I am preparing myself for my daughter's appt. with her pediatrician.
Not sure if she will be any help, but would like to give the pediatrician an opportunity to
Possibly treat my daughter.
My neighbor and I have printed out Dr. B's guidelines for treatment of children.
Thank God my neighbor is a nurse....she was able to figure out
Dosage of amoxicillin based on my daughter's weight.
I have gone through a Lyme symptom list with my daughter, however as she is 5
It is not always easy to discern symptoms and some just don't apply.
I have a couple of questions.
I believe she may also have babs and bartonella as co-infections.
How long do we do the penicillin? Two months post symptoms?
What do they use to treat co-infections in small children?
I am assuming she will need a longer cycle than the standard duck protocol of 28 days....
Obviously, if I don't feel that the Pediatrician is receptive or willing to speak with LLMD
Regarding treatment, I will be taking my daughter (and possibly son) to LLMD out of pocket.
Expense does not matter when it comes to my children's health.
I appreciate any comments or suggestions.
I am still trying to assimilate my daughter and Lyme....
Still worried what my son's results will be...
I want to be the best advocator for my child or children as the case may be.
Your help is deeply appreciated.
Hugs,
Geneal
Posted by Sojourner (Member # 9424) on :
This is just my humble opinion, but I wouldn't even waste my time or energy trying to get the Ped. to treat.
Your daughter needs someone who you don't have to educate, someone with a deep understanding and acceptance of this very complex disease(s). That's not easy to find, I know, but well worth it in time and money.
I have a 10 yr old being treated currently by a llmd. I am and have always been greatful that he is way ahead of the curve, can educated me and properly care for my daughter.
I know I could not emotionally handle worrying about my daughter and worrying at the same time if the doc knows enough to treat properly.
Having a good llmd that knows the ins and outs helps not only in my daughter's physical well being but also my emotional well being.
I wish you success! and Happy Mom's Day!
Posted by Geneal (Member # 10375) on :
up for more advice..
Posted by Cobweb (Member # 10053) on :
This isn't something you want to hear-but it has played a major role in the attitude of my 15 now 16 year old towards Lyme and treatment.
After I had been in treatment for a while I realized my daughter's symptoms all fit under the lyme umbrella. I had her tested by my LLMD, she was positive(by Igenex), and began treatment, by LLMD.
Her pediatrician was in the Johns Hopkins camp. With my daughter present in the room, the pediatrician went to great lengths to cast doubt on any testing or treatment outside mainstream medecine.
Of course a 5 year old is much more innocent and perhaps not as comprehending, but probably smart enough to know Mommy and Doctor are in conflict if the doctor does not agree with you about treatment or validity of testing.
Bottom line-I suggest she not be in the office when you do discuss Lyme Disease-unless you find out your Pediatrician is in full support of your desires.
Carol
Posted by bettyg (Member # 6147) on :
up for day posters/repliers....
Posted by nikkib (Member # 10016) on :
My 2 1/2 year old and 5 year old take zithromax and mepron for babs (as per Dr J in CT). Hope this helps. -Nikki
Posted by CaliforniaLyme (Member # 7136) on :
My daughter did great on Cedax and then amoxi kept her gains- but she needed Mepron and Zithro for a long time- hated the liquid zithro- I tasted it once at her urging- YUCK!!!!!!!!! But she needed it-!!! Doc J consulted with our LLMD (Doc S, SF) free of charge for her care!!
She has been in remission for 5+ years now-
Watch out for her regular doc- my daughters regular doc is a family practice guy who happens to be an LLMD-
He USED to be this idiot who repeated "There is no Lyme disease in CA." and praised this anti-Lyme Rheumie to death because HE had arthritis and saw him himself-
same bad pediatrician let this other little girl with tick bite, bulls-eye go untreated- the family got tick tested had positive results- demanded tx- so had tick bite, bulls-eye AND positive tick- no tx- warned parents they were Munchausens!!! warned them he would call CPS if they treated her because THERE IS NO LYME IN CA!!!!!!!!!!!!!
they called me hysterical-
That was 2 years pre-study that showed our county has the highest % in all of CA and more than many parts of back East!!!!!!!!!!!
He retired by then. Darnit!!!
So be careful. Especially if the M word- Munchasuens- is mentioned.
People do bring it up re Lyme!!! Be careful/ Best wishes, Sarah
Posted by Geneal (Member # 10375) on :
I didn't even think about the m word.
I have always been aggressive about my children's health care.
Yes, I do take them to the doctor when I see or notice something abnormal in their physical being.
Because I have been vigilant, we have caught ear infections (children are asymptomatic), strep throat, etc.
I believe my child's pediatrician knows of my experience in the medical field...
However, thanks for the heads up...I never thought of that.
Scary world and situation.
I think I will be satisfied if I can just get my daughter started on antibiotics
While awaiting an appt. with my LLMD...
Am still awaiting my son's results.
If I don't get the response I want from the pediatrician, I have already decided to by-pass her.
I would spend all of my money to get my children the right treatment.
Thanks so much for the heads up.
I really appreciate it.
Hugs,
Geneal
Posted by lymewreck36 (Member # 4395) on :
Dear Geneal:
Let me see if I can help. YOu know, I have three daughters with lyme that have been infected for years. Youngest daughter infected since 3 years old. She is now 8. Middle daughter probably since the womb, and reinfected in second grade. She is going into high school next year.
Oldest daughter infected after a girl scout camping trip end of 5th grade. She will be a junior in high school next year.
All children infected at least 1 1/2 years before diagnosed. All chronic.
We saw Dr. J in CT when I lived up there. Here's what he did.
My little one was started on biaxin/amox while we waited for the mycoplasma (sp?) test to come back. It came back positive.
He changed the treatment to biaxin/bactrim because bactrim treated the co-infection.
We then moved away to Alabama, and started seeing a doc here we thought was ll.
He changed my little one to zithro/cedax, and she herxed like crazy. Doc became afraid and called the herx an "allergic" reaction even though she had NO hives, swelling, or throat closing.
It was a pure herx. Headaches, sleep disturbance, knee and leg pain.......elevated temperature. Scared me to death.
She is now on zithro/omnicef. He had a herx when we began that. She also takes one flagyl pill a week of 250 mg. That's all.
Make sure liver tests are performed regularly. Dr. J in CT told me that children's organs are much more fragile than adults, so you have to be extra careful.