering if I might have lymes.


I tried to give blood once about 15-20 years ago and was told they couldn't accept it because I didn't pass the Western Blot screening test. P24 was positive and one other. I tried to find out what the problem was and never got any answers and finally dropped it since I felt fine...


I saved the papers from the Blood Services lab people and was looking at it this week wondering if it could be related to lymes since I now have what I think is more than normal aches and pains. I wrote it off as getting older, and a result of high school athletics, but now I'm curious if it's something more.


I'm not concerned about myself right now, but since dealing with this with my son and never getting an answer to why with my blood test issue, it has made me wonder.

--------------------
Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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roro
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that sounds like a strong enough dose, but he will probably need to be on it much longer than a month. and I am not sure if bioxin (or is it biaxin?) kills lyme.

lyme definitely does cycle and some days are better than others. he can be totally fine for a couple weeks and then have a really bad week.

that is why ILADs guidelines say to treat for 2 months after all symptoms are completely gone.

find an LLMD and make an appointment asap. try to get antibiotics from your pediatrician to last until the appointment. relapses can be devastating.

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mtree
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Paige....

Yes...yes...yes....symptoms can come and go....

either by weeks...days...hours...or even minutes...
your little guy could feel great in the am...and by lunch time... [dizzy] ....then dinner fine again....

Don't dismiss [tsk] what YOU are going through with yourself....
you being healthy will only help your son....we (moms) tend to put ourselves on the back burner...DON'T....
I know it is all so overwhelming....
keep coming back here for support....

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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urpaige
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My goal for today is to make an appointment for my son. I'm trying to find a LLMD that will work through out insurance, and think, I may have one, now I just need to see if she sees children.

It seems that I'm continuously second guessing myself with this, wondering if he really looks "ok", if maybe my thermometer is off a little, if because I ask how he feels he says somehting hurts. [confused] [dizzy]

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Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners.

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