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Posted 4/23/2015 3:17 AM (GMT 0)
I met with my LLND today and in the course of our conversation she asked how my kids are. I talked to her about my oldest, who is 8, and told her the issues we've had with her, essentially since she was toddler.

My LLND says it's very possible has Lyme based on what I said, so I will be getting her tested. She said it sounds like her nervous system is totally out of whack. I'm inquiring here to see if these were common symptoms for your children with Lyme.

She's always exhibited symptoms of ADHD, but her pediatrician said she does not meet the criteria, mostly because she is fine at school.

- highly emotional
- forgetful (I can tell her to put her plate in the dishwasher as she's leaving the table and she'll have forgotten by the time she reaches the sink)
- needs constant stimulation
- extremely high energy and no matter how much physical activity she gets she is NEVER tired; when she was a toddler reading her a book entailed me sitting on the couch reading and her running back and forth across the room
- isn't tired for bed until long past when her peers go to bed
- cannot sit still
- virtually no impulse control

I'd appreciate any insight, especially from those with kids with Lyme.

TBH, this would be kind of a relief, because the older she gets, the harder she is to deal with, and I've been worried about her need for stimulation and adrenaline as she gets closer to the the age of sex, drugs and alcohol.

*******************************
UPDATE

I just wanted to update everyone on my daughter's test results, they were positive. It took me awhile to go through with the test because I think I just wasn't ready to face it if she did have Lyme.

Now that I know she does, I'm not sure how I feel about it. Of course there's grief; no one wants their kid to have a chronic illness. But I'm also a little nervous about treatment - who I thought she was might just be the symptoms of her disease. Thinking that my child's personality is different from what I've been experiencing for almost 9 years is kind of scary! Not that I would ever not treat because of this, but I just wonder who she might be underneath all of her symptoms.

My LLND treats children, so we have our first appointment with her next week, but I have some questions I thought you all might be able to help with:

- How do you tell your child they are sick with this? I know I'll be emotional, I don't think I can't not be. She also is very aware of how sick I've been and still am sometimes and has made it very clear she NEVER wants this disease. How do I make her understand the seriousness of it (in terms of following medicine or diet recommendations) without scaring her to death that she'll end up like me?

- How do you get cooperation with dietary restrictions for a kid who shouldn't eat the junk but doesn't have life threatening allergies to it? Does the diet of a child with Lyme need to be as strict as ours? I'm trying to be Paleo, but could she maybe be just gluten / dairy / refined-sugar-free? Obviously, I'll ask my doc, but how do moms handle this?

- Her positive bands didn't match mine...I figured they would. Is it possible with congenital Lyme that the tests aren't the same, or would it point to a tick bite at some point along the way (even though I believe some of her symptoms have been there since infancy)?

- She's been on antibiotics several times in her life for ear infections, a UTI...but never herxed. Is that typical?

- Do you still vaccinate your kids with this diagnosis? Now that my daughter has tested positive, it helps support my theory that I've had asymptomatic Lyme for a long time, but that it was triggered after a Hep A vaccine and a bout of stomach flu. I got the vaccine after being exposed to Hep A through some recalled frozen berries, a few weeks later I got the stomach flu from my daughter, two days later I woke up a different person. My daughter is up to date on her vaccinations, but my plan is to stop them, but I live in CA and the mandatory vaccine law just passed here. I hope I could get a medical exemption because of her Lyme, but am just trying to see how other moms handle this issue.

Thank you all for your support and help with this!

Post Edited (Jasperilla) : 9/16/2015 8:57:23 PM (GMT-6)

Posted 4/23/2015 1:21 PM (GMT 0)
J:

How old is your daughter? Also, any pain she is experiencing?
Posted 4/23/2015 3:13 PM (GMT 0)
My 3 year old has Lyme and Bartonella. He had lots of odd tantrums - hard to describe but they weren't normal. He also had some developmental delays which now that he is in treatment are resolving. We didn't have hyperactivity - we had fatigue but every child is different. There is a lot if information on Pediatric Lyme on Dr J (in Connecticut) website. Probably a good idea to get your daughter an IGenex test.
Posted 4/23/2015 3:53 PM (GMT 0)
Simela, sorry I forgot to include her age; she's 8. We've been waiting for her to mature and while she has a certain degree, but I swear my 4 year old twins are more mature than she is in the areas I mentioned. And I know every kid is different, but there are aspects of her personality and behavior that have always seemed "off" to my husband and me.

Thank you Green Blue, for the reference, I'll definitely check it out. Yes, my daughter, although she's 8 now, used to have lots of tantrums, long past when I thought it was developmentally appropriate. She would tantrum the same way and over the same things as a 4 - 5 year old that I would expect a 2 year old to tantrum. And now that she's 8, she doesn't tantrum so much anymore, but she's incredibly defiant and highly emotional; any little thing can elicit a full emotional breakdown with inconsolable crying that can last a whole afternoon.

I am getting her tested through Igenix, but I was really surprised to hear that what she exhibits sounds like Lyme, I would have never made that connection.
Posted 4/23/2015 4:02 PM (GMT 0)
Lyme, and especially bartonella, can cause plenty of psychological and neurological symptoms in children.

I would have her checked.

She sounds much like our daughter did when she was younger, and our LLMD says that her infections were congenital. Treatment has resolved the ADHD, easy frustration, raging etc. Our pediatric psychologist was impressed with her improvement on abx.
Posted 4/23/2015 7:37 PM (GMT 0)
Personally I don't think it sounds like Lyme in the slightest. Like you said, kids are all different, yours happens to have a lot of energy (doesn't sound like a chronic disease like Lyme to me) and has attention issues (but doing FINE in school) and is emotional (you should see my little brother). That's just who your child is.

Now sure you can go get the 200$ Igenex test, which will likely have some possitive bands. Go ahead and treat, but if she doesn't improve, I don't think long term antibiotics is the best thing for an 8 year old who is still developing.

I would just like to add that she has a ton of energy, I repeat a ton... I'll know I'm better when I have energy like that again!

Post Edited (BDL) : 4/23/2015 5:16:28 PM (GMT-6)

Posted 4/24/2015 12:52 AM (GMT 0)
My 3 year old has Lyme, and a few of the symptoms you mention sound similar to his. The main difference is that my son needs more sleep than most kids. But the forgetfulness, impulse control, inability to sit still... Those all sound so familiar. I think it's great that you're having her checked. It sounds like you're in good hands. Let us know what you find out.
Posted 4/24/2015 2:37 AM (GMT 0)
J:
I agree with rowing mom. Trust your instinct and have her checked. I had the same feelings about my daughter. I believe she got infected when she was 4. I tested her and quest diagnostics gave a negative. I should have pushed further but I did not. She used to wake up screaming of pain in her legs when she was little. She is very bright but very impatient.

Now she is 9 and feels crawling aunts under her skin. Shin and lower back pain. Blurry vision that comes and goes. Don't wait, the longer you wait the harder it will be to treat. I gave her some cats claw and she had a herx. I never found a tick on her.

My 10 yr old son got the bulls eye rash in fall 2013. Got 1 mo of doxy. In fall 2014 he stated to have grand mal seizures, balance problems, memory problems. Regular drs dismissed barto and Lyme because tests were negative. He tested + for barto fish test through Igenex and + IGG Igenex Lyme. No seizures since December 2nd. Amazingly, he continues to be an honor student although he no longer can go to school-we do cyber school now.

My 5 yr old got bit in fall 2014. She tested negative through labcorp. No symptoms until mid December. Blurry vision, chills, behavior change, rib, leg, lower back pain. She responded well to Buhner protocol and she is recovering very quickly. Pediatrician refused to treat her because her test was negative. He implied she is making it up.

I find that neuro symptoms are the hardest to get rid of. It takes time and a lot of patients. Even if you just start with herbs, do something. All of my kids have started to have behavior problems around the time they were bit but all the doctors we saw dismissed it as related to Lyme and Bartonella.
Posted 4/24/2015 12:32 PM (GMT 0)
But like you said simela, your child was in pain. This is an 8 year old with no pain and ample energy.
Posted 4/24/2015 1:10 PM (GMT 0)
BDL:
The pain lasted only a few months and STOPPED. Also she was a very active little girl, jumping, climbing trees, monkey bars etc. the crawling, shin pain and vision problems started only this year. She started to have behavior problems years ago, and even she would notice it and tell us "I'm sorry I have anger issues" and "I can't help it". several years ago. I pointed this to others in the family but everyone said is part of growing up.

I just knew something wasn't right.
Posted 4/24/2015 1:45 PM (GMT 0)
BDL, not everyone experiences the same progression of symptoms. I believe I was infected as a child and don't remember experiencing joint pain until my late 20's.
Posted 4/24/2015 1:52 PM (GMT 0)
well, then I guess my little brother has Lyme, and a lot of his friends too. Maybe my mom, since she has a lot of pain. Oh and my other brother, he's tired after school, and has some anger problems. My sister was pretty depressed for a while, she probably has Lyme looking back on it.
Posted 4/24/2015 2:14 PM (GMT 0)
BDL, why come here and discourage a parent with concerns from getting more information? It is commonly understood among the Lyme community that Lyme can often present ADHD-like symptoms among children. Besides, doesn't the CDC say that there are around 270,000 new undiagnosed cases of Lyme each year? You very well may know a few of them.
Posted 4/24/2015 2:20 PM (GMT 0)
I feel bad for the child who isn't complaining of anything, it's a perfectly healthy child, and I'm not discouraging a concerned parent, I'm reassuring her. Along with giving an alternative view, because anyone who comes here with any symptom has Lyme according to you guys.

Not everyone has Lyme, sometimes people just aren't perfect. My brother was way worse as an 8 year old grade wise and attention wise, he's no in high school getting As and Bs. It's just part of developing.
Posted 4/24/2015 2:21 PM (GMT 0)
BDL:

I think many of us have it! My sister was always in pain as a kid and had eye problems, GI issues etc. she used to fall a lot and get sick a lot. She took a ton of abx without knowing the cause of her illness because the abx did fix most of her problems. She is much better now.

My mom was never tested for Lyme but she had a lot of issues with her ears, eyes, kidneys, swollen knee badly etc.

Same for her--she took abx for UTI and she got better without knowing the cause. Looking back, yes, I think it was Lyme.

And I know 3 more people living in tick infested areas with lots of symptoms. Drs are treating their symptoms and they do feel better, but the cause is never resolved. I talked to them about it but they are not hearing me yet. Neither were ever even tested for Lyme. I think my sister has congenital Lyme because she didn't perform well in school and she had sinus infections her whole life that kept coming back in waves.

Everyone is different. Some people are more CNS symptoms; other, more pain. Some overlapping occurs. My daughter has a good immune system. She almost never gets sick but this year she did bring a virus home, was sick for a few days and then all Lyme symptoms were activated. She got a herx from cats claw so it confirmed my suspicion of Lyme. I only can give her the dose my 5 yr old takes because otherwise she gets ill.

Over the sudden she gets ill from baths although my 5 yr old does not. Same bath, same water--they bathe together. So, yes, I know for sure this is what it is: she reacts to Buhner's herbs and gets a stronger herx than any of us. Believe me, I never told her what a herx is--no way she makes this up! But she is a trooper, still climbing and running around. She is the only one with the crawling.
Posted 4/24/2015 2:40 PM (GMT 0)
No one is saying that Jasperilla's daughter definitely has Lyme without a doubt. We are just saying that it is worth checking into since she and her LLND already have concerns. Most people wouldn't have noticed much wrong with my son until I talked with my LLMD about some minor issues he was having. Since treating him for Lyme and co's, he is like a new kid, excelling in ways he never did. He's not through with treatment yet and still experiences good days and bad days, but on his good days, his ADHD-like symptoms are minimal. He's happier, and everyone around him is happier. Most parents are pretty good at noticing when something is "off" with their children. If anyone who has had experience with Lyme suspects it in one of their children, why wouldn't they want to take the next step and get some testing? If it turns out to be positive, the child's quality of life could improve dramatically with treatment.
Posted 4/24/2015 2:48 PM (GMT 0)
Agreed
Posted 4/24/2015 2:50 PM (GMT 0)
Our daughter's pain symptoms didn't develop until she was 10 years old, but the psych symptoms were manifest from birth (sensory disorder - light, sound, touch, hyperactivity, etc). With diagnoses of ADHD, sensory processing disorder and Asperger's, I assumed she was just a quirky child who would (or would not) grow out of her problems. Lyme and co weren't even on my radar until the pain symptoms began. All symptoms have resolved with treatment.

I think Jasperilla's LLMD is right to question the children's health and behaviour because treatment can be quicker if infections are dealt with before they cause significant physical damage (heart, joints etc.). Not many people realize that these infections can be passed on congenitally, but obviously Jasperilla's LLMD does.
Posted 4/24/2015 3:03 PM (GMT 0)
I agree once more, rowingmom. But those were all diagnosed problems. Jasperilla said her daughter is doing fine in school, and has a lot of energy.

I'm just saying from a non- mom standpoint. I know how moms can worry, I respect that. They have every right too.

That's all I'm saying. Just an alternate viewpoint, which can be taken as helpful or offensive. But I mean it in the most sincere helpful way, not an anti-chronic Lyme; or CDC is right kind of way.

Post Edited (BDL) : 4/24/2015 11:52:07 AM (GMT-6)

Posted 4/24/2015 3:31 PM (GMT 0)
BDL
With all due respect, both of my kids are honor students. It doesn't mean anything! Kids are doing well in school because in the morning they have enough energy. Their immune system is keeping much of these diseases suppressed for a while or for the most part.

Come and see my son crawling almost every night to his room because he can't walk. What do I care about his grades if he started to have grand mal seizures, EVENTUALLY, after a year of being infected?

IF you had kids and their behavior changed, you would know something is wrong. My son tested + for Barto through Fish test. It took a year since he got the Bulls' eye rash for him to get seizures and be unable to stand on his feet at times. He walked perfectly fine and was perfectly fine for the first 9 years of his life. His behavior changed and he could not follow simple directions.

Grades do not reflect how sick a kid is!
Posted 4/24/2015 3:37 PM (GMT 0)
Once again, your kid is crawling to his room or having seizures!

Jasperilla has a child with a ton of energy! If I would look for anything in a sick child it would be there overall energy level.

Post Edited (BDL) : 4/24/2015 9:40:36 AM (GMT-6)

Posted 4/24/2015 3:53 PM (GMT 0)
First of all, he started to crawl AFTER a year of being infected. Second of all, my 5 and 9 years old daughters have different symptoms and they do not crawl. Every kid is different. As are my kids and rowingmom kid and every other kid and is not affected the same way. I never found a tick on me and my symptoms were mild. I have 3 CDC positive tests from Quest diagnostics. I never crawled, never had seizures. Everyone is affected differently by this both kids and adults. Symptoms change over time as I illustrated and as rowingmom illustrated.
Posted 4/24/2015 4:22 PM (GMT 0)
I understand, but all I'm saying is the child's current symptoms don't warrant questioning the health of the child. That is all.
Posted 4/24/2015 4:55 PM (GMT 0)
Wow, this got a lot of replies overnight!

I appreciate everyone's insight, and BDL, I appreciate your input, although reading everyone else's responses makes me confident in getting her tested. I was trying to high-level her issues, but maybe that didn't do them justice.

You're right, she does not complain of pain, but her energy, I would say is much more than "ample". It's a frenetic kind of energy. She tells me it hurts to be still, and I'm not saying that to say she's claiming actual pain, I just don't think she has the vocabulary to adequately describe the discomfort she feels. When she is not actively engaged in something worthwhile (like swimming or a sport or an active game outside) she is rolling around on the floor, kicking her legs in the air while rolled up on her shoulders, or using anything she can find in the house as gymnastics equipment to swing on, jump on, hang from, etc. She doesn't walk down the hall, she rolls her body against the walls. She slides along the floor instead of walking. She bumps into things constantly, partly because she is clumsy, but I also believe part of it is because she likes the physical stimulation.

She is on the swim team and swims between 1.25 and 1.5 hours every day from March through July. She also plays soccer during that time. Other parents tell me how their kids are exhausted after practice, sometimes practically falling asleep at the dinner table, but Cassidy comes home and immediately starts all the frenetic activity. We keep her active in sports all year round and give her as many physical outlets as we can to help her expend her energy, but never ONCE has she done enough physical activity to cause her to sit quietly for awhile and say, "man, I'm tired". She moves from one thing to the next as if she is on speed or a constant dose of caffeine.

This is also a child who desperately wants to cuddle with me and her dad, but as soon as we try and sit with her she will start poking, smacking (playfully, but it's annoying), licking, breathing in our faces, squirming, shouting in our faces or ears, or some other annoying behavior to the point that we make her get up. I know she's not doing it on purpose, she can't seem to help herself - her need for stimulation is so great or her impulse control is so low that she can't control it long enough to get something she really wants from us. When I ask her why she does these things, she just shrugs her shoulders. I explain that it either hurts or annoys us and we would love to sit with her if she's still and quiet, but every single time, it's the same thing.

She doesn't talk, she yells. Every person I know has commented on how loud she is. She listens to everything on a very high volume and puts things right next to her ears, even when I can hear them loudly from the next room. Her hearing is totally normal.

She may not have Lyme, or even if she does, it might not be what's causing her issues, but I believe something is causing her uncontrollable, never-ending energy and stimulation needs. And I may not be describing them in a way that demonstrates just how amplified they are.

I've been lucky, pain has not been a significant part of my symptoms for me, and the pain I do have, pales in comparison to my other symptoms. So I'm not sure that her lack of pain would be a disqualifying thing for me.

Sorry to have made this so long, but I wanted to express more detail about what we experience with her on a daily basis; it really does not seem like typical, or even "quirky", 8 year old behavior.
Posted 4/24/2015 5:48 PM (GMT 0)
Thanks for the better description. Something is a little off there.

I know the feeling "it hurts to be still". I feel it right now actually! And your right, it's not really a pain but just and uncomfortable feeling that goes away when I move. Like restless legs but anywhere in the body.
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