experience to give some mental strength to all those
who are going through a difficult time and need to
know that they aren't the only one dealing with
this freaking condition called NEPHROTIC SYNDROME.
My son was born prematurely but by the grace of God and
prayers of my near and dear ones he made through the
prematurity period. Though he often fell sick, things were all
under control. After a short trip to Bahrain, our happy family
was thrown to the deep end.
The puffiness over the eyes made me believe it could be
some kind of eye infections. we went to see a doctor. After
preliminary checkups, the doctor gave a piece of bad news
that it could be the nephrotic syndrome. Our heart sank and
after catching our breath with bewildered thoughts we
tried understanding what it means. The doctor suggested
admitting my son immediately... I could still remember the first
night at the hospital praying and wishing that it shouldn't be
what the doctor thought. A series of test confirmed about
the NS. And our journey started to deal with this condition.
There was no improvement almost for 15 days...they
injected albumin and a daily dose of prednisolone. On the
17th day, we decided to move to India as we don't have a
pediatric nephrologist in the hospital.
We met two pediatric nephrologists and understood our
situation pretty well. The steroid therapy was adjusted to
his weight and the dosage was explained. During the course,
he gained weight and lots of hair on his body and face too.
My little bundle of joy was hungry all the time and very
stubborn in behavior could be the side-effects of predo.
After a week my son started showing nil results for urine
protein. The doctors though clearly mentioned that very few
children come out of it and other keep relapsing till they
reach their teens. keeping our fingers crossed we waited
to see if our son is among the luckiest one. After tapering
the dose and stopping it for 4 months it relapsed again.
With a heavy heart, we consulted nephrologist and the
prednisolone came into action again. The dose was tapered
and stopped with a course duration of 3 months. And just
after 14 days, he relapsed. Luck wasn't favoring us.
The third time the steroid therapy was started again, by
now somewhere in my mind I thought to search an alternative
medicine as I now predo has a lot of side effects on my
little boy.
I started researching but all that I was ended up was papaya
leaves but I haven't given that a shot as my son was on
predo.
At the time of the third relapse, our nephrologist suggested
of trying levamisole. so as to stop my son from relapsing
frequently. Hoping that maybe levamisole is the wonder
drug that could end all our worries we started the treatment.
Right after 15 doses of levamisole my son started getting
a fever at night times, as we were out of the station we could
not get in touch with the treating doctor. On the night of 25th
DEC, my son's fever shooted very high and it wasn't
subsiding at all, we took him to the nearby hospital. The
blood work was done and we came to know that because
of the new drug my son's neutrophil count dropped to 1% ..
My heart sank and we admitted him to the hospital. After a
series of antibiotics, fever subsided and the doctors
suggested giving him filgrastim injection to improve his
neutrophil count. The injection resulted in excess of WBC
but we got discharged as the fever was under control. A week
after coming back to our native place my son felt sick
again with a high fever. We were devastated took him to
the treating nephrologist admitted him this time it was more
awful as our doctor suggested for bone marrow aspiration..
the world seems to come to an end. I could never forget how
badly we were wishing that my son gets well soon and
there shouldn't be any more complications. By the grace
of God, the reports came negative. Predo was the rescuing
drug again. But after going through so much of trauma we
were mentally exhausted. By any means, My son need
to develop immunity and ones again my search started.
Met a homeopathic doctor and an ayurvedic doctor and finally,
my search came to an end upon meeting an unani doctor.
he was a retired HOD of pediatric department.
The unani medicine did work for my little one, the swelling
was gone he was on a minimum dosage of predo i.e 2.5mg
alternate day. His immunity quite improved a lot. After a year,
unfortunately, he relapsed again but instead of higher
doses of predo, we hold on to a low dose of predo and a
soup by our unani doctor. Everything looks wonderful as
long as my son remains in remission. He was 18 months old
he first encountered with the condition and by the grace of God
he is now 5 and half years old.
I shall be discussing the soup in my up coming blogs.
Feel free to share your experiences..
MAY GOD BLESS EVERYONE WITH GOOD HEALTH
Do keep my son in your prayers...
