My 2 1/2 year old daughter recently had a bullseye rash on her leg. I called the pediatrician who basically told me that if I didn't see the tick and it wasn't still attached not to worry and to call if she developed a fever. Well within a week she had a fever and we brought her in. She is now on a 3 week treatment of amoxicillian, but has been complaining that her head hurts and her knee hurts (close to where the bullseye was). She also has a rash all over and another doctor in the practice claims is an allergic reaction to the medicine. After doing some research online, I realize we need to see a doctor who specializes in lyme disease. Can she still be having symptoms while on medication? Does this mean the medicine is not working? Should she be tested for lyme or is it to late because she started antibiotics? I'm finding this disease to be very frightening and complicated and want to get her into see someone who is literate in this disease.
Posted by SC (Member # 5767) on :
Hello welcome to Lymenet! Sorry you have to be here but this is the best place I know to find the information you need.
I am new to Lyme disease so I can't answer all your questions but I can tell you that you MUST MUST MUST get you little one to a Lyme literate doctor ASAP!!!!!
Post in the Seeking a Doctor section for a doctor recomendation. You may have to travel to see him or her but it is well worth it! We drive about 10 hours to see ours but he is a life saver!!!
Your daughter is lucky that she has had some treatment but most doctors have no clue what is needed to fight this disease. She can continue to have symptoms while treated and could get worse before getting better.
Others will post that know much much more than me. The people here know more than the majority of doctors!
Best of luck in your search for the needed information.
We will be praying for you!
SC
Posted by Stella (Member # 3119) on :
The best doctor for treatment of Lyme in children is Dr. Jones. I believe he is somewhere in the northeast.
Ask others on the site about him, they will be glad to help you get your daughter and appointment with him.
Best of Luck!
P.S. - Children seem to respond quicker than adults to Lyme treatment. Hope your daughter gets better real soon!
Posted by lymie tony z (Member # 5130) on :
Sorry you have to be here also, The bullseye when one gets it is a sure sign that the tick has been there long enough to regurgitate the bacteria into your daughter...the doc is mistaken. I have had both the bullseye and an all over my torso type rash and several other localized rashes prior to and durring treatment . While it could be an allergic reaction to the antibiotics I would look for other signs of allergy before taking my child off antibiotics. The best one your daughter should be on is IV antibiotics cuz the bug is already in the body. The ducks that did me initially refused me IV antibiotics and gave me oral and thus I still have my infection many years after. I don't know where you live but if you need a LLMD that's lyme litterate doctor please don't hasitate cuz it takes some time to see them even when you find one. Time is of the essence here. 70 percent of people that catch this thing soon enough get cured...I believe this number o be accurate. Anyway you have to hit it and hit it hard right away before it disseminates through the body. Your daughter will have pain at the bite site and possibly elsewhere because the minimal antibiotics they are giving her are at least trying to kill the bacteria and when you achieve "killoff" the bug releases toxins that hurt our bodies...keep in mind that this is a good sign. God I hate it when kids get this thing...but your daughters immune system may be strong enough to fight it off(being so young). Good luck and God bless......the zman ps If it was me I would have my whole family checked for this disease because there is a good possibility where one gets it the others might have gotten it also even though the others may not be presenting with any symptoms. zman ------------------
[This message has been edited by lymie tony z (edited 08 July 2004).]
Hi DJP, Welcome to LymeNet. You're wise to investigate this for your child. We'll help you get the info you need.
Go to www.ilads.org Website by best, most experienced Lyme disease drs.
Print "Basic Info" - 3 pages of info everyone should read.
Excerpts - #3 says "Fewer than 50% of patients with Lyme disease recall a tick bite..." #4 "...rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy..." #10 - There has never been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme.
Go to www.ilads.org/burrascano_1102.htm Print "Diag Hints & Treatment Guidelines..." 32 pages of excellent info by one of the very best Lyme Literate Med Dr (LLMD).
page 16: Antibiotic Choices Amoxicillin - Children: 50 mg/kg/day divided into 8 hour doses This means - 35 lb child needs 800mg/day
page 18: Treatment Categories Early localized disease - single bullseye rash, no other symptoms Children: oral therapy for 6 weeks
Early Disseminated disease - milder symptoms present for less than one year... Children: oral therapy with duration based upon clinical response.
Take both copies to the pediatrician, IF you think she'll be willing to read them.
Also, she needs to consult with the very best Lyme Pediatrician about treatment for your daughter:
My grandson's pediatrician would not even consider a Lyme diagnosis. We took him out of town to Lyme Dr - had testing, treatment, & later had positive PCR for LD. Since he had LD several yrs before treatment was started, improvement was slow. Dr consulted by phone with Dr Jones for a while. Then we took Thomas to CT to see Dr Jones. He is a wonderful physician!!
About testing- Bullseye rash is diagnostic for Lyme disease. No test is needed.
It takes about 4 weeks for the body to build up enough antibodies to have a positive test. There're only a couple labs that specialize in Tick-Borne Diseases (TBDs) & chances are slim to none that your pediatrician uses one of these. www.igenex.com in Calif www.mdlab.com in NJ
More info would be helpful, but answering questions is not required.
When did the bullseye rash appear?
What dose of Amoxicillin is she taking a day?
Where are you located?
Keep in touch & ask as many questions as you need to. Will check back later.
Posted by DJP (Member # 5893) on :
Sorry for taking so long to get back to everyone, but I wanted to thank to everyone for all of your advice. There's a lot of information to digest and I thank you for pointing me to it. I've decided to talk with the doctor to extend the amoxicillin treatment for another 3 weeks and to bring her some of the suggested printouts. I also contacted a LLMD in our area to ask more questions and to hopefully see him if necessary. He was recommended by a lymenet support group leader and he is her doctor. As far as my daughter, the rash that the doctor thought was an allergic reaction to the medicine is gone and she hasn't been complaining about her head or knee hurting anymore so hopefully that was all part "hexing". Thanks again and I'll be checking in...
Posted by cbb (Member # 788) on :
Thanks for the update & please keep in touch. We care!!
Posted by DJP (Member # 5893) on :
Just spoke with a LLMD Dr.'s office in CT and asked a few questions. They recommended at least 3 mos of treatment because she not only had the bulls-eye rash but had/has other symptoms (fever,headace,chills stomache...). I was told they treat a minimum on 1 mos on amoxicillin when there is only the rash and no other symptoms... I also asked about co-infections and they can send out kits for my doctor to collect urine and blood to test for them. I'm going to have my doctor speak with the Dr. in CT about treatment... So once again...thanks to all!
Posted by cbb (Member # 788) on :
Was the LLMD in CT Dr Charles Ray Jones, the Pediatircian?
Posted by DJP (Member # 5893) on :
Yes, I didn't speak to him directly as he was with a patient. The person answering the phone was extremely helpful and was able to answer my questions. My pediatrician wasn't in today, but I will be speaking with her on Monday. I will also be seeing her on Tuesday for my 4 mos old daughters check up and will give her copies of the documentation that you pointed out to me. I'm hoping she will talk with the doctor in CT. I called the infectious disease specialist that she oringally consulted with and he gave me the standard answers. Three weeks is the American Academy of Ped standard... BTW, the bulls-eye appeared on Fri June 18 and the on-call ped said call back if the rash gets worse or she gets a fever. She got a fever on the 24th and we started the 800mg of amoxicillian for 21 days. We live in Massachusetts.
Posted by cbb (Member # 788) on :
That's good news that it was Dr Jones!! He & his staff are great!!
I hope that your pediatrician will take advantage of the wonderful opportunity to work with Dr Jones.
My grandson's pediatrician here would not even consider a diagnosis of Lyme. We had to take him out of town for a diagnosis. After treating with recommended dose of Amoxicillin, the child was not improving as he should, so the dr consulted with Dr Jones a couple times.
Progress was still very slow, so my daughter made an appt to go to CT. The diagnosis was Lyme Encephalitis, which means a long time for treatment, but as Dr J said "He's fixable." My grandson is 12 yrs old & has probably had Lyme for almost 5 yrs.
Keep in touch & let us know how your daughter is doing. We care!!
[This message has been edited by cbb (edited 10 July 2004).]
Posted by DJP (Member # 5893) on :
Good news...Dr wrote prescription for 3 more weeks of Amoxicillin (for a total of six weeks) and she is waiting to hear back from Dr. J in CT. Daughter seems to be doing fine, some cold chills here and there but not complaining of headache anymore. Thanks again to everyone for all of the helpful information and tips.
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