Unable to get an appointment with Dr. Anaita Hegde soon, and unwilling to wait further after having spent so much time with lack of money, depression, domestic issues, etc we decided to go to the OPD at Wadia hospital where she consults on Fridays.

Was a surprisingly inexpensive affair and straightforward if hideously time consuming.

Rs.20 doesn’t even come close to the Rs.800/- we paid for the previous visit, so this is far more affordable as well.

On the train, it was mind numbingly crowded and Nisarga hated it, which meant it was nerve wracking for me. Finally about half way of the hour long journey done, we got a seat from some good Samaritan who had seen us struggling for over half an hour.

That didn’t work. Sitting with a wall of strangers packed in his face was the last straw, and Nisarga wailed and fumed till I stood up again. Somehow, we managed and got to the Wadia Children’s Hospital.

Knowing we would be late, Raka called up my father and asked him to file the case papers. I could have told him then and there it would be no use. Dad simply isn’t that kind of person. He insisted that without Nisarga’s medical papers, they wouldn’t make his case papers – which is the biggest load of bull shit, but then that is my father for you. He believes whatever he decides to believe.

But he decided to come anyway, so the train journey was also about fielding calls from him reminding us repeatedly about things like which station to get off, name of hospital, where can we get a taxi, etc till I simply stopped taking his calls.

Finally, we met at Wadia, and of course, he hadn’t filed the case papers, so I stood in the queue and did it. No. They didn’t ask for his medical history.

I peeked at his register, and saw that our name was third on it. This looked good. We could be in and out of there fast. Famous last words.

We were asked to wait in a massive hall with many, many people in it. Kids everywhere. My dad started nagging for us to eat – as though this was a picnic! So we took turns eating. I went first, since it was unlikely we’d be called immediately and I should be ready to go when our turn came. My father came with me and made sure I ate. I suppose it is caring, but I was too wired for food, honestly.

As things turned out, it was a very good idea.

Our turn came, and a very rude ward boy yelled out Nisarga’s name. My father was walking him around, and it took him a while to get there and the man just yelled at us and then bullied us to a room where many doctors were sitting on one side of bed/tables with one stool each on the opposite side.

None of them were Dr. Anaita Hegde, whom we were supposed to meet, so I told him that, and he yelled at us again to just do as we were told. Total concentration camp scene.

Various doctors were in various stages of consultation with various patients and we found one who was free – like a cafeteria table He took Nisarga’s case history in meticulous detail. I told him to refer to the old papers and take only the remaining info, but that wouldn’t do. So we talked, and talked and talked. I started ADHDing out and probably rushed the info, but he kept bringing me back to each stage – even when there was nothing more to say about it.

I understood that these doctors were some kind of trainees working under Dr. Anaita Hegde, since she is in high demand, and the OPD is impossibly full of people for one person.

He kept our papers and told us to wait and that he would call us when the she arrived. It sounded like such a quick thing… she’ll arrive any time now, and then we’ll show her your papers.

In reality, EVERY patient in that hall met her or another doctor who was there with her – the doctors we had met literally ushered people to and back and detailed out her instructions in case we didn’t understand, etc. The initial visit with the doctors was to streamline everything so that her time is not wasted.

Our turn came, and we stood inside the door waiting for the previous patient (who had just started their consultation) to finish. THIS was such a piteous sight. It was a plump boy about ten years old or so. I don’t know what exactly his problem was, but he walked stiffly, and made noises rather than spoke and was hating this whole experience thoroughly. He had been on the table next to ours when we consulted the junior doctors.

Then we had seen him resisting entering the doctor’s room before us, digging his feet and refusing. His father physically lifted him and took him in kicking and screaming.

This time, he was sitting on the floor, hanging on to various bags, crying, pleading with his parents for something. The hassled parents were ignoring him, using this opportunity to speak with the doctor rather than their son. And he was such a piteous sight. He was crying for twenty minutes, sitting on the floor, offering bags, banging them on the floor, begging for attention. And I hate myself for not going and sitting next to him to give company.

I didn’t want to interfere in such an important consultation, and the parents had a very resigned, been there, done that kind of look. I kind of understood them too – this was an important thing for their son’s health with a rarely available and excellent doctor, but it made me angry that they both ignored him – surely one could pay attention to their son?

It made me appreciate both my father and husband more where they always trust me completely to talk with doctors when they come along and support by paying as much attention as Nisarga needed so that he didn’t either disturb the consultation or feel neglected.

While this pretty much stems from no one having taken enough of a stake in Nisarga’s care to talk knowledgably, it also was a big plus that they recognize it and support how they can when needed. No such thing as absolute good or bad.

The actual meeting with Dr. Hegde was amazing. Since we were standing in wait for a long while as she dealt with another patient (and all the doctors were also in one common room/hall), I had a chance to observe her work.

How different she was from the last visit with her in that Air-conditioned room and fancy facilities. I actually liked her better. She was working at top speed. Listening, examining, speaking with parents, really listening to them, advising, addressing concerns, giving directions in undertones to the assistant doctors…. whoa!!!!

Gone was that sophisticated, made up hi-tech doctor and here was a person doctor. Seriously amazing. And far more beautiful with stray hair slipping the clips and a lot of straight talk with colleagues, etc than the very formal earlier meeting. I could imagine her anywhere in India, dealing with anyone with respect. Decided then and there, regardless that it was cheaper, I wanted to consult with this person and I was going to suck it up and do the bloody journey and mind numbing wait (not that the earlier meeting didn’t have a mind numbing wait – only it was in a private clinic).

She listened carefully, and it sounds like we have a direction. Seems increasingly likely that an imbalance in brain chemicals is causing Nisarga’s difficulties. Writing a separate post on the medical aspects so that it can be referred to easily.

If you remember the previous meeting with Dr. Anaita Hegde, you will recall that I left it feeling that Nisarga was in good hands. His reactions to Syndopa Plus shook me a little, and the physiotherapy seeming counterproductive didn’t help. I later stopped all medication on advice of a family physician.

Then, when I had money, and I did the tests, I also started the Syndopa again (that post is still in the drafts), so that when I consulted Dr. Anaita Hegde again, she could see the effect – since she had recommended trying it.

Turned out to be a very good thing in today’s meeting at the OPD at Wadia Children’s Hospital.

The second time around, Nisarga has been on Syndopa Plus for about a month now, and there have been subtle but constant improvements in how he uses his body. He still doesn’t crawl, but he creeps at full speed now, and uses his legs more, which seems like a precursor. His use of hands has improved significantly. He has started pointing at things, holding things in two fingers, throwing things, banging them… and when he is really upset and crying, he comes up into a W-sitting position on his own – he had lost that.

There still aren’t changes in terms of milestones, but there is initiative in those directions. He holds his balance much better when put in a sitting position, and the head lag is almost gone. The dystonia is still there, though slightly reduced.

On the basis of all this, Dr. Hegde thinks that the Syndopa Plus is helping him, and seeing as how he isn’t showing adverse reactions this time (increased body weight?), I should continue that at 1/4th tablet three times a day. She added Bexol today. I am to begin with giving him a quarter tablet thrice a day, increase to half tablet thrice a day in ten days and then full tablet in another ten days.

She said that the dystonia and not lying on back at all in particular and some other symptoms and tone made her suspect an imbalance in brain chemicals – dopamine in particular. She had suspected that the other tests – opthalmic testing, karyotyping, metabolic screening and BERA would turn out normal, but they were important to rule out, and them being normal makes it even more likely that her hunch was correct.

The test to confirm this is very expensive and costs about 2 lakh and is done abroad, with spinal fluid from three points on his spine collected and shipped on dry ice – basically testing how impulses are getting transmitted. It is called a neuro-transmitter test. The test is offered for free on a humanitarian basis for people in need, but even the couriering on dry ice, etc costs 9k.

Also, just because it is free, the generosity shouldn’t be abused and she uses it sparingly so that most people gain, so she first tested her hunch. If the Syndopa caused any improvement at all, and other causes were reasonably ruled out, it made sense that this test would nail things. Now that it seems right, she’d like confirmation by doing that test before committing to a long term treatment plan. That probably was at the root of all the disbelief from all other doctors that Syndopa was prescribed without diagnosis. If this was told clearly, then it would make more sense, and I would probably have continued it all through. But hindsight is 20/20 and best not debated.

I suppose this is where her formidable reputation as an excellent pediatric neurologist comes in. While most doctors were surprised at the Syndopa, each one told me to continue on the track she had put me on in terms of testing. There was absolutely no doubt in anyone who knew her that she was good, very good. I guess, I have to set aside my suspicion of doctors. Twitter had destroyed it almost anyway

We have to wait a month or more to do the test, because the last three samples she sent had trouble in the customs in Spain, so she wants that to be sorted before sending more.

If confirmed, this will mean medication for several years at the very least. At the same time, the medication will not be complicated, and she estimates chances of recovering full function as very likely. We are already tentatively started on this track and any response to the treatment in itself will also be confirmation of her hunch. So this is a very, very good thing. Never have I looked forward to an expensive test so eagerly, nor have I ever hoped for a test to come out positive so much