rowingmom lovemychildren I want to pick your brain now about sick kids :(

You seem to be the expert on what this stuff does to kids. I finally feel like opening up about my son and was hoping you could relay your insight.

My son turns 3 in february. When he was born we both almost died. And he's had a lot of issues since. Right now is the best he's ever been health wise, but my intuition is telling me there is something not quite right about him. I had Lyme for 5 years undiagnosed before I got pregnant. I was told I couldn't concieve, yet here he is!

He had strep when he was 13 months old. So my LLND said his concern would be PANDAS.

My question for you is how old were your kids when they got sick? Or is it only the one son? What do I look for in him? What do I do?! I was told he shouldn't be treated for Lyme until he is 7 because of the drugs used. He's never been tested. But I really wouldn't be surprised if he had antibodies based on his history.

3 or 4 days ago he went to bed holding his eyes saying that his head hurt. He woke up the next morning with a fever and saying his knees hurt. I checked them out and one was a little bigger than the other. But it's hard to tell because he's a boy, and he has bruises all over both legs.

Recently he's become very OCD. His toys have to be a certain way, his food needs to just right....etc. I think it's pretty normal for his age, but at the same time it started pretty suddenly. One day he just became upset. about everything. He's constantly having meltdowns and no amount of distraction gets him out of his funk. I'd like to think it's normal and all kids do it, I don't want to over exaggerate. But at the same time I think it's important to be cautious.

So how do I tell where to draw the line in the sand?? Any advice or opinions is appreciated :)

Post Edited (IHL) : 1/5/2015 12:34:44 PM (GMT-7)

Oh, another symptom he had was sleep. Before he was sick, he would be up and out of bed by 6 every morning. As he got sick, he would sleep later and later. When he finally did wake up, it took him a long time to become active. He had to really ease into the day. Now that he's healing, he is waking up early again and is active pretty much as soon as he gets up.

Both of my boys were infected at scout camp in 2010, they were in the same tent. My older one, 16 then, had a rash a couple of weeks later, and my younger one, 11 then, complained of leg pain (I thought growing pains), headache (it was 103 outside) and spiked a fever (weird thing he often did his whole life), so each time I gave him motrin.

By Oct. he couldn't walk and finally showed me his knee, the size of a cantaloupe. In 2013, he seemed irritated and annoyed with us a lot and he was usually easy going. None of my children were ever typical nasty teens, so it was unusual, esp. for him. He has a temper, but most of the time is laid back. By fall 2013, he was beating himself (to get rid of intrusive thoughts, though we did not know that at the time, thought is was behavioral since he was "cured" - yeah right). Then it all hit the fan in the winter, melt downs, dangerous situations, overturned furniture, raging, beating himself until 4 am - (you could hear it two houses away while he was also screaming, like someone was being murdered). It was total insanity. The OCD and ODD and TICS were getting overwhelming, just a mess.

He and my other son were definitely undertreated.

After months of research this year, and if I were you, I would do what Nosila says and get your LLMD to treat him. If he won't, try to find one that will (see, wish Charles Ray Jones was still practicing, HE would help you). I"m not a dr. or an expert, but I do have four children and none had lyme. One of mine was and still is a little OCD, she was a real premie, so maybe that has something to do with it. She is brilliant, but a loner and really obsesses over perfection and decisions, etc. Your sons behavior seems not really normal (in my gut too). Andrew holds his hand up after sitting and covering his ears and holding his head and says "give me a minute" and I know to shut up - it's a lot quiter now, he used to rage and scream it at me - he still won't tell me what is going on in his head then. He also had issued with his hands and fingers. We thought he was getting early carpal tunnel from so much time on the computer, but now we think it was ticks/ocd.

I have convinced my older one to take ADP protocol for life, just in case and Andrew will without a doubt. I'm sure he NEVER wants to have this or anything else happen again once he is completely well.

From what you are telling me it sounds ever so clearly like he has lyme and you would be best to catch it early. A friend here in our area has two children around 7 and 9, really suffering with symptoms as she only learned a year or two ago that she and they have it. I may be wrong, but the sooner you can get to it and starve it and stop it's duplication, the better shot your son would have in the long run.

I think Lyme Pickle even spoke about very young people being able to make faster and more complete recoveries.

Hope I'm helping!

such good information. I have been debating whether or not to get my boys tested, I conceived them both after I contracted LYME. I also have a gut feeling they have it, but there symptoms are not severe. My LLMD wont treat if they dont have symptoms. My 2 year old has very sensitive skin and breaks out in rashes quite easily. He seems to be allergic to something but I have no idea what? He also has OCD tendencies, but so did my older boy (4 years old). Lining up cars all in same direction, closing cabinet doors or house doors. Of course their pediatrician says that is all normal behavior for their age. My older boy always has swollen lymph nodes. They both had delayed speech, but I have been told that its because they are learning a 2nd language?

The reason I am hesistant to get them tested is they both absolutely dread doctors and needles. We had to sedate my older son to draw blood years ago. My husband thinks we should wait because right now, they are healthy and thriving. I go back and forth.

IHL - you have gotten a lot of good information here.

Because you think you were infected while carrying your son, I would suggest that he may be dealing with PANS (inflammation/autoimmunity caused by infections other than strep) as opposed to PANDAS (caused by strep infection). In my opinion, too many parents are directed toward strep treatment when they should be treating the underlying infections that cause immune suppression in the first place.

Our daughter flared with strep infections, even though she would be asymptomatic (no fever, no sore throat, but white spots on tonsils and positive strep tests). She has not had another strep infection since she started treatment for TBD.

Our LLMD understood that K's PANS symptoms would resolve with treatment for bartonella. That got her to 80%. Herbs for babesia have gotten her to 99%. Our LLMD thinks congenital infection is involved for us as well. Here is the beginning of her timeline:

K - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.


If I was you I would take him to your LLND and try treatment with herbs or homeopathy before you go for antibiotic treatment. If I had to do it over again I would have saved antibiotics as a last resort.

hi IHL, like others have said, I see you've got some good info already, although I didn't have time to read through all of it myself yet.
I just wanted to chime in and say that my son was 3 1/2 fall of 2013, when he started showing some PANS symptoms followed quickly (like within weeks) by physical symptoms of lyme (joint pain, fatigue, headaches, neck hurting, neuropathy, dizziness, muscle pain, and more).
He was finally tested and dx with lyme in Jan. of last year when he was one month away from turning four. (He's a February birthday too :) )
I've gotten so, so much help and info from the people here, it's good you're here!
One thing I wanted to comment on (and maybe someone already mentioned something like this) is that as far as the drugs used, my son was on amoxicillin for 14 weeks and azithromycin for 10 of those 14 weeks; he was almost 4 when he started them (they went from Feb. to early June). He's on herbals now to finish up his treatment (as long as it takes; I'm just glad he's doing so much better!) Maybe the person who said he couldn't be on the drugs was thinking of doxycycline which isn't given to children under 7 or 8? or some age like that. But amoxicillin is used on lyme with good results (children and adults); and my son is a testament to that, b/c although abx aren't perfect and come with possible yeast issues (and my son did have to be on an anti-fungal for awhile) and aren't good for the gut flora of course, I still am grateful for that they brought my son to almost symptom free.
Now, that being said, I'm actually really loving that he's on herbals now, and grateful to be learning the things I"m learning about them.
didn't mean to get so long here, but I can relate with having a little one who is/was in a similar situation. Best of wishes to you as it gets figured out and I hope he finds healing soon!

Post Edited (stacestar) : 1/5/2015 7:50:02 PM (GMT-7)