posted
Have posted here before about my 5 yr old. Quick background, rash Sept '06, misdiagnosed by pedi, diagnosed May '07 when knee blew up. Two rounds of amoxycillin.
Knee's calmed down, still complains of occasional aches, but he's an active, clumsy 5 yr old, tough to tell. Has had gastric issues (vomiting) since infection.
2 months ago, began having hallucinations, tingling headaches,vomiting/gastric issues persist, 2 years now.
Have been to 3 different "ologists", no answers. Pedi neuro felt it might be a "phase". Though did order EEG (normal), MRI scheduled Sept 3rd. Tonsils coming out Oct 9th.
Son sick today, (tonsils), while there spoke about lyme. Requested referral to LLMD, basically shot down.
Pedi said, son had "adequate treatment" also said have to be careful to not over-treat. Also has no explanations for most recent symptoms, his reply "sometimes we never know why".
Is now sending us to an infectious disease specialist. Doesn't want us to leave well-known children's hospital in Boston where he has seen all his "ologists".
This is the last hoop I'm hopping through. So frustated, cry when I think of everything my son is going through,no one has answers, no one is helping.
Don't understand the controversy, Dr's have no issues treating patients with tetracycline for a length of time when treating acne.
Want my son to see Dr. J, so scared for my little guy. But finances play a part, insurance will not help. Will be a hardship, will pay out of pocket if have to, though have no idea about $$ this might cost.
Want to scream. Bad day here, sorry so long.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
adamm
Unregistered
posted
Adequate treatment is generally considered to be that which
covers all forms of Bb, intra- and extracellular, is capable
of acting against all probable coinfections, and continues
for 2-3 months after all symptoms resolve.
I'd recommend that you post in Medical about this.
got to Lymeinfo.net and lymecryme.org to find out
all you might want to know about TBI's.
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bless your heart!
It is hard enough to see adults going through this craziness in the ID world... but to have children abused is a sin!
May I suggest?
Bartonella.
There is a Quest (standard lab- most ducks use- most insurance covers) that does a Bartonella Antibody Panel... which tests for 2-3 strains.
Many folks show positive on this test rather than the PCR's sometimes used elsewhere. If he were to show positive, then the ducks would HAVE to listen.
But that never is a "for sure" as they are pretty darn dumb if you ask me.. and even more stubborn.
BUT... don't hesitate to get to Dr. Jones ASAP. Call them today.
Call them NOW!
Tell them Tincup said to call them to say she loves them all up there ... and then tell them you'd love to have your boy seen but that you are having payment issues and would like to know if something can be arranged.
You and your precious one have been through enough already.
Don't let the nightmare continue.
Don't let the ducks suck the life out of you.
You won't win at their game... and you will only delay getting the best help there is out there.
I would also NOT have the tonsils out UNTIL after Dr. Jones has a chance to see your son. Sooooooo .... get an appointment ASAP, please.
Good luck and please lettuce no what you find out.
My son's pedi diagnosed it (after initially misdiagnosing him 8 months earlier.) He tested him for it after I brought him in with his knee so swollen he couldn't walk.
I do feel like I'm just being led to another of his professional friends, but keep hoping someone will treat him. So there's no hope that the infectious disease doc will treat him? Ok, don't answer that, I know the answer.
Thinking I'll write up everything we've gone through and send a fax to Dr. J.... Just seem so overwhelmed.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| 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!
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
I am sure he would not want your child to suffer because of a lack of money.
Printer-friendly view of this topic