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

Tests done, nothing clearer

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

Eye Opinion: Eyes fine
BERA: normal.
Metabolic screening: amino acids (I think) found in urine, but nothing major.
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

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

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…..

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.
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.
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)
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?

Nisarga

Online Space

Category Archives: health