Update on Nisarga’s health

To make a long story short, much has happened since I used to write here regularly (and I think I should update regularly for reasons more than memories – to record changed in health).

Nisarga had shown no real improvement in his physical development since we started treatment. He was on increasing doses of medicine without a real diagnosis and his body was actually stiffer than it was before treatment. Doctors considered this to be a regression. I was not so sure. His legs were straight and stiff and turned inwards till the top of his feet touched each other. He had developed extreme aversions to holding anything or putting weight on his feet. No way this was better than before we started treatment, regardless of how good the doctors were.

I had quit the physiotherapy already because of no results, and about a month back, I tapered off his medicines till he is now completely free of any treatment prescribed by doctors. This has actually helped him improve. In the last month, he is sitting up much better, he is holding objects in his hand more. He has learned to put a spoon into a bowl, interacts more, increased babbling.

Some of it seems directly related with stopping the medications – the reduced stiffness, for example. Other things are what we achieved through the Feldenkrais method. It is the only thing that hasn’t failed us yet.

So currently, we are only working daily with new ideas from the Feldenkrais method and eating well and loving a lot. Each day seems to open new abilities than the one before. It is tough to say when he will stand and walk, but whatever is happening daily is building on the previous day – consistently for a month now. First time I’m feeling we are on some kind of a track toward growth.

Considering that I am learning the Feldenkrais method completely by myself, I’m going to try and update on the blog on and off as a kind of working journal.

 

In other news, I was able to help two other people – a child with a hand with very limited movement and an adult with pain. If my learning continues, I hope to be able to offer help to other parents who want to help special needs children expand their physical abilities. I think I am developing some amount of reliability with my skill. This could change lives if I do it seriously.

Nisarga has learned to open the fridge

God help me! Every time the kid goes out of sight, he is right there at the fridge, with its door open, basking in the cool air. On one hand, I’m thrilled, as always when he learns something new – it is an obvious solution, yes? Hey! It is hot. I know where mom keeps the cold air :D

He’s cute and obviously quite delighted with how he has figured this out, so I’m not bursting his bubble. I let him enjoy it for a bit and then distract him and pray it works…

The birth of a girl

A doctor from Pune has stopped charging for the deliveries of girls or treatments. I think it is a brilliant stand to take.

The reason for it is sad though. I was reminded of the time when I was in the maternity home for the birth of my son. Two girls were born (and other boys too) and they remained in my mind for a long time because of the difference in how they were received by their families.

Fascinated with the laptop camera

Rofl. Today morning, Nisarga hit some keys on the laptop, and started the camera, which is something even I haven’t figured out. So, we clicked some pictures and made some effects. Here are the results. Some of the better ones, that is.

[satellite]

He found the graphics of the software and the animation of the snapshot flying to the folder when clicked so fascinating, that he wanted me to keep clicking. We clicked some 80 odd pictures – almost exactly like each other :D

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.