Many of our long established customers (and friends) have been following the health of Annika,
Ceianne and Angel!
Updated information will be posted here for anyone wishing to follow their stories!
Annika's Health Updates!
You can now find Annika's updates at:
(as of Dec. 2006)
For those that know Annika you are already aware that she has long had issues with her legs.
Two years ago she was diagnosed as having a length difference...her left leg is 2" longer than her right! This came
about because her left leg cripled up (the only way to describe it). After months of physical therapy the legth difference
was discovered and the episode was pretty much contributed to that. Our hope was that over the next few years her shorter
leg might eventually catch up in growth. As long as no other problems arose we were to contact our orthopedic when she
reached the age of 13...at that age surgery to correct this could be done! Things were off and on for the past 2 years
but nothing major occurred, until October 2006!
That's where I'll begin!
Early October Annika began to complain of stiffness in her left ankle when waking in the mornings.
This was enough to contact her orthopedic about..which we did! Her appt. was not until Nov. 1st. On Oct. 9th she
woke to find her ankle in an alarming position and it would NOT move...at all! After contacting the orthorpedic again
her appt. was moved up to Oct. 13th. At this appt. her dr. was baffled...he could not figure out what the problem was.
After some reasearch he began to explain that he thought this might have something to do with Annika's spine...he suspected
her spine could be 'tethered by cartlidge'. An MRI is scheduled for Oct. 27th to see exactly what is going on in her
spine! However, on Oct. 26 Annika saw her Rhuematologist. At this appt. we were given a little more information.
He diagnosed Annika with Reflex Sympathetic Dystrophy (or RSD) (also called Complex Regional Pain Syndrome, Type 1). Click on the names to read more about this disease! He cannot diagnose her 100% until an MRI of her foot and ankle are
complete and seeing the results of the spine MRI but he is tentatively diagnosing her with this right now! Pending the
results of all the MRI's she will begin intensive physical therapy for the next few months (or as long as needed to regain
use of her foot again). For now she is using a wheelchair to get around (which she is handling very well by the way)!
I will update as soon as I have more information!
UPDATE 11/01/06
Annika saw her orthopedic today and we got the MRI results from her back, neck and spine MRI.....all
was good!! :) So, they have officially ruled all of those areas out as potential problems! Wonderful news!
The problem though...we still have no concrete answers. Her orthopedic doesn't feel that the RSD diagnosis is particulary
accurate but wants to see the results of the foot and ankle MRI (which will hopefully take place later this week or early
next). Her orthopedic mentioned that we may need to get a neurologist involved in all of this as that may be where the
problem lies. So, thankfully we ruled out something potentially terrible and still we wait for the final answer.
Tonight she is going to start a 3 day dose of vallium (sp?) so she will sleep WELL tonight! LOL The doctor is hoping
that maybe giving her a muscle relaxer will have some effect on her foot/ankle so we will see! If after 3 days we see
no effects we will stop the vallium all together...it's just a shot in the dark but one worth taking at this point!!!!!
UPDATE 11/22/06
Well....no news hasn't been good news! :0( We gave the valium a try and had no luck.
She was able to get a tiny bit more movement in her foot/ankle but it was exremely painful and caused MUCH more swelling and
pain afterwards...so that method of possible treatment was stopped! It took almost 3 weeks for the Rhuemotologists office
to get Annika's foot/ankle MRI scheduled (something I was very UNHAPPY about and made sure they knew that)...but it was finally
done last Friday! The dr. wanted an MRI done with contrast...however...at the appt. the staff was unable to get an IV
into Annika for the solution. They tried 3 times and she was in absolute terror by the time they were done....she was
just in tears (something Annika very rarely does!!!!). After the third try they gave up so all we have for results would
be the MRI without contrast. Hopefully that will be enough! We hope to have those results back later this week
(possibly Friday). If we NEED an MRI with contrast we'll have to talk to the dr's about how to go about getting an IV
in her while she is asleep or something. Each time they've had to draw blood from her it has been a horrible ordeal
(last time it took 5 tries over about an hour...THAT was traumatizing for her)....and now this! So, they'll have to
do something different! One more developement that has come to our attention is that whatever is crippling her foot/ankle
seems to be traveling up her leg...she has been having more and more trouble with her knee now! AND...her right foot/ankle
is showing a tendancy to pull inwards (just like her left did in the very beginning)! So, things have continued down
the wrong path so far! Hopefully we can get some answers with the MRI and if all is well with the MRI we are off to
a neurologist (which we are looking into now so we can get the best possible dr.). So, that's the latest! Annika
has been in good spirits yet for the most part...she is MUCH more frightened though with each appt. (mostly for fear of a
blood draw or IV though). Hopefully this ordeal will be over soon! Her pain has continued and now she is complaining
of a stinging sensation in her foot most all the time...NO idea what that is all about! We'd love to hear from anyone
who might have had anything like this....we are sort of grasping at straws right now until we get some answers!
Ceianne's Health Updates!
Ceianne also has had some medical concerns over the past 6 months! She would wake (usually
in the middle of the night) screaming in pain! Her hands and feet would be bright red and burning hot! The first
episode had us completely confused as to what was happening. Not knowing what else to do we gave her Ibuprophen and
within about 15 minutes she was calm, cooling off and going back to sleep! At first we thought it was a fluke!
This continued to happen again about a month later! Again, we gave her Ibuprophen and things calmed again. At
this point I contacted our family doctor. She was just as baffled as we were! Our course of action, to see if
it happened again..which it did...again, about a month later! This time blood work was done...with absolutely no findings
what so ever! :( Again, we were told to see if it continued and to make notes of our daily activities if it did!
About a month later it happened again! By this point it was becoming a serious concern for us all. Appointments
were being set up for Ceianne to see a Pediatric Rhuematologist...which isn't the easiest to find let me tell you! In
the meantime Ceianne's episodes quadrupled...now they were happening on a weekly basis instead of monthly! A Pediatric
Rhuematologist was found (which is now the dr. both girls see) and we had our first visit with him yesterday (10/26)!
He has confirmed the diagnosis that we all suspected....Erythromelalgia. It is an extremely rare disease that is practically unheard of in children under 5...Ceianne is only 3! At this
point all we can do is continue to deal with the pain episodes when they happen and have her blood plattlets checked reguarly
to be sure there are no changes there. This is a lifelong disease and there isn't much information as for her future,
especially because she has been diagnosed at such a young age!
Angel's Health Updates!
Angel was diagnosed with Lumbar Scoliosis in July of 2006. He currently has to be watched
carefully over the next few years (x-rays/visits every 6 months for the time being). We are hoping for the best considering
this was found very early on! He has continued to play soccer with the doc's ok!
