Nisarga

Category: health

  • Tests done, nothing clearer

    So we had been asked to do four tests to help understand what is happening to Nisarga. Did all four.

    1. Eye Opinion: Eyes fine
    2. BERA: normal.
    3. Metabolic screening: amino acids (I think) found in urine, but nothing major.
    4. Karyotype tests: No numerical or structural abnormalities.

    Earlier MRI was normal.

    He has some problems with constipation since we have moved to Vile Parle, because he doesn’t move around as much with my parents constantly picking him up. I keep reminding them to put him down, but I suppose, that is grandparents… anyway, the doctor prescribed some ayurvedic medicines and recommended increasing fiber in his diet to help him pass stools more easily.

    Pretty much what I knew, by now… as a mother, I suppose you end up picking these things up automatically… but it was good for my father to hear, that I wasn’t being a neglectful mother by putting Nisarga on the floor or asking them to put him on the floor and let him explore.

    Now what? We met doctor S.M. Vaidya, who is supposed to be one of the good guys in Vile Parle. He thinks we should now schedule an appointment with his pediatric neurologist Dr. Anaita Hegde, as planned. He says while all tests may be normal, even their being normal is a clue to someone looking at the whole picture, and she is an experienced doctor.

    So I suppose that is what comes next.

  • 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.

  • 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.

  • The neurologist and Syndopa

    Today, my birthday. No one at home but Nisarga and I. Big plan for the day? Meeting with Dr. Anaita Hegde, who is supposed to be the top or second from top pediatric neurologist in Mumbai. A few odd thoughts sent through my mind:

    • How can a doctor be ranked top or second from top, etc? Do they have contests or something?
    • Frankly, I didn’t think Nisarga’s symptoms are neurological. Or they might be, but I used to think its related with his lack of head control and increasingly scoliotic tendency because of that (in my mind), but as a parent, I didn’t have the guts to not act on any advice I get – and a child specialist had said that I must meet a very senior pediatric neurologist.
    • Difficult getting appointments, so its really a birthday gift that we were able to meet her and it turned out to be a very good meeting.

    The meeting went very well. We went with all our increasing paperwork and ended up waiting a lot. Nisarga dozed off and I asked them to let a few of the other waiting patients through before us so that he could be well rested when we met the doctor. Since everything was running HOURS behind schedule, they were grateful for my offer. Of course, I was being utterly selfish. If I had to shell out a lot of money consulting a fancy doctor, I wanted Nisarga bright and cheerful, not wilted from waiting, so that she could really interact with him and examine and whatever it is these people are supposed to do.

    While we waited, Dr. Anaita’s assistant (a neurologist herself) came and took a detailed case history. As meetings go, this was probably the most surprising and best of the lot. Dr. Hegde interacted with Nisarga and he was at his charming best. She made quite a few observations related with him scissoing his legs, not being comfortable on his back and other things, and had some conversation and a eureka kind of moment with her assistant.

    She was concerned about his regression. He gets these developments, and he loses them. For example, after the bouts of bua bua ba ba boooa etc, he isn’t babbling much at all, while I was expecting him to speak more post that. There are other things too.

    She has prescribed something called Syndopa, which is supposed to fix some chemical deficiency in his brain. No side effects, but a miracle cure if it works out. She explained that it was a long shot, but some of the symptoms made her think it was worth trying. Just as we were leaving, she took note of his history of slight jaundice immediately after birth, and considered the possibility that there may be some brain damage – even though the MRI was clear.

    I spoke with her about the Feldenkrais work I do with Nisarga. She was very supportive and went to the extent of saying that if it is helping him, to not even ask any more doctors, because he is really the final judge. To not even risk someone asking me to stop! It was a big surprise after the unrelenting skepticism of most doctors so far.

    Brought him home, fed him, gave him his first dose of Syndopa. Perhaps its my imagination, but after his second dose, I think he is more active. Fingers crossed.

  • Our first tooth at 3 months!!!

    I have been busy with a super needy baby for the past couple of days with no time to haunt this blog at all.

    He has been fussy and clingy for the past couple of days, which is fine because I enjoy holding him, but sad because he seems so unhappy. I was wondering constantly about what his problem was. If you remember, I’d written a post the over a month ago, when he wasn’t even two months old thinking he was teething. Everyone assured me I was mistaken and that he was too young. Then, it seemed to ease and I believed I was mistaken too about the symptoms.

    He’s been super drooly since then and tends to have whiny moods, which too everyone assured me was a part of growing up.

    Today, as I looked into his mouth, there it was – a tiny white ridge over a very drooly gum. Its still not out, but its right there. Apparently, it will still take time to come out, and that’s what his discomfort is all about, but I’m glad to know that I did understand his body language correctly.

    I feel so helpless sometimes to understand what my little man is trying to tell me.

  • Using the dropper to give medicine – correct method?

    Infant drops rarely make that extra effort to make make administration easier
    Infant drops rarely make that extra effort to make make administration easier

    This is a new experience in life. Using a dropper to give medicine. I always keep second guessing myself, and my methods of delivery. I guess it doesn’t matter so much if you are giving something like Bonnisan, for example, but if you are giving a medicine where you don’t want an overdose because of side effects, or underdose because you want it to be effective, like my recent experience with Atarax, it becomes important to be very exact about how much you are giving your little baby. With them having such tiny bodies, I guess the scope for getting out of the margin of the dose for their weight is quite narrow.

    Also notice how life has a way to see that the most inexperienced mothers naturally have babies who need to be dosed in small and careful quantities. By the time your child is big enough for it not to matter much whether you give a dropper or half a desert spoon, you already are an expert.

    Here are the ways I tried, and the problems/difficulties I faced with them…..

    1. The obvious – drops from the dropper straight into the mouth. This clearly is the best way to go about doing it, and works wonderfully with stuff that tastes good. Particularly when Nisarga happily opens his mouth when told or when he sees a spoon or dropper coming near. When it comes to medicine that Nisarga doesn’t like, there is no way he will voluntarily open his mouth for more drops. Then it comes down to a struggle to force his mouth open, which if you’ve been reading this blog for any length of time, you know I hate to do. I will, if I must, but I prefer hunting around for better ways. Not to mention that Nisarga loses patience with this method quickly even when he likes the taste.
    2. Using the dropper to put the correct number of drops into a spoon (+1 drop) and then giving him the whole dose in one go. Works best so far, but kind of negates the convenience of the dropper. I add that one drop because when I give Nisarga the medicine, I’ve seen that a small amount remains in the spoon, which looks about as much as one drop.
    3. Seeing how much the desired number of drops fill the dropper by filling it and dropping the medicine back into the bottle, and then simply filling the dropper to the exact level and squirting the lot in at one go. This is time consuming, but works fairly well. And once I know how much it is, I don’t need to repeat the experimentation every time (though I do “recheck” once in a while to make sure that things are indeed as I remember them)
    4. Buying a separate dropper with quantities marked on it and converting number of drops to ml that can be measured directly with the dropper. Now, this is a proper set up and not as simple as it sounds, because it immediately means that I have to clean that dropper regularly, store it correctly, and remove the plastic dropper plugs on some medicines (like Bonnisan and Atarax, for example) to enable me to be quick when it comes to giving them to him. This means, that if I lose those plastic plugs, I can’t go back to dropping straight from the bottle. However, this is the best in ensuring that he gets absolutely the correct dose.

    Dang, maybe I’m over-thinking this.

    What about you? Do you wonder about these things? What do you do to ensure that your baby gets the medicine exactly as prescribed?

  • Atarax drops – things I didn't know

    Okay, the baby had had a bad night two days ago, and the pediatrician prescribed atarax drops – 10 drops morning and night. She asked me to call back in a day.

    I’d given him the drops and he slept most of the day away. I assumed it was from being so utterly exhausted. He hadn’t had another crying spell. When I called the doctor after 24 hours as told, she asked about how he was responding and I told her that, and she asked me to reduce his dose to 8 drops both times and call back in another 24 hours.
    He’s doing fine.
    Then, with my obsession with whatever the baby ingests, I searched online for information about Atarax drops and I found the following:
    • They contain Hydroxyzine Hydrochloride.
    • They are indicated for nervous stress, anxiety and neurovegetative disorders in cardiovascular affections (hy­pertension, arteriosclerosis, arrhythmia, stenocardia, nervous and circulatory asthenia), respiratory af­fections (nervous cough, chronic bronchitis, bronchospasmsl, gastrointestinal disorders (nausea and vo­miting, gastric hypermotility and hypersecretion, gastric and duodenal ulcers, chronic colitis), and in pe­diatrics (tics, enuresis)….
    • Sleepiness is a common side effect!
    • It is possible to alergic to these – I HAD been thinking that Nisarg’s face looks a little swollen, but thought it was because of the crying….
    In short, its a heavy duty medicine, particularly for such a small baby, and while it helps, it would have been good if the doctor could have explained how important it was not to give more than needed (I can imagine myself giving him “a little bit more” if faced with a screaming infant in the middle of the night – not that I do this easily with him, but that it feels remarkably powerless to see him hurt – luckily the situation didn’t arise). I think it also was crucial that we be told that we could expect him to sleep a bit more from the medicine and to watch out for possible allergic reactions.
    It sounded like a regular medicine for babies, the way she gave it. Or maybe it is? I don’t know.
    Anyway, it doesn’t seem to make him drowsy when it counts, and he had a fussy spell for two hours after taking the medicine before he would settle to sleep. Though luckily, it was more a needy state of being rather than outright wails. And then we slept like a pair of logs till morning.

  • Caring for gassy infant – How to treat gas in infant

    Here’s some tips on caring for gassy infants born from my trial by fire:

    1. At the FIRST sign of gas – crying, squirming, passing very little gas after a lot of action… use neopeptine. I’d say, when in doubt, use neopeptine too.
    2. Comfort baby. Cuddle in fetal position. This brings legs closer to stomach and naturally helps pass gas, while making the baby feel secure.
    3. Feed baby. Babies tend to have bowel movements (or attempts) when feeding. The feeding comforts as well as helps them move the gas along.
    4. Put some massage oil (coconut oil should be fine) on your hands and rub the tummy gently. G-e-n-t-l-y. You are not trying to squeeze the gas out. Just soothe and encourage movement.
    5. Move the baby a lot. The squirming that is tiring your baby out is basically the baby moving to help pass gas. You can be a huge help to baby here. Rock, swing, exercise legs in bicycling motions, hold legs up like for a diaper change….. keep changing positions. The baby will not settle till the gas passes, so a position change is only temporary relief. Don’t let the infant get all worked up when it loses its effectiveness, move to a different position.
    6. Of course, when a position soothes baby, hold it for longer, or move to something else quickly.
    7. The end of the baby that gas is expected to exit has to be higher. Gas rises, remember? So, if your baby is moving his head restlessly, rocking back and forth, etc, hold him vertical, pat back, encourage burp. If he is squirming the whole body, drawing up legs and kicking them out, etc. Put horizontal and raise legs, cuddle in cradle hold, lightly rub small circles on lower back, etc.
    These are things to do while your baby is suffering. If you are breastfeeding your infant, it might help to look into fore-milk hind-milk imbalance or lactose overload (NOT lactose intolerance), which I have written about earlier.