Hello

[Guest guest]

Thought I should post an introduction after joining the group. Great to have a

way to connect with parents of other young Lymies, as at least from my

perspective it is not easy to find information relating to kids.

My daughter got sick at 4.5 -- we are in Canada, where things are pretty

dreadful in relation to diagnosis and treatment and it's only been very recently

that there is even an acknowledgment that you can get it here. She was likely

bitten on Vancouver Island, in BC -- big tourism trade and lots of reluctance to

advertise that there is any risk there.

My daughter started showing vague symptoms of something not being right within

weeks of her Vancouver Island trip -- hypersensitivity to sound and light,

moodiness, severe insomnia -- as well as a weird 'summer flu' with a bad cough

that took her forever to recover from. By the end of the summer she was losing

her memory and mostly stopped speaking aside from one or two word utterances or

occasional lucid moments. By the end of the next six months she was severely

cognitively disabled and didn't even recognize me or her sister, was having

swallowing difficulties, loss of bladder control, streaky petechiael rashes

(probably bart) and seizure-like episodes where she screamed uncontrollably and

trying to injure herself. She spent nearly a month in the children's hospital

where they diagnosed her with an unknown neurodegenerative illness which they

said was probably genetic -- she was adopted so easy out for them -- or,

childhood disintegration disorder, a severe later onset form of autism. As well,

she spent weeks in a locked psychiatric ward -- where the head psychiatrist

there told me it was to rule out Munchausen's by Proxy, or that I was causing

it! During her psychiatric stay I happened to run across a newspaper article

about a local teenager who had experienced similar symptoms and who had

recovered, with Lyme treatment. Got her IgeneX tested and took her to Seattle

for diagnosis and treatment -- she was pos. for Babesia Duncani -- her WB blots

did have some starred bands but not IgeneX or CDC positive, but enough that

treatment was initiated. Co-infections were hit first (babs, then bart -- she

didn't test pos. for bart but had many of the symptoms: rages, sore soles of her

feet, lots of suggestive rashes) and then the Lyme. Had a year and a half of

treatment, though only orals as IV didn't seem to be an option for us without

heading to the US. She did fairly well for the first six months off meds, though

had many learning, language, and memory issues that hadn't been present before.

She's now 7.5 and back on treatment (ceftin, amoxi and tinidazole), plus

dexedrine for her executive function issues -- she was showing increasing signs

of relapse over the fall. She's responded quite dramatically so the protocol

does seem to be working, but I would like a more expert opinion eventually -- we

have a sympathetic local child psychiatrist who agreed to take on treatment

towards the end of her first round, basically following the same protocol as her

old Lyme specialist. Not sure if any of the Lyme Literate US psychiatrists would

be willing to consult, but our psychiatrist is open to that if we can find

someone. In the Canadian system and with my work prescription benefits we have

minimal costs if treatment can happen here. Things are certainly a lot better

for my daughter than they were a few years ago, but the bigger question for me

is now whether her memory and executive function troubles are the result of

damage or if they might be reversed through further treatment.

Looking forward to learning more through this group.

Alberta, Canada