Pediatric lyme treatment and symptoms

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.

Thanks :)

Hi mamasmith,

My son who is four has lyme. He started showing symptoms last Sept., those were emotional symptoms then, i.e. increased irritability, occasional fits on new scales, and sudden separation anxiety.
Then in late Oct. came the physical symptoms starting with foot pain, tummy aches, occasional headache and sudden motor tic (that one lasted only about 4-6 weeks).
Then it progressed, and by mid-November he was having all the above, but also migrating joint pain, and muscle pain, and fatigue, tingly in hands and feet and dizziness. Plus dark circles under his eyes and still the anxiety sometimes; sometimes more than others.

Not that I'm am expert, but since your daughter tested positive and she is having symptoms, personally I would want to start to treat for it.

The symptoms that sound familiar to my son (who was actually about 3 1/2 when they started) are the mood swings, and anger (toward me; I remember thinking "what kind of new phase is this?")
also the clinginess -my son's sudden separation anxiety. He would wrap himself around my legs before I went to work, and I only work twice a week, and beg me with tears to take him with me. He did the same with my husband.
The ankle pain- my son had joint pain often
and the abnormal fatigue; for my son it would come and go, but it got worse as the weeks went on.

I think you are right that they probably are standard lyme symptoms. I don't think they need to necessarily be severe.
Also, one thing I noticed is that unfortunately, my sons symptoms got worse the longer it went on before starting antibiotics.

I suspected lyme by early November (but the pediatrician reassured me it's "rare" and not it. ugh.) and then I suspected it again, seriously enough by late Nov. that I made an appt. with an llmd; but by the time we had the appt. with the llmd and tested him it wasn't until early Feb. that he started antibiotics.
So in all, his symptoms started in late Sept. and he didn't start antibiotics until the beginning of Feb. b/c of all those things.
And in those months of November, December, and January with no treatment it got worse, very noticeably.
His fatigue snowballed, his complaints of pain increased, everything picked up and got worse. It was horrible.
Personally, I would treat your daughter if I were in your position. I would follow your gut. I've always heard time is of the essence with this.
I know your daughter is younger, so I don't know if that changes treatment protocol, but my son turned four in Feb., and what his dr. is does is treats with antibiotics for one month past last symptoms.
He's been on them now for over nine weeks. I hate him being on them this long, and the fact that it will be longer still, but I hate even more the thought of his symptoms returning.
He's doing very well, but I have to admit that I was discouraged today, b/c after a month of no joint pain complaints, yesterday and today he had one (ankle, and knee), and a little fatigue today too.
But overall he is doing so much better that I feel like it's 90% cleared up and healed. I've read and heard that children can recover more quickly than adults, and since my son is doing significantly better within two and a half months I believe it.

If you have any other questions just ask! I'm glad to share. And, there are lots of great moms (and dads too) on here, willing to share and give advice.

I hope your daughter begins to feel better very soon!

Hi,
My grandson was treated with two weeks of Amoxy after the EM rash appeared. Two years later (at age four) he started with the mood swings, anger, pain, insomnia etc etc. He was treated for another month of Amoxy. and his Lyme doctor and Pediatrician decided to stop treatment and see if anything came back. Apparently this is fairly standard with pediatric Lyme, they do the minimum of treatment and then let the immune system take over.

I was horrified by this and his parents agreed we should treat him more but as he wasn't tolerating the antibiotics well, started him on the Cowden Protocol. He is doing very well.