posted
hello. i am 30 years old and have been treating my chronic lyme for 6 months now w/GREAT success. pretty sure i have it congenitally, so have had it all my life.
my LLMD does not recommend pursuing or treating my 21/2 year old daughter unless she becomes clearly symptomatic. her western blot only showed bands 41.
she has recently developed an occasional tic with blinking her eyes. her pediatrician said they are common and can last 6 months to a year. after i told her i was concerned that she might have lyme through me, she said she will treat her with 2 wks of amoxicillin to be safe if i would feel better. of course, i said yes and picked it up today.
my questions are....
is it wrong to treat her w/o being symptomatic?
is there even a point to treating her for two weeks or should i push for at least 3?
thank you SO MUCH in advance...i appreciate any opinions.
Posts: 31 | From maryland | Registered: Oct 2007
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posted
There is a chance I was infected prior to the birth of both of my children (now almost 3 and 6 yrs old). For that reason, I had them both tested and they are positive for band 41 as well.
Neither of them have had any ailments that aren't typical of most kids (i.e. some ear infections, colds, etc). I've spoken to 2 LLMDs and have done tons of research on this and ultimately, it didn't really make sense to treat.
However, I can't tell you that there isn't a week that goes by that I don't worry about them.....however, 2 weeks of antibiotics probably wouldn't alleviate that fear.
Just my personal story....I'm sure your baby will be fine!
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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posted
hi, kristin. thanks for your response! i'm leaning toward asking for the 3 wk treatment since i keep reading that is more standard for children. it does feel wrong though to follow our pediatrician (who doesn't know as much about lyme) instead of my LLMD.
hope your treatment is going well. take care:)
Posts: 31 | From maryland | Registered: Oct 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It seems like only treating two weeks is playing with fire. What if she starts to Herx and then you are unable to get more antibiotics?
If you are convinced she needs to be treated, I would see a different LLMD. Are you sure your current doctor is really that educated in Lyme if she was thinking of giving your daughter only two weeks? It seems he or she should have suggested 3 at least. That is a red flag about that doctor to me.
I wouldn't let that doc treat my kid, honestly. If you have your mind set on it, see another doc. You don't want her to be mistreated the first time around. You probably don't even need to treat her though, though don't listen to me about that, I'm not a Lyme-Literate doctor!!!!!!
Best of luck to you!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hi, I have a 2 1/2 year old daughter as well and just went though your situation. I was bit at 8 months pregnant and had a positive western blot. Since then my girl has had random red flags go up but her doctor wouldn't test her. We went to our local children's hospital and they wouldn't test or treat her either. They said she wasn't symptomatic enough and that all her symptoms were normal childhood things that kids go through.
We decided to take her to Dr C in Mo since Dr J was too expensive for us. He has her on Ceftin for one month, Zithromax for one month, and then flagyl for one month. After that she starts Babesia treatment for a month. We then go back to see him.
It was hard to decide to treat but her symptoms were becoming more nurological and I was scared.
Some of her symptoms are going away like the night terrors. But I feel so scared that I don't know exactly what is going on in her tiny body.
I would favor pushing for longer antibiotics or taking her to another LLMD if possible. I know it's expensive- trust me! I will be thinking about you.
Also, I am giving my girl a children's multi-vitamin, vitamin C, probiotic, and Omega 3. There are other great supplements but that is all she is getting right now.
Posts: 183 | From Texas | Registered: Nov 2007
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posted
hello, thanks again for responses. dbourne, i am curious, did you ever get a positive western blot or just a clinical diagnosis for your daughter? i'm so sorry to hear you are going through this...i can imagine how hard it would be.
so far, i really haven't seen any symptoms in my daughter, so i'm not sure if i should be treating her at all. i had no intention of pursuing it, until her pediatrician suggested that today after i mentioned i had lyme.
it's so hard when there is so much conficting info out there:(
Posts: 31 | From maryland | Registered: Oct 2007
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posted
She had 4 or 5 bands that were positive but wouldn't technically be a CDC positive based on their standards.
Good luck. My thought with the antibiotics was the harm of not doing something that I should of was way worse that giving her antibiotics that she didn't really need. If that makes sense. I wanted to error on the side of caution.
Good luck with it all. PM if you would like. I can try to help.
Posts: 183 | From Texas | Registered: Nov 2007
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posted
In the past, Dr J in CT (Lyme Pediatrician) has been willing to consult with Drs who call him with questions. Don't know if he has had to change this or not.
I recommend you ask your pediatrician to call and get his opinion. He has treated over 10,000 children - babies to teens who have or had Lyme and Co-Infections.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Hey, if it eases your mind to treat for a few weeks and she isn't allergic, than I don't see the harm.
I've heard people share similar stories for asymptomatic children, positive band 41, etc. and Dr. J has not treated them.
Posts: 561 | From mass | Registered: Jul 2007
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My 5 yo son was bit, treated w/ 6 weeks amox and seemed fine. Then at 8, he was bit again, having foot pain and I was worried. I took him to Dr. J. He has a positive IGG, but his foot pain was being flat footed--we decided not to treat on Dr. J's recommendation.
My 2.5 yo dd was bit, treated with 6 weeks amox at the same time. She never resolved.
Her symptoms were systemic: eye pain, abdominal pain, joint pain, headaches, MAJOR fatigue, mood swings progressing to suicidal thoughts by age 3, lack of appetite, night terrors resembling Linda Blair, burning urination.
She may have also been infected prenatally since I was later dx. She was dx lyme babs by dr. J when she was 4. Within 10 days of starting treatment she was a different kid!
I also have a 3 yo boy who was breastfeeding when I was dx lyme/babs and he may have been infected in utero. So far he seems ok. He does have enlarged tonsils and some light sensitivity. He is going to Dr. J in Sept.
My feeling is that I am too paranoid to evaluate the symtomology well. I knew with my daughter that something was wrong even though everyone said it was in my/her head.
I am going to have Jones evaluate because tonsils could be nothing. Light sensitivity runs on dads side and could be nothing. If he is truly having no symptoms now, I'd rather not treat and wait. Then if he starts showing symptoms I have something to do!
I agree with those above that starting treatment without an LLMD which may induce a herx would make me scared. You don't want to just use enough abx to stir them up and make them mad and then quit.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
THANKS for all your opinions. catskillmama, sorry to hear you are going through all this w/your children and i hope the treatments are successful.
i think i will treat for a few weeks like the pediatrician suggested. i won't pursue it further though, unless she becomes symptomatic. i know she doesn't have any allergies or bad reactions to amox, b/c she has been on it before a couple of times for ear infections.
thanks again though.
Posts: 31 | From maryland | Registered: Oct 2007
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I am going through something similar with my now 17 month old son. I was diagnosed with lyme, babs, and erlichia four months ago. I was immediately concerned about my son as I am certain I've had this for five years and worried he could have it congenitally or through breastfeeding. I had him tested through IGENEX for both Lyme and coinfections. All standard coinfections (babs, erlichia, bart) came back negative, but his lyme western blot had a negative IGM (only band 41 was indeterminate) and his IGG was positive accoriding to IGENEX with a positive band 41 and a positive band 39 (specific for lyme). As far as I can tell, he has not shown symptoms of lyme. My LLMD contacted Dr. Jones and he felt the results warranted treatment. Dr. Jones feels that four months of amoxicillin and zithromax will be enough. Owen is nearing his fourth month now. However, I'm pretty confused because I called and talked to Dr. Jones myself, told him my son's results, etc... and he told me that he does not think Owen has Lyme, but that if me and my doctor wanted to treat him, we could. He said that he would probably not treat him based on his test result without symptoms. He said that the test results show an exposure to lyme, but not necessarily that he is actually infected with lyme currently. So I don't really know what to believe...does he have it or not? I can't figure out why he told my doctor one thing and he told me another. He must have misunderstood one of us over the phone. Regardless, I'm glad we're treating my son hopefully this will take care of it for good if he indeed does have lyme.
Posts: 63 | From Humboldt County | Registered: Jul 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Although my children were older when I tested them (4 and 5),
My husband and I always have had them at home.
No daycare....no baby sitters, etc.
They both had Lyme specific bands (neither one CDC positive).
After doing some research on my own and after having their pediatrician
Give me the run around on Lyme (mind you with her CDC handbook in hand ),
I found that both of my children had tons of symptoms.
One more physical like joint pain, difficulty sleeping, fatigue, etc.
The other had many symptoms of congenital Lyme such as being born with a hole in his heart.
Breathing difficulties at birth, slow to develop motorically, etc.
I gathered all of my info and we hit my LLMD's office.
My youngest is now in remission although I've noticed night sweats
Every night when I check on him.
My daughter is currently addressing Lyme and babesia also.
My thought is to research it well.
Strange things like red pinnas of the ears were a possible indicator of congenital Lyme.
My son used to have this all the time.
He doesn't anymore.
Hang in there Mom. It isn't an easy road to travel.
Especially when it involves your children.
Take your baby to a LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
thanks, lymer and geneal. good luck to you both w/treatment for your children. i am very confident in my LLMD, so if she does become symptomatic..i will look to him.
thanks again and take care.
Posts: 31 | From maryland | Registered: Oct 2007
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