What is this now??

Serendipity: Looking for a needle in the haystack and finding the farmer’s daughter!!!


This is how I can explain what happened next. While the doctor was going through the MRI scan, it showed a cyst on Yatish’s tongue. He thought it might be a lymphatic malformation and may have to be removed surgically. He referred us to the ENT department to get it further investigated. We were completely stumped, this was turning out to be murkier than we expected. Now we had no choice and had to go ahead and get this checked.

http://www.childrenshospital.org/az/Site1256/mainpageS1256P0.html

We had to meet Dr. Trevor McGill, Otolaryngologist (phew!!), who is a super specialist in this field. He did an endoscopy, wherein the endoscope, which has a long tube with a lens at one end and a video camera at the other end, is inserted through the mouth to basically figure out what is happening in there. We also had the opportunity to see the video of my son’s oral structure and it was quite unsettling to say the least, but the doctor seemed all excited.

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=mcgill&pict_id=9904140

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Endoscopy?OpenDocument


He felt this was “possibly a foregut duplication cyst or a dermoid and not a lymphatic malformation”. For us the question was is that good or bad? We eventually learnt that the foregut duplication cyst was quite a rare occurrence and it was basically a normal tissue in an abnormal location and in Yatish’s case was quite benign and would not cause any problem to him and there was no surgical intervention needed to remove it. We heaved a sigh of relief. After all, this whole exercise came to nothing, except that we made Boston Children’s Hospital a little richer. Dr. McGill is a very enthusiastic person and he had such a nice way about kids, that I still remember Yatish going through all this without much fuss.

This thing out of our way, were suggested to meet the pulmonologist next to do a barium swallow test. As I had mentioned in my earlier post, Yatish had a problem of reflux and a stridor, which is a continuous wheezing kind of sound, occurring due to his underdeveloped laryngeal cartilages. The barium swallow test would help us to know, if the food was going in the right tract and not getting into his lungs. But everybody felt that he had no visible problems and as it was Christmas time and a holiday season, we could not fix an appointment and we just let it go.

http://draft.blogger.com/goog_794409343

Next we had a physical therapy assessment, but then since the hospital was closed for Christmas, we also took a break and headed to New York.

Hoping against hope!!

When hope is hungry, everything feeds it. ~Mignon McLaughlin



As we continued to speak with Dr. Coulter, he suggested that we also do MR Spectroscopy just to rule out any other cause for his disability. The Magnetic Resonance spectroscopy is done to study the metabolic information about brain tissue. It meant that if there was problem at the biochemical level, it could be treated with drugs. This new development sent waves of excitement. We are all hoping that, MRS would be the indemnity we were seeking. It would mean all the efforts we put in coming to the US and not to mention the huge financial splurge would be justified.


http://spinwarp.ucsd.edu/NeuroWeb/Text/mrs-TXT.htm


All these tests are quite cruel to young children. If the test is the next morning, you cannot feed the baby after midnight, till the tests are complete as they will be administered anaesthesia and if the tummies are full they will throw up. But then you put up with all this thinking that the results would be worth the trouble.

I still clearly remember that day, we were up early in the morning, it had been snowing all night and we rushed to the hospital as we had an early appointment. I was so full of nerves and the MRS room was on the 36th floor. Yatish was sitting snugly in his pram, oblivious to what was happening, except maybe wondering why his mom was not force feeding him and must have been secretly happy about it. As we were going up the lift, somewhere on the 32nd floor an older looking lady got into the lift and the moment she laid her eyes on Yatish, she squealed “Oh my God, Oh my God”. I was taken aback by this sudden outburst and I looked at her, half nervous, half scared not knowing what had happened. Then she said “I have never seen such exquisite eyelashes like your son’s” and then she got out, wishing me all the best.

These are moments in life when it sets you thinking, we are so consumed with the thought of what we don’t have that we forget to appreciate these little things which we have. This is the beauty of creation. Here I have a son who cannot do anything by himself but has been endowed with so many beautiful qualities, what he does not have clearly pales in front of what he has.

The scan itself took about 3 hours and it seemed the longest 3 hours of my life. Now we had to wait for the results. That would take about two days.

When the results came, we were shattered. I am not quite sure whether it was the right thing to feel, but I was thinking since all the biochemical levels were well within acceptable limits, it meant, that the cause of his disability was nothing to do with the metabolism of brain tissue and hence no opportunity to treat and correct it.

Again we hit a dead end but then a new development happened and we were told to take one more MRI scan.......

The Big American dream....

Everyone who goes to American has this dream of making it big, but my dream was to see my son getting alright. If I went to the US, I thought I would be told, this is what is wrong with your son and this is what you need to do and we would do that and Yatish would be fine. We had sent all the medical records before hand and our first appointment was scheduled on the very next day we reached, thanks to the botched up visa process. Severely jetlagged and sleep deprived Yatish and me were in bad shape and there was this anxiety about what awaited us. Added to this was the cold winter. Unlike in India, car seats are mandatory in US and you are expected to have a pram for your kids. Thanks to my sister-in -law’s forethought and awesome planning abilities, she had made sure everything was in place and we settled in well and quick. No amount of praise can do justice to the way she and my brother took care of us. She was studying at the time, pursuing two masters’ degrees simultaneously and working part time. She had already done all the ground work and flawlessly worked out our appointments along with her own schedule. I am ever so grateful to both of them.


We had an early appointment; my brother dropped us at the Hospital and we walked in with lots of hopes. Our very first appointment was with Dr. Coulter, the paediatric neurologist.

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=coulter&pict_id=1746404


He did the mandatory weight and head circumference checks.

http://www.infantchart.com/infantheadage.php

He did a neurological examination checking his hearing, vision, muscle tone and reflexes.

http://www.neurologychannel.com/neuroexam.shtml


Based on all the initial assessments he did, he drew a plan of action and the specialists we would have to meet and all the tests Yatish need to undergo.

Mind you, as an international patient, the fees charged are much higher and the robust American economy at that time made sure it squeezed every rupee out of us. Each appointment cost us an average of 800$, so you can as well imagine.

First we had to go in for the blood and urine tests, based on which the doctor would undertake metabolic studies. The first blood report showed that his lactate levels was very high, which gave us some anxious moments but then we reasoned out that, due to long hours of travel and fatigue, the high lactate acid level build up might be a possibility. So we were told to repeat the tests again.

http://health.yahoo.com/blood-diagnosis/lactic-acid/healthwise--hw7871.html


We had already sent the MRI scans and Dr. Coulter had showed these to Dr. Joseph Volpe, who is a world renowned Paediatric Neurologist and Chairman of Neurology at Boston Children’s Hospital. He said that the scans were indicative of neonatal bilirubin encephalopathy, which means that this disorder was due to the jaundice he had after he was born. In fact, in Dr. Volpe’s book “Neurology of the Newborn”, there is a picture on page 540 of a child with same problem. The MRI in that picture looks like the MRI that Yatish had.

http://www.childrenshospital.org/cfapps/research/data_admin/Site169/mainpageS169P0.html

But Dr .Coulter wanted to make sure that there was no other cause for his disability. So this time he wanted us to undergo MRI Spectroscopy....

My pillars of strength..... Seema and Girish

What a Trip......

This was Yatish and my first international flight, even though we had travelled domestic quite a bit. Since my brother had warned us of the snowy winter which awaited us, we got ourselves some warm clothes and thermals and whatever we thought appropriate. As you know having prams or strollers for children is not very common in India and since Yatish was just 2 and half years and was quite tiny, we had just got him a feeding chair and also there was little choice in prams and strollers which would suit Yatish. So we decided to take the feeding chair along with us. We had a stopover at Frankfurt and the flight was of 21 hours duration.

Somebody suggested that I give Yatish, Phenergan, which is a mild sedative when on flight, so he would sleep during most of the travel. It was a bad idea and it just did not seem to work with Yatish, he was not only awake during most of the flight but created such a ruckus, that people around us promptly changed their seats. I regretted having travelled alone. In the flight I had asked for infant food for Yatish, which means only milk. The flight attendant took the bottle from me after asking me numerous questions about the temperature, consistency etc. and filled it up and got it of course, without sugar in it. Now my son is used to drinking milk with sugar as any typical Indian kid and he just refused to drink it. So I asked the flight attendant if she could put some sugar in the milk and lo, the heavily accented German lady gave me a lesson in oral hygiene and how adding sugar in milk is a bad for teeth and gums. But with a hungry and screaming baby, it is last thing you want to listen to, anyways I listened to her patiently and the moment she left to attend other passengers, I quickly went into the pantry, grabbed a handful of sugar sachets and saved myself from her lecture once for all.....


For those of you who want to take a disabled person on flight this site is useful to check provisions provided by different airlines.

http://specialchildren.about.com/od/inthecommunity/qt/airlineinfo.htm

The stopover at Frankfurt was about three hours. Had enough time to change and freshen up. There was this old Indian couple visiting their son at Chicago, who were a great help. Now I also regretted having not got a pram as I could not put Yatish down. Once we reached Logan International airport, my sister-in-law was there to pick us up. It was quite chilly and windy. We had thought that since I was travelling alone, I should carry this single huge 40 kg capacity bag, which turned out to be a bad decision, since it not only did not survive the long flight and handling, it was pretty unwieldy manoeuvring it in the airport. It is always better to carry two bags. Now we were supposed to meet my brother midway, we took a bus from the airport and finally reached home.

Now looking back, I am myself astonished as to how I could venture with a small kid, with multiple challenges and no help whatsoever, without even thinking about missing the flight or any other such mishaps. Maybe the fierce urge to find answers overshadowed the fear of risk involved in taking such a kid on a long flight. Anyway we both made it without any incidents.