ALWAYS ON THE EDGE (beginning DEC 2010)

Aliyah for the past week has gone to the emergency room twice and admitted once. She has the cold virus that made her have serious vomiting and diarrhea (along with little flu though). During this time she had been squinting and twitching her eyes like crazy and in one occasion whipped her head from side to side several times without being able to control it.

We panicked and contacted her specialist, he arranged another 24 hr EEG.

Her EEG showed no epilepsy and still some abnormality activity on her left brain.

I should mention two weeks prior to this 24hr EEG during her weekly doctor's visits she could not move her right arm. Dr. Alsayouf thought it must have been dislocated, x-rays showed it was fine. Three hours later Aliyah was able to move her arm without a problem. Conclusion was that it was a neurological issue. About a week ago Aliyah couldn't move her right leg hours later she was limping, the next day she was able to walk right. Again the doctor said it was a neurological issue, that hopefully in some time with medication and close monitoring it will go away.

Every day I observe my baby girl. Hoping she will turn out to have a normal childhood like her dad's and mine. Before her spams she was full of laughter, always giggling.. always... now she walks around serious runs with curiosity but she is not all back. Dr.Alsayouf spoke about how her IS may come back and for that we must be prepared and always be on guard. I really do wish I was the one being hurt by those then my little angel, I would give anything and everything I have to have remove that awful experience for her.

Everything my little girl does I observe and examine if it was something normal a 17 month old would do. I hope her Infantile Spasms never come back. I pray for other children and their families. For me as the parent it was horrible, living in a nightmare, even today I still think and without wanting to I find myself re-entering into the thoughts & flashbacks of that experience.

Hoping for the Best (late Oct 2010- late Nov 2010)

At first we did not see much improvements in Aliyah's head drops, so Dr. Alsayouf increased the dosage on her prednisolone medication. About 2 days later we notice a decrease in the amount of head drops. We slowly saw the head drops diminish yet still saw her squint her eyes, but eventually that also went away. Aliyah was highly irritable and did not interact much with others, but this was the price she had to face in order to attack her IS.

He then decided to decrease the prednisolone every week until the medication is low enough to ween her completely off along with the other medications except her daily dose of 50 mg topomax.

He was very impressed how responsive Aliyah was with the medication given to her. He let us know how fortunate we are after telling us her EEG showed no signs of infantile spasms. He could not guarantee us a normal childhood for Aliyah but at least we know she is doing better than before.

He let us know about the abnormal activity on her left brain, but kept on telling us to be grateful her EEG shoed no signs of IS.

SECOND & THIRD OPINION and their BIG Differences (Oct 2010)

SECOND OPINION
We searched for a second opinion because Dr. Narawong was hard to get a hold of. I would call her nurse about Aliyah's prescription (low dosage of prednisolone and vitamin B6) and finally received an answer 5 hours later, which wasn't helpful. I kept on calling them to update them about Aliyah. Frankly I felt they did not care as much for my baby. They scheduled to see my baby 2 weeks later. We as a family felt lost and did not know how to help Aliyah, we felt useless as parents. We knew we needed to do more for our baby girl since the medication given to her didn't seem to help much.

We asked her pediatrician to help us get an appt with a neurologist located at Iowa City children's hospital: 3 hrs away from our home. Unfortunately our insurance did not allow this because it was over their 100 mile radius. Our insurance then scheduled an appt with Dr. Alsayouf in the same city, different hospital.

My husband wanted to see the neurologist in Iowa City but we gave Dr. Alsayouf a chance. He gave the same diagnose of IS, the only difference was the change of medications. Unlike Dr. Narawong, he was going to attack Aliyah's IS by using a much higher dose of prednisolone.

Prednisolone: 15MG/5ml solution (4.5 ml three times a day)

Nystatin: 100,000 units/ml suspension (1ml each side of mouth twice a day)

Vitamin B-6 : 100mg (once a day)

Lansoprazole: 15 mg (once a day)

Topiramate: 15MG (4 capsules a day)

THIRD OPINION

We did not know what was best for Aliyah: to approach it from a higher dose or a lower dose. She was experiencing a cold virus at the time. (We did not know this was the reason why Aliyah's seizures worsened, we assumed it was the high amount of prednisolone given to her) We were visiting Sean's aunt (a nurse) near Iowa City so she could advise us what to do or be there for us while Aliyah had her seizures. She told us to take Aliyah to the emergency room at Iowa City Children;s hospital because no longer was Aliyah's neck dropping but also her whole entire back, and her crying sounded as if she was in horrible pain.

She was admitted and a neurologist there asked for chest x-rays, blood work and another 24 hr EEG done on Aliyah. We explained our concern and asked for advise. He understood both arguments from Dr.Narawong and Dr. Alsayouf, we showed him research journals (given by Dr. Alsayouf) demonstrating that the higher dose is the way to go. He leaned more towards giving Aliyah a higher dose, but he differed in how long he would change the dosage. He suggest every 2-3 weeks. Dr. Alsayouf was thinking more like every week depending on her EEG.

We finally decided to stick by ONE specialist: Dr. Alsayouf, not only because his own son experienced IS and no longer has it but because he was the only specialist willing to see our little girl every week with weekly scheduled EEGs, and calls back in minutes after hours and during his office hours his nurse is great at calling me back within the hour.

Sean and I felt better about our baby's current specialist after checking out and comparing others.

Emergency (Oct 2010)

A week prior to her ped.'s appt. we took Aliyah to a bowling alley to meet up with her grandparents. Aliyah did not like the environment. She spent over 20 mins crying and then kept on sticking her finger into her mouth. This eventually led her to throw up. Sean and I panicked and took her to the emergency room. It was there where we decided to share some of Aliyah's odd behavior and explained to the doctor how she would twitch/squint part of her face, then lose motor control of her neck causing her head to drop, how her muscles would tense up, and how she would cry out as if she was in great pain.

He then sent out blood work to be done and urine sample to be collected. That same day he ordered a CAT scan to be done that day and an EEG and MRI to be set up by her pediatrician.

the blood work, urine sample, and CAT scan all turned up to be normal.

Because of insurance problems it was really difficult to set up her EEG and MRI. An EEG was done 4 days later an confirmed my daughter was experiencing seizures. Her pediatrician called to arrange and earlier appt. Once we described Aliyah's actions directly to Dr. Alexander she knew it was a neurological issue. She set up an appt with Dr. Narawong (ped.neurologist specialist) for the following day. Dr. Narawong asked to have Aliyah have another 1 hr EEG done at her hospital. During that appt. Dr. Narawong wanted Aliyah to have a 24 hr EEG done that day and an MRI.

I kept on asking her about seizure treatments but she wanted to make sure she had the right diagnosis for Aliyah. After her 24 hr EEG - Dr.Narawong told us there was no doubt she had infantile spams, and also let us know she had an 70 % chance of having a learning disability.

Her MRI was next, my baby was sedated. The results came back normal. she had no "visual signs" of tumors, tuberculosis, brain damages. Dr.Narawong sent out various types of blood work, all came back normal. There was no known explanation why my baby girl was facing IS.

My husband told me this increased Aliyah's chances of being "normal".

I knew something was wrong (June 2010)

Twice a week in the mornings my little one would wake up confused about her surroundings. At times I felt she was still stuck in some realm of sleep but trying to snap out of it. Then this progressed and became more frequent in becoming every other morning. This strange awaking became into a crying awaking. She would wake up crying looking around her, not paying attention to me. I called the 24 hr call nurse in our area and she assured me it was just night terrors and promised this will soon go away. But then it turned out to be a rude awakening for everyone. Every mornings she would lose motor control of her neck and bob it several times, crying hysterically and pinning her tiny nails onto me. I called the nurse again and once again said it was only night terrors. Weeks passed, Aliyah's cries got worst and her rude awakenings was then interfering with her nap times. I once again called her pediatrician but her nurse would not give me and appointment for night terrors. It was the last straw with me when this "rude awakening" was then appearing while she was awake during her playtime. The nurse finally gave me an appointment almost 2 wks later around mid October 2010. She said "I am frustrated in giving you an appointment for night terrors."