When the going gets tough

It has been a month now, Nisarga is super clingy. We had gone to stay in Virar when my mother-in-law fell ill, and ever since then, he simply won’t let me out of his sight.

His medication also doesn’t seem to be working any miracles, and the dystonia is more pronounced. He has increasing trouble falling asleep. His body just won’t quieten. Arching, twisting, jerking… well… not as bad as that sounds, but he is constantly moving. All. The. Time. Day and night and even in light sleep he can move enough to wake himself up.

This also means that he is spending tremendous amounts of energy, and no matter how much he eats, he isn’t putting on weight. I feed him the regular chapati sabji and stuff whatever we eat, and keep giving him something to nibble as often as he wants. High calorie somethings.

I used to feed him infant food after his meals, so that he was solid full and not just tired of chewing. Now he doesn’t want that anymore. He likes the “real” food more. While that is good, now I’m wondering what I can do to make sure he doesn’t lose weight…

But my real concern is the dystonia. Just had a marathon three hour session trying to get him to sleep. He was sleepy – ready to sleep for three hours, but just as he would fall asleep, he’d jerk, or twist, or arch his back, and we were right back where we started.

The new medication also seems to have added to his constipation, so that becomes yet another reason he won’t sleep.

Here is a video of him generally doing his thing. He loves to be in this passage for some reason. The way he uses, or rather doesn’t use his limbs as far as possible worries me. With the Feldenkrais, he has learned to use them some, but needs reminded, without which, this is what he does.

Frankly, I don’t think the Bexol is working. Let us see what his neurologist says.

In other news, he is becoming addicted to his medication, which I think is a good thing. We never miss or delay a dose. Seeing as how he is supposed to take it long term, I don’t see this as bad at all. Breaks my heart to see the little guy cranky and stiff and wanting medicine – of all things. After the first few days, he has understood it helps him so much, that I can put the tablets in his mouth, and he simply chews and eats them

Reality is coming home to roost. Nisarga hasn’t made any significant progress, his dystonia is getting more troublesome, and I am increasingly exhausted.

The only bright spot is somehow, I found the energy to begin doing the Feldenkrais sessions with him again for the last two days, and they are still helping him. I think I need to quit worrying about how much I don’t know, and focus on learning and doing all I can.

Yes, yes yes!!!

Nisarga’s dystonia means he uses his body in a quite twisted way. To push against the floor, he uses the back of his hands instead of palm. It has been a struggle for over a year now to keep patiently correcting it by turning his hand over so that his palm pushes against the floor. Of course, I can’t do it every time, but as often as possible.

With the new medication, he has been more open to using his palms, though he still uses the back of his hand a lot.

Today, when I corrected how his hands were resting, he put his head down, so that he was sleeping on his stomach with his forearms and palms against the floor palms in line with his shoulders. And something I had made a mental note of clicked in that position. He could push up with minimum effort.

Now, this is a very good position to push up on hands and knees. One which I tried to “place” him into, but he is very touch sensitive, so he doesn’t stay like that.

Using the opportunity, I supported his waist slightly to take off some of the weight and make it easy for him to try coming up on his hands and leaned over him so that he looked up at me, and very naturally, he raised himself till his hands extended and reflexively got his knee under him, and there we were!

Both of us surprised. Me surprised because after all those battles trying to teach him, when I really went with what he was already doing [I tried always, but I am learning from youtube videos - don't have the skill of those guys], it was so ridiculously simple to help him to it! He, because he found himself in a totally different position with a lot of possibilities.

Big grins.

I refrained from over reacting, because that kind of freezes him. He has done it with a random movement that worked, he still doesn’t understand what to duplicate if I tell him to do it again. So we played, and then again, when he was in a similar position, I touched his waist and he came up on one knee and hands.

Then again. Some four or five times. Differently each time. He is experimenting. And it is so beautiful. I went to the loo and cried some happy tears.

We are finally up on our hands and knees and making some attempts to crawl mixed up with it. Yay!!!!

Another moment when I wished so much that someone was around to wield a camera!

Rediscovering Water

To make a long story short, the water storage tank at home overflows when some conditions are met, and those conditions got met today. The result was a big puddle of water in the passage outside the toilet and bathroom.

This is the passage. The area before Nisarga, near the tub of washing gets totally flooded. As it did today. With the mother-in-law busy in the kitchen, I decided to mop it up before Nisarga got into it. I started mopping, and as usual, Nisarga creep-raced out of the bedroom. Before I could put down the mop and wash my hands, he was well into the puddle of water, staring at the water in amazement.

I was like… since he’s already wet, why not? let him enjoy this new experience too. So I splashed the water a bit. AND he broke into laughter. He immediately started splashing the water. This is new – this instantly understanding something. I let him play for a bit and took him back into the bedroom to get him dry. Not a chance. He wanted to go right back there into the fun.

So I distracted him by talking about it. I asked him how he played in the water, and he made the splashing action!!!!! This is beyond new. This is really communicating something not immediately happening. Wow!!!

Realizing that he wasn’t going to quit pining for the water, I ran him a warm bath, and we had a splashing time and I thoroughly tired him out. Right now, he is with his grandmother, having dinner, almost asleep

Earlier in the day, he had started reaching out for things beyond his reach. He had started answering “How does Nisarga sing?” asked by Raka with “aaa…aaa…aaa”. By the afternoon, he was answering that if anyone asked.

He is already using his body more and more, using his hands to manipulate objects better, and using his legs far more than before. The stiffness is decreasing, though he still creeps with them stiff straight, as you see in the picture.

One week post the doctor’s visit, and the increase in the dose of Syndopa and the new medicine… this is where we are. I am so thrilled, I can’t stop grinning. After over a year of struggling all alone, listening to all the wise words about how his problems were my fault and I should not neglect him, etc, finally it is clearly visible that they weren’t. The medicine is distinctly helping.

No words to say how big a load off my chest this is. If these are the changes in one week, I am confident that with the Feldenkrais and the medicine, we’ll be fine.

Dosa with Nisarga

Today when we went out for a walk, Nisarga had already been suffering cabin fever at home (which is a normal state of being) and was desperate to go out. Once out, he was in a grand mood, excited and all. Met kids in the compound somewhat reluctantly – he wanted to be on the move.

On the road, he was happy, animated. Enjoying. When we passed a dosa stall, he almost fell off the pram as he turned to keep it in sight. I have started recognizing this – he does it with rickshaws too.

Dosas being made on a street food stall.

So I treated him to a dosa at that stall. Butter cheese dosa without chutney. Parked his pram on the street facing the traffic for entertainment, and squatted right next to it and we shared our first street food looking at cars come in.

Was good fun, if unorthodox – this squatting next to a pram, and talking with a kid and sharing a dosa, but I found it very charming. Good fun to do on an evening walk.

Good fun. Here is a pic of the dosa guy from another day.

Really like this dosa stall, because they make yummy dosas and are clean

OPD at Wadia Pediatric Hospital

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.

OPD with Dr. Anaita Hegde at Wadia – possible diagnosis

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

What a scare!

Our bedroom has a broken lock for many days. It can be opened from the inside, but not the outside. The rule is to not close the bedroom door when no adult is inside. Particularly if Nisarga is in.

Today, the husband returned home late, drunk, and called me out of the room to talk. Knowing that it was a guarantee for a racket if we remained there, I went. A minute later, he went to the loo, and saw the door open, and reflexively closed it.

The minute he did it, he realized. He tried to open the door, it wouldn’t open. He came and told me.

We immediately started hunting for tools to break open the lock – ideally a screw driver. Couldn’t find. All through I was fuming at Raka and dreading that Nisarga would wake and we wouldn’t be able to reach him.

I found a nail cutter and tried using the small knife in it to open the door. Of course, that wouldn’t work. returned for more searching. Praying that Nisarga wouldn’t wake up.

In the meanwhile, Raka wandered to the kitchen and got a spoon and went at the door. Noisy stuff happened and I cringed, but I knew going there to pick a fight was no use. The spoon fell a few times. Nisarga is particularly alert to metallic sounds, and I hoped that he hadn’t heard and woken up.

Approached the husband, and he was using the spoon like a screw driver. Good thinking. More importantly, it was working. One screw out, two more to go. He started explaining it loudly to me. I hastily went back to the drawing room. If we talked, Nisarga would wake for sure.

Ten minutes and some noises later, Raka swayed back into the room. I was smoking enough to make my eyes tear – or was it me being a mom?

“The door is open” he said. “I may be drunk stupid enough to close it, but I opened it also. You should trust me more. Is there any more of that vodka you are having?”

I had already rushed halfway to the bedroom to check. The door was indeed open. Nisarga was sleeping. All is well that ends well.

“You are totally useless in an emergency. You should trust me more. I care about him too.”

Indeed. I had forgotten in my blame, but that is true.

Nisarga likes a Bengali Song!

These last few days, Nisarga has been absolutely cranky. He has a cold, plus is teething a pre-molar. One of the pointy tips of the tooth is out, another is under the surface. That must be painful.

Painful or not, he is cranky, clingy.

One blessing is an accidental discovery:

When Bhupen Hazarika died, I played “Manush Manusher Jonya” for him on headphones, and he was absolutely fascinated. He heard it several times, including tolerating the headphones. So, grabbing that idea, I played it again, and it works!

Music has always been a solution with this guy

So, I have now heard this song gazillion times. Good thing it is such an awesome song, or it would have been torture. I love it too… still not tired. What an awesome heart to heart song! Maybe that is why Nisarga likes it.

Putting a baby to sleep

So after over two years of experience, I consider myself as somewhat experienced at putting a baby to sleep. At least this particular baby.

There is a formula. When it is time for bed and I see eyes drooping, pick him up and let him settle to sleep. If he won’t sleep, check hungry, thirsty, uncomfortable, overtired. In that order for Nisarga at least. By the time you reach the end of the list, the little guy is asleep.

Not today. Checked all. Double checked. Triple checked. No go. He was crying, sobbing clinging. Rocked him for two hours flat. Fed him once in the middle of it. No go.

Shoulders aching and frankly fed up, I put him down praying that he wouldn’t start crying, so that I could at least visit the loo.

As I lowered him, he started whimpering. Resolute, I put him down anyway. He curled on his side and slept!!!

Then what were the last two hours all about?

I yelled at Nisarga today

Nisarga has a cold. He has been whiny, fussy, clingy all day. Shoulders tired of carrying him. Ears tired of hearing crying I have no idea how to fix. I take care of his comforts, but …. I suppose he is just …. unhappy.

End of day time, and he was showing no signs of wanting to sleep. Only crying, clinging…. I had been thinking of an ugly incident all day today, where two people got stabbed on the street and died, and justice is being obstructed by politicians themselves. It is a frustrating subject. Perfect recipe for short tempers, and I should have seen it coming.

I was trying to rock Nisarga to sleep and he was in a kind of limbo. Not asleep, but quiet. And I reached for my much neglected mug of tea. That was the time for him to jerk and throw himself around crying again, and the tea spilled on both of us. It wasn’t hot, of course, or I’d never have brought it near him, but still, terrified he could burn himself like this (illogical, I know) and partly tired and frustrated myself, I just yelled at him asking him what he wanted and why he wasn’t sleeping.

Eyes big as saucers, lower lip trembling, sobs started spilling… and damn. What was his fault at all? He was ill, miserable and showing it the only way he could. What did I expect? For him to hide and suffer alone if he was unhappy? Whose job was it to keep him safe from things he didn’t understand? Mine. I felt like a total rat.

I hugged him close, apologized, sang him a song, offered water, did all I could to get him settled and comfortable again, and was humbled that he trusted me again. Not that he had a choice. A friend once wrote:

A kid never loves you. They are dependent on you, they are used to you, they know comfort through you. Love comes much later, if they do have a choice and still choose you – you have to earn that.

So true. It is so easy to think of myself as a caring parent and act in an uncaring way. I was ugly, I was disrespectful, and I ignored both our tiredness and irritation till it spilled over, and then took it out on him. Not proud of myself today, but learning.

And maybe I did learn something, because fifteen minutes after my great enlightenment, the little guy was fast asleep. Maybe he simply needed me to be more respectful of his mood to be comfortable?