Nisarga

Blog

  • Doctor’s visit in Parle

    Much has happened since the previous posts. I finally gave up on trying to patch the marriage and have moved back to the father, which isn’t a big improvement, but still as step in the right direction.

    So, we needed a pediatrician in Parle, and we went to one this time. And what an ace!!! Nisarga has five tests pending – all of them off beat and not easily found, so most doctors kept pointing us to Jaslok, where their appointment procedure was confusing, and it is an hour’s drive at least, so multiple appointments would be a pain.

    In an effort to get what we could done nearby, so that at least the agenda on the day we did go to Jaslok was lesser, I got the opthalmic testing done yesterday. The doctor found nothing of concern, but recommended another test – again at Jaslok.

    Today’s doctor was able to provide us options that were literally within fifteen minutes at home, plus definite contact numbers and so on. Very useful.

    He also was the first doctor to acknowledge that Nisarga’s spine indeed seems to have a curve. Most doctor’s had shrugged it off as something of less consequence. So I wasn’t being paranoid and his back does have a curve.

    Nisarga was his usual engaging self while we waited, and lost patience rapidly once we went in. Luckily, the location of the clinic is very charming and child friendly. Here are some pictures of Nisarga from when we waited.

    At the end of the day, we are to do four more tests. The Karyotyping, Metabolic screening, BERA and eye opinion. Pretty much as planned originally. Just confirmed. However, he provided us on information where we can get these done without having to go too far. Also phone numbers from each place for getting appointments. Much improvement over the crazy attempts with Jaslok – very strange that no one in their ENT seemed interested in picking the phone and the one time they did, they sounded like they hadn’t heard of BERA, even though the receptionist had connected me with great confidence.

    Earlier, most of the advice had been to go to Jaslok, which had been a big problem for me both in terms of expense as well as managing without assistance with Nisarga. So this is a most welcome visit in terms of making things possible, even though nothing different is known or happening on the medical front because of it. For the information of anyone else who may need it, I’ll share the details as and when we do the tests.

  • Meeting Dokya

    One of our friends from the mountaineering days is Dr. Milind Chitale. We had been planning to take Nisarga and his medical papers to him for a friend’s opinion on his issues and treatment.

    Accordingly, finally we took Nisarga today. My father had come along, which was a bit awkward for me, because there were things I wanted to speak with Dokya I was not comfortable with the father knowing.

    Luckily, because of the hurry and stress around the leaving to meet him (both my parents are nags and uncaring of quality of process or consideration for people as long as the action is done) Nisarga started crying almost as soon as Dokya was done taking a look at him and his body movements etc. So I suggested that the father take him and head home, while I continue the conversation and return separately.

    That was good, because we were able to speak about Nisarga in considerable detail.

    He disagreed with Dr Parul’s advice to wait and see what happens, though he agreed in the sense that there was no point doing anything before the test results arrived and stressed that the tests must be done at earliest.

    I think I trusted this advice more than anyone else. Maybe because he was also a friend? So it is decided. We need to do opthalmic testing, BERA, Karyotyping, metabolic screening. About the expense, he said it might be better to go to KEM, which is far away, but far cheaper and has good doctors.

    He asked for a few days to find out which doctors to meet and when to go. So, that is decided.

    I also spoke with him about our break up and my depression and he suggested that psychotherapy might be a good idea, but we could wait and see in the sense of Nisarga being more urgent and how the shift to the parents impacts me.

    Left his home with a huge sense of relief. Finally I had a plan of action in hand solidly. Surprising how I had reached such a stage of unsurety that even written test prescriptions were not enough to prod me into action and it took a friend with the knowledge and right to go “do this, then this, then this. Don’t think” to make me feel able of doing exactly what I was supposed to do all through.

  • A conversation about Nisarga’s health options

    http://storify.com/vidyut/a-conversation-about-nisargas-health-options

  • Nisarga’s medical history

    Been working on this post for a bit. Many people asking exactly what is wrong with Nisarga, so putting it together the best I can.

    • He was fine till he was 3-4 months old. Had just begun turning to side, catching toys, etc when he kind of just… regressed.
    • Low body tone – hypotonia. Just used to lie on his back, not moving.
    • Started developing flattening of head, slightly curved posture (scoliosis?)
    • Turned to side again at 6 months. Turned over at 7 months.
    • Used to bang toys a lot (broke one musical keyboard like that). Used to raise himself on hands. Stopped raising himself on hands.
    • No sitting, no crawling.
    • His pediatrician used to tell us all was fine and some kids were late till he got one year old and she suddenly asked us why we hadn’t been more proactive. Obviously she didn’t remember what she had said. Changed pediatricians, pursued more doctors.
    • N started physio. Did for 6 months. No milestone achieved. Stopped. He didn’t like it, and it wasn’t helping.
    • Got MRI done. Clean. Nothing noteworthy.
    • Met neurologist who prescribed Syndopa, which was a disaster, asked for some expensive tests (karyotyping and metabolic something), which I wasn’t so sure about, but am planning to get done now.
    • Meanwhile, he seems to be developing tactile aversions. Doesn’t raise himself on hands anymore, doesn’t hold objects anymore, or touch hands together.
    • Still not sitting, crawling. Forget standing, walking.
    • Not talking
    • Refuses to use hands for things like waving bye (he can, he has sometimes)

    My own observations and stuff (that has so far been not picked up by docs as significant):

    • He seems to be developing scoliosis, which further makes it difficult for him to balance himself.
    • Hypotonia
    • Some spasticity
    • Scissoring (phase, decreased now)
    • Does not arch back properly, making crawling, sitting, everything inefficient

    That is pretty much it. I can provide specific info if needed.

    Other background:

    • Born 3 weeks early.
    • APGAR 9/10 after 5 min 10/10
    • Birth weight 2350g
    • Labor – Induced, long, uncomplicated
    • Jaundice when young. No specific medication or treatment, took into sunlight. Resolved in days.
    • MRI done. Normal.
    • Currently stopped all treatment for a month on advice of family doctor.

    I have done some Feldenkrais work with him, to which he responded well, but stopped as it didn’t do well with physiotherapy. Pretty much the only thing he has responded to so far.

    Doctors so far: Pediatrician, family doctor, pediatric specialist (don’t know difference from pediatrician), pediatric neurologist, pediatric physiotherapist.

    Consulting and advice from assorted doctors. Nothing surprising from current track.

  • Not doing right by Nisarga

    Getting a “much deserved” lecture on how to stop avoiding home life and start “doing more” at home. House is a mess. I know. I should hire another maid. Can’t afford. They all have their problems with me, but still don’t want me to leave. They are large hearted. I wish they weren’t. What they say is right. I am too depressed, using work as an escape, should be paying more attention to home and taking son out more. I don’t feel like doing it. Feel vaguely guilty (as intended) for Nisarga. The rest didn’t stick. Am I a selfish, callous person with a big ego? Probably. That is all I can afford right now. No energy to explain my landscape right now. No energy to explain the overwhelming task of using brief spurts of time to “do everything” in the house that reverts faster than I can fix. No energy to explain the futility of tidying up, when the Raka uses the floor as his godown. No energy to explain that I don’t have the money to pay the bills. No energy to explain that the way I get spoken to makes me want to avoid people and that I think its okay if I do so. Depression is a luxury name for being lazy apparently. Feel sad about Nisarga. I do my work online, and I do it more and more hoping to earn more money, but mostly as an escape because I get very depressed and angry when I look at the house. I exit the computer only for my son, and very brief spurts of work around the house. Many essential things neglected. Why me? Apparently, it is the fate of a woman to be saddled with uncaring men. What hurts is why Nisarga? He didn’t do anything to deserve this shit. Fast losing hope of finding any understanding in this place. Don’t wish to leave home, because for what its worth, in my nice little depressed world, it is the one familiar thing. The known evil, so to say, but coming to accept that I am only going to sink more here.

  • Drawing with Nisarga

    Uh…. no. He didn’t actually draw these, he…. directed them.

    He was fussy, so to entertain him, I started telling him about the website design work I was doing. One thing led to another, and we fiddled around with the Harmony script for drawing – an adapted version of which forms the background of this site.

    He liked the look of the colors moving around on the page, so we did a lot of that.

    I showed him how to write his name, drew him various things like kids playing, mountains, flowers, computer, etc. Things were moving quite fast, so I don’t have a whole load of screenshots, but these are a few, just to show off my son’s choices, and the very marvellous Harmony script by Mr. Doob.

  • Conversational contexts

    Nisarga has really started picking up on overall meanings/tones of conversations. And he’s on my side!!!

    Make that he’s on my side in defending his rights. Two incidents.

    We were meeting the big physiotheripast – the main woman – Dr. Urmila Kamat. She comes once in a while and meets a lot of people, so invariably the appointment timings get pushed around. Not the end of the world, but Nisarga really has a very low threshold of waiting for appointments. He fidgets, demands to see Mickey mouse, wants to see the road and the cars and generally do something non stop till he tires himself out, or be cranky till he tires himself out. This delays in appointments business is really not a good idea for younger kids (or older… or adults).

    So, we went in, and he was already fussy. On top of that, it was an unfamiliar social context from what usually is in that room. he didn’t particularly like it, but bore it with that resigned cooperation that is so characteristic of him once pushed beyond his energy zone. It was fine, and I preempted any fussiness by distracting him, etc.

    Till the doctor lit into me for immediately answering him every time he cried. Apparently I should not do it, which is another big argument for me, but I’m used to this dictatorial nonsense, so it goes in one year and out the other. Nisarga was giving her dirty looks, which could have been his mood, but later, as she tried to speak to him, he deliberately looked away at everyone except her. Good for him. There is no reason that he should smile and interact with someone recommending that his distress should be ignored.

    The other time happened when my mother-in-law visited recently. With all the candidness of her generation, she declared that there was nothing wrong with him, and that I am not feeding him enough/correctly. I honestly have no answer for that, since I really don’t know what’s wrong. The lines of the doctor’s investigation seem completely wrong to me. So her guess was as good as mine as the doctors. I asked her what she meant.

    She described a diet that was way less than what this guy eats, but in her eyes, it was the “routine” that mattered. I feed him when he is hungry. According to her, I should feed him at certain times only and ignore him if he asks at other times. She even offered to take him away with her for a while to get him into a healthy routine. Uh… no, it isn’t as “child stealing” as it sounds. That entire generation seems to be okay with kids being sent out to relatives etc to change habits or break them. And parents being advised to send their kids somewhere to ‘fix’ them. It was an idea, not a kidnapping. That will get him eating healthy!!! Well, Nisarga was taking none of that. He had been solemnly listening to the conversation, but we were both surprised when he broke in at this point making angry sounds at the MIL and clinging to me!!!!! Two minutes later he asked HER for food and when he got it, he wasn’t really hungry. MIL was feeding him. Just ate a couple of bites, but refused to let be put the remaining back in the kitchen. Oh boy, we are growing up, we have opinions and we have no issues with making them known. My boy!!!

    Note: Though if he was really smart, he would have known that his grandmother has a lot of this “rules” kind of thinking indoctrinated, but when it comes to action, she fed him as lovingly as I do – totally out of “schedule”. At that point, if I had suggested that he wasn’t really hungry, I’d have gotten blasted for depriving the poor tyke when he was asking for food 😀

    Its love, and its fear. Both my parents and Raka’s don’t live with us, so they don’t have the reassurance that he is happy and improving slowly but steadily. The longer this is happening, the more “wild ideas” they get – its fear, concern, love. Just saying this, because the incident is written leading to Nisarga’s actions in that one incident. In reality, other than me, his grandmother is the only person I can leave him with without second thought. They adore each other. She takes him for long walks. That explains it all 😀

  • Abgugiya

    No clue what this means, but it does mean something crucially important. He keeps saying this on and off. Abgugiya and boogiya. He says like he’s identifying/recognizing something.

    Boogi seems to he “Bhook lagli” – hungry. Not that the two words sound remotely similar, just from his expressions and the time he uses it as well as very clear “yes” response if asked if he’s hungry after saying boogiya.

    No such joy for the googiya stuff. I have asked him hundreds of things, but “that’s not it” expression of impatience.

    So, the conversation goes like this:

    Nisarga: Googiya.
    Me: Huh?
    Nisarga: Googiya.
    Me – are you hungry, thirsty, sleepy, etc.
    Nisarga’s expression. No go, you silly woman, isn’t it obvious?
    Me – not obvious
    Nisarge – getting frustrated. Me – brainwave “Do you want to go out?”

    And we live happily till the next googiya

  • Nisarga’s dinner out

    Yesterday, we went out for dinner. Uh… not valentine’s day, but a friend’s son’s birthday party. I was a bit apprehensive about the whole thing, considering that it was bound to be noisy and I just hoped that when push came to shove, we wouldn’t end up being miserable ourselves and making everyone else miserable. On the other hand, Nisarga loves people, so he could also have a blast.

    No such thing happened. Excited to be outside as always, the highlight for N was the enormous amount of time we spend waiting at one restaurant before giving up and moving to another and then waiting there. Lots of people, hyper excited kids to watch (his favourite kind of watching), many people coming to talk to him, one on one…. life was bliss. Once inside the restaurant, he rapidly lost interest and after unsuccessfully trying to get us to go out again, resigned into a fussy spell of muttering on my shoulder and drifted off to sleep. He slept so well in the racket that prevailed all around us, that I wondered if this was the same kid who wakes up at the slightest sound at home.

    I guess the high energy kids wore him out. I put him in his pram, and nothing short of an earthquake would have got him up.

    Anyway, the surprise that emerged was that Raka and I were at the same dinner table, joining a group with celebrations totally carefree. I had forgotten why I married this guy 😀

  • The last few months

    I haven’t had time to write the last few months. I got busy, then there was some problem with the blog that I didn’t have time to diagnose…

    Anyway, much has happened in the last few months, and some of it I’ll be writing separate posts about. On his health front, my earlier concerns are coming true. Nisarga still isn’t sitting independently or crawling and he is almost a year and a half old. We are doing physiotherapy and meeting doctors and all that, and the general agreement seems to be that physio is what is going to make all the difference regardless of what the matter is.

    The physio is…. okay, I guess. I find that the Feldenkrais work I do with him at home helps him far more than the physiotherapy, which often gets him ‘stiffer’. He resists a lot, cries often, though I try to stop as soon as he cries or persuade him in other ways. He still hasn’t been able to do anything the girl tries to get him to do. On the other hand, like I helped him with the rolling over and other things, he is W-sitting on his own at home (they aren’t doing that or anything like that in physio).

    So I am really wondering if I should just let it all go and do what I can at home, but I’m scared. If it doesn’t work, I’ll be blamed for ‘playing with his life’ with my beliefs and silly ideas. On the other hand, he seems to learn even better at home if he’s taken a break from the physio and isn’t so stiff. So I currently try and manage both, take a few days off to help him learn at home if something new seems to be coming up….

    They want some tests done. Genetics and metabolism. Strange thing is that before this, they haven’t even asked for so much as a blood test. Surely one would begin investigating with the more obvious and common things? Sigh. I’m learning about the medical world real fast, and the more I see, the more I mistrust everything.

    None of the doctors so far haven been willing to even consider the possibility of a corelation between the vaccine and his strange regression and they insist that there is no way to investigate that – so how do vaccines become legal anyway, if there is no way to investigate if they are doing harm? I’ll write details about that in another post.

    Anyway, enough of this ‘health stuff’. It is depressing, and frankly it doesn’t mean anything to our day. We just go ahead and enjoy each day as it comes.

    Nisarga is getting into his personality. Definite likes and dislikes. This makes the day more interesting.

    And oh, he’s started really, really enjoying going out. So, if he passes the door, happens to look in that direction, hears words associated with going out, sees anyone dressed to go out, and a million other triggers, this boy is ready to go. He rides your shoulder till it will almost dislocate till you head towards outside. As long as you are headed in the right direction, everything is good. Head in the wrong direction (towards home) and big problem. He protests, explains, chatters nineteen to the dozen, gives you little charming looks designed to melt your heart ……. the idea is that he shouldn’t be imprisoned (at home).

    Some of his protests can get so loud that I think in a few years I’ll have cops keeping an eye on me for child abuse or something – why does this woman’s son always refuse to go home? hmmm… 😀

    Loves music – any music.

    Hates to sleep. Wakes up at the slightest noise unless we manage to tire him out really well. He’s like a security guard on night shift. If he catches himself falling asleep, he will jerk awake and do something energetic to chase it away 😀

    What more…? This is an incoherent post, but posting it anyway, since its been a long time. I’ve got photos and other stuff I’ll be uploading soon.