Please help Diego get the treatment he needs, IVIG. He has PANDAS (a rare immune disorder) that is NOT covered by any medical insurance providers. All IVIG treatments are going to be out of pocket expenses. They don't know how many he will need and this will cover his first treatment. I have not been able to work and he has not been able to attend school due to his condition. Every dollar helps.
Help my son recover from this nightmare. Thank you for your support!!
Read further for Diego's story:
Diego was a sweet,
caring, regular kid that loved to socialize, go to school, and all the things
that most kids enjoy doing. He had mild signs of separation anxiety and mild tics that started at age 5, but
were treated as mild and nothing to worry about. The nightmare began at age 11,
when Diego started to have panic
attacks almost on a daily basis, which were being called Asthma attacks at the time. He went
to the school's nurse 67 times during school that year. We went to several Asthma
specialists in town and most diagnosed it as Anxiety/Behavioral, and not as a lung problem.
Then last year
in Oct. at age 12, Diego told me he wasn't feeling right. He said" Mom,
school is so hard. Why do the kids get it and I don't? What's wrong with me?
Why do I feel strange, like I'm in a fog?" He had no signs of sickness like sore
throat, etc. So I took him to our pediatrician and Diego was diagnosed with ADD. He was prescribed a
non-stimulant medication for this and in less
than 4 days he woke up a different child and this is where the true
nightmare began for us. He started to have physical
tics that were very severe. They cause him to wet himself, not allow
him to fall asleep, and cause physical pain to different parts of the body
depending on the tic. There were times he was screaming at the top of his lungs
about how bad his head hurts and continues that way for hours. He also started verbal tics and began swearing, using
racial slurs, very inappropriate and random things to anyone, including family
and friends that he loves. He is apologetic and states that he can't help it
after the tics were being said. This has frustrated, angered, and saddened him
to the point of suicidal comments.
He also started to show signs of a photographic
memory and became Savant like
by memorizing long strands of numbers with only one glance for a few seconds.
He would state that he had a book in his head that he could retrieve pictures
of what he was seeing and at times would drive him crazy because he could not
turn it off. He started talking like
an immature 5 yr. old at one moment and the next like a mature 35yr. old
gangster. He lost his filtering system
and says things that are very inappropriate, social phobias, severe OCD and perfectionism. He was
overly sensitive to light, sound, and smells. He was stating at varied times
that he was seeing things. He was Hallucinating
rainbows and different abstract things and complained about how things are
going so fast and then how things are in slow motion. He cries easily, is
fearful and sensitive, and was saying unusual and unwanted perceptions such as
hearing voices or seeing himself in third person. He has made suicidal threats, he has severe Anxiety, and extreme
mood swings and outbursts. I was then told that Diego is to be under
adult supervision 24/7 by the current doctor. School is no longer an option and
basic things like going to church, having friends, and even the grocery store
are too much at times for him to handle. We have become homebound.
I took him to
the Emergency Room after a week of all these symptoms and they ran tests and Diego
was now diagnosed with Tourettes.
I believe that the photographic memory threw the doctors off in properly
diagnosing him. He was now prescribed a medication for Tourettes and started
seeing a Neurologist. This Dr. did many tests, but not blood work. He agreed
with the previous diagnosis of Tourettes.
By December 2012 he had been on 4 different types of medication for Tourettes
and he was literally going crazy. All of his symptoms were getting worse and
Diego was heading in the wrong direction. At this point I begged to take him
off of the medication because it was only making things worse.
I took Diego to
several other Doctors including mental health professionals and everyone was
saying the same, "We have never seen this before." By January Diego was
completely off all medications and we tried natural remedies. We actually had a
few "good days" which is what we call when it doesn't feel like all hell broke
loose. I continued to research mental health and different types of diseases to
figure out what happened to my child. At this point he was getting worse again
and on a daily basis. We continued to visit new doctors of varied medical
fields. We were over a dozen different doctors with varied and contradicting diagnosis, but not one solution
that would help Diego and his symptoms.
In June of this
year, Diego's OCD got to the
point where he lost control of his movements at certain times. For example, one
night he couldn't get his legs to move to get through the front door. He said
he didn't want to walk on the blocks of tile because he was afraid they would
fall out from under him. He tried and wanted to come in the house but his body would
not respond to his thoughts. He was aware of what was happening and was very
confused, frightened, and broke down. He has many obstacles he has to overcome
on a daily basis. During this month his Oppositional
Disorder became more severe and he is defiant at times. An example, we
would ask if he was hungry and he would automatically respond with "No!" and
then say "Yes" seconds later. As if he were objecting to whatever we asked him,
even though he wanted to do it.
I had a friend
send me a link a few months ago about PANDAS and
started to research it. I wanted to get blood work done ASAP and find out if PANDAS was the
cause of his issues. He had all of the symptoms that they were referring
to. During this time we went to a Psychiatrist to ensure it wasn't Bipolar disorder. The doctor diagnosed Diego with PANDAS in a matter of minutes. Blood work was completed and was verified
by his neurologist that Diego has PANDAS (a rare immune disorder). Antibiotics were prescribed short
term only and was referred to an Oncologist. The antibiotics did improve some
symptoms but getting worse again. We now know that Diego needs healthy
antibodies through a procedure called IVIG.
The procedure is not covered under any insurance providers at this time and
the expenses will be out of pocket and over $5,000, which we do not have.
I have not been
able to work due to caring for Diego all day and night. I also fear for my
daughter which has already shown mild signs of PANDAS. I can't imagine this
happening to two out of my three children going through this. No one can
possibly understand the nightmare PANDAS can bring to your child and family
unless you have lived it firsthand. We as a family have entered a world of
chaos, fear, confusion, darkness, embarrassment, blame, guilt, anger,
helplessness, and even hopelessness. All of these feelings and behaviors have
taken my family out of a healthy and productive system of consistency, sharing,
predictability, trust, and support. We are fighting for Diego's life back. Yes
he is alive, but this is not the Diego as we know him to be.
insurance does not allow me to travel out of state to get treatment for doctors
that specialize in PANDAS and
could further help Diego with his treatment and recovery. The IVIG is the first step to
Diego in any way possible, even if it"˜s sharing our story.
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