My son spent his first year between doctors and hospitals because of an immune system defficiency, but tested negative for Lyme. We're testing him every 6 months.

He's now 2 year old and a few weeks ago, he began complaining of knee pain (so strong that it makes him grab his knees and cry for hours).

I remember going through the same thing when I was 7. As it turned out, that was my first symptom.

Does anybody know if knee pain is a typical first symptom in congenital Lyme cases?

I do not know if knee pain is the first typical symptom....but given your history, I would be strongly suspicious....

Based on what I read on this site previously, I think this disease manifests itself differently in different children..... some are very sick early on, some are relatively healthy....
and somebody's kids very healthy until about 4 or 5...and then full blown lyme appeared...scary

have you been treated during pregnancy???

I was....my son is 22.5 months and so far so good.... sometimes he puts his fingers into his ears, which scares me a little bit as I have some ear aches as well (but there is nothing visibly wrong with my ears to doctors...) I will not know until he speaks bit better...

Did you consult Dr. Jones in New Haven???

She's now 6 and I am just starting her on the antibiotics for Lyme. She has a clinical diagnoses of lyme and her Igenex has not come back yet.

What kind of tests are you running. Are they just the regular tests or Igenex. you may have to try Bowen.

My 9 year old has anxiety and bipolar disorder, and nausea with headaches, and his friend who is also homeschooled as are mine is 8 and he has lyme.

His main symptoms are arthritis like pain in his knees. Somedays he can barely walk. They became friends through my lyme support group.

I can't tell you what to do although that has never stopped me before, but I believe your child has lyme.

If you've had it for 20 years then you probably know that congenital lyme does not show up on any of the tests real well.

There is a high rate of false negatives. Have you known you had it for 20 years or just recently found out you had it.

When we were faced with congenital lyme....we had noooooo idea what was going on. I think what has been already said is right on.

The first things we noticed were failure to thrive (age 9 months - 1 year), severe leg aches (about age two and on), severe stomach pains (from about age two on), food and chemical sensitivities.

You are som ahead of the game by knowing what is going on. If you haven't already done it....I would run, not walk to Dr J for a consultation etc.

hang in there and enjoy that little one, okey dokey?!

Healing thoughts.....lightfoot

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I have talked to numerous friends (normals), relatives, on two continents, and ALL of those mothers tell me that their children (some of them have several children) have had the same things, sometimes to the point of crying.

So, how does one know what is normal and what isn't normal if otherwise healthy kids get the same symptoms (to the point of crying even)?

I find this a huge dilemma, because from the odd pains and aches etcd (which all kids seem to get), my daughter appears healthy and I do not want to put her on the 'medical treadmill' from a young age unless I KNOW it is Lyme and not 'growing pains' or other viral, etc causes.

I think personally, if your child seems healthy, to you, with occassional pains, that is probably no different than a "normal" child. Normal just meaning one w/o lyme or illness.

I know for myself my kids were both born with SEVERE GERD, Constant ear infections, rashes, cried almost non-stop, some developmental delay was obvious, emotional problems, anxiety, terrible gross and fine motor skills, and much more.

This made me persue many avenues and lyme is a piece of their picture.

Not sure if that helped anyone.