Note: All the documents related to the medical history of my daughter Aanchal Parmar are available @
I am Hardeep Parmar from Noida, UP/Delhi(NCR). I work for Adobe Systems
Noida, India, in the capacity of Sr. Computer Scientist.
I am putting forth the entire medical history of my daughter as a head start, for the reader to have a reasonable idea of my daughter's case.
I was gifted with a daughter on 28 Oct 2013.
However soon after birth, she was diagnosed(with
about 10 days delay on 6th Nov 2013) with Bacterial Meningitis(Term SGA With Neonatal Septicemia With
Pyogenic Meningitis With Hydrocephalous). She was on the ventilator
for about weeks time(1 Nov to 6 Nov
) and was eventually discharged after about 1 month.
See discharge summary as attached(Aanchal_CMC_Discharge_summary.pdf).
She has survived Bacterial Meningitis and
recovered from it, but her brain has undergone substantial damage during the
course of the infection.
a) I have 1.5 Tesla MRIs for the baby
conducted before diagnosis/treatment(i.e 30/Oct/2013 immediately after birth)
and
b) 3 tesla MRI after treatment(dated 01/Jan/2014 in Ganga Ram hospital Delhi)
and
c) Another 3 tesla MRI was done on 16 Feb 2016 at Jaypee Hospital, and details(iso DICOM images and report) for it can also be downloaded from the google drive link: https://drive.google.com/folderview?id=0B1xq6V6OB1JXSzJ4Y1U1S3h2V00&usp=sharing&tid=0B1xq6V6OB1JXYlF6S21ELUhiR2s
I also did an additional MRI on 6th Jan 2015 and I am attaching the report of that MRI too. Unfortunately, I do not have images for that MRI.
If you want to know how to open /view MRI digital images,
please drop me an email ASAP or please give me a call on my mobile(+91-9818632316). It
is very easy to setup MRI viewer.
I am attaching reports of MRI as Baby - Medical History
and Reports 3 JAN 2014.pdf.
I also have 5 EEGs for her. I have reports
for all these investigations. I am attaching 3 EEG reports as attachments.
I also have the EEG graphs, and I
shall upload them if you ask for them.
She had lots of seizures early on but with
following AEDs her seizures are under control now. She was born 2kgs
but her weight today is ~ 8 kgs(2016) and is now 10.5 kgs(28-10-2020). She is talking following medicines currently.
- Keppra(Levetiracetam) -
1 ml x 3 times a day = Total 3 ml
-- Now on (28th Feb, 2016) reduced dose of (1 + 1) ml twice in a day = Total 2ml
- Frisium(Clobazam)
- 2.5 mg x twice in a day = Total 5 mg
- Triptal(oxcarbazepine)
- 90 mg(1.5ml) x twice a day = Total 180 mg(3 ml)
-- Now on (18th Feb, 2016) this has been removed i.e she is not taking oxcarbazepine anymore.
- Lamitac(Lamotrigine)
- 5mg - 5 mg - 5 mg = Total 15 mg in a day. -- Now (since 2018) this has been reduced to 5mg -5mg BDS.
- You can also Please
see Dr. Veena Kalra's prescription as attached.
1. Her
development has retarded a lot. Even though it is over 2 1/2 years now, she still looks like a 4-5 month baby(2015)
1. Her development has retarded a lot. Even though she is 7 years old, she still looks like a 1-2-year-old baby(28-10-2020).
2. She still
cannot head hold or sit. She tries to lift her head when forced but can not retain the position for more than 2 seconds. However, she moves her hands and legs(limbs). She does
not make any sounds except for crying if in pain. But otherwise, she
does not cry too much. As of 28-10-2020, she does hold her head on a few occasions, and pick her neck up, but not voluntarily.
3. She
sleeps for about 10 hours in a day, for about 4 hours in a single stretch. Of late(Feb 2015 onwards) she has started sleeping sometimes for about 8 hours in one single stretch. As of 28-10-2018, she has sound sleep.
4. Even
though she seems to very feebly respond to random sounds at times, but still
she does not turn her head/neck around when you make any sound. There was a time between Oct 2015 to Jan 2015), when I used to see her getting alert on some specific sounds...But starting Feb I see her responding to sound to a lesser extent.
5. She does
not respond to any object movements around her. if you take a spoon to her very
close, she does not respond to feed unless you actually touch the spoon to her
lips.
o
However, if you turn on the light in a dark room, she turns her
eye to the extreme right regardless of the direction in which the source of light is located...Not
only does she turns her eyes but she also turns her neck around...which otherwise in normal circumstances she
does not.
6. She does
not to recognize any of us thus far.
7. She can
however gulp solid food and suck bottle milk..and we have now moved away from
bottle feeding to spoon-feeding.
o
In fact for the
first six months of her life she was getting fed only through RT. We then
moved to the bottle and now she is on spoon.
o On the face of it, it does look like she responds to taste sensation.
8. She has
no issues whosoever picks her up, and she feels no sense of attachment as yet.
9. She can
not grab or hold anything so far.
10. She does
not smile much(only does so sometimes when is in sleep/half-awake).
11. Her BERA
and VEP tests(see reports attached) are abnormal and show no sign of
video/audio response.
In the recent past, I had recorded her seizures on camera and posted them
on youtube. However now with those medicines, her seizures are much better(provided she is not exposed to any stressful environment).
I am already showing my daughter to many neurologists and my sister
herself is a doctor(Intensive Unit and Critical Care).
I have explored various options and I am left with only giving a shot at experimental stem cell therapy.
I
have a fair understanding of the discipline of Stem
cell Therapy and I know
that is it upcoming and experimental and comes with its own set of risks.
However given the condition and prospective outcome of the child in its current
state, I would in uncertain terms declare that
- I am willing to spend any money just to give it a shot at this experimental treatment/therapy.
- I am willing to accept that my child may
not survive at the end of treatment.
- I am willing to give
anything legal in writing as to the consequences.
- Even if my child does not survive, I
would wish that this opportunity be taken to collect data and validate
various scientific hypotheses in the field of Stem Cell therapy...I would be willing to see that my child's life(or death) could make a contribution to mankind in terms of
understanding Stem cell research and with the hope that it
would one day make difference to the lives of millions of patients.
I have all documents related to her treatment in electronic forms too,
and I can send you as and when required.
Since my child has a tendency to go unstable if exposed to a stressful environment(like for e.g long journey), I
would like to solicit your advice on whether I should bring my
child this very first time or can I come alone with all records(including
digital records, MRI images, EEG Graphs).
if after going through records, you suggest that I bring the
child, then I can do that as well.
Hoping against hope.
Sincere Regards,
-Hardeep Parmar.
Ph: +91-9818632316.
Update: 9th Jan, 2022, 7:12:05 PM...Fought hard, very hard(both of us) but lost ... to this INCOMPETENT, CRUEL and INSENSITIVE world.
I tried so hard
And got so far
But in the end
It doesn't even matter
I had to fall
To lose it all
Note: All the documents related to the medical history of that most innocent soul Aanchal Parmar are available @
