Understanding words

We have decreased topomax from 100mg a day to 50 mg a day.

Weaned her off the prednisolone and continue giving her the medium dose of ACTH.

She now understands the words jump and spin, she also understands the sign for sit down.

Even though she doesn't speak yet at least she is understanding the meaning of words and sign, letting me know her brain is actively functioning.

She also knows what shoes are for..... I see this as progress and am very happy for her.

We are working on her understanding the words diaper, outside and drink/thirsty.

She has been grunting a whole great deal more. But I see this as her trying to communicate with me.

I will remain having faith in the LORD.. Life is good.. Especially with my daughter in it :)

Quick update... ACTH

My daughter is going to begin taking ACTH (daily injections).

I cannot believe this to be true.. This is what we wanted her to be on since we first discovered she had Infantile Spasms on Oct 2010 but sue to insurance we could not.

The price for ACTH is $150,000 for the entire set of vials needed for the duration of the treatment, luckily her insurance is there to help us through the economic barriers.

We are trying to buy a house but I doubt that will happen.... We need to be sure we are financially stable for her... getting a pre approval is too much of a headache right now....

My daughter comes first in every way.......

Yes a backyard would be great for her childhood...

Yes a small pool for her would be great during this HOT summer.

YES WE DO NEED THE SPACE!

But I just want her healthy...... I want to make sure we do everything in our power to help our little girl.

Today we gave Aliyah her first shot of ACTH on her thigh... It was horrible pinning her down so that I can make sure she doesn't kick or hit me with her hands.... It was difficult for me to see her cry... I don;t know if I could follow through and do this on a daily basis... BUT I HAVE TO!!!!!

PRAYING THIS WILL HELP TREAT MY DAUGHTER'S CONDITION!!!!!!!!!!!!

PLEASE JOIN ME .... PRAY FOR My LITTLE GIRL!!!! She deserves a chance to be Aliyah!!!!

OVERWHELMED

I can't take this......

I wish her spasms went away!

Do any of you feel beaten up when you see other kids pass their mild stones while your child is being left behind, to the point that it is becoming more noticeable? I do.....

Aliyah is turning 2 this August... She will start daycare and I do plan on throwing a big Birthday for her, and on inviting all of her new friends.... I am planning on buying a bounce house, hire face painters, hire people to dress up as ELMO and Cinderella for pictures, and so much more!

The reason being this might be the one birthday she can pass as a normal child... By three it may be too noticeable and I am afraid the children may be mean to her, and the parents I JUST DON'T KNOW. I hope they understand.... I may not have a chance to throw her a sweet 16.... I didn't have one but ever since I knew I was having a little girl .. I secretly planned her sweet 16, graduation party from High School and College, wedding, children's baptism... EVERYTHING......

Am I losing it? I need more faith, I need to pray some MORE!! I need more prayers for my daughter!!! My heart is aching so much, I need to be strong for her and my 2 month old. But this pain is taking the best out of me.... Why? Why my little girl? why are there illnesses out there? why to earth's little angels? I would do anything to trade spots with her....

I love my baby girl and will do anything to protect her......

I feel like I am going crazy, I can't talk to my husband about this, he has closed himself up about her infantile spasms.... All I know it is a relief to be expressing myself through this blog... I need someone to listen to me.

HER INFANTILE SPASMS CAME BACK!

I knew there was something wrong I JUST KNEW THERE WAS!!!!
Something kept on telling me her "chin drops" were not normal, they were not Paroxysmal Tonic Upgaze they looked too similar to her developing seizures of IS.... So I did what any parent would do, ask Aliyah's regular physician to refer Aliyah to see a chils neurologist in Iowa City for a second opinion....... They booked us for November 27,2011, at the time it was the first week of April. I accepted it and called every week, sometimes twice a week to see if there was any cancelations. LUCKILY last week they called back asking Aliyah to come in on June 8th. (5 months and some weeks before her scheduled appt.) We already had plans to go to Iowa City because Aliyah had an appt to be evaluated for Autism, the evaluating team suggested she did not have autism. (what a relief)


But on June 8th, Dr. Joshi told us what Sean and I were in denial of.... Aliyah's infantile spasms came back. She told us ALiyah's neurologist did not diagnose her correctly, that Dr. Alsayouf did not read her EEG and saw her spasms occuring.

At first I just heard siezures.....then Dr. Joshi said spasms... I was confused ......so I flat out asked her if Aliyah has infantile spasms again....... SHE DID.......... I could not believe it...... my heart dropped. I felt like my daughter was lied to, valuable time of healing was taking from us.....


My family is having a hard time taking this in.
We started with the steriods again, increased Keppra and will eventually take away Topomax... Dr. Joshi said Topomax hinders cognitive developmental skills and speech/communication learning. Aliyah was on the max dose no wonder she doesn;t know simple command or who her mom of dad are.



Please pray for my little girl..... we need prayers.......... I want my daughter healed....

ALIYAH VERSUS INFANTILE SPASMS

My baby has been losing motor control, dropping her head along with rolling her eyes back just like she did when she intially had IS. Her specialist said it is nothing, but it looks just like she is having her IS seizures...... She does this quite often.

Her development skills are delayed. She is now 21 months and in her evaluation was at a 9 month old rate. Her psychologist told us she is falls into the moderate mental retardation category.

"Moderate mental retardation - About 10% of the mentally retarded population is considered moderately retarded. Moderately retarded individuals have IQ scores ranging from 35-55. They can carry out work and self-care tasks with moderate supervision. They typically acquire communication skills in childhood and are able to live and function successfully within the community in a supervised environment such as a group home."


As a parent I can't take this in. Before she was born I had plans, goals, ideas for her.... I feel IS is destroying her future. I wish there is something I could do. There is no known cause why IS came into her life. All I know is that I feel useless, I just wish I could make everything better for her. I wish all the happiness in life for her. I keep on wondering will she be able to maintain a life once I am gone, who will be there for her? what other hardships will she find? Will she find love? be able to have kids?

I wish it was me fighting these battles for her... If only I had the option of trading places with her. I would give anything for her to lead a normal life!!! My little girl..... I never saw this coming when I found out I was pregnant. I dreamt of taking her to ballet lessons, teaching her how to play the violin, teaching her spanishm teaching her calculus once she reached 9th grade, I wanted to teach her everything I know and much more...............

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."