So..as some of you know, we found a tick feeding in the upper ear of my 2 year old daughter 3 weeks ago.
Her Doc said not to worry unless she got a rash or flu-like illness in the next 2-6 weeks.
Well, here we are at week 3 and she has a fever of 102 and runny nose. I want her on ABX NOW!!!!!
How do I get the pediatrician to do this? All of the Lyme Ped specialists in CT are booked out months in advance.
So worried about my little girl. I don't want her to have this misery that I"m going through.
A very concerned Dad.
Posted by sixgoofykids (Member # 11141) on :
I'd go to a walk-in clinic to get meds while you wait for an LLMD appt. They do recognize acute Lyme, just not chronic. Tell them she had a tick bite and she's having flu-like symptoms.
Posted by BoxerMom (Member # 25251) on :
High fever often indicates the co-infection Babesia. And the incubation time would be correct.
Posted by canbravelyme (Member # 9785) on :
[Some of] The Lyme pediatric specialists may take phone calls from other pediatricians.
I'd see whether you can find someone locally asap who will consult with one of the LL pediatricians. If that might take time to arrange, in the interim I would go to the walk-in immediately.
Best,
Posted by tick battler (Member # 21113) on :
You might go to a walk in clinic or new pediatrician and just tell them that there was a bulls eye rash but it faded before you were able to bring her in. That might be enough to get the abx. A little white lie in this instance is worth it.
tickbattler
Posted by gwb (Member # 7273) on :
Time is of the essence and the longer her treatment is put off the more difficult it is going to be to treat. This is nothing to mess around with. It's a tough disease for adults, much more so for children.
Please get her to a LLMD asap and get her on abx. Her prognosis is good if she gets immediate treatment--for the sake of your daughter's health don't put it off.
I like what six suggested. Do that until you can get her in to see a LLMD. Do whatever you need to do to get her on abx NOW.
Gary
Posted by Keebler (Member # 12673) on :
- I recall she may have had part of the tick's mouth still in her ear.
Did the tick parts ever get removed from her ear? If not, be sure they look at that with bright light and magnification and excise any piece of the tick that it still there and fraction of the surrounding tissue. It may hurt in the short term but it's really very important to be sure none of the mouth parts remain. -
Posted by littlebit27 (Member # 24477) on :
I agree with everyone do what you have to do to get that little girl some abx. I would lie through my teeth if it meant my daughter would be saved from this hell.
Like a previously poster said I would tell the doctor she had a bulls-eye rash and now she is having a flu like illness. That bulls-eye rash is ever so important in the mainstream world. It is the question I get everytime I tell a doctor.
Posted by grandmother (Member # 19908) on :
I don't want to stress you but Lyme etc is a life altering situation. I had Lyme as a child, before Lyme was discovered, and my life was totally changed, for the worse.
I would be as aggressive as the situation allows.
Posted by bcb1200 (Member # 25745) on :
Thanks everyone. We are going to her Primary's Sunday clinic at 8:30 and I will INSIST she get on something today. She is allergic to amoxy / penni.
I will also make an appointment with an LLMD in CT on MOnday, although I think he is booking into June.
Posted by canbravelyme (Member # 9785) on :
Keeb:
Why is it so important that all the mouthparts are removed?
Best,
Posted by t9im (Member # 25489) on :
bcb:
My 10 year old daughter is now in month 8 with Lyme and babesia. We just saw Dr. J two weeks ago. Treating Babesia & Lyme.
Now we've seen infectious disease specialists at HCH, rhuematologists, etc. Went out of network up to BCH for neurologist. Have had numberous blood work, two MRI's.
Probably the most critical mistake was when we removed the tick and called the peditrician. The nurse indicated not to worry with no rash but call if a rash develops (we've since learned rash's don't develop in over 40% of cases).
Two weeks after the tic removal the flu like symptoms appreared. The pediatrician requested the Lab check for Lyme.
They ran Elisa, not Western Blot (we only discovered 6 months later unless the Dr. requests it, its Elisa and if Elisa is negative no WB is run. Then if WB is run there is a whole scenario as to what constitutes a positive from CDC versus LLMD's (ILADS).
One also has to request the band results up front and the pediatrician is uneducated in this area.
We did see a family DR (in plan) who recognized the tic like symptoms but he was / is not familiar with the LLMD's methods. He only prescribed Doxy and at 7 months thats not enough (nor does it treat babesia, a parasite.
I have put in well over 100+ hours of researh since March, just enought to know my daughter is going to be sick and on meds for a long time.
Dr. B's write up is good to read & the woman pediatrician from Maryland.
Posted by canbravelyme (Member # 9785) on :
For adults, doxycycline is usually what is prescribed.
I'd take another look at the Burrascano guidelines and see what he says about pediatric dosages / children before taking her to the clinic:
She is allergic to Amoxy. I called Dr J's office last week who said she should take Zith (generic azithromycin) but Dr. B's guidelines say "not for children."
So confused.
We have our appointment at 10:45
Posted by kateaton (Member # 24871) on :
You could buy abx online from canada or mexico, there are reputable sites ie. Medsmex, etc.
Posted by bcb1200 (Member # 25745) on :
Update...so we went to the Sunday Pediatric clinic. I am so frustrated. What a WASTE.
I think everyone here can imagine what we were told. That she didn't have a rash. We don't give prophylactic abx, etc, etc. That Lyme is hard to get and easy to cure, etc. That the tick I described was too big to cause Lyme.
I then went into how I was just diagnosed after 4 months of going from doc to doc and I didn't have a rash or the classic joint / arthritis. I had ear / eye issues with muscle aches and an abnormal brain spect, etc.
The guy made me sound like I was a paranoid parent. He was not our normal doc, mind you, but the on call doc.
At least he did a lyme test. I asked for western blot, but he gave me the spiel about there being a "strict protocol to follow."
I love how these docs hand out abx like candy for an ear infection, yet they don't to anything for Lyme
I pleaded, etc, but he refused until the test results.
I'm going to seek an alternate opinion with an LLMD in CT but it may be weeks before she can get in.
I feel like the whole experience was just like a chapter out of "Cure Unknown".
Posted by bcb1200 (Member # 25745) on :
Oh yeah...and now she has a bad, hacking (sounds painful) cough in addition to a fever. She also stutters a lot. She used to do this a little, but this past week a lot more. This AM she told me her "feet hurt."
So scared. Going to schedule an appointment with Dr. M in CT tomorrow as I know he trained under Dr. J.
Posted by Keebler (Member # 12673) on :
- Q: "Why is it so important that all the mouthparts are removed?"
Because the mouth parts can carry spirochetes, or other microbes and stay attached to the mouth part. As long as that is in the ear, infection may never be resolved, even with medicine. Also realize that the outer ear may not get much medicine at all as circulation is very low there.
And with so many forms of lyme beyond the spirochete, the medicine may not even be effective if the mouth parts have other forms of borrelia besides the spirochetes.
There are 10 - 20 pleomorphic forms, granular forms, etc. (According to researcher Eva Sapi at the University of New Haven).
Research on the importance of mouth parts removal is from eastern Europe. I don't have links as I usually like to have but I distinctly recall this information from a lecture I attended few years ago.
In the country where this research was done - if there is any piece of tick embedded - they actually take a fair amount of the tissue surrounding the parts, not just pulling it out, but cutting out around so as to be absolutely certain not even a trace of mouth part remains. The mouth parts are very jagged and (in that country, as a rule) any trace is removed with a sharp tool under intense magnification. -
[ 05-23-2010, 05:41 PM: Message edited by: Keebler ]
Posted by Sick Tick (Member # 23003) on :
Try another MD right away....mention the tick bite, and fever....but do NOT mention Lyme disease! When I went to the ER with high fever and told them about the tick bites, they immediately began treating for Ehrlichiosis, another tick borne illness. Never even considered Lyme. I got taken very seriously, but when Lyme is mentioned, most MD's go into the same tirade you quoted above.
Posted by dmc (Member # 5102) on :
Sick Tick,
Don't worry. He's already taking her to one of the best LLMDs in CT.
One who trains under Dr. J.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by bcb1200: ...now she has a bad, hacking (sounds painful) cough in addition to a fever. She also stutters a lot. This AM she told me her "feet hurt."
quote: ...my son was 4.5 at the time started stuttering. This fall, he developed a chronic cough and was diagnosed with asthma.
Hmmm, interesting about the stuttering. Carol
Posted by Keebler (Member # 12673) on :
- With the stuttering and the feet hurting, I would take her to Urgent care and ask them to consider ehrlichia, babesia and bartonella. Then just mention lyme.
Be sure to show them the tick bite and note the time line. Ehrlicha can get into the brain (stuttering suggests central nervous system infection) . . . bartonella affects the feet. Babesia affects the lungs.
Ehrlichia can cause brain swelling / encephalitis. Urgent Care is an understandable choice, considering the high fever. -
Posted by canbravelyme (Member # 9785) on :
Hi,
Now that Keeb mentions it, I don't like the combo of high fever and stuttering: period.
Please bring your daughter to Urgent Care as soon as possible, irrespective of Lyme and co's.
Please let us know how it goes.
Best,
Posted by bcb1200 (Member # 25745) on :
She has always stuttered a bit. She is very smart for being 2 and her vocab is excellent. But sometimes her minds gets ahead of her mouth. But the stuttering was worse this past week.
Posted by canbravelyme (Member # 9785) on :
The reason I feel concerned is due to my experience with seizures and cognitive issues. There have been significant periods where I couldn't do simple math, or count change correctly.
The brain causes such things. Plus the fever. Plus the fact that she's 2.
Did you mention the increased stuttering to the doctor this afternoon, in conjunction with the fever? What did they say?
Best,
Posted by Lymetoo (Member # 743) on :
I'm really worried about the possibility of ehrlichiosis and/or babesia. She needs IMMEDIATE care for either one of those, not to mention lyme.
Man, I'm so sorry this is happening to YOUR little girl!! Posted by bcb1200 (Member # 25745) on :
Okay...I have an update.
She went to her Primary Doc's office today. Doc was sick but was seen by the PA.
The believe she has croup...and actually this makes sense. There is a TON of croup in our area this spring and she has all the symptoms. AND...my wife has had symptoms the past 3 weeks (scratch, sexy voice but it hurts to talk.)
They have her an Rx for prednisone, which we are not going to do as the risk of Lyme. We are going to continue to treat her tick bite with Pleo Not in the mean time.
So...I may have pushed the panic button here. I admit to being a little touchy. I will continue to watch her like a hawk to see if there are any other lyme-like symptoms. And I will request a copy of her Elisa Lyme test later this week once it comes in.
Thanks all.
Posted by Carol in PA (Member # 5338) on :
From what I read, croup is usually caused by a virus.
How about an antiviral like elderberry extract?
You can look it up at iHerb.com to see the many kinds available. Some of them will be at the drugstore.
I laid in a supply of elderberry in case I ever get influenza again.
Carol
Posted by WildCondor (Member # 434) on :
Croup, not fun. Humidifiers are your friend. That said, keep an eye out for the tick infections. Any known tick bites should always be treated right away. Forget about waiting to see what tests say or waiting for a rash, treatment should start the day the tick is found and be for at least 4 weeks. Keep an eye out for co-infections too.
Posted by bcb1200 (Member # 25745) on :
Thanks all. Doc called today to say Elisa test from Imugen was negative. big whoop. So was mine.
But..the croup seems to fit the bill. A boy at her daycare has it too and when I went to the pharmacy today they were cleared out of all tylenol and ibuprofin.
WIll continue to watch, but seems to be legit croup for now.
Posted by massman (Member # 18116) on :
Elisa test means squat. Almost all the tests show many false negatives. Most docs are lyme illiterate morons
If it is lyme your daughter may suffer for years. WHY are you gambling ?
Posted by Keebler (Member # 12673) on :
- The tick mouth still needs to be removed from her ear. I hope you can find someone to do that. I know you'll have to wait a while to get her to the other LLMD but if the tick mouth part has not been removed, be sure to let then know before your appointment so they can make arrangements to do it there if they can. -
Posted by jkmom (Member # 14004) on :
When my daughter got sick a few months after her tick bite, she was diagnosed with strep throat. They did not do a culture and she wasn't complaining about her throat. She seemed to get better on abx, but then felt bad again. I kept taking her back, thinking she might still have strep but when they tested her it was negative. I wish I had known enough about Lyme then to recognize it as a possibility.
I am not questioning the croup diagnosis, but want to ask you to please consider Lyme if your daughter now has a series of illnesses even if they all seem like reasonable answers.
Posted by bcb1200 (Member # 25745) on :
Thanks all. Believe me..I am watching her like a hawk. It turns out there are now 2 kids at her daycare who also have it. So I do think it is croup.
Believe me...I have lyme and am educated. But I also don't want to be the hysterical parent. THe tick was a wood tick, not a deer tick. I know they can carry LYme & co as well..but deer ticks are more risky in my region.
I will be meeting with a good LLMD in 2 weeks and will discuss wth him the options. The challenge is there isn't much medication a 2 year old can take other than Amoxy..and she is allergic to Amoxy.
Posted by canbravelyme (Member # 9785) on :
I know you're being careful, but I will mention I've been fighting off a massive Bartonella infection due to wood ticks.
Posted by tick battler (Member # 21113) on :
The fact that her feet hurt concerns me and makes me think lyme/coinfections. What did the doc say about that?
Posted by bcb1200 (Member # 25745) on :
That hasn't happened again. SHe has all classic croup symptoms and ohters have it at her daycare.
I know..i know. Believe me. I still worry about Lyme & co. She is my baby.
Looking at options.
Posted by Keebler (Member # 12673) on :
- I didn't find exactly what I was looking for but this might help regarding the mouth parts that were left in her ear: -----------
MATTHEW GAMMONS, M.D., and GOHAR SALAM, M.D., D.O. Michigan State University College of Human Medicine, East Lansing, Michigan
Am Fam Physician. 2002 Aug 15;66(4):643-646.
Excerpt:
. . . Following tick removal, the bite area should be inspected carefully for any retained mouthparts, which should be excised. . . . -
Posted by massman (Member # 18116) on :
No more...Mr. Nice Guy.
WHY are you not taking action ? ? ?
After the first four weeks are gone the you know what hits the fan. Big time. Forever.
All the responsibility of her getting sick falls on you.
You say how much you care yet you ONLY observe ? I am beginning to wonder if you really have a kid + if that kid really is sick,
Posted by bcb1200 (Member # 25745) on :
Massman...there is no need to be hostile.
You have no idea how much I worry about this. Sorry for other Dad's out there..but she is THE MOST WONDERFUL little girl in the world.
We have been to two doctors so far, non LLMD, who say it is croup and she is fine. We have done the initial Elisa (useless, I know) which was negative. I have pushed and pushed unsuccessfully, even with a family member who is a PA and can prescribe, for antibiotics.
We are treating with Pleo Not, a homeopathic drug, for now.
I want to go see Dr. M in CT, or maybe my Dr in Mass if she sees kids. But I also don't want to be the paranoid, obsessed, overreactive parent. I feel like I am being that a bit. My wife, who is Lyme supportive, is worried abuot 4-6 weeks of unnecessary abx for a 26 month old. Is it worth the risk considering this is most likely croup and others near us have it too?
I have lyme. It sucks. It scares me. Will I ever be normal, etc? I worry about losing my job as I should be working now but am on Lymenet. I know I've become a bit obsessed.
But I don't want my fear to harm my daughter. She could be fine. Just because you are bitten doesn't mean you will get it. Yes, you could. But you may not. I agree..why risk. But with a 2 year old, it is more difficult.
So confused as to what to do. My wife is in favor of waiting based on all of the evidence thus far. If I push, I'm being obsessed. If I don't, you all get mad at me.
Ug...I hate this.
Posted by jkmom (Member # 14004) on :
I thought I had posted my daughter's story to you, but it doesn't seem to be here, so I'll tell it again. Maybe if you share my story with your wife, she will reconsider.
My daughter had a bullseye rash. After it was gone, I found out that meant Lyme. I called the pedi who told me there was not Lyme in TX and they wouldn't treat without seeing the rash. I looked up Lyme online and came to the mainstream views of easy to treat, hard to catch, a rash could be an allergic reaction, only on the East coast, etc.
I don't remember seeing a site like this, but if I had, I would probably have thought everyone was paranoid, obsessed, and overreactive. Back then, I still pretty much believed the mainstream views and thought doctors could be trusted.
So my daughter started not feeling well. Her diagnosis was first strep throat, then anxiety, and migraines. I have migraines and there is a family history of mental illness, so this was believable and we treated for those.
Fast forward a few years and she is sick enough that her headaches can't be controlled any more. Now she is in bed with a constant headache, unable to go to school, or play with friends. For 2 1/2 years so far. We've been treating Lyme for almost that long.
She used to be on her way to being a competitive gymnast. Out in the yard, practicing her flip flops. Winning races in swimming during the summer swim league. Practicing so she would win. She used to have trouble deciding who to play with because she had so many friends. Now, she lays on the floor playing computer games by herself, when she is doing well. She used to score in the top 1 or 2 % of standardized testing. Now, she struggles with math a grade level below hers. She is 12.
I am sorry that I didn't research further about Lyme disease at the time. You do not want to be the Dad who knew enough to be concerned and had people telling you what to do and you decided not to do it if she ends up sick. In my opinion, a few weeks of abx is worth the risk. Better to be obsessed, paranoid, and overreacting, even if she doesn't have it, than to let it go.
My mother also had the bullseye rash at the same time as my daughter and a doctor gave her abx for it. Unfortunately, then she went to her regular doctor who told her she never had it. But my mom is fine now.
Even if she has croup now, that doesn't mean she didn't also get Lyme.
Posted by bcb1200 (Member # 25745) on :
Okay. I have made an appointment with Dr. M in CT. Its not for 3 weeks, and I will most likely get int a fight for being paranoid, but at least I'll know.
Posted by massman (Member # 18116) on :
I am not being hostile. I am calling BS on you.
Bottom line: What is really more dangerous - 4-6 weeks of Abx or years of lyme, possible coinfections AND all the lyme complications ? ? ?
Read the post just above this a few times. And a few more. If it is lyme she will lose parts of her life.
I know what a good or great father - daughter relationship is. I have 2 daughters.
Posted by tmcm (Member # 23249) on :
bcb1200
As one father to another, I can understand your frustration since getting a definiatve answer is hard. One thing to consider is peace of mind, if you get to a LLMD and get a Western Blot test with Ingenex, you will have a better understanding of what you MAY or MAY NOT be dealing with. In the end what are you really out by taking her in? There is the financial but it sounds like you would do anything for your child and I wouldn't worry about the abx, the LLMD will prescribe a safe one for her given her allergies and the results of the Wester Blot should only take a few weeks. If nothing is found then she "may" not be infected. I think that the "hostilty" with most on here is that you have absolute evidence that she was bitten and the wait and see approach can prove to be very dangerous if you are wrong. I understand about the obession, my wife has it and my 10yr old son does as well. We are taking my 5yr old daughter to get a test, she has some syptoms and we do not want to miss anything! Take her into the LLMD, get her the Western Blot, I sincerely hope she doesn't have it, but if she does, the sooner treatment starts the better(all things I know you already know). I hope it works out for the best, better to know than to sit and worry...
Posted by bcb1200 (Member # 25745) on :
So..as I have said...we're going in to see Dr. M in a few weeks. I will have him do the western blot. Will it show positive after only 4-6 weeks post bite?
tmcm...if your daughter tests negative, what will you do. We know the tests, even IGENEX, are troublesome.
Posted by Jane2904 (Member # 15917) on :
Best of Luck, glad you are taking her to a LLMD. Posted by tmcm (Member # 23249) on :
It really depends on the visit and her clinical evaluation,we may begin the orals and if we get a negative test, evalute if there is any impovement/herx reations and decide after 3-4 weeks of treatment. I don't want to put her thru anything unnecessary, it is going to be a tough decision and I hope to make the right one. Glad to see you are headed to the LLMD and in the end I am sure you guys will come out ok. If it helps at all, our LLMD says that he would rather treat kids all day long, they seem to respond better to treatment in his experiences.
It kills me as a father because I want to protect them from everthing and something so small can do so much damage. The key now is being there for them and as their ADVOCATE...
I hope and pray for the best outcome for you and your little girl...(they don't stay little for long!)
Posted by bcb1200 (Member # 25745) on :
Thanks all...me too.
Posted by massman (Member # 18116) on :
She needs the drugs BEFORE the appointment.
It may be too late to wait til appointment time. I am a natural health pro that has worked with the public for 25 years and I am highly recommending DRUGS ?
I must feel it is REALLY serious ? YUP !
Posted by bcb1200 (Member # 25745) on :
Hi all:
Just thought I would give an update. My daughter is back to her old self. Her fever is gone as is her croup. We are feeling it was really croup and not a "lyme flu" as my 2 year old got it with the same fever / cough and I also got a cold.
I have an appointment for next week with Dr. M in CT who trained under Dr. J. I'm trying to decide whether or not to cancel. She seems really fine, has no rash, no complaints, good appetite, etc. Of course...it won't hurt to go see Dr. M. But I have to take a day off work and it will cost $$$. But I suppose it may be better to be safe than sorry.
We are still giving her the Pleo Not homeopathic treatment.
Posted by 17hens (Member # 23747) on :
Just a thought... even if he says the coast is clear this time, if she has symptoms in the future it might be easier to get in with this doc if you can say she's seen him before...
if you're taking votes, i say keep this appt.
hope all goes well!
Posted by bcb1200 (Member # 25745) on :
So...met with Dr. M today. Good news is he thinks my daughter is all clear. Everything checked out. He even called Dr. J to double check who also agreed based on the examination that my Daughter is fine. At 6 weeks post bite she should have symptoms by now which she doesn't.
Love Dr. M btw. I am considering seeing him too.
Posted by merrygirl (Member # 12041) on :
doc m rules
Posted by Lymetoo (Member # 743) on :
YEA!!!
Posted by 17hens (Member # 23747) on :
Oh, that GREAT news!!!! What a blessing!!!!
Posted by bcb1200 (Member # 25745) on :
Thanks and Yes. It was a blessing. I felt good when Dr. M said he thought she was fine. I felt BETTER when he called Dr. J, the foremost expert, to double check!
What concerned me...we discussed my lyme for a few minutes (I was diagnosed on 5/3) and he said I have a LONG ROAD ahead of me given I had an abnormal brain spect. Humph.
Kind of bummed me out. I didn't think I was that bad off given my energy level is good and I've seen improvement in the first 5 weeks of treatment. Hope he is wrong. I do like him though. He was able to validate what my Doc in Mass is doing is appropriate. I was concerned as to whether I was getting proper treatment that was agressive enough. Should I be on IV. He said 400mg of Doxy was like being on IV and the 1000mg of Flagyl pulsed every 2 weeks for 3 days was good. He does it usually 3 days / week, but a lower dose. So...made me feel good.
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