one day left to live series - 24 months and 25 days

We have been traveling to Houston back and forth for the first couple weeks of November. We had the appointments with the Neurologist, the Spine Doctor, a long 4 hour MRI.
"All is Well"

So the 4 hour MRI on Sripathi's brain and Spine came back with no bad news. Of course his brain is still large and it was obvious that it was due to the enlarged white matter but in addition to that we learnt that the white matter is nearly double its size for this age. Also the doctor mentioned that he noticed polymicrogyria on Sripathi's frontal lobes they are the main reasons for this seizures ans delays. Sadly we can do nothing about it. They will just stay. Other than that we were surprised to know that there are 3 or 4 more children like Sripathi with all the similar diagnosis. Well since they are all around the same age we really don't know what is store for his future. Well I hope all these children have a smooth way all the way! Yeah there will be bumps we know that and we expect them but not bad enough to bog us down.

Well then came the Spine Doctor who said Sripathi's spine is just fine know and that he will check back on him in a year. Although there are several chances that Sripathi could develop scoliosis its still a long way ahead so we were not there is nothing to worry about as of now.

We came back and Sripathi was getting back to his therapy schedule and now my husband returns home on Monday and suggests that we go back to Houston on Thursday and stay there for Veteran's day. Well its not often that he gets a break and I don't want to be a spoil sport so we leave and plan to return on Sunday only that my husband fell ill and we returned only on Monday. And guess what the very next day me and Sripathi were down with cold and fever for the rest of the week.

Sripathi got a little serious this time with cluster of seizures controled by an increased dose of diastat and then wheezing. Well with Dr.B on our side we were able to get his back to normal in 10 days. He was given an antibiotic, a steroid and a medicine through the nebulizer.


BTW in between our trips, one day I took Sripathi for OT and half way through the session the therapist sort of asked me if I find any improvements with Sripathi since we started OT. And I was positive because he has shown a lot of improvement. A baby with a head circumference of 55 cm that is heavy are a rock is fighting all that to learn to hold is head up is THE most incredible thing in the world. Well that's what I think because the therapist was not happy with the progress. Basically she was not happy about Sripathi's visit with her. So as i was waiting for this conversation to end, she was almost direct in saying that we should probably look into a different home health service to provide OT for Sripathi. Well as the story goes that was the last time i saw her.

So we are not back to searching for another OT, I've asked ECI to provide us with an OT again. Hope this time they have a quicker turn around because the coordinator mentioned that they have new OT's joining their team.
Also she told me that they would give me an application for the Respite care. That we I could have a friend or caregiver for Sripathi for 20 Horus a month.
The best part is our friend is a professional OT from India since she is not licensed here in America she is not working as an OT here. Yet I could pay her with the respite time and money and have her provide OT for my son.
Keeping my fingers crossed!!!

Okay its Thanksgiving weekend and so I took the time to call my two most favorite people in Florida, Miss. Peg, Sripathi's first PT and Miss. Susan, Sripathi's first VT. Ah it was so nice to hear their voice and so nice to know they are doing just fine. Here's wishing to "Thank" everyone we've met in this thrilling journey during this Thanksgiving 2011.

Happy Thanksgiving!

one day left to live series - 17 months and 18 days

Finally we've embarked on the Ayurveda treatment for Sripathi. After consultation with physician Dr.M from CNS ayurveda we are proceeding with a six month treatment with Kashyam, tailam for the body and scalp, churnam and pills. Well without hope all this would be a mere drill. So all I'm hoping for is his treatment though very slow should help develop his body tone.

Now that Sripathi has started having infantile spasms we need to talk to the physician if he would want to make any changes to the prescription or not.

As per the neurologist from TCH, the results from the last EEG show no major abnormalities as compared to the previous EEG, there just seem to be more spikes which could be causing his newer type of seizures. Yes we've also started with the nightly zonisamide, hope this will help control his spasms.

one day left to live series - 17 months and 16 days

So here were are in Dallas, Texas.
Basically I'm not impressed about the move, for Texas is big, old and rude.

First I have to give my thanks to Hema ji and family for sharing their home with us for a week. I know that's a really long period to host guests at one's home. Finally we moved into our apartment with the bare necessities on the 5th of April. It's been over 2 weeks now since we shipped our stuff and they are yet to arrive. In the meantime Sripathi had to be taken to Houston for a scheduled appointment with Dr.W at TCH. This time around Mr.A could not make it since it was the first week at work and he cannot afford to take leaves.

I and Sripathi took a 45 minute flight to Houston. This was my first experience of the rudest Texan. Sripathi actually pooped in the flight. And the lady sitting beside me wanted me to get his diaper changed 'immediately' as she could not bear the smell. And the flight was so turbulent that the seat belt sign was on the whole trip. And somehow I managed to go into that small restroom in the front of the plane and laid Sripathi on my lap imagine trying to lay across a 84 cm baby in a small flight restroom. Anyways the terrible diaper change was performed while Sripathi was wailing.

As if that was not enough, the lady beside was so upset that Sripathi a 17 month old baby is not wearing pants or shorts to cover his diaper area. Well I could not answer her and I could not take all this rudeness, so I just sat there crying and hugging a really tired baby who was wailing so hard and finally went to sleep.

The silver lining here was when I was waiting for my stroller, one of the passengers came up to me and Sripathi, caressed him and wished me.

Houston was nothing short for its snobbishness. People I knew were not as welcoming as they used to be. The Doctor gave me further bad news. Well Dr.W is still the best person out there with Sripathi's welfare in mind. Basically Sripathi has been acting strangely in the past 3 weeks. When I explained about his activity similar to a seizure occurring around the 20th minutes since he takes a nap or goes to sleep. Dr.W explained that such episodes were Infantile Spasm.
Usually most drugs do not control infantile spasms well. But he has prescribed one that he feels is comparatively less with regards to side effects. And he made sure we get an EEG performed for Sripathi that very day.

Here was yet another Texan. She was a very nice technician. She had to do her job well. And she really did only that she was so irritable. She felt I was not cooperative is making sure my child is restrained within my arms while all the electrodes are stuck on head. Well I'm not sure how many parents are trained to restrain their children, very very physically. She was trying to stick them well with so many tapes and sometimes the tapes don't easily cut off and she got irritated with that. Well I was glad all this pain was over in less than 3 hours.

It was the most tiring 3 hours I guess. I and Sripathi slept for like 3 hours after we reached our friend's home.

Well then the next day, I thought I have just a few hours to get back home but then I met another friend, who felt she had all the time, grace and blessing in the whole wide world and was trying to give me a piece of her mind. Well I did not say a word just sat there listening to her saying that my son is born to get rid of all his accumulated Karma and that it is my duty and responsibility to take care of him. It seems God knows what to give to whom. Well I don't know what was going on in her mind. But all this left me so bitter. I was just waiting to get to my flight and fly away home.

So finally I was hoping I don't get to meet any more rude Texan. But sadly I had to talk to the agent at the Gate at the airport because I had to get a tag for the baby stroller. Also I wanted to request for a pre-board so I'm able to settle with Sripathi before all the passengers board.
But I was told that families cannot go for pre-boarding. So I said ok. And was waiting for the tag. The agent walks closer to the stroller and asks for the ticket, then she asks for other papers for the ticketing. I gave her my online ticket and also Sripathi's birth certificate.

While she reads his birth certificate she mentions that my son is big for 17 months. Well I had to say something or otherwise it was seem like I'm forging his birth certificate just to get him in as a lap child and not pay for a ticket. So I tell her that he has a medical condition. But believe me in that situation and after all that I've been going through, tears rolled down my eyes to hear someone say something like that about my son. So now the agent felt that she made a mistake my saying something about a sick child. Now she gets back to me with a pre-boarding pass and also a $100.00 voucher to use in my next flight. She then tells me that though he is a big boy, he is precious.

Well my first impressions don't seem to change.

one day left to live series - 15 months and 5 days

Thank you all for those lovely comments on Sripathi's Haircut. He sure feel lot relieved with less hair on his head. And yes he is obviously a perfect photocopy of Aravind.

So we got Sripathi's report form the neurologist stating that his EEG still looks poorly organized (immature) for age but at least it is stable.
On the 27th Miss Susan started employing computer animated vision therapy with Sripathi. He was not totally keen on looking but there were certain times when he did pay a little attention. We have a long way to go and she would continue this every week.
Then on the 28th on January he got his vaccination against chickenpox.
He is doing fine. Just running some rashes, which i think are more seasonal than due to any specific problem.

one day left to live series - 13 months and 14 days

First of all, thank you all for your kind wishes. We can never say 'no more' to 'well wishes'.

This is going to be a long post.

It all started on the 1st of December, Miss.Peg was home for the Wednesday PT session and noticed Sripathi's eyeballs were staggering. I told her that I’ll check about that with the doctor as he was due for the second flu shot on that day. At the clinic the doctor described it as vertical nystagmus. The flu shot was canceled. She said she would contact the neurologist at Texas with his condition. That evening she called to let us know that the neurologist wanted us to contact the neuro ophthalmologist as he did not suspect any neurological activity that could cause nystagmus for Sripathi. Unfortunately our neuro ophthalmologist at TCH did not respond. So our pediatrician suggested that we visit an ophthalmologist here in Orlando. The next day was Sripathi's vision therapy session. So when Miss. Susan came home she also checked his eyes and started noting down certain points that she said she wanted to research further. Her concerns were not just the nystagmus, but as to why Sripathi is not tired of playing his one eyed jack game. He seems to be cultivating a habit of closing one eye most of the time. Maybe he has better view and focus with one eye. If that is the case we need to correct it at the earliest. She asked me to talk to the eye doctor about it.

Our appointment with the eye doctor is only on the 14th of December. So while we were waiting, a lot of other surprises cropped up. No doubt it all began with a seizure at 7:40 am on the 5th of December. It was while Sripathi was trying to take another nap that morning. Later that evening half way through the Sunday Satsang he fell asleep. While I stepped into the kitchen to get the prasadam for neiyedyam Sripathi started another seizure. This time we thought that his congestion was working him up. After that he was in posticale state and did not wake up until morning, sadly with another seizure at 6:17 am. This one was long. We immediately called the neurologist at TCH and left them a message. Then we called our pediatrician as we wanted her to check him for congestion.

So on 6th we went to the pediatrician again. She checked him thoroughly and said his lungs were very clear. All his congestion is working up only in his nose and throat. But since it seems to be bothering him too much she prescribed an antibiotic AMOX TR-K CLV. Also Xopenx via Nebulizer. The same day the nurse from the neurologist 's office called and confirmed to increased Sripathi's Keppra to 5.5 ml twice a day and of course we have to hold on the wean off process on phenobarbital for another week.

I can really tell he felt better with the nebulizer that night and also the following day. But on the 8th he had another seizure while he was taking his afternoon nap and right after the seizure he relieved himself of gas and also pooped. I cleaned and changed him and he went right back to sleep. The pediatrician had mentioned that the antibiotic could cause loose stool and I guessed that must be it.

But that night rather just before dawn on the 9th of December at around 3:20 am, Sripathi started breathing heavily. I could not tell if he was having a seizure as he was not stiff not were his eyes pulled to any direction, he was nodding his head rubbing his nose taking real heavy breaths. I woke up Aravind and we were both trying to calm Sripathi. I picked him up and after a while he seemed fine and went back to sleep. We were confused as to what was happening. Should we call 911? But he is sleeping again and does not seem pale or irritated anymore. So we did not want to disturb him. And he seemed to be fine that rest of the morning. But later that afternoon when he was taking him nap, 12 hours after that last breathing episode he did the same thing again, woke up dazed, nodding his head, taking really heavy breaths. He seems so uncomfortable and when I picked him I noticed he had been drooling so much that there was a big wet spot right where his head was on the mattress. And he kept taking deep breaths even as I was carrying him. I then recorded it so I can show it to the doctor. I then called our friend Dr.Lekshmi at Houston, I was so confused and tensed that I lost my manners to excuse myself for calling her during her working hours. I just said Radhe radhe Lekshmi ji please listen to this and I put the phone near Sripathi. She asked if he was coughing. So that's how loud his breathing was. I told her it was how he was breathing and I told her he was drooling and seemed very uncomfortable. She was worried that he was having an infection in the throat and probably it was swollen and he is finding it difficult to breath. So she asked me to take him to the doctor ASAP.

I called Aravind and told him that he has to come home and we need to take Sripathi back to the doctor. I called the doctor and they asked us to come in at 4:30 pm. Dr.C checked him again; she felt he was doing really well. They checked his SP02, that is the oxygen intake while he was lying, while he was being carried and also while he was sleeping. It was between 95 and even reached 100 while he was sleeping. So the doctor was happy that he was getting enough oxygen. She saw the video and she also checked his throat and said he had no infection and no swelling. So it must be just the congestion.

She asked me to give Sripathi normal Saline via nebulizer. She said probably the Xopenx is opening up his lungs well but his congestion in the throat is not clearing out and that's the reason he is not getting sufficient air. And she also asked me to continue turning on the humidifier. We were doing all that he seemed ok but at times we can notice that he is breathing through his mouth.

Phew as things were getting so and so better on the morning of 11th December I noticed a white discharge when he was peeing. "No I don't usually open his diaper and see how he pees." But that morning I was cleaning his diaper as he had just pooped and just as I was changing his diaper he peed and that’s when I saw the white thing and strange that even Aravind was beside me watching the same thing.

It was a Saturday, usually only the nurse would be available at the clinic but we still wanted him checked. Fortunately Dr.C was in that day. We took him in at 10:30 am of course they put a bag on him to collect his urine samples. The doctor came and checked him. Dr.C said he was good, she could not find anything wrong. And I trust her, though he is been going through a lot in the fast 2 weeks and still Dr.C tells me he is doing fine. I don't worry if she was being careless because she really gives attention to Sripathi and is always very cautious before any vaccination or prescription. So far she was able to catch his problems well before they become critical.

So we wait till 11:50 am and Mr.Sripathi does not want to pee even after drinking 4 ounces of milk and close to 7 ounces of juice. Usually the clinic closes at 12:00 noon. They would have waited but Dr.C had a meeting later that afternoon. So she said the nurse will teach me how to go about the whole urine testing process and that Dr.C would call me at home at around 3:00 pm to get the results.

To before we left I did the cleaning and bagging process so the nurse could make sure I did it right if in case we had to do it again at home. Then she gave me the urine testing strips. It was simple all I have to do it collect the urine dip the strip and start writing down the results that is see the change in color of the various tests.

So at home 30 minutes after we had changed his bag he peed. Oh and this time we did not notice any white stuff. I have to admit I'm bad technically and Aravind is almost color blind. So now you can be sure that our results were wrong. And we did not realize it until the doctor called at 3:00 pm and asked me to redo the test and that she would call me back at 5:30pm

Sripathi woke up at 4:00 pm. I fed him and gave him a warm bath and put a bag at 4:40 pm. Sripathi just would not pee and I was told to clean and rebag him if he does not pee within an hour. It was almost 5:25pm. I did not want to mess it this time. So I cleaned him and bagged him again at 5:30 pm. Finally he peed at 5:40 pm. This time I carefully tested the strips and noted the results at the accurate time. And doctor called at 5:45 pm
She was happy about the results mainly the Leukocytes and the nitrates in the urine, which were both negative.

Oh and yes I did not see any white discharge this time too. So I though it must have been something on the diaper. Anyways the doctor asked me to call her if we find anything unusual. But so far he is pretty fine.

BTW in all this confusion I don't know how but I had poured hot water yeah hot water on my face. I have a few burns on my cheek and forehead. Please don't say "ahh". I'm doing fine and the burns are drying and healing real fast. I thank God that it was my face. I cannot image how difficult it would have been to handle Sripathi had the water fallen on my hands or feet. I have never heard anybody, by mistake pour hot water on their face; it would usually be the hands and feet. It was my karma that I have to suffer burns but look at the grace of God; he made it easier for me by making sure I did not hurt my needed hands and legs. I'm just flabbergasted by his grace.

Tomorrow is Sripathi's appointment with the eye doctor. Keeping my fingers crossed.

one day left to live series - 11 months and 3 days

Thank God for a happy baby at last. After over 3 days of constipation and of course followed by cluster of seizures almost 7 in a day! We informed about his condition to the pediatrician and neurologist.
They discussed with each other and the pediatrician later discussed Sripathi's case with a gastroenterologist. Then they prescribed Lactulose 5 ml twice a day. Then after a day Sripathi finally had a bowel movement. Now he is on 7.5 ml twice a day.
But since his seizure was not a welcome sign the neurologist suggested to hold on the wean off process on the phenobarbital. And on top of it the keppra was increased to 5 ml twice a day.
I'm grateful to the pediatrician who takes so much care every time she examines Sripathi or prescribes medication or administers vaccinations.

one day left to live series - 10 months and 22 days

We are back and Sripathi is doing fine but not his dad. Aravind developed a fever the day we landed in Orlando. He is now on antibiotics and is recovering fast.

On the day we landed in Houston we visited a prayer hall. People were singing, playing the cymbals and drums sort of instruments. It must have been a little too loud for Sripathi because he immediately had a seizure but a short one.

On the 15th he had to fast nearly 4 hours to be sedated and taken for a Spinal tap or lumbar puncture. Later during the day he had to give blood tests. As usual the nurses were fighting hard and finally drew blood for 2 tests and after nearly an hour of struggle they called the doctor to check if the third test was necessary because they just could not find a vein to draw blood. After sometime the doctor returned the call stating that they would not require the third test.

After a long Wednesday he had a break on 16th and met his ophthalmologist on Friday afternoon. She was impressed with his improvements and told us to return after 6 months and mentioned that she might consider glasses for Sripathi if he is still far sighted. And as far as playing one eyed jack she said we need not worry about it but make sure he does not press or pry into his eyes.

Later we went to visit his neurologist who was also impressed with the way Sripathi was trying to roll and lift his head. He said all the tests so far the spinal tap and the 2 blood tests came back negative. He also said that it is happy to know that the tests are turning negative but at the same time we have to understand that we are not finding any answers.
He then explained how to wean him off the phenobarbital in 9 weeks as Keppra alone would be sufficient for now and if necessary he would go up on the Keppra.

Dr.W told us that seizures triggered by some kind of physical discomfort like constipation, congestion or like the other day which was caused by loud noise is not as critical as compared to seizures that are provoked without any reason. And such seizures would not cause much harm, but as much as possible we need to recognize Sripathi's discomforts and avoid such situations of lowering his seizure threshold.

He checked Sripathi physically and when he measured his head circumference he drew the graph and compared it with our last record which was 3 months back and said there is a 3 centimeter increase. He was quiet concerned at Sripathi's large head. He said it has to stop growing at this rate.

Our other concerns were with his motivation to use his hands. Apart from touching his toes and playing one eyed jack he doesn't seem to use them. Dr.W attributed this to his hypotonia and affirmed that this too would improve with time and therapy if not completely cured.
I had found about Anat Baniel method of movement therapy for special needs children like Sripathi. So I mentioned about this therapy to the doctor, he said it should be fine to engage him with this kind of therapy. Dr.W also asked us to return after 6 months if everything goes well. So I'll now try to fix up an appointment with the therapist in Gainesville. Hoping that we can drive Sripathi to the therapist on one of these Friday's.

Overall the feedbacks from both the doctors were good. So much for not having any hopes because I had absolutely nothing in my mind and was not anticipating anything.

Our Story - part IV

Shortly after his first admission at the hospital and starting on his new medication of Phenobarbital 4.5 ml twice a day, Sripathi had another seizure that lasted over 7 minutes and eventually re-hospitalized on the 10th of January.

This time he underwent EEG monitoring for 38 hours. During which time we were asked to press a button that was attached to the monitors if we see him seize. And the second evening while I was feeding him expressed milk I noticed he was shifting his focus to his right, doubtful I called Aravind to check and we hesitantly pressed the button. The next day the doctor called us into the EEG monitoring room to show us the EEG reading and the video and explained to us that Sripathi did have a seizure the previous evening. And that throughout the 38 hours of EEG he seized only once. She told us that we'll have to bring him back to the hospital if his seizures last over 5 minutes. Finally we were discharged on the 13th of January 2010 with an additional prescription of Topomax 25 mg. The neurologist suggested we get his eye checked by an ophthalmologist and gave us her reference.

So we though our nightmares were over. Sripathi had a hard time with the medications but at least he was not seizing any more. On the 23rd of January he suddenly was running temperature and it was 101.7. We were getting ready to give him Tylenol or acetaminophen but prior to that we wanted to confirm with the on call nurse as the fever was really high. And bad news she asked us to take him to the ER rather than we administer any medicine as the fever is very high. So we go into ER and they gave him acetaminophen and also took his urine samples. They were trying to make sure he did not have any seizures. And then after 4 hours we left and by the next day his fever was gone.

Eventually we did take him to the Ophthalmologist on the 11th of February. Not sure if it was all the dilation and extra lights or just his gradual increase in weight that he had 2 seizures since we returned from the eye exam that day. So we called our neurologist who insisted that she sees him right away. She asked us to give him a bolus shot of Phenobarbital 10 ml. And we drove 30 miles. At her office Sripathi seemed very normal. He did not seem like he just had seizure and on top of it he had extra dose of medication. Even Dr.K was surprised. But she prescribed to increase his Topomax to 37.5 mg that's 1 and a half tablet twice a day. And she wished that he does not seize anymore.

Well wishes don't always come true; he was hospitalized the same evening after a 13 minute seizure. This was his third hospitalization for seizures. By now all the nurses and doctors were overly familiar with us. It was the routine sever blood work, this time they got the special nurses who are generally caring for patients who are being air lifted for treatments. This was because they usually are very quick and efficient. Guess it was time for them to show their efficient by drawing several vials of blood from my sons neck. I took not be in that room for long. Sripathi was wailing and I was wailing with him. It was not helping him or the nurses. I had to leave the room. Aravind was with him. After what seemed like hours one of the nurses brought a frail little creature turned red and blue from crying. I nursed him and he was the least interested he just wanted to feel safe and painless for some time and eventually fell asleep.

We were discharged on the 13th of February with 2.5 ml of Phenobarbital, 37.5 mg of Topomax and a new member Keppra .8 ml. That was not all. He was supposed to get more blood work performed outside because they could not draw enough blood the other day. The list from the neurologist marked almost 11 or 13 different tests. We finally ended not doing any of those unnecessary and out dated tests for epilepsy except for 3.

Things were going on fine for a couple of days but on 17th of February he had a breakthrough seizure and it was so different from the rest he had before, it seemed like he will be out of the seizure but again his eyes used to get locked, we got a video of it and Aravind took it to the neurologist. Who on looking at the video felt that he was probably out of the seizure but to fired and seemed like he was still seizing. But again even she was puzzled. She anyways asked us to increase his Keppra to 1.6 ml. And to add to all the uncertainty that we were surviving she gave all the records pertaining to Sripathi and suggested that we take him to an Epilepsy center probably in Miami or Gainesville or any other that our Insurance could cover. She said that she was worried why Sripathi's seizures could not be controlled by three different medications and preferred that a specialist takes a look at him for a second opinion.

Our friends had contacted a specialist at Houston's Texas Children's hospital. Dr.W the epilepsy specialist was ready to take a look at Sripathi immediately and gave us an appointment with a week. In the meantime Sripathi had another seizure on the 21st of February.

On 26th we went to TCH, first Sripathi was scheduled for EEG and later in the day we met Dr.W who spent nearly 2 hours with us. First listening to all that has been happening since Sripathi's first seizure to the last one on the 21st. Then he spent sufficient time explaining to us about Sripathi's seizures. First he said his EEG was totally abnormal and he was surprised at how they missed to read his EEG properly back in Orlando. Then he said that his seizures were worse and critical. He called that cryptogenic localization-related epilepsy with (Tonic versive seizures) independent left and right hemisphere seizures. Other impressions he provided were that Sripathi has a developmental encephalopathy with global delays, prominent hypotonia, macrocephaly which suggests a neurometabolic disoeder.

He told us that Sripathi was on the wrong medications. First he wanted us to wean him off the Topomax as he said that the side effects of it were already showing up on the EEG. But he said that any change in medication needs to be gradual or otherwise it could have adverse effects on his seizures. So one change at a time. Regarding the seizures he explained that Sripathi was first be placed of antiepileptic medications to control his seizures and only if they don't seem to help at all we should go for the next treatment which usual is surgery. Unfortunately Sripathi is not a candidate for surgery for the mere reason that his seizures are originating from both the left and the right sides of his brain. So the next possible treatment would be a Ketogenic diet. Not all patients fair well with this diet which is unique to each patient. Lastly if this does not work out then we can try the Vagus nerve stimulator, which involves a surgery to place a chip in the patient’s body. But for now he sent us home with a plan to wean Sripathi off the Topomax. And for convenience sake make the Keppra 1.5 ml from 1.6 ml. He also suggested that we extend our stay at Houston and get Sripathi checked by a neuro ophthalmologist, get an MRI and a few more blood tests.

Our stay typically planned for 3 days was extended to 30 days. On the 2nd of March Sripathi was given his Polio shots and on the 5rd of March he had his MRI and the results stated that Sripathi's brain had abnormally increased subcortical and periventricular white matter volume with abnormal thickening of the corpus callosum. The following evening he had cluster of seizures and eventually taken into ER. Later discharged with prescription for Diastat.

On the 9th of March Sripathi was scheduled for an eye exam and further blood work for Alexander’s disease, Canavans, the amino acid plasma which all eventually came back negative except for the CMA - chromosomal micro array. From which they found that Sripathi has a PHF8 gene duplication on the X chromosome. So later they had taken my blood samples to test for the same. The gene that has duplicated for Sripathi has never happened to anybody before.
Sripathi had his eyes checked by a neuro ophthalmologist. And as per the specialist Dr.E his eyes are perfect, but not the neurological connectivity with the brain. So he was diagnosed with Cortical visual impairment - CVI and he will require visual therapy.

On the 11th of March Sripathi had his HIB vaccination and the next day he had a 12 minute seizure and we administered Diastat for the first time. We had informed Dr.W's nurse about Sripathi's seizure and that evening we were informed to increase his Keppra to 2.5 ml. Gradually on the 14th of March we had weaned him off Topomax which took us over 2 weeks.

On the 22nd he got his Prevnar vaccine and the following day he had several seizures and was given a diastat. When we informed about his recurring seizures after vaccines Dr.W confirmed that Sripathi still has more room for intake of Keppra and suggested that we increase his Keppra to 3 ml which we did on the 24th of March but he still continued to have a 7 minute seizure that day and we gave him a diastat. Well we had to wait because the Keppra can take time to increase in his blood to help counter the epilepsy.

On the 27th of March we finally left to Orlando. Sripathi seemed fine throughout the flight but sadly seized in the car on our way from the airport. We stopped on the Highway and gave him a diastat. He was fine for a couple of days and again seized on the 29th for like 4 minutes.

The story so far...after that things seemed to settle. But like the calm before the storm Sripathi had several breakthrough seizures from the 9th of April till the 14th. Sometimes 6 seizures in a day. But each seizure would not last more than 5 minutes so we did not have to use diastat most of the time. On the 12th Dr.W increased his Keppra to 3.5 ml. Finally the seizures were controlled after we gave him a bolus 3.5 ml of Keppra.

one day left to live series - 9 months and 6 days

It's not fair. Not a nice way to start the 9th month. Three days of terrible seizures. In fact Dr.C did not give him his Prevnar vaccine last Thursday because he was still on antibiotics. Yet he had cluster of seizures on Friday. We contacted the on call neurologist and the result an increased does of Keppra from 4 ml twice a day to 4.5 and the phenobarbital still at 2.5 ml twice.
Moreover we were asked to administer a bulsar 1.5 ml of keprra on Friday as well as Saturday because the seizures where quite frequent. Anyways on Sunday it seemed to slow down.
Whatever be the reason and explanation for all his seizures, it's not fair.

one day left to live series - 7 months and 20 days

Days of bad timings.

The excited trip to Houston was far more than just excited. We reached Houston at around 1:30 pm CT on the 16th of June and within 2 hours we were in Dr.Lekshmi's clinic for Sripathi's most dreaded vaccination shot, the DTaP. Miss.Ruby, Dr.Lekshmi's nurse gave him the shot and he did not feel a thing, so obviously he did not cry. That's Ms.Ruby's lucky hands, nobody feels the pain of shots. Sripathi did just well that evening and slept well that night. The next morning I gave him is seizure medications as usual and put him down for a nap and I stepped into the shower. Within minutes my I heard him almost scream and I just jumped out of the tub and at the same moment my mom carried and brought Sripathi to the bathroom, I held him and tried to calm him but he went crazy and I noticed he was seizing. So told my mom to call Aravind and he came and carried Sripathi while i tried to dry myself and get the Diastat. It was horrible the way he was screaming, so far he has never made a noise while seizing, this time was totally diferent and his seizure was also getting severe, he was shivering and trembling, probably looked like the tonic clonic seizures i've heard about. I gave him the diastat rectally and unfortunately he pooped. And we were not sure if we can administer another dose. And he didn't stop seizing for well over 10 minutes and he was screaming all the while. And slowly he stopped and fell aleep for over an hour on m lap. My bad: I shouldn't have left his side, should have woken up earlier and had my shower before he woke.




Ok thought that was it for the day, we were all tired and he was overly exhausted from that one seizure. But things were from bad to worst as the day progressed. Later that afternoon when he was sleeping and Aravind was by his side I went to have lunch and as i was half way through i heard the same loud scream and I rushed to find him seizing. So to stop him from shaking and seizing and screaming we gave him another diastat and after a while he stopped and went to sleep, I put him beside me on the bed and we slept for over 2 hours. Then all of a sudden he waked up screaming and seizing. This time around it lasted 4 minutes well 1 minute less than the diastat cut off. So we were hoping, hoping real hard that nothing severe happens during the night. And luckily he had just one 30 second seizure at around 11 and then he slept well.



Today we were getting ready to leave to Texas children's hospital and just minutes before we left he seized for less than 30 seconds. We then reached the hospital in less than 45 minutes and right when we put him on the stroller he seized, again for less than 30 seconds. by the way these were all laughing seizures, yes he kind of giggles when he seizes. Then the EEG lasted for over one and a half hour including all the setting up of electrodes and stuff. During which time he never seized. duh. I though if he did seize during the EEG then neuros could read more about his seizure activity. Anyways 45 minutes after the EEG he did seizure twice and each lasted for probably only 10 seconds. Then we had his bloodwork done for longchain fatty acids and pipecolic acid. oh I forgot to mention, the doctor from the Genetics department mentioned that we can ignore the PHF8 gene duplication for now, because they don't have much information nor research in that area and so they are continuing to do these acid tests probably to check on his inborn metabolic disorders.



After the bloodwork we had a quick lunch as the cafeteria on the 3rd floor right across the laboratry and headed to the 9th floor for the appointment with Dr.W. We were way to early but then again we did not want to drive back and forth. And the doctor was kind enough to see us early. And yes he did seize while we were waiting for the appointment. Phew after all the bad and worst things in succession which took me on a guilt trip, the doctor had something pleasing to say. He said that Sripathi's EEG though still certainly very abnormal because his brain is not working as it should. But the best part is the several series of spikes seen in his earlier EEG 3 months back have sort of disappeared now. Which is like a great thing. Which means there are chances that his brain can develop. We still have a long way to go but atleast we are on the road now. Ok now my question was whether he still needs this dreaded vaccine? And after some thinking Dr.W agreed to hold on the DTaP. So bye bye to the next three doses for now. I do not want to stand and watch Sripathi suffer with all those ridiculous reactions of unstoppable screaming and shivering and seizing. And Dr.W said we could increase Sripathi's Keppra to 5 ml for a week and then go back to 4 just to control these out of the vaccine seizures. Also give him a bolus of 4 ml today.

Then Aravind left to bring the car which was parked 20 minutes away from the Hospital as the garage 12 was full when we arrived. In that time I went to the progressive care unit on the 7th floor of the West tower, hoping to see Hannah and Carrie. Well not much luck, one Sripathi was not allowed into the room where Hannah was staying. next they gave me Hannah's room extension number and I called, but looks like Carrie was not around and nobody answered. So I left a card with a nurse and asked her to leave it in 711.

I've seen enough of unwell children for a day, we returned home gave Sripathi his bolus medicine and later in 2 and half hours time i gave him his regular seizure medication and the bad and carless parent that i'm forgot to start increasing that dose to 5 ml as told by the doctor. Why am I like this. bang me.

I should not be blogging in this frame of mind.

one day left to live series - 6 months and 18 days

It was a long day, though Sripathi didn't have any seizures he was just not willing to sleep nor take naps. I know he is exhausted and so am I, but I don't know how he is able to stay awake for no reason. And most of the time he wants to be carried. He is not a small guy at 6 1/2 months he's already 2 1/2 feet and weighs 22 pounds. Yes he is very big for his age. Its due to a gene duplication that he's having to go through several disorders.


I'm going crazy trying to get him to rest for a while. I feel guilty getting help from my husband after all he comes back tired from work. I feel angry at myself for not being able to care for my baby and knowing that that is all I have to do in a day.


Anyway I'll keep trying harder to figure out a way. There has to be a solution to any situation.
I'll hold on to him closer and tighter as we tread this tunnel, its dark, we are scared but we'll get there somehow.

BTW I called Miss.Peg to reschedule his therapy as I was worried that exercising will provoke another seizure.

Edit: As per the neurologist's suggestion from May 18th Sripathi will have an increased dose of one of his medications

one day left to live series - 6 months and 11 days

The pediatrician visit is not until tomorrow. Actually Sripathi will be getting his vaccination shot. He's been having seizures since he was 2 months old. So the neurologist had initially suggested that we stop vaccinations as that could trigger further seizures. Now that he is on medication we have been advised to restart his vaccination low and slow, like one vaccination per week and to proceed with the next shot only if he was alright.
So i just gave him 1.2 ml of Tylenol after confirming the same with a best friend/best doctor Lekshmi ji. The tylenol is to make sure he does not get a fever, as fever can trigger seizures.


Even after having the tylenol he had a hard time going to sleep. He did take short naps in the morning and afternoon, but i felt that was not enough. Moreover i had to rock him all along.
I'm trying to find some kind of sleep therapy, but nobody i know really knows anything about a sleep therapy.


Anyway today we went to costco to get Sripathi's passport size photographs taken.
BTW he already has his passport, since we are basically from India, we now need to apply for an Indian visa for Sripathi.



"Take nothing for granted in a second it can all be gone"