posted
My 6 year old daughter has lyme disease. Probably had it for 5-6 months before getting diagnosed and treated. It has been a long 8 months dealing with all her symptoms that totally changed her in many ways. She just came off medication and we are watching her closely. Unfortunately she immediately caught a virus once off the medication. We are following up with neurological testing for cognitive problems. If any one has a young child with a similar situation please contact me.
Thanks.
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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quote:Originally posted by Ansel: My 6 year old daughter has lyme disease. Probably had it for 5-6 months before getting diagnosed and treated. It has been a long 8 months dealing with all her symptoms that totally changed her in many ways. She just came off medication and we are watching her closely. Unfortunately she immediately caught a virus once off the medication. We are following up with neurological testing for cognitive problems. If any one has a young child with a similar situation please contact me.
Thanks.
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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posted
My daughter was symptom free for about 5 weeks. She is having blood work done in a couple weeks. She still tires (not like she did) but I was told that will take a while to deminish.
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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bettyg
Unregistered
posted
welcome ansel to the board; glad you found us.
i don't have children, but i do have info galore...
WELCOME, would you like a copy of my newbie package of 112 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 112 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks
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posted
Ansel, most LLMD's will not stop treatment until the patient is symptom FREE for at least 2 months. I hope your daughter's treatment was not stopped too early.
Hopefully, you'll have more mothers coming along soon to say hello!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
ansel, we lost our ability to send PRIVATE MESSAGES LAST NIGHT due to administrator's decision since we've had problems with pms for awhile.
so please go to MEDICAL and look for a post by TREEPATROL .... NEWBIE INFO; over 1000 links of good lyme info; lots of kids/parents info there! **********************************
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posted
Thank you to all that have steered me toward more information. I am doing a lot of reading of articles on this site. It's quite overwhelming all the information but I am glad it is available.
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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bettyg
Unregistered
posted
ansel, not to scare you more, but this is what our lyme journey is all about; information overload and what is the RIGHT CHOICE FOR YOU/FAMILY MEMBER!
just keep an open mind when reading and research more on YOUR DECISION so you feel good about it ok!
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posted
hi Ansel - my 3 children and i all have lyme. it is amazing how different this disease has affected the 4 of us. what works for one does not work for all. this site has alot of info - i have visited here often, but just registered recently. you are on the right track, gather as much info as possible.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Ansel.
I have two young children (5 & 6) with Lyme.
Luckily no cognitive issues with either.
Not yet and hoping to never have them.
My children are almost at the one year mark for treatment.
Co-infections are still a possibility.
My oldest gets every virus (viral) known to man and then some.
Every one of them really set her back.
Please Pm me if I can be of any assistance or support.
Our LLMD does a challenge following two months of being symptom free.
For us adults it is 1500mg of flagyl on Mondays followed by 1500mg of biaxin on Tuesday.
I am not sure what it is for the children, but I will insist on it.
This challenge runs once a week for up to 8 weeks.
If one can remain symptom free...then remission is achieved.
If at any time a herx or return of symptoms is noted, then back to the antibiotics we go.
May be worth doing just to make sure.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I'm another one of the moms here. My child is 5 soon to be 6, and was diagnosed last July.
We can clearly trace symptoms back several months before that, with possible symptoms (GI issues) dating a year before that.
We too, have had a rough road, which like that of many others has probably been complicated by co-infections.
Information overload is definately an aspect of coping with this illness, but on the plus side there are lots of people here to offer support.
One of the challanges that I have found with having a young child that is sick, is the child's limited ability to recognize and communicate about symptoms.
FOr example, my child did not know what a headache was, until I named every body part and asked which one was hurting.
With a probable onset at the age of 4, a child cannot remember what it feels like to feel good.
If your child was older at the time that she got infected, then this may not be as much of an issue for you.
I do wish you the best, and hope your child is at the end of this experience, rather than at an interlude.
Take care. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Thanks for your posts. Unforturnately my daughter is back on antibiotics as of yesterday. She was off for 20 days but symptoms were all returning--discouraging. My daughter also was not/is not good at sharing her symptoms. It was obvious to me that we were loosing ground quickly and need to get back on antibiotics. Can anyone share pediatric lyme specialist in Connecticut/NY area?
Thanks. nas
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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