ZEN

I had a beautiful and healthy pregnancy, all the tests were fine and the doctors had nothing negative to say to me. I was glowing with the excitement of having my first baby. As the days came near my excitement and yearning to hold my child grew deeper. And three days before the due date, my contractions started. When I checked into the hospital, they had the fetal heart monitor on me. I will never forget what the nurse told me. She looked at my baby’s heart beat reading and said “if we could frame the perfect heart beat this would be it”.

And then after a very long delivery, my baby was born. We were so happy. I remembered the nurse putting Zen on my chest for 1 second and rushing him to NICU. I asked the Dr Why my baby was not crying and why was he grey?

This was the beginning of receiving the bad new era. They described his condition, as if he had been in a car accident. We begged the Dr to take us to our baby. And when we went into the NICU, I saw my beautiful baby hooked up to all these machines. But he was doing something weird, twisting and starching his body and crying. We were told then that he is having grand mal seizure. And they were trying to give him different types of antiseizure medications to stop the seizures, but so far nothing was working.

Dr told us that the next 48 hrs will determine if he is going to make it. I remembered sitting on the hospital bed and started to scream and cry, and started to pray. Somehow my mind kept on telling me that this is not happening, this is not real.

The next 48 hrs were like hanging by the neck with a rope and slowly loosing the ground under your feet. Like good times, the tough time did pass.

Zen finally responded to one medication. He was heavily sedated. Felt a relief, but not for too long. The Dr walked up to us pulled the curtains and asked us to sit down. And very casually gave us the news. Your son will never be able to walk! He might not be able to talk, hear or see. I know now how death feels because in that moment I felt it all. I don’t know what else the Dr was saying; something inside me had turned the switch to OFF.

By now they had put in a feeding tube through his nose. I used to push my breast milk through the tube every 2 hrs. And now it was time for me to get discharged, but not my baby. I made this very clear to the doctors that I am not leaving this hospital without my son. When they realized that I am determined to stay with Zen no matter what. And I stayed with Zen all ten days.

Every two hrs I would go to the NICU feed Zen first with the syringe and then thanks to this one nurse “Maria” she helped me and taught me to breast feed Zen.

Zen was making progress. Dr decided to discharge Zen. And finally Zen was home.

The first three months, I spend coping with the pain. The day Zen turn three months old he smiled for the first time and I was jumping with joy because this means my baby was developing fine.

3-7 Months

Writing this part of Zen’s life is very difficult, the memories of that time is still painful. And then once again my world came crashing down. While playing with Zen, I noticed him doing something involuntary with his eye lid and neck. I rushed him to his pediatrician, and once again he gave us the bad news. Zen was having the worst type of seizure called infantile spasms, also known as west syndrome. We rushed him to ER at sick kids. They send us home saying he is just experiencing regular seizure, not infantile spasms. As soon as we came home, Zen’s condition got worst. Not only had his spasms got worst he also started to cry non-stop. His eye sockets would turn blood red. I could see his eyes just wondering and losing interest in anything round him. Second trip to ER resulted in addition to another seizure medication but still no diagnose. We were sent home. I knew in my heart something was not right. We stayed up all-night watching Zen because by now Zen had started to drop his neck, jerk his legs and arms in the air, and stopped feeding. Third trip to ER, an EEG revealed that he was having infantile spasms. There is no cure for it however there are only three preventive medications that can control the spasms. Vigabatrin was the first line of defense. He was put on vigabatrin right way. Sick kids refused to admit him because they did not have room for him. He was unable to take the bottle, because every time he had a seizure his neck and throat muscles would relax and he was not able to suck or swallow. Sick kids tried to push us out gave us every useless excuse, we refused to leave till his feeding issue was resolved. Every Dr and nurse in the ER tried feeding Zen. But they were not successful. Finally they decided to admit Zen.

As soon as Zen was admitted a feeding tube was inserted through his nose. Zen responded well to the medication, but after a week his spasms were back. I could not understand why he stopped responding to the medication. I started to track all the changes. Then one morning when the nurse was giving Zen his medication, I asked her when she mixed his meds she said at 8 and it was 10. I knew, then and there this is what went wrong. I confronted her that vigabatrin need to be given within 20 minutes of mixing the med. I panicked and called a social worker, Zen neurologist, and pharmacist and showed them the label on the medication. Until today the Doctors do not believe me but I know that because the nurses were administering the medication incorrectly he stopped responding to that medication.

After 3 months of constantly pushing the Doctors, and numerous VEEGs, they decided to put Zen on ACTH (http://www.nomoreseizures.org/meddb/generic.cfm?id=32). By this time Zen started to have various different types of seizures. Every time he had a new seizure the list of his medication grew. He would have cluster of different types of seizures and even the medications were not able to stop them. I spend many nights sleeping on the rocking chair beside his crib to watch him in case he had a seizure, because there was no other way to monitor him. My husband and I started to do 12 hour shift each looking after Zen. I would do the morning shift and he would stay awake with Zen at night. For next four months in the hospital, one of us was always awake watching and monitoring Zen 24 hours a day. The time in the hospital was very difficult; we saw Zen having various Seizures and Doctors were not able to do anything. After long and painful journey of four months in the hospital, Zen came home with seizures, 17 mediations, a feeding tube in his stomach and diagnose of Intractable Epilepsy We were told by the neurologist that we have to live with his ongoing uncontrolled seizures. In other words, there is nothing much they can do.

7-12 Months

Zen developed all the side effects to ACTH. The worst was hypertension. His blood pressure use to jump up to 130- higher. Numerous trips to ER resulted in increased medications, now Zen was on 21 medications. All day long I was giving him medications. Zen stopped moving all parts of his body. He turned into a rag doll. I couldn’t even hold him. He used to sit and sleep on his bouncy chair. He was fed through the feeding pump sitting on the chair. I stared to thicken his feed with cereal and started to orally feed him a sip at a time. By now Zen stopped sucking on his soother completely.

Due to hypertension, one of the arteries in Zen’s heart started to harden. It was time to make a decision, a decision no parent wants to make. Should we stop ACTH and risk him seizing more? Or continue the course of ACTH and risk his heart?

We stopped ACTH. Seizures for Zen were now on going. Within 5 minutes he used to have 6-9 seizures.

1-2 Years

Zen started to take few sips from his bottle, I started to increase the volume by 5ml and decrease cereal by 5ml. Zen proved all the doctors wrong when he started to take his bottle. (I am the only person who can feed him by the bottle).

After contently demanding doctors to try the last treatment on Zen we finally got accepted by the ketogenic clinic at sick kids.

The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures. It is prescribed by a physician and carefully monitored by a dietitian. It is stricter, with calorie, fluid, and protein measurement and occasional restriction. If the person goes off the diet for even one meal, it may lose its good effect. So it is very important to stick with the diet as prescribed. (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet).

One year into the diet and still Zen was not completely seizure free. We decided to try alternate method. One day we discovered Nuerofeed-back therapy. Dr Larson located in a small town of newPaltz 2 hrs away from NY City. We started to take Zen for some underfeed-back back therapy. In four months of underfeed-back back clinically Zen was seizure free. Sometimes when he gets sick or if there is a change in his diet the seizures can resurface. Dr Larson not only helped Zen, but he helped me as well. I wanted to feel what Zen would experience with this therapy.

(http://stonemountaincenter.com/site/treatments-and-protocols/)

2-Present

I tried many different physiotherapists, but no one was doing anything different, and one day I watched his news segment. For the CME therapy I contacted Ramon. Zen was not stable to travel, so we had to wait to see Ramón in Montreal. And then we met Ramon in Montreal. Zen’s life changed for good. Ramon was an answer to all my prayers. After intense two weeks therapy twice a day Zen has done great deal of achievements.

http://zenmudhar.blogspot.com/

ZEN

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