posted
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!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
up for more advice..
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Cobweb
Unregistered
posted
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.
posted
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
Posts: 129 | From NYC | Registered: Sep 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
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.
Best of luck and God Bless, Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic