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Kids with Lyme

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Lyme Disease
how did you find out your child has Lyme?
bullseye rash followed by positive test - 11.1% - 1 votes
bullseye rash followed by negative test - 0.0% - 0 votes
symptoms led to pos. test, but no known rash - 55.6% - 5 votes
arthritis led to pos. test - 11.1% - 1 votes
family history and symptoms led to pos. test - 0.0% - 0 votes
other (please describe for me!) Thanks, all. - 22.2% - 2 votes
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Posted 6/23/2013 5:20 AM (GMT 0)
Hi all.

I just want to find out how many of us are here because our kid(s) have Lyme.

OK, there's lots more I want to find out too.

I personally am trying to see what symptoms other kids are dealing with, what treatments have been successful, how you help your kid deal with the day to day impacts,

what seems to work best for you when explaining to other people, how you got a diagnosis, how it's affected school, and whatever else is a concern. That's all...Oh...

I'm especially interested to know if anyone else's child has lost any part of their vision.

I've been reading from a number of you already, but I am guessing there's more of us here than I've had the chance to 'meet'.

A synopsis for those I havn't vented to:

My son is 8, got the rash in Sept. '12 and tested negative 2x since.

He's got lots of neuro sypmtoms including migrating pains, decline in school performance - particularly writing, forgetfulness, trouble finding words, and now, loss of peripheral vision.

The only thing that is not too subjective for the drs is the vision. He gets an MRI on Tues.

Posted 6/23/2013 6:12 PM (GMT 0)
Hi. I am happy to play along; my summary is:

7yo daugher, suspicious insect bite (found to be a tick bite-using google image search) in April 2013. We never saw the tick and it could not have been on her for more than 2 hours as it happened on a hike. We watched and waited for rash/fever, and there was nothing. So we moved on with life. A month later, my daughter started taking naps again, then the next week she wanted to go to bed early, the next week she could not hold her baby brother for long. Pos. Western Blot test on May 31, 2013. Abx. just finished. She will go to the LLMD in July with my husband.

Symptoms are fatigue, lack of muscle endurance, mood swings (collapses crying when disappointed, when she'd normally pout), some arm/leg pain (just started), head aches, head feels "heavy", and she "feels bad or sick" after she eats, she once described that she felt worried, but it was in her chest or tummy, not in her mind.
Posted 6/24/2013 4:54 AM (GMT 0)
Hi Mommaklee,
Thanks for your descriptions. My son has just started to show a bit of endurance loss - having to walk in a sport class when usually he'd run non-stop. The pains are all over the place, on again, off again.

He gets stomach aches after eating probably a third of the time. As for moods, yes, easy crying, but also extreme anger one day and aplomb another for something more logically upsetting!

I'm going to share your description with some people who sometimes dismiss his reactions and pains as anything but Lyme.

Tuesday is the MRI to find out why he has lost peripheral vision in one eye.
I have posted on lots of threads about this all, so sorry if I repeat myself.
I'd love for this NOT to be the most important thing in our world. (As long as it is not due to something worse taking over!)
;)
Posted 6/24/2013 1:11 PM (GMT 0)
All of our daughter's symptoms are listed in my signature line. Putting it all together for others is a wonderful idea. Her vision has not been affected.

Even though her symptoms led me to testing, she never had a positive lyme test. Bartonella hensalae was positive however, and most of her symptoms appear related to that infection. Several lyme-specific bands on the Igenex western blot came back IND.

Before her pain symptoms, Tourettes, exercise intolerance and PANS/PANDAS symptoms (loss of handwriting skills as well as spatial/fine motor/math ability, enuresis, raging, emotional lability, insomnia) started she did have some type of bite at the cottage. The rash was non-EM, but looked like a deep purple bruise with a brighter red border. It was about 1 inch in diameter. 1 month afterwards her ticcing started.
Posted 6/25/2013 5:29 AM (GMT 0)
Thanks Rowing Mom.
There's a lot of familiar territory in that list. I hope things are going well now.

May I ask, how's the moodiness going? It may not be as high on your list of troubles since she had some scary pain to deal with, but for us it is affecting school badly. Thank goodness for summer vacation.

His pain is increasing in frequency and some in intensity too, but it's the rage, fog, and writing decline that are the biggest worries at this point.

Of course, that is all nothing compared to the vision loss. He is being pretty low key about it and I try not to react much to it when I deal with people (like drs.) but I have to be explicit that this can not wait any more. I know he gets it that it's a pretty bad problem.

Every time I read another kid's story I get a nasty feeling in my stomach. It's not even the being sick that really gets to me because I know that treatments can work. I feel sad for their pains and sorrows.

But, it's that the problems are made worse, not better by a medical 'establishment' (channeling hippies?) which will go through wild contortions to make it 'anything but Lyme' that bugs the $#!? out of me. Denying a kid treatment that could have prevented damage, misery, and strain on relationships is disgusting.

At what point does it get through that the evidence of our experiences has scientific value too? Hell, how do they judge if a psychiatric drug works?

There's got to be some amount of individual testimony about their subjective symptoms! How do you feel? Do you want to live? Hard to measure that if they are still breathing, ya know. Got to rely on some testimony. Hmm. Go figure.

There's no shortage of Psych drugs on the market. I don't know if there's a shortage of functional ones.

Yeah, I'm wound pretty tight tonight. Pray for him in whatever way you do, please forum friends.
Posted 6/25/2013 3:42 PM (GMT 0)
Our daughter's moodiness is pretty non-existant now. She is generally quite happy and no longer rages with the smallest frustrations. Her pain is completely gone. She danced 13 dances at her celtic dance recital (think Riverdance - hard on the legs and feet) on June 2 with nary a pain. She does get a little emotional/ticcy/shin pain 2 days after increasing houttuynia, but so far it continues to decline to baseline within 1-2 days.

Life is so different from what it was. She wakes with a smile, makes her bed, sorts her clothes, eats, brushes teeth, packs her school things and is out the door in time for the bus. EVERY DAY. WITH NO PROMPTING. She comes home from school and sits down and does homework without being asked. I no longer have to sit beside her and walk her through every sentence/math problem.
At one point, before treatment started, she forgot how to hold her pencil! She was 9 at the time. Her handwriting has improved greatly, and she even enjoys cursive writing now, where before there would be tears and raging frustration at her inability to do it. Her ADD has resolved (with no addition of ritilin), and she has lost her autism spectrum dx.

If you haven't done it already, please check out the ACN Lyme/PANDAS forum. Our children are all infected with bacteria of one sort or another, and the real problem is not just the infection, but also the brain inflammation it causes (PANS would be the acronem for brain inflammation reactions caused by infections other than strep). Loss of handwriting skills, raging, ADD are all symptoms.
Posted 6/25/2013 6:05 PM (GMT 0)
I think one of the difficult things when dealing with kids, is at least for me, my girl doesn't always know when to tell me something, or if she does, she uses a different way of explaining what she's going through. Sometimes, she just doesn't have the words and so we don't get anywhere.

Example,

N: Mommy, I feel sick after I eat.
Me: Do you feel nauseous?
N: No.
Me: Does your tummy hurt?
N: No.
Me: Does your tummy feel prickly?
N: No. It just feels sick.
Me: For how long?
N: Like 60 seconds.

Need to kid wrangle so I can't finish, but I figure I'm not the only one who feels like I just wish she could explain things better.
Posted 6/25/2013 7:24 PM (GMT 0)
Mommaklee,
I would try asking your daughter how it makes her feel sick. Let her tell you. Try to get her to use a different word than "sick" - ask her if she couldn't use the word 'sick' what other word would she choose?
Posted 6/25/2013 11:17 PM (GMT 0)
Hi. I really feel for you. My son has Autism among other issues and I believe it is due to vaccines; but, first due to my having undiagnosed Lyme disease when I became pregnant. My other son has Aspbherger's among other diagnoses and for the same reason. Today at the psychiatrist where we get my sons' meds, I told the doc that I needed my sons to get tested for Lyme. The doc said no and that they did not show any symptoms of Lyme disease. When I asked further he would not tell me which symptoms he was looking for. Could it be that he is afraid of losing us as patients if my sons could actually recover? I still plan to make time to get one son tested. The other can't get blood drawn due to fear of needles. I will pray for your child and for you. I am so sorry that he should have to go through such pain and struggle at such a young age. God will care for him and for you too.
Posted 6/25/2013 11:52 PM (GMT 0)
Hi Zentraveler,
The most knowledgeable LLMD's will diagnose by symptoms first and foremost anyway - maybe if you could get your son in to a doc that has this same philosophy you could determine if your 'other' son has these infections as well?

The tests aren't all that reliable - they miss about 1/2 of those that truly have the disease, and co-infection testing isn't as good as that at this point in time.

I often wonder about many doc and many different conditions what you have put into words -"Could it be that he is afraid of losing us as patients if my sons could actually recover?" Since no one would ever admit to such a thing, we will never know, but I encourage you to keep looking!

If you are seeing a good LLMD, maybe you could ask them about your sons?
Posted 6/26/2013 2:09 AM (GMT 0)
I agree with Traveler. You won't find the answer unless you go looking for it. Mainstream doctors are unfortunately pretty closed to the idea that infection can cause psychiatric symptoms.

Our daughter lost her speech 2 weeks after her 15 month MMR. She lost motor ability as well. She was born with hypotonia, touch/light/sound sensitivities which, along with the symptoms I am showing, leads our LLMD to think she has congenital lyme as well. Her second reaction happened 1 month after her MMR booster and there was a bug bite with atypical (non-EM) rash as well, a couple of weeks after that.

2 years later she was dx with aspergers, a motor tic disorder (which developed vocal ticcing as well - so would be characterized as Tourettes), and ADHD. Our PCP rx'ed clonipin and ritalin which I chose not to use.

After 2 years of treatment for lyme/bartonella she has lost her aspergers and ADHD diagnoses, although still has a little motor ticcing with herxes. These symptoms were caused by infection, I am very sure.

It's a very interesting trip we are all on.
Posted 6/26/2013 6:32 AM (GMT 0)
Tonight I think I'll stick with " I am outraged for all of us."

OK, maybe I can't stop there. They gave my son Propanol (sp?) today. Yes, the stuff that Michael Jackson died on. I know he was an unusual case but I should never have had to even face the fear of having my son put under.

Yes, the school calls him borderline Asperger's and it has been suggested he might be ADD and or Hyperactive, I have been offered psychtropic drugs because he was given an instant diagnosis of bi-polar. Can't get antibiotics, they can be dangerous!

I asked his dad (divorced - clearly the source of all moodiness even if it is unlike all previous years combined.) about his self diagnosis of bi-polar. He said, 'Oh, my sister found out she's gluten intollerant so I got tested. That's what the problem was.'

The allergist said no unusual sensitivities on the test, but didn't rule out an intollerance.

A chiropractor held up vials of gluten and casein with a big magnet behind them and poked and proded. With the vials the pokes hurt, with out, they didn't. He pronounced complete intollerance.

 I have seen plenty of people suggesting to go gluten/dairy free and I am not against the idea in general but really? magnets and vials? Anyone have expeience with that type of diagnosing?

I also wasn't thrilled that he decided all the symptoms are from the foods, not related to the Bullyeye rashes. I think the food issues are symptoms! I asked my son if he used the same amount of pressure each time. He said no. It could be they just felt different, or it could be the chiro. wants to sell the books in the lobby.

about kid descriptions - I hear you! Tonight  my son said he had a 'flashback'. Since I'm reasonably sure he's never done psychotropic drugs at 8 yrs old I asked what that meant.

He says when the light goes off or comes on and there's a big change in brightness he 'freezes and remembers things like he was there and he can't move for a second.' HUH?! I start thinking "seizures?!" He's had an EEG recently to check for epilepsy. Negative. I tried to ask for more info, like when this started.

We also worked on the vision loss. We can only narrow the onset down by half the prior range. So, back to the flashbacks. He deliberately played with the light switch but showed he could move after all. He says he gets dizzy. I will have to watch this a while and ask more questions.  I don't know what to make of it.

Traveler - your phrasing for questions sounds useful - not leading but still encouraging.

 

Posted 6/26/2013 1:43 PM (GMT 0)
Just my thoughts on food intolerances - the intolerance is not the direct cause of symptoms, but causes inflammation. This exposure/inflammation results in a slowdown or backlog of cell metabolism, further decreasing the body's ability to properly address infection/inflammation. Symptoms escalate. There doesn't need to be a full blown allergic reaction to produce the negative effects. They are chronic and long-term as long as the offending food is eaten.

The chiropractic testing you mention is very alternative and sounds like a type of muscle testing. I am not sure I can wrap my head around that yet, but there really are no effective mainstream alternatives for assessing food intolerances, especially low level ones.

For this reason we follow a vegetable heavy diet, with some meat and fruit. We didn't really evolve to eat the products of agriculture or husbandry. These are relative newcomers to our diet, and as a result I think, may not be well tolerated.
Posted 6/26/2013 1:50 PM (GMT 0)
Our daughter complained of dizziness and flashing lights. She was extremely light and sound sensitive. She was also concerned about hallucinations she felt she was having. Hearing voices, seeing lights or people that weren't there. She remembers all of this now, and comments on not having these symptoms any more.

In reading Buhner's new book on treating Bartonella and mycoplasma last night, he lists eye symptoms as fairly common for bartonella infection. It is usually the result of retinal inflammation and the overactive growth of blood vessels in that area of the eye. He also mentions loss of peripheral vision (which he also mentioned, resolved with treatment).

If I was you I would concentrate on lyme/bartonella treatment and chart to see if you find any lessening of symptoms with treatment. A lot of these symptoms could be the result of infection.
Posted 6/27/2013 6:29 PM (GMT 0)
Thank-you. Useful.

I have believed what is so aptly called paleo diets make sense for some time. We can survive many things, but we evolved eating what we could catch. Plants don't run very fast, so we catch more of them!

Grains and nuts ripen towards the end of summer when it begins to get colder. We use the concentrated energy for warmth.

Grain in it's whole form has a much lower glycemic index. And, with the genetic engineering that has been done on grains (for thousands of years) we have changed their ratio of starch to fiber quite a bit. Plus, we often throw away all but the starchy bit! Add the increasing levels of gluten due to more recent modification and it's not the same food.

The flashing lights note really made me sit up and pay attention. His test for field of vision had a high false positives level for the good eye. He saw a lot of flashing lights that weren't there.

I have been running out of time and sleep. Sleep had to win a few times. Two more appts this week. I hope there's a benefit to it. Another next week, all in the hope someone will actually come up with something to DO.

Post Edited (California Cat) : 7/21/2013 1:28:42 AM (GMT-6)

Posted 7/21/2013 7:35 AM (GMT 0)
Hey there - just looking to see if there are any othe parents who might have experience to share.

My son's peripheral vision came back after 5 weeks. I looks like a massive amount of natural anti-inflamatories from many sources helped - by sheer chance.

I'm really glad we got a second opinion outside of insurance because the ins. Drs are implying he faked it. "It's just not possible." Well,  it's just not possible that he faked it. He's really smart but an unskilled liar and he would have to have over rode reflexes too.

He's on Amoxicillin now with a mention of encephalopathy from a 2nd neurologist.

What's your story?! shocked

Posted 7/21/2013 6:05 PM (GMT 0)
My duaghter has had Lyme since she was around 10 I believe, but wasn't diagnosed until 2 years ago since we live in the PNW, where it's not widely known. I thought it was puberty. She only got diagnosed because we switched to a new doctor so our insurance would pay. He was the one who suggested the Lyme test and we had no idea he was a LLMD/ND when we signed up with him. It sure explained a lot of odds and ends of things she had going on. I won't go into much detail, in respect for her privacy since she's 25. Her main symptoms are fatigue, constant headaches, digestive problems, candida and mental problems. She can't read like she used to, because of the chapters. She used to read fast and would go through so many books. She loved to read. It's hard for a young person to go through, when they should be moving ahead with their lives and enjoying friends.
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