Response email from Dr. Joshie Aug, 10th

Hello Lizette and Sean,

I am sorry to hear that Aliyah had to be admitted. I can completely feel your anguish. I know that you have been great advocates for Aliyah and knew that something was not right from the get go.

I have now looked at all her notes in the electronic chart.

I have yet to see recent labs that may have been done in child serve.

I am still catching up with all the backlog emails etc but decided to write to you so you know what I am thinking.

Your appointment with me is not till the 19th August and I decided to write so we can get organized on what needs to be done.

This is a LONG e email but you will ne able to review it- AND WE CAN STILL TALK LATER- instead of me talking to you FIRST and then you feeling overwhelmed with extra information

Re diagnosis:

1. Aliyah had hypsarrhythmia initially and then modified hypsarrhythmia in f/u. she has drops/ continued myoclonic seizures. In infancy these are called infantile spasms and later are also called epileptic spasms- a type of myoclonic seizure. Thus the terms are used as a continuum.

2. I had also spoken to you about admitting her and starting from scratch at the last visit- with doing a lumbar puncture etc as some of the initial tests were screening tests done in DesMoines.

3. At the last clinic visit, I sent off blood tests for the Rett syndrome and SCN1A. The Rett syndrome test is negative but the SCN1A is still pending…

4. I was hoping that I could tie in some of the additional genetic testing after I had received these test results back- however as Aliyah got worse, you were already admitted before we could coordinate the tests.

5. Regarding your friend’s suggestions, for the patients with GEFS+, there is a strong family history of fever related seizures and also the initial presentation of the child is fever related seizures.

6. For the “ female version” of the SCN1A I think the friend is referring to a condition for PCDH19. Again patients with this condition present with a lot of fever related seizures- not something that Aliyah has done.

7. However, I am not averse to closing the doors on any possibility- but when the tests are very expensive- with a chance of you having to bear some costs, I wish to start with the best fit and then move from there.

8. If Aliyah has a genetic cause for epilepsy, the chance of a “cure” is small as it is not possible to alter genes. Thus if we do the tests in a step wise fashion although you may wait upto 3 weeks for each test, please do not feel that you are wasting precious time in terms of treatment.

9. Considering the fact that Aliyah can have a genetic cause for her seizures, I have purposefully avoided discussing with you some medications that can worsen such seizure types (Dilantin, Tegretol etc).

I am aware that this (GENETIC PROBLEM) is possible for Alyah and will continue to check her as you also have a little one at home.

10. In upto 70% of patients with infantile spasms a cause can be found. I am more interested in testing her for a cause that is treatable by medication immediately. So I would propose testing her with lumbar puncture first as the tests to be done on the spinal fluid can not be done on blood and if there is a chemical abnormality in her fluid (this is a different issue from the genetic test), we can try to correct it.

I am very open to discuss Aliyha’s case with your friend’s epilepsy doctor- with your permission- so we can brain storm together to get Aliyah better- if you think this is what needs to be done.

Re EEG:

I am going to order an EEG for Aliyah and we can also do the LP during the admission for the EEG. If the EEG shows that the drops are coming from ONE focus, I shall order additional tests ( called PET scan)

Charuta Joshi MBBS, FRCPC

Clinical Associate Professor

Division of Pediatric Neurology

2506 JCP, UIHC

200 Hawkins Drive

Iowa City 52242

Weaning off from ACTH and on the KETOGENIC DIET

Our nutritionist, Karla Mracek wasn't expecting to start Aliyah on the Ketogenic Diet so soon... she had set up an appointment 3 weeks from our day of admittance to the hospital.... She came into our room and asked us to start the Modified Atkinson Diet instead and come back in 3 weeks as schedule.. because she was busy starting the Keto Diet with 3 other patients during our stay....

Of course I was furious............ I know for a fact that when I first spoke with her 3 weeks prior to Aliyah's admittance I told her we were ready to start the Diet since ACTH wasn't looking promising... But she didn't count that as declaring anything because Aliyah was still weaning off of ACTH!!!

I did not want the Modified Atkins Diet.... I did not want me daughter to have 40 seizures a day for the next 3 weeks..... I could not believe she asked me to wait... I could not believe it!!! Yes everyone I did "B####" at her... Believe me I did not mean to!!!! I was just very frustrated!!!! I needed something done for my daughter!!! I asked her what was so hard other than setting up recipes that computer software generated!!!! What is so hard to ask the nurses to collect blood samples? What would be so hard for me to check her ketones in her urine? WHAT IS SOOOOOO HARD ABOUT IT!!!! MY DAUGHTER WAS SEIZING!!!!I ASKED IF THERE WAS ANOTHER NUTRITIONIST THAT CAN START ALIYAH ON THE DIET... she said no, she was the only one qualified/experienced...... At last she did say how she will try to fit us in during our stay there!!!!

Dr. Matthews came in our room and told us we were going to start the diet... also mentioned how Karla cried (I felt awful.. I really did) and how we should give her a break! Well who was going to give my daughter a break???? I will do anything to get things going in order to get Aliyah seizure-free even if I have to step on a couple of toes for my baby.... Aliyah can scream out "Help me"... she can't say "I want these seizures to stop"... I am her voice.....

When Karla came in we thanked her so much!!!! We are fortunate she has a BIG HEART!!!! I just hope she knew I was acting like a mommy / human... Anyone put in my shoes would have done the same .... When you are denied the possibility of your child becoming better and asked to wait a couple of weeks for that possibility..... no parent should have that patience!!!! YOUR CHILD IS IN NEED OF SERIOUS ATTENTION!!!!!

Today I still appreciate Karla and Dr. Joshie!!! :)

The first day- August 1st:

Karla gave us literature to read: The Ketogenic Diet by John M. Freeman and a pamphlet that explained briefly the diet. She also gave us a weighing balance that measures grams to take home and a food itinerary for us to follow for the next 3 days. The book said she would need to fast for 24 hours, but she disagreed with this part of the protocol because she believed it was not needed for her body needed that part for a quicker onset of ketosis, also because Aliyah did not eat for a full day because of her constipation prior to the start of the keto diet. She explained the reason for Aliyah’s admission, in order to monitor her seizures during the diet, make sure all of her medications were carbohydrate-free and sugar-free, and of course to guide us for the first couple of days in person.

“The typical ketogenic diet, called the "long-chain triglyceride diet," provides 3 to 4 grams of fat for every 1 gram of carbohydrate and protein. The dietician recommends a daily diet that contains 75 to 100 calories for every kilogram (2.2 pounds) of body weight and 1-2 grams of protein for every kilogram of body weight. If this sounds complicated, it is! That's why parents need a dietician's help.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

Her first meal was a Keto Egg Nog at 12pm

The meal consisted of :

40 grams of cream

27 grams of whole milk

22 grams of liquid egg

2 grams of Splenda

3 drops of pure vanilla extract

3pm meal was Hot Dog, Cheese, and vegetable

25 grams cooked carrots

25 grams cooked hot dog (Classical beef frank)

10 grams American Cheese

63 grams heavy cream

5pm Keto Egg Nog

”The kinds of foods that provide fat for the ketogenic diet are butter, heavy whipping cream, mayonnaise, and oils (e.g. canola or olive). Because the amount of carbohydrate and protein in the diet have to be restricted, it is very important that the meals be prepared carefully. No other sources of carbohydrates can be eaten. (Even toothpaste might have some sugar in it!). For this reason, the ketogenic diet is supervised by a dietician.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

****Karla gave us a list of Low carb and carb-free products.

We had to change and be aware of ointments, moisturizers, Lip Balms, sunscreen, toothpaste, fluoride supplements, dentist office products, shampoo, hair conditioners, pain relievers, laxatives, baby wipes, antacids, foot powders, insect repellants, deodorants, soaps and hand sanitizers, shaving cream, non-carbonated beverages without sucralose (splenda), electrolyte replacement beverages, sweeteners…. These were some that were mentioned to us to look out for.

Second day- August 2nd:

I asked the neurologist on call Dr, Bossuk to order a helmet for my daughter so that if she does fall when in daycare her head would be protected.

I also asked him for his opinion on my daughter’s case. He believed Aliyah might have a normal life since she is running, walking, climbing, and making verbal noises ma, ba, pa…. But no one knows right now, she is too young to make judgment. This was all good news for us because it gave us hope… He did make it clear it was only going to be determined by the activity of her seizures. We needed to find a way to control her spams….

8am – Keto Egg Nog

12pm- Keto Meal

5pm- Keto Meal

7pm- Keto Egg Nog

Aliyah was extremely tired, Karla explained it was because of the change in energy intake… from glucose to keto.

Shee slept for most of the day. When she was awake she had 9 head drops, sometimes she would have fallen on her face if I was not around to catch her during her head drop. Her ketone levels was low.

Third day- August 3rd: ALIYAH’S BIRTHDAY!

8am – Keto Meal

12pm- Keto Meal

2:30pm- Keto Snack

5pm- Keto Meal

7pm- Keto Snack

For her 2 yr old B-day she couldn’t have a traditional b-day cake …….. This is when I first realized our lifestyle will change.

*** Aliyah was still under high dosage of ACTH so she was ALWAYS HUNGRY!!! At the time we were on the process of weaning ACTH off her system since it didn’t help in controlling or diminishing her seizures… At first there was a little hope because we saw some decrease in her head drops but then they came back strong while taking high dosage of ACTH …. Also we were told ACTH may have been the reason why her blood pressure was so high and why she was so badly constipated.

Aliyah showed no head drops and her ketone level was moderate.

Being discharged --- August 4^th

Karla gave us a website to go to adjust, make up new recipes of meal and snacks. www.Ketocalculator.com

Along with our user name and password so we can access the website. She already set up how many calories Aliyah needed to intake daily (1100 calories) and started her off 3:1 ratio (Aliyah Keto Diet “dosage”)

“A ketogenic diet “ratio” is the ratio of fat to carbohydrate and protein grams combined. A 4:1 ratio is more strict than a 3:1 ratio, and is typically used for most children. A 3:1 ratio is typically used for infants, adolescents, and children who require higher amounts of protein or carbohydrate for some other reason.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

Aliyah showed no head drops and her ketone level was high.

She was still tired due to the transition.

We were asked to commit to the diet for at least 3 months. We promised to be as strict as we can be.

Ketogenic Diet

Our nutritionist, Karla Mracek wasn't expecting to start Aliyah on the Ketogenic Diet so soon... she had set up an appointment 3 weeks from our day of admittance to the hospital.... She came into our room and asked us to start the Modified Atkinson Diet instead and come back in 3 weeks as schedule.. because she was busy starting the Keto Diet with 3 other patients during our stay....

Of course I was furious............ I know for a fact that when I first spoke with her 3 weeks prior to Aliyah's admittance I told her we were ready to start the Diet since ACTH wasn't looking promising... But she didn't count that as declaring anything because Aliyah was still weaning off of ACTH!!!

I did not want the Modified Atkins Diet.... I did not want me daughter to have 40 seizures a day for the next 3 weeks..... I could not believe she asked me to wait... I could not believe it!!! Yes everyone I did "B####" at her... Believe me I did not mean to!!!! I was just very frustrated!!!! I needed something done for my daughter!!! I asked her what was so hard other than setting up recipes that computer software generated!!!! What is so hard to ask the nurses to collect blood samples? What would be so hard for me to check her ketones in her urine? WHAT IS SOOOOOO HARD ABOUT IT!!!! MY DAUGHTER WAS SEIZING!!!!I ASKED IF THERE WAS ANOTHER NUTRITIONIST THAT CAN START ALIYAH ON THE DIET... she said no, she was the only one qualified/experienced...... At last she did say how she will try to fit us in during our stay there!!!!

Dr. Matthews came in our room and told us we were going to start the diet... also mentioned how Karla cried (I felt awful.. I really did) and how we should give her a break! Well who was going to give my daughter a break???? I will do anything to get things going in order to get Aliyah seizure-free even if I have to step on a couple of toes for my baby.... Aliyah can scream out "Help me"... she can't say "I want these seizures to stop"... I am her voice.....

When Karla came in we thanked her so much!!!! We are fortunate she has a BIG HEART!!!! I just hope she knew I was acting like a mommy / human... Anyone put in my shoes would have done the same .... When you are denied the possibility of your child becoming better and asked to wait a couple of weeks for that possibility..... no parent should have that patience!!!! YOUR CHILD IS IN NEED OF SERIOUS ATTENTION!!!!!

Today I still appreciate Karla and Dr. Joshie!!! :)

The first day:

Karla gave us literature to read: The Ketogenic Diet by John M. Freeman and a pamphlet that explained the diet. She also gave us a weighing balance that measures grams. and a Food ittinirary for the next 3 days.

BLOOD PRESSURE AND road to seizure-free game plan

We arrived to the Children's Hospital at 9:35pm....

The nurses recognized us from last year! We were a wreck Dec.2010 and still are today.... I guess it wouldn't be hard at all to point us out from the crowd.

First thing is first they took her vitals, her blood pressure was in the upper 120s... Luckily it dropped... for now.... They did another enema and this time it helped out so much...... She felt much more comfortable.

The on call neurologist, Dr, Matthews was in and wanted to DRASTICALLY CHANGE ALOT OF THINGS!!!!!

Other than Aliyah's constipation I have been calling her neurologist's nurse and letting her know my daughter's seizure activity have increased DRAMATICALLY ... about 40 head drops a day. Sean and I concluded it was due to the weaning off in Topomax to 0 mg/day. (Dr. Joshie did this because she strongly thinks Topomax wasn't doing anything for her, and keeping her delay in speech/communication, Aliyah has been on Topomax for over 9 months in high dosage and the seizures were still occurring)

Dr. Matthews wanted to increase to topomax 130mg, decrease keppra , and introduce clonazepam. I asked her if it would be okay to put herin 50mg of topomax because that is the dose that Sean and I saw most improvement on, she argued we needed to forcefully attack her seizures with high dosage. Dr. Joshie was not in because she was on vacation... So we had to listen to what all the other neurologist on staff were suggesting.....

Sometimes I think they are not human and are insensitive to the parents and children. Reason being I wanted to know her opinion over Aliyah's case... She started to lecture me as if I didn't know what her diagnosis was. And asked me to be realistic that my child may be disabled. She was so negative over my baby girl .... She was verbally picturing my daughter's future for me..... She was beginning to shred my dreams for Aliyah... Dr. Mathews was ripping my hopes of my baby leading a normal life..... After she was done "verbally hurting us" I let her know Aliyah formal neurologist and current neurologist who was at vacation told us Aliyah still has a very good chance to lead a normal life or as close as we can get it. She argued that she needed to be the one to tell us what might be..... I felt she backed away because I let her now two other neurologist who have actually sat down and read and studied Aliyah's case disagreed with her .

The next day Dr. Matthews let us know of our plans during Aliyah's stay at the hospital.

She was to have several types of x-rays

1. to check for enlargement of her heart.

2. her stomach to see if there is a problem in motility

3. hip decay due to the use of ACTH

several blood tests and checking on her levels of ions, and a kidney ultasound.

Her heart, kidneys, and hip looked normal. They determined there was a problem in motility in her tummy, and her potassium level was low.

Dr. Matthews said once they fixed her constipation problems, by enamas and miralax they will begin to put her on the Ketogenic Diet on Monday, August1st. The nurse were letting us know from the beginning we were going to stay in the hospital for 7-8 days. In order to start the diet, they need to monitor her for 3 days in the hospital.

"The ketogenic diet, consisting of high-fat foods and very few carbohydrates, is believed to trigger biochemical changes that eliminate seizure-causing short circuits in the brain’s signaling system. Used as first-line therapy for infantile spasms and in children whose seizures cannot be controlled with drugs, the diet is highly effective but complicated and sometimes difficult to maintain. It can temporarily raise cholesterol, impair growth and, in rare cases, lead to kidney stones, among other side effects.....The evidence is based on a study of 101 patients ages 2 to 26 years treated with the ketogenic diet for a minimum of 16 months and for up to eight years at Hopkins Children’s between 1993 and 2008. At the time of the follow-up, patients were off the diet anywhere between eight months and 14 years. Nearly 80 percent of the patients remained either seizure-free or had their seizures reduced by half. Most patients’ seizures did not worsen even years after stopping the diet." (http://www.hopkinschildrens.org/high-fat-ketogenic-diet-to-control-seizures-is-safe-over-long-term.aspx)

Ambulance

July 25-July 28 2011

On July 25th my daughter started to face constipation problems, miralax didn't help. I took her in to see her ped July 26th. Her nurse did an enema. It did not help much, they instructed us to give her half a capful of miralax. We came in again in the next day... This time it looked like my little girl was in REAL PAIN. They did another enema... It helped some but not enough to relief her.. they told us to give her a capful of miralax.. nothing... it didn't help much....

Frustrated I took her in to see her ped again.... At the office they wanted me to give it more time to let miralax do it's "thing"... but before the nurse was ready to dismiss us I asked if someone could take Aliyah's blood pressure since the nurse at her daycare was on vacation...

She took it once using a blood pressure monitor....... The reading came back too high.... The nurse said maybe because was fuzzy.... The second reading when she was calm was still too high... around the 160s systolic... The nurse told me to wait..... 40 mins later after waiting she took another reading.... It came back in the 150s....... 30 mins later the nurse took her blood pressure manually it was in the high 140s..... She brought in another nurse to compare reading .. she also took a reading in the high 140s..... By this time I knew something was wrong.... They weren't telling me of none of her reading including her very first one, I am guessing so I wouldn't worry...

The doctor stepped in to let me know she sent out for an ambulance to take her to the Iowa City Children's Hospital, 2.5 hrs away. She already called in her neurologist over there and told me they are expecting her. She explained to me that she was worried Aliyah may have a stroke... With readings that high it can be dangerous. An adult with those readings have really bad headaches, she couldn't believe how Aliyah was handling the pain...

Aliyah was very irritable but we all thought it was because of her constipation. Aliyah did very good when the paramedics came in and strapped her up for the long ride... I sat right next to her in the ambulance. Never did I think I would be in an ambulance for my 2 yr old... I just wanted that night mare to end.

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."