I am a distraught mom with a 4-year-old girl who has Lyme. She has had it for about a year. Her symptoms are worsening. She has only been treated with 7 weeks of Amoxicillin when she was first diagnosed October, 2005 (at that point she had broken out with the multiple bulls-eye rashes on arms and legs.) The doctor here wanted to take a "wait and see approach" as it seems in CA there is just not much experience with Lyme disease. A doctor in another state is suggesting Biaxin and Chloroquine for three months. The doctor in CA is uncomfortable with the Chloroquine due to possible eye problems with long-term treatment. Has anyone had a child around 4 years old treated with this drug? Are their eyes okay? The doctor in CA suggested IV ceftrioxine, does this drug work? We're so confused and upset (meanwhile my daughter is not on any medication and is growing worse everyday.) Thank you. Pam
Posted by treepatrol (Member # 4117) on :
ABX = Antibiotics Also theres a link at bottom this post called Newbie Links it may answer a lot of questions for you.
[ 19. May 2006, 02:56 PM: Message edited by: treepatrol ]
Posted by bettyg (Member # 6147) on :
Welcome Pam. Breaking this up so we neuro lymies can read/comprehend it.
quote:Originally posted by My little girl's mommy: Hello Dear People:
I am a distraught mom with a 4-year-old girl who has Lyme. She has had it for about a year. Her symptoms are worsening.
She has only been treated with 7 weeks of Amoxicillin when she was first diagnosed October, 2005 (at that point she had broken out with the multiple bulls-eye rashes on arms and legs.)
The doctor here wanted to take a "wait and see approach" as it seems in CA there is just not much experience with Lyme disease.
A doctor in another state is suggesting Biaxin and Chloroquine for three months .
The doctor in CA is uncomfortable with the Chloroquine due to possible eye problems with long-term treatment .
Has anyone had a child around 4 years old treated with this drug? Are their eyes okay? The doctor in CA suggested IV ceftrioxine, does this drug work?
We're so confused and upset (meanwhile my daughter is not on any medication and is growing worse everyday.) Thank you. Pam
Hi Pam, very sorry to read about your daughter's lyme.. Another person to contact would be BITING BACK, who had a 7 yr. old son diagnosed 2 yrs. ago w/lyme ... not same age, but might be helpful.
I'll copy/paste my newbie links here for you, but checkout TREEPATROL'S NEWBIE LINKS well! It's a goldmine of info.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
Bettyg
Posted by tabbytamer (Member # 3159) on :
Hi MLGM,
Welcome!
Actually, there is quite a bit of experience with Lyme disease in California.
If you post a request over in the "Seeking a Doctor" section, something like "looking for LLMD in California for 4 y/o", you'll get several physician names. Perhaps one of them would be willing to consult via phone with your daughter's current doc?
LLMD = Lyme Literate Medical Doctor
So sorry your daughter is ill. But glad you found us. Please don't hesistate to ask questions or ask for continued support during this difficult time.
I'm sure more will be along in the morning that have personal experience with treating young ones.
Also know that children, when adequately treated, can bounce back from this disease wonderfully. So, great job, mom, searching for answers Posted by Lymetoo (Member # 743) on :
up for more help
Posted by lymster (Member # 5964) on :
Hi Pam:
Welcome here!
Is your daughter seen by an LLMD? If not, you need to get her to one of them, CA has several. I am a Lyme patient along with my 8 year old son, who has gestational Lyme, we live in WA but our LLMD is in CA.
I had learned that there is no "standard" combination of drugs given to all Lyme patients in the same exact sequence. LLMD'S will cater to every patient, at least is what our does. My son and I had taken some of the same antibiotics, and some very diferent kinds as well.
My son has taken: cedax, zithromax and septra, everything oral. After a year of treatment, he has improved a lot, but still has some problems. I take hope on the progress that has been made.
PLEASE, take your daughter to an LLMD, DON'T LET THE DUCKS mask her symptoms with two weeks of antibiotics here and there or talk you into "this is normal" for kids her age. They did that my son and I, and I lost 7 years of proper treatment; that probably will have a profound effect on his final treatment outcome.
You are her mother, you know deep inside if something is wrong or not. The sooner you get children treated in life, the best their chances are to recover the most.
Take care, Lymster in WA
Posted by DJP (Member # 5893) on :
My 4 year old with Lyme since 2 1/2 takes Zithromax and Omnicef.
My children see the best pediatric Lyme doctor, Dr. J in CT.
He is very busy, but maybe your doctor could consult with him.
Sorry about your daughter and best wishes.
Posted by 5dana8 (Member # 7935) on :
hi My mommy's little girl
I am so sorry to hear about your 4 year old with lyme.
I don't have alot of knowledge in this area. but you may want to order a copy of lyme times. They have an entire issue devoted to children.
It's good to have to take to a LLMD and to reference for medications. Children manifest lyme in different ways than adults.
There is a long article written by a famous lyme pediatric specialist Dr.J.
It's called "Children's treatment Issue" summer 2005 number42
1-click on the above webb site 2-and click on order lyme times 3-click on $10 suggested donation-order single issues. 4-It's the forth one from the bottom
Take care and I hope your little girl can feel better soon
Posted by iceskater (Member # 8655) on :
Hi! I am sad that you are here for the obvious reasons. Please know that there is wonderful support, friendship and love here on this board to help each other out. I wish healthy people had the support and friendship that is seen on this board on a daily basis.
I was a registered nurse before all of this started. My area was pediatric home care with trach and ventilators. I did very high tech work. I am slowly learning about ped lyme. Everyone here has given you very good advice.
From my experience as a peds nurse, I can tell you: children, usually get sicker than adults with things like colds and flus. Body composition in terms of nutrients and ratios are very different. Having said that, I will also tell you that by the flip side of the coin, kids immune systems are usually stronger than adults: younger and not as much exposure to toxins in the environment like adults. So, they have a tendency to do much better than adults with bounding back from heavy duty things( like chickenpox,measles, etc). Kudos to you for being here and getting treatment for your little one. You have very good odds in your favor that you can overcome this and little one will get better. Let anyone of us know what we can do to help. We are only a computer click away. You hang in there yourself. Love, hugs, and prayers. Stay strong!
Posted by elle (Member # 7721) on :
My now 7yo, was 6yo when he started treatment. He weights less than 50lbs and takes flagyl and zith.
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