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