posted
need advice on what to do..........yesterday we went fishing and we came home and did a family tick check.... and my 5 year old daughter had one on her back and it latched and we took it out with tweezors... today there is little red raised bump with a white looking place where the bite was... i was thinking ok it's like a mosquito bite it will leave a itchy raised bump but now i'm a little worried she has laid around today and saying she doesn't feel well, we checked her temp. and it is 99.4 i know that is not a fever for a child but she was going to bed and i was thinking to take her to her doc. tomorrow and have them start her on antibiotics to be on the safe side....... any advice on what to do????????????? worried, lisa
Posts: 40 | From ky | Registered: Apr 2007
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posted
Hi lisa, I can understand your being worried. It's not typical behavior for a 5 yr old to lay around & say she doesn't feel well or to have a degree of fever when she's been inactive.
If it were my child, I'd do everything I could to get treatment to prevent future problems.
I haven't had medical training, but as a mother & grandmother with a lot of experience with Lyme, I'll make a few suggestions that illustrate my reasoning.
Several years ago, I was told that the most experienced Lyme Pediatrician in the country, Dr J in CT, said he "recommends & prescribes 30 days antibiotics to kids with a known tick attachment." He has treated over 10,000 children (including my grandson). No one can equal that for experience.
Print "Diag Hints & Treatment Guidelines..." at www.ilads.org/burrascano_0905.html It's 33 pages of excellent info written by one of the best LLMDs in the country.
page 19: Treatment Categories- Tick Bites - embedded tick, no symptoms Read his comments. Children: oral therapy 28 days.
page 17: Antibiotic Choices & Doses Amoxicillin - Children: 50 mg/kg/day divided into q8h doses. Means a 35 pound child would need 800mg per day Note: this is stronger than typical dose given for other illnesses, but this bacteria is not typical in any way.
page 32: Rationale for Treating Tick Bites #1 mentions ...young children... #3 says transmission can occur if tick is attached 4 hours or more; discusses problems with removal of tick LAST PARAGRAPH is very important. Ends by saying "...risk-benefit ratio favors tick bite prophylaxis."
Give a copy of the "Guidelines" to your dr and show the info noted above. Encourage your dr to call Dr J's office if he is reluctant to treat. I'll send Dr J's phone # to you by pm.
Take pictures of the site of the tick bite with a newspaper date-line beside it to show when the picture was taken. If it changes, take more pictures. Keep pictures of bite in medical records forever.
Start a notebook. Put date of bite, copies of pictures, any important info. Keep a detailed record with dates of any complaints, symptoms or changes in your daughter.
When you take her in, do not depend on lab tests for a diagnosis. It takes 4-6 weeks for the body to produce enough antibodies for the test to be positive. If you wait that long to run the test, valuable time will be lost for treating early.
Also, there is no Lyme test accurate enough to "rule-out" Lyme disease or to tell when treatment has eradicated the disease.
If she does have Lyme, the earlier the treatment, the better the results, BUT ONLY IF treatment is adequate - long enough and strong enough.
Unfortunately, you only have one chance to treat early. If it isn't done, the opportunity does not come around again. It's best to err on the side of caution!!
My grandson did not get adequate treatment when he was first diagnosed. The "typical" treatment seemed to "cure" the problem, but it flared up again some months later. I wish I had known then, what I know now.
A mother is the best resource person in the world when it concerns her child's health. You feel something is wrong, & it very well could be.
Keep in touch & let us know how your precious daughter is doing. We care!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
cbb..
Good to see you and a big WOW on the information you shared. As always.. excellent.
posted
wow thank you so much.... i had trouble sleeping trying to figure out how to convince the doc. and what treatment is long enough... thank you very very much.. will keep posted lisa
Posts: 40 | From ky | Registered: Apr 2007
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posted
Tincup, your approval of my suggestions makes me feel great! I'm concerned about anyone with Lyme disease, but I worry the most about children who don't get an early diagnosis or don't get adequate treatment.
My grandson had such subtle symptoms, no known tick bite, no rash. Now we're almost certain he got Lyme when he was 8 yrs old, but wasn't diagnosed for several years.
I know one child who had only one obvious symptom - she started wetting the bed.
Lisa, Last night, I didn't think about the helpful brochures that are available. Advantage is that lots of reliable info is concise & easy to read. Doctors are so busy, they like a "quick read."
Take the following brochures to your doctor. www.ilads.org Click Brochures & print two:
"What You Need To Know About ILADS & Lyme Disease" contains Basic Facts that everyone should read. "What Psychiatrists Should Know About Lyme Disease" - neurological info, some applies to children.
On the left, click Lyme Disease Association & look for Brochures. Maybe they'll send 2 copies of each of the following - one for you & one for your doctor.
"ABCs of Lyme Disease" has outstanding info about children with LD. When you read it, keep in mind that some of the info is "worst case scenario" & overview of most all possibilities of problems that could occur, especially when Lyme is not treated early.
"Lyme {R} Primer" concise, general info on Lyme and co-infections.
I highly recommend you click on amazon.com on the left of your screen & order "Coping With Lyme Disease" by Denise Lang. They have new & used copies available.
Book has excellent info, especially the chapter "The Young Child" which is about 12 pages long!!
How's your daughter feeling this morning? Be aware that in some people, initial symptoms can be very mild & can clear up in a short time.
In a nutshell - treat early and child will not progress to Chronic Lyme Disease which is very complex & difficult to treat.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
i kept her home she is still laying around and now her eyes look like she has a cold in them and she is saying she doesn't feel well and when i look in her eyes i can tell when she gets sick she has this droopy look and it is there this morning..... got the appt. at 2:45 today seems to far away but i'm glad i got it today.... thank you
Posts: 40 | From ky | Registered: Apr 2007
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posted
So glad you've got the appt. Yes, this is still considered early.
A lot that you'll read concerns problems in Chronic LD (many people go for years without knowing what is wrong). Not much is written specifically for Early LD.
Be aware that some doctors want to have a positive test result before they treat. Others wait and see if symptoms develop before they treat.
Based on my family's experience and based on my opinion, the subtle signs your daughter has would be enough to warrant treatment.
For many doctors, this is new territory for them and generally speaking, med schools in the south have not spent a lot of time teaching about Lyme disease.
Lyme is a clinical diagnosis based on symptoms, history of tick bite, response to treatment, etc. Test results can be supportive but should not be used solely to make the diagnosis.
Important - If the doctor prescribes antibiotics in the stronger dose, it will kill a lot of the good bacteria in the digestive system when it kills the bad bacteria. This allows yeast to grow in the digestive system.
Dr B's Guidelines have info on acidophilus and prevention of Candida, systemic yeast infection. page 25: Basic Daily Regimen - Probiotics
Go to the Health Food Store & buy Acidophilus to replace the good bacteria. Acidophilus should not be given within 2 hours of the antibiotic (before or after) because it will kill it before it has a chance to help.
Since your daughter is so young & pills would be a problem, ask about the kind you sprinkle on applesauce, yogurt, etc. They can advise you.
Also, yogurt with live culture is good, but she'd have to eat a lot to get the same amt of acidophilus you sprinkle on food. It would also increase the amt of sugar she's eating.
Many doctors recommend both.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
she now has a fever of 102.4 and a hoarse cough...... will be leaving soon to the doc. please pray they treat her today... lisa
Posts: 40 | From ky | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
cbb...
Your advise has always been great!!! Keep up the good work!!! You are saving LOTS of misery for amny.
lisabeth..
Good to know you were able to get an appointment.
Good luck and let us know what the doctor said. I do hope your little one feels better soon.
posted
Thanks, Tincup! Just trying to follow the example you've set.
Lisa, Since she's showing more symptoms, please try your best to get the dr to consult with Dr J in CT. Can't stress this enough.
If you have to, cry a little or maybe throw yourself on the floor and cry some more.
Treatment that is not strong enough seems to kill the weakest of the bacteria and leaves the stronger to go into hiding. The patient appears to be cured, but then the disease will flare up again at some time in the future - maybe weeks later, maybe years later.
Not to overwhelm you, but keep in mind that ticks frequently carry other infections along with Lyme. To really complicate matters, the tests for co-infections are not any more reliable than the tests for Lyme. It's very early in her illness, but Dr J may suspect co-infections based on her symptoms.
Will be praying that the doctor not only treats, but treats adequately!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
UPDATE: my daughter Lilly was seen by our family doctor and thank God he knew alot about lymes. his wife and him went through the whole situation with their 4 year old daughter when they thought she had lymes.... so he knew what to do.......... he was hoping and so was i that it was strep throat but it wasn't and then he said we need to do blood work and i am scared. he told me the test are hard to figure out because most will be negative but we will do it a few times and see if the numbers change but we will start her on treatment now..... i was so impressed....a little small town doc. knew all the things i have been reading.... he said she has the classic signs of rocky mountain spotted fever and unlike most docs. in the past he seemed very serious... he said if she starts get much worse tonight get her to kosair children hospital by ambulance....and he wants her back in 2 days. he is going to draw more blood in 2 weeks. she just got her 1st dose of antibiotics. thanks for this forum of info. i don't think i would have known what to do and i would of waited too late!!!God bless all of you i will keep this posted..please pray the treatment works. hugs>>lisa
Posts: 40 | From ky | Registered: Apr 2007
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posted
I've been watching for an update. Thanks for taking the time to let us know.
Glad to hear your dr was so well informed. Will be looking for further updates.
For testing, do you think your dr would consider using one of the labs that specialize in Tick-Borne Diseases? It increases the reliablity of the test results.
posted
thanks for that big huge hug for her... she is laying next to me and looks like an angel... she is also sweating so bad! I am very sick now and my god i would take her illness a hundred times over so she didn't have to have it.... She is my baby!!!
i will see him wedn. and i will ask him about those test and i'm going to print it out... i had all the 33 pages you sent me and rolled (i'm in a powerchair) into his office thinking i was going to have to slap them out at him and instead he already knew the stuff....woooohoooo.. i didn't want to be called the crazy lady but i sure wouldn't care if it saved my childs life.. thank you for your support... love and hugs from our family lisa
Posts: 40 | From ky | Registered: Apr 2007
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posted
What a blessing that you didn't just let this go on. I haven't had to learn about Rocky Mtn Spottd Fever before, so I'll follow your situation with interest. Tend to forget about that one.
When you have a chance, what antibiotic did he prescribe? ...what dose? I certainly hope it brings relief quickly.
Wish I was there to help you in some way. Just know that you and Lilly are in my thoughts and prayers.
Double hugs. Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
well at first he said a few choices and then he said if it were my child i would do doxycycline and we had trouble finding it at a pharmacy so he ended up having to call in amoxicillin. he wants to see her tomorrow and see how she is doing on the antibiotic.... i am so glad he is this concerned and didn't pass us off like i'm so use to with all my docs. today she was able to eat and so far no rush to the hosp... thank God! i also know just because she seems a little better that she is far from out of the woods.... thank you for all your support and i will let you know every step of the way!!! Posts: 40 | From ky | Registered: Apr 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
This sounds like a great success story. You caught it right away and found a knowledgeable Dr. Thank God..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
here is a picture of her rash 2 days after bite and the strange thing is the bump in the middle of her back is where the tick was inbedded and now she has a rash also on the neck and a few bumps by her ear.... what do you think??? Posts: 40 | From ky | Registered: Apr 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Lisa, hey I'm in Ky too. You mentioned Kosair, are you in Louisville?
Have you done a inch by inch search in her scalp for more ticks? It's possible there's more than one. Do you know they can be as small as a period dot?
I know you are really frightened.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You are doing great so far!!!
Here is one tidbit that I read lately.
The strange thing with RMSF is the tick does NOT have to bite you . All he has to do is 'crawl' across your skin. His footprints transfer the bad bugs.
And YES it does cause the patient to be sick very quickly,,,
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
I have checked every part of her body and yes the doc. and i believe we have a case of rocky mountain spotted fever. we are really scared but very thankful we jumped on it in time.. i have done alot of research on it since yesterday and i am convinced because where the bigger bump is on her neck was a little tiny red dot under the skin on sunday and now it is a rash..that is one of the signs of rmsf... we have her now on doxyciclyne antibiotics.... I am so thankful for all of my new friends here who are expresses your concern.. i will keep you posted hugs>>lisa
Posts: 40 | From ky | Registered: Apr 2007
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posted
i just realized the date on the pic. is wrong.... i have never fixed the time and date with my camera... she got a check up today and wow she is doing so much better and like the doc. said the blood work will most likely come back neg. and it did so in 2 weeks he is taking more and he is going to watch the blood..... i don't know what kind of test he is using i forgot to ask, but she i be suggesting a certain one???? or ask him if he is using a certain one????
thank you lisa
Posts: 40 | From ky | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good news that things are going better for your little one!
Lyme can cause rashes in other places besides the bite site... called "diseminated".
But the fact she is on doxy.. that med can help with both RMSF and Lyme.
posted
Lisa, So glad to hear she is improving!! But I still recommend your dr consult with Dr J, the Lyme Pediatrician in CT.
You need to be sure treatment is adequate. If not, the stronger bacteria that survive the antibiotics will hide out and the disease will flare up again at some time in the future....kinda like a sinus infection that seems to be cured, but will flare up again.
About testing, be sure to get a copy of her test results & keep it with her medical records. It's also important to know which lab is used.
Tincup, I responded to livinlyme about info on Columbia, SC. Will do what I can to help. Biggest problem will be lack of LLMDs here.
By the way, noticed you responded at 3:15 am. When do you sleep?
Posts: 4638 | From South Carolina | Registered: Mar 2001
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