posted
I know there have been many threads on this topic, but I am getting so lost in all of them I was hoping to find some help with a new topic so that I could tell our story and get some input.
I have lyme + co and am being treated (3 months in). I breastfed my daughter while having lyme, so we had her tested and her Igenex IgG came back positive.
She wasn't showing too many signs, so my LLMD suggested holding off on treatment. If it ain't broke don't fix it. Etc etc.
But she is really showing some symptoms now and I'm starting to feel that mama gut instinct that we should get her some abx.
I cannot find anything about pediatric lyme treatment protocols. What is the standard duration of amoxicillin? I know we use the term standard treatment losely in the lyme community because we are all so different, but I am hoping someone with some experience could weigh in.
Here are some of her symptoms. She is 2.75 years old. (3 in July) -severe mood swings and anger -fearful of peers and play dates and even her friends -severe clinginess -hive like rashes that don't itch or hurt. Come and go within an hour. 4 week cycle. -ankle pain -abnormal fatigue -nightmares/terrors/sleep issues -dazed/spaces out -and a new one- eyes darting from side to side (mine do this)
I'm assuming that these are standard lyme symptoms for toddlers. There is not a lot of info on the web. She doesn't have severe joint pain, headaches, etc. We just want to make sure it's lyme symptoms before we treat.
Again, what is the "standard" course of abx treatment for toddlers? What are the risks? Do these symptoms sounds familiar?
Thanks for helping. This is such a hard decision to make. Especially when I'm so foggy from my own lyme.
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
With a child that very young, none of us should give you treatment suggestions- obviously you know this, but 2 1/2 yrs. old is quite different than treating a 6-7 yr. old.
There aren't too many LLMD's that have experience treating that young, so if you have one, please seek that Dr. for guidance.
My middle child was born with congenital infections, it was a long road to figure it out. Looking back, her symptoms matched what Dr. J, the famous Lyme pediatric physician, has on his list of possible signs-
Colic, late to hit physical milestones, sensory issues, etc. Then we had PANDAS- now called PANS, many finding Lyme and co. the root cause, not just or only strep infection.
One deep regret I have is having this child get multiple vaccinations, on the current excessive CDC guidelines.
Her immune system was not working well, and adding toxins and more diseases from vaccines- not good. At all.
Also, many people around me, including Dr.s, tried to dismiss my concerns. I KNEW something was not right- but there is the part that wants to believe them, that maybe it is just a phase, just a personality, it will pass, etc.
I have 2 other healthy, neurotypical children w/ no issues- what you are describing, your baby does need some help.
You've caught it early- that's great- now you need a proper Dr. If you don't have one, post in Seeking. God Bless--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Hi my son is currently being treated for Lyme - he is about a couple of months into it. He will be 3 in October.
His main symptom was hand and feet pain and his Igenex was positive. We think he got it from my wife who was treated for Lyme in the past.
He also has extreme tantrums/rage, which is sometimes hard to attribute to Lyme or just bad toddler behavior.
For him it was a slam dunk that we had to get him on ABX with an LLMD because the only other option was to pursue a juvenile arthritis diagnosis which involves risky immune suppressing drugs like methotrexate, biologics, etc.
For your child it seems less obvious but given her positive Igenex and symptom list I would say you should look into treatment.
posted
Thank you so much for your replies. It is comforting to know we are not alone.
I am wondering if an herbal approach might be a good idea. Although, I can't find any treatment plans or info on that.
Yanivnaced- how is your son handling treatment? What are his side effects? What is the dose?
Posts: 11 | From Chapel Hill, NC | Registered: Apr 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
The dose shoulld be sent via PM. NOT posted publicly.
Also, just a heads up...lyme and children, those of us with lyme and in support groups see these poor kids with lyme all the time. My heart breaks!
It is bad enough being an adult with lyme, but sick kids break my heart.
That being said, the medical community (LL's excluded), believe often that a parent treating a child for lyme is the same as child abuse.
Please be VERY VERY discreet about child lyme treatment on public forums, and very cautious about discussing lyme treatment with any non-LL pediatricians or doctors.
They may take your children away on the grounds of abuse.
It has happened to parents in BC and Ontario.
Just a word of caution about discretion.
And bless you for pursuing a better future for your children. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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