Hello from the Past

[Guest guest]

Hello List!

Our family joined this list in 2001 as we struggled to learn as much

as we could about our daughter's condition. I want to provide an

update now that Beth is 8.5 years old.

In the spring of 2003, after 2.5 years of fevers, " baseball " glands,

mouth sores, sore joints, stomach pain, and sleepless nights, Beth

received a tonsillectomy at age 5. We had tried both Prednisone and

Cimetidine with limited effect, but were very nervous about

continuing to use these drugs on our growing daughter.

Up until the surgery, Beth cycled every 20-21 days for 3-4 days with

high temps. She missed over ¼ of kindergarten and has lost about 18

months of growth – perhaps permanently. We purchased case lots of

Motrin (ibuprofen) as we found it had a much better effect than

Tylenol for controlling the fever and joint pain. Her liver

function is probably impaired as well, due to the high quantities of

drugs, though her doctor feels that this will dissipate over time.

As well, her baby teeth were in very bad shape, due to all the

nighttime vomiting from fevers and the medication.

It has been three years since the surgery. She still has the

same " cycle " period but unless she is very tired and rundown, does

not have a fever. She is pale, with those dark circles under her

eyes we all know so well, a little quiet and prone to tears with

stiff joints, but is able to keep going to school with assistance

from her teachers, who allow her to read quietly if she needs a

break. We are very firm with proper sleep and nutrition, as we

believe it makes a big difference for her in minimizing the cycle

effects.

She still gets the odd set of mouth sores, swollen glands (often

under her arms) and tummy cramps, but it is nothing compared to what

she went through as a toddler. In Grade 1-3, for example, she has

missed only about 3-4 days of school each year – all unrelated to

the cycles. She still doesn't get a lot of colds or flus – her

immune system is still highly functioning.

We knew going in that having her tonsils out was a bit of a risk in

terms of success, but we also felt we had to do everything we could

to find a solution. We expect that this level of cycle will

continue until her teenage years, but we have accepted that.

I think about those of you with high-fever children often.

Until you go through it, it is hard to explain the incredible drain

on a family with a chronically ill child. We used to watch the

calendar each month, hoping she wouldn't get sick but dreading that

midnight call when she did. We also had a high-needs baby in the

house at the same time. I'm still not sure how we survived those

days!

I hope that our experience can give you hope. Please feel free to

ask me further questions you might have.

Best wishes,

Mom to Beth (8.5)

And Ben (5)