How to Detect Lyme Disease in Toddlers, Part 2

www.healingwell.com/community/default.aspx?f=30&m=3004460

The above link is for the first part of this thread. It became so long that I was asked to begin a new one, linked to the old one!

So, here I am a few weeks later. Thanks to the input shared by other members of the forum, I went ahead and got my 3 year old tested for Lyme thru Stonybrook laboratory, which is on Long Island. She only had a few mild symptoms, ranging from low grade fevers, to bouts of throwing up (which I originally attributed to the stomach virus), a two week period of sleeping late and circles under the eyes (which I originally attributed to a growth spurt). But then she started wetting her bed, and her urine was so acidic it was causing a rash on her legs and belly - that's honestly when the red flag went up. A week after that she complained of her ankle hurting, and then a few days later the results came back. She was positive band 41 IgM

I brought her to a reputable pediatric LLMD in the city. He started her on amoxicillin 400mg three times a day (80mg/kg/day), which I thought was rather high, but he is going with an off label dosage. She seems to be handling it just fine.

He also wants her to take AL complex, starting next week. I am very weary about that one. We will see what happens.

He also has her on florastor, omega 3 fish oil, and vitamin D.

I was so frightened to be loading her little body up with all of this stuff, but I want to make sure she beats Lyme fair and square.

For those of you who don't know my story, I believe we both got bitten on a hike back in October. My symptoms got way worse than hers, b/c in January I had major tingling, numbness in extremeties, weakness, myalgia, you name it - and once I started to believe that I had lyme, I did loads of research. If I had not gotten sick, I would not have done the research, and I would not have even suspected that my little one had Lyme. So I am forever grateful for the way things panned out - I would suffer all over again to protect each of my kids (I have 3).

I am waiting on my other two kids' lab results - and am expecting them tomorrow. I just wanted to get everyone tested, just to be sure, although I am worried that my son may have it. The reason behind this thought is bc while he was being treated with amoxicillin for an URI (which he also complained of severe stomach pains), he crawled out of bed two mornings bc his legs hurt so bad, and a circular rash appeared on his leg. If I am correct, then the amoxil brought out these symptoms bc he does indeed have lyme. (I have not d/c his amoxil for this reason, an extra two days won't hurt him, until I get the results back)If I am correct, then all I can say is, there must have been millions of ticks out on that trail.

Some asked how my little Celine is doing. She obviously herxed after a few days of her meds - she slept, and slept, and took so many naps. She also got very cranky. That passed and then she was great for a few days. Now this past weekend she has been wetting her pants and her bed nonstop - today I had to change her like 5 times. This part is killing me, bc although I am tempted to put a pull up on her during the day, I don't want her to regress. This is a tough one. I am also wondering if this is happening because it is another form of a herx?

Lastly, I have not forgotten about the possibility of a coinfection. I haven't spoken to her Dr yet, bc he is away in China at the moment (joy), but the other day she woke up with a scratch like rash on her face. I know Bartonella can cause a streak like rash, but I don't know how long it lasts. This rash was there for maybe 3 hrs and then it was gone. Whatever the case is, I sincerely hope the amoxicillin will be enough, bc I would hate to add another antibiotic to her regimen. She is SO tiny, and so precious!!!

My heart was so heavy with worry when I brought her in for her first appointment. The Dr even asked if I was getting overwhelmed when he was going over the treatment plan with me, and I just lost it right there. But he was able to lift it up and explained that he's only treated kids with late stage lyme, since it is so difficult to detect in kids, and that it is an absolute priviledge for him to have the opportunity to treat and cure her. He also said that I really have to work on her Vibrant personality!!

Post Edited By Moderator (Traveler) : 3/24/2014 6:57:59 AM (GMT-6)

Thanks Stacestar! I do hope the accidents do pass, and I am sure they will. I am glad you started your son on treatment early too!! She is only on her second week of antibiotics, and her symptoms started mid - November, so they seem to be on the same path! And I know, I do have to be patient!! =)

Thank you!

If antibiotics are not working the way you would like, please, please investigate using herbal antibiotics. We are finding them to be extremely effective.

Maine...God bless your doctor! She will be add to my short list of doctors who I have faith in. What a miracle you found that card. May God bless & heal you & your kids.

When I am overwhelmed with fear there are many things I hold close to my heart and this is one of them.

Isaiah 40:11
He tends his flock like a shepherd:
He gathers the lambs in his arms and carries them close to his heart;
he gently leads those that have young.
(NIV Bible)

wonderful news, beyond wonderful, Maine!
thank the Lord!


and Dtav, thank you, I will keep your daughter in my prayers too!

Yay that there are kind, generous, selfless people among doctors!

about pull-ups and wetting - if you ask your daughter directly, something like

"Honey, I think Lyme disease might be causing you to wet your pants right now. I was wondering if you'd like to have some pull-ups around for when that happens. Some other mommies say their kids had days with accidents even though they were big, potty trained kids too. We could have you wear them just when you seem to have trouble, then stop when you are getting all better. If you have an accident then you could wear a pull up the rest of the day, in case. What do you think? You should still use the potty any time you can."

Have you asked her why she thinks the accidents are happening? You may get a surprising answer.

Since you know she has Lyme give her the benefit of the doubt when ever you can, but tell her straight you need to know she's trying her best to do the things you expect. That's where the on/off brain fog really makes it hard at our house. I have to judge what is basic kid resistance and what is real confusion.

Good luck everyone.

my kids are on one herb and a few nutritional supplements - but I would strongly advice you against giving them anything without the supervision of a Dr. because they are so young! That's just my opinion. So glad you found us! There are quite a few of us moms on here with kids fighting lyme - so you are most certainly not alone!

Hi Lauradora,

Sorry to hear about your little boy. My son (4) was just dx with lyme end of Jan.

Those two things can be symptoms of lyme in children .
I know my son had those symptoms before he started antibiotics in Feb. and he still has the crankiness. He was fully potty trained, but got to where he was having 3-5 accidents a day, 4-5 days a week.

The accidents are gone, but I feel like with my son the crankiness/whininess is a little amped up lately, which I just learned today (thank you Chapelle) can be a sign of herxing,

My son has been on abx for 6+ weeks now, with improvements, and most noticeably in the last couple of weeks.

At first when I read your post I thought he may still be on the abx, but after reading it again, do you mean that he had only 10 days on antibiotics and now is finished?

I hate to be the one to tell you this (if you haven't heard this before), but from everything I've learned and read and experienced, 10 days of antibiotics usually isn't going to take care of it if the infection has had a chance to be in him for awhile (and it doesn't have to have been a long while either).

How long from when your son first started symptoms to when he was diagnosed?

I don't know what the situation is like there in the UK with finding a lyme literate doctor, but that's what I would recommend.

One thing I'm always reminding myself about (and others here too mention) is that it's said, by very experienced doctors, that children can recover well from lyme, as long as the right treatment is given.

Others will probably come along too with ideas and support. I hope that you can find a lyme literate doctor for your son.
I wonder if it's difficult to find a specialist over there, if maybe the doctor you do have would at least prescribe the antibiotic again. Then he'd be getting tx while you were looking for a lyme literate dr.

Post Edited (stacestar) : 4/1/2014 10:04:53 PM (GMT-6)

Thank you for your advice. We think he got the tick bite in early October as that's when he got the bulls eye rash. There was a big thing about false widow spiders arriving in the uk at the time so we thought it was a spider bite. After numerous trips to the dr I demanded a test for Lyme and he was diagnosed early feb. They did do a pilot clinic over here but it never got commissioned. Good idea to start a new thread. Thank you. And thanks for the advice on the clinic. I will look that up now and contact them. I will also arrange a trip back to my dr to see if I can get a referral anywhere. Everything my little boy does at the moment I am linking back to Lyme (whether it's related or not!). I did think 10 days wouldn't be enough too! There was a massive initial improvement in his laziness when he took the antibiotics! He hasn't been poorly at all with it though. Not even a high temp the whole of the winter! It's such a horrible thing isn't it and so hard to get proper treatment and
Advice. Thanks so much for your support xxx

Thanks California cat. I will definitely start keeping a diary. At the moment a lot of friends are saying their child is behaving in a similar way and I haven't not ode any cycles .... However, that could be because I haven't been looking! Its so difficult with little ones. Milo is funny though as he only whinges for me. He goes to his cousins 2 days a week and nursery 2 days and they say he never whinged for them!!! Definitely going to get him seem by someone if I can get a referral though. I am glad to hear your little boy is doing well. I think being aware your child has it in the first place is half the battle so you are aware when things happen that they may be linked to Lyme
X

Thanks stacestar. Is your son in long term antibiotics? And doing well? I am just hoping we can sort this thing as worried about the impact on my little mans future :0(