IPad

Aliyah has an Ipad but she doesn't know how to use it yet.

So I am doing research on how to make it as useful as possible for her. 

I have come across this website I would love to share with you.

Setting up your iPad

Before this, I was just purchasing "any" educational app products... now I realize, since I do have a special child, I need special apps that will help her learn in a special way.

APPS FOR CHILDREN WITH SPECIAL NEEDS 

has helped us select great apps for Aliyah! Like "GoGo Games" and "Preschool Motor Skills".

I will continue to gather more websites for you all!

MY KIDS ARE ADDICTS!!! 

Dance to the Music

Aliyah lately has been singing the ABCs using letters A,B,G and E for the alphabet. She seems to remember certain parts of the song, but won't repeat it back during circle time or when requested. Just out of the blue, you would hear segments of songs, it may not be clearly but the tune is there.

This video was taken sometime in May2013 in her special needs classroom, she is doing what she loves doing best, jumping and listening to music... At the end of the video, you can see my son, who came to visit and dance with her.

Watch Aliyah Hop to the Music

ABA THERAPY- PUZZLES

Aliyah started ABA therapy about 2 months ago and she has accomplished so much since then!!!!
We first started 3 piece puzzles and now, 2 months later are doing 9 piece puzzles.

Her sessions are 2 hours long, so she does get tired and tries to play around by putting objects, like her puzzles pieces and laughing about it. She is such a silly girl!

I feel bad saying this, but I underestimated my baby girl. I thought it would have taken her at least 9 more months to get where she is now. Just goes to show me, Aliyah is a strong and bright individual! I should forget all the negativity we have heard from her prognosis.

Watch ABA Puzzle Session

Celebrating Aliyah's 4th Birthday with classmates and teacher :)

Aug 2. 13
We celebrated Aliyah's 4th Birthday at home and in her classroom setting,  I was trying to get some practice blowing candles. Even though she didn't actually blow, she tried and that is enough for me :)

Aliyah can blow bubbles, she just needs time doing so. Meaning, if she can blow bubbles she can definitely blow her candles.

That night, like every other "night before her birthday", I had a meltdown... Birthdays are an emotional roller coaster for me

Watch Aliyah celebrate her 4th Birthday at School

Adaptive and Typical Tricycle / Scooter

Aliyah during her Physical Therapy, July 2013

Adaptive Tricycle: When Aliyah is outside she uses an adaptive tricycle. She has trouble pedaling uphill (the adaptive tricycle facilitates uphill obstacles).

We ordered our adaptive tricycle from Amtryke
This is the model her therapist chose for her: 50-FC-1512 - ProSeries 1512 W/Rear Steering Control

                         
Typical Tricycle: I am not sure if you can see that Aliyah's therapist duck taped her feet onto the pedals and duck taped her waist around the seat, so that Aliyah can focus more on pedaling and less on trying to fit her body back onto the tricycle.
                                                                    Watch Aliyah on Tricycle

Aliyah also practiced riding on a scooter! Hope you enjoy the videos!

Watch Aliyah on Scooter

Video of Aliyah April 2013 during her VEEG

I forgot to upload this video, for everyone... Sorry, But finally its up! I think this will  help you understand my daughter better than my description online.  

At that time she was 44 months old. We were trying to be proactive while admitted. Wanted to work on fine motor with her :) And mostly earlier this year she did American Sign Language. Which is why I kept on asking her "show me please" cue to "show" me her sign. Signing has facilitated her communication. 

Watch the Video

Later this month when I have everything in one laptop I will make another compile videos of her therapy sessions... you will see a drastic difference in Aliyah. :D

Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign

The Epilepsy Foundation started the "Now I know" Campaign.

Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign back in January 2013

They asked "When it comes to epilepsy, what do you know now that you wish you knew sooner?"

This video was made to share some of the things I wish I knew when my baby was initially diagnosed with Infantile Spasms, a rare and severe form of Epilepsy.

I did this video in one night! I messed up on the campaign's name!!!
I know how embarrassing :/ But that was the name my friend informed me of :( Oh well I just wanted to make this video to help in any way.

If you are planning to make one please let me know!!!! So I can share with other IS parents, especially the ones that just found out.

Watch the Video

Aliyah's 4th Birthday.. (will upload videos later this month)

After my good meltdown the night before her Birthday, the next morning we sang to our birthday girl! Prepared for her Minnie birthday party! I cannot let my sadness ruin my beautiful little girls big day, she turned 4! I cannot allow Aliyah to see me cry. There is no reason why she should ever see me cry. She is so tender, serene, sweet, gentle. Her world should be full of happiness, my only duty as a mom is to make sure she is happy.



Aliyah doesn't understand yet to look at the camera for photos, which is why the picture above is gold to us! Sometimes she does say "CHEESE" because she hears everyone else saying it. :) 

8/5/13 3days/2night Video EEG

In April 2013 overnight Video EEG report Aliyah had 3 silent seizures, also known as subclinical seizures there was also talk about partial seizures... Aliyah has had those for a while too.  You cannot see the subclinical seizures, only through an EEG is it possible to report such seizure activity. They told me these type of seizures are not good for a growing child to have, makes learning difficult for the child. This was while we were only on Sabril (Vigabatrin)... We asked our neurologist if we could get her off of Sabril because it was going to be a year of her on Sabril and we were concerned about it damaging her peripheral vision.

Dr. Bergqvist at Children's Hospital of Philadelphia suggested a good replacement medication is Lamictal.

We are now entirely off of Sabril and on full dose of Lamictal. We were only suppose to do an overnight EEG, but right before Aliyah leads were being "glued" on the EEG tech saw what might have been a subtle myoclonic seizure...... Which is why her EEG lasted 3 days and 2 nights. They were trying to catch another myoclonic seizure, but they didn't..... It was mentioned it might have been her body reacting to having no Sabril in her system, regulating ...

But other than that Aliyah's EEG looked promising, this time she had no Subclinical seizures! But her EEG showed constant discharges.... meaning her brain is in a constant "seizure mode", they explained to me this should not hurt Aliyah's learning potential, it just shows her brain is very prone in having another seizure.

Our instructions were to log and report any more seizure activities.

Yes... I still get emotional on Aliyah's Birthday... A reminder I am racing against time for Aliyah.

August 2 , 2013 "So Birthdays are really difficult for me to handle, I am at my most fragile state of mind because I feel as though time is ticking and Aliyah has not made as much of progress as the typical children, and with a new year acquired the gap keeps widening making it even more imposible for Aliyah to catch up.

On her birthdays I realize Aliyah, well the Aliyah I would of have is not coming... Epilepsy took her away from me.

I will never be at her ballet recital. She won't be able to speak Spanish with me or learn Latin. The lost language which is the root of many other languages which would have facilitated her journey to try other languages. Or let me teach her how to play the viola or flute. Or take advance salsa classes.  Let me set up her sweet 16 ..let me say "no boyfriend untill your out of college"..pay for her wedding, let me take care of her children... Epeilepsy took all of this from her and her mother... Even before she was born I planned her life, i know god must have laughed at my plans...

I love my sweet and tender Aliyah but I cannot help it to mourn for the Aliyah I would have had.. Epilepsy did too much damage to her brain...I feel as I lost a child, I know that sounds ridiculous... But I get this way on Birthdays.. Healthy little girl.... Everything went great until her seizures started.. A few a day then hundreds a day.... They were so subtle.... They were not the traditional convulsions... Epilepsy disguised itself so well.. We might of missed Aliyah  window of opportunity.

I know I have issues.. But I could have sworn I thought I was over this I thought I accepted the fact I have a beautiful special needs child.

I guess i am not there yet.. But i wish i can get there because this feeling i have right now is killing me, i hate this.. I feel as I have no one to really talk to about this. I know you ladies are their but i guess its easier writing and letting go of ky thoughts here... Getting this off my chest. I just want this feeling to go away.... I just don't do well with birthdays" 

New to Infantile Spasms?

Many parents ask me what I wished someone told me the day we found out what Aliyah was diagnosed with....

1) NO TWO NEUROLOGISTS are going to give you the exact same treatment. Neurology is a field that is not clearly understood and not much research is done on severe and rare pediatric epilepsy. So go and market for the right neurologist.

Don't like your current one, no worries, on to the next. Some may have terrible bedside manners but only you as the parent will know if the neurologist is doing everything he or she can in order to get rid of these spasms. ( Aliyah has seen over 11 neurologist, and consult with 2 or more at a time)

2) Keep a SEIZURE DIARY at all times! Describe the seizure activity and write down the time and date. And if you can describe what the child was doing before his or her seizures occurred. ( I know it sounds odd but Aliyah's seizure for a small period was stimulated by loud sounds or the "NO" shouts, especially after eating a non-Keto food while on the Ketogenic Diet)

It is also great to see if certain meds work better than the other. (We noticed a dramatic decrease in seizures while on Sabril, when comparing to Depakote or Banzel) Also note when your child is accomplishing any form of mile stone even if it can be describe to typical parents as inch-stones ( While Aliyah was taken off of Topomax we notice she was babbling up a storm, and when on Lamictal she started saying words, building up her vocabulary)

3) THERAPIES.... Your county comes out to your place and provides all of the services needed for ages birth -3 years old... After age 3 the school district takes over. In Iowa they were known as AEA, Maryland: Infants and Toddlers Program, and in New Jersey: Early intervention. The name may differentiate from state to state. (Income is NOT a factor for qualifying) If you are having trouble finding the agency call your pediatrician he or she should have the number.


Get as much therapies as possible. Aliyah is under Tricare Reserve Seleect (military insurance for Guard) with that she was entitled to Speech 1hr sessions 4 times a week, Occupational Therapy 1hr sessions 4 times a week, Physical Therapy 1 hr sessions 3 times a week, and ABA therapy  2 hr sessions 3 times a week. Plus she has an IEP (Special Needs Curriculum Write Up) she has extra Speech and Occupational therapy services there too and goes to preschool for 5 hours,5 times a week.

4) PLEASE CONTACT YOUR LOCAL EARLY INTERVENTION AGENCY. It is a federal program, income does not matter. Our IS children are indeed eligible. Once you are in the Early Intervention system they will give your child the proper evaluation. That evaluation will determine if he or she gets free home therapies. Use them for local resources, too!!!! 

In Iowa Early intervention was known as Early Access, in Maryland: Infants and Toddlers Program, and in NJ:Early Intervention. The name of the program varies from state, your pediatrician should help you locate the number if you have difficulty finding it online.

Early Intervention is for children ages Birth-3yrs old. After three the child is placed in the Special Education Public School District.  

5) SUPPORT GROUPS.... you will need them! if your town doesn't have one start one! Since Infantile Spasms is rare I expand and speak to other parents that have children with disabilities, we all do go through similar loads of heartache. And since I cannot speak to the other IS parents in person, I tend to go to online groups, too.

The Infantile Spasms Community Discussion Group
https://www.facebook.com/groups/infantilespasmscommunity/

Infantile Spasms Support Group
https://www.facebook.com/groups/ISsupportgroup/

Infantile Spasms

https://www.facebook.com/groups/63670816527/

IS Family Inch-Stones

https://www.facebook.com/groups/126400974159934/


6) Contact "THE ARC" It is a non-profit organization for people with intellectual and developmental disabilities. They have been there for me!!! Amazing group of people. When we lived in Iowa they paired me up with a mentor, she was a professor whose son is diagnosed with Lennox Gastaut Syndrome (many of IS children transition onto that diagnosis), she gave me great tips! The Arc also helps with payments for Respite Services and they have funds available for our children's needs. Iowa helped with $1500 every 6 months and in Maryland it's $3000 every fiscal year.

They also have essential workshops. Now that Aliyah is in the public school system these workshop helps me better understand special education and IEP services.

7) MRIs can be done yearly. After  Aliyah;'s third MRI, finally it was taken as a 3T, rather than a 2T, much more information was given to her neurologist.

8) Arrange a PED. GENETICS appointment. The question why may just be in our children's DNA.

9) Need an ADVOCATE? Having problems with your school or daycare? need reinforcement? Call your local Epilepsy Foundation Chapter. In Iowa I called them and a representative came out to Aliyah daycare center to train them what to do if they were to see a seizure and teach them what to look for since seizures come in different disguises.

10) My best way of coping with the diagnosis is by FUNDRAISING for C.U.R.E. (Citizens United for Research in Epilepsy). More research needs to be done for Epilepsy. Also every year we attend the National walk for Epilepsy all funds go to the Epilepsy Foundation. The Epilepsy foundation is another amazing non-profit organization that need help in fundraising too, they reach out to our communities.

Aliyah with her Grandparents attending the National Walk for Epilepsy in Washington, DC

          

11) MEDICAL WAIVERS.... In Iowa Aliyah was eligle for the ID waiver (Intellectual Disability waiver) income is not an issue and no real waiting list. Here in Maryland most waivers are indeed income based and the waiting list is over 8 years. :/ In Iowa the waiver allowed Aliyah to have a private nurse 40 hours a week and Respite services.

12) Still looking for a MENTOR? you can contact Parent to Parent USA and they will find you a mentor that best fits your needs and child's diagnosis. http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx

Accepting Life as it will be...

Sorry I have not been blogging, I guess It's because I have been having a very difficult time adjusting and accepting Aliyah's disability. a disability that I am certain partially stole my daughter from me.
I feel as though I am in a better place,.... Because I am doing everything to get my daughter seen by any and every specialist in order to better understand what the hell is going on.

I am driven on the belief of EARLY INTERVENTION will better the outcome of Aliyah's quality of life.

Currently She goes to PT for 1hr three times a week, OT for 1 hour three times a week and Speech for 50 mins three times a week. I am trying to establish ABA therapy going for her and also trying to fit music therapy to her schedule.

she attends special education, during the school year its 5 hours 5times a week, and goes to summer school 3hours 5 times a week. At school she receives additional speech(1hr/wk) and Occupational therapy(45mins/wk).  She has a augmentative device that helps her communicate.

Aliyah does AMAZING WITH SIGN LANGUAGE, btw.


On Facebook I have been feeling better telling my family and friends more about the current status on Aliyah and where I am with it. But it is a different story telling those same people in person, I get to emotional and cannot finish sentences.

6/14/13 published on Facebook " Soooooo today we went to Kennedy Kreiger Institute to get Aliyah's development evaluated. She is turning 4 in August. FOUR. yet she "scored" around 24months..... and I am okay with that. No, I am NOT embracing it, but okay with it, because she is MY ALIYAH. she smiles... she cuddles... she laughs and giggles.... this little girl is a WARRIOR.... Epilepsy still "visits" her every night, but she has not lost her personality of being a delight. She does have her grumpy days like any toddler.... For example she doesn't want to leave the beach so she kicks and cries and nothing I say will make her understand that its time to go, I do get these eyes looking at me as if I must be a horrible parent because my grown child hits me and cries hysterically, but what the hell do they know right???.... right.... I live in my own little world, and I am learning to be okay with it. Don't get me wrong but I do love the support of family and friends, but unless you lived in "my world" or walked in similar shoes, you will never understand this mom's pain..... Today is a good day because Aliyah laughs and smiles and her little brother is growing up to be VERY LOVING AND PROTECTIVE of his sister who he keeps calling his baby. He loves her and she loves him. As long as my little ones are smiling life is still good and okay:) its amazing when Aliyah excels all expectations and Bruce pushing the child that pushed Aliyah on the playground, lol he is her angel in so many ways."

Publishing that was a HUGE step for me. I am not always open to telling others where Aliyah is cognitively because I was afraid they would treat her differently.

Now for my marriage, its rocky.... Having a child with special needs keeps the relationship tense and unstable, though we do have great days when we both witness Aliyah do the unexpected, overcoming obstacles ... I know the whole saying how "only you control your own emotions" but my emotions to me depend on the type of day Aliyah is having.

My anger fuels me up the most. My anger on "why" did it have to be MY ALIYAH the one to have a severe form of Epilepsy really gets to me. So when nurses do not want to give me an appointment, she can thank my anger when I report her. Or her therapist running late, she can also thank my anger on firing her. And when the pharmacist messes up on Aliyah's medication, they can thank my anger on calling their head quarters to hear my complaint.

If I didn't have my anger I feel as though I couldn't do much. Depression doesn't get you out of bed. Its the anger that makes me feel that " Epilepsy will not win any battles, it can't..."

I do have happy days, they are just not enough to get me pumped up. with time I know this will change...Everything will be okay because my Aliyah be absolutely lead a pleasant and happy life.

I am trying to upload videos of her progress just having difficulty uploading it to this website. One thing that has kept me going is volunteering on anything that deals with children with special needs. My daughter is beautiful and will always have an innocent soul. I keep on telling myself everything will be okay and try to think of today, not tomorrow because I can only take it a day at a time.  

Planning our COMPLETE MOVE TO THE EAST COAST!!

AH! Sooo we are almost done with our move to the east coast so that Aliyah can receive better lifetime care. There is so much to do, I do not know where to begin! I already found where she will be going for occupational therapy, physical therapy and speech, also lined up her pediatric, GI, Nephrology, neurology, and eye doctor,  all that is left finding is her dentist. Why do I feel like I am missing something? ARGGG! I know I am the move is approaching and I am nervous, we have gotten so use to Iowa I think I may get home sick, funny I never thought to call Iowa home when I was raised in Jersey.

Our adventure continues! and I am so nervous! I still want to start the Infantile Spasms Foundation but with this move how am I going to get this rolling?

Aliyah and her little brother, Bruce in a "ehhhh" mood .. :)

Update after a year

I am still an emotional wreck.

Aliyah is more beautiful than ever.
She hugs me. Cuddles with me ALOT.

I cannot believe that epilepsy is still ruining her life. Taking her childhood away.

Sometimes I picture her talking to me like a regular 3 year old.
telling me about her days.
Telling me how much she loves me.

But man ahhhh am I ever going to get that from her.
I do not want her to be "special" I want her to be normal. I know I am asking too much right now but I can't help but to ask.

I always wonder what is she thinking. how much does she understand.

I still envy other parents and their "normal child" especially when they have a daughter. I will overcome this someday but today I am angry, less angry then yesterday.

I love watching Dance moms and toddlers and tiaras and pretend Aliyah is one of them. I know how pathetic but its my dream my little girl would be like those little girls someday, but little by little I am learning how to let go of that dream and keep my head held high to see her life will most likely never be that way.

I hate what my daughter is going through.WHY!?!
I remember people talking about selling their soul to the devil (isnt that what some people do when they feel they have no one to go to?) I think I would in a heartbeat, in return to have Aliyah's normal perfect life .. a seizure-free life.... I have always pictured her to have. But some how I have enough faith to not fall into that mental note and pray Aliyah's life will get better.

I forgot to post about HALLOWEEN!!!! OCT 31.2011

ALIYAH WAS A WITCH FOR HALLOWEEN!

YES, MY BABY GIRL IS GROWING UP!!!

YES, MY BABY GIRL IS GROWING UP!!!

SHE IS SO DARN CUTE!!!

Yes - It sucks being on the Keto Diet on Halloween :(

Oct 2011 - EXTRA HELP!!! Brian Lounsberry, Stefanie Heaser, Carrie Demmon

In October we hired extra-help to help us teach our little one, Aliyah. (Brian started in Aug 2011) It hurts me when I try to teach her how to play with her toys because she would not understand how to. I just want to play with her and not worry about her differences and compare her with other children her age. Which is why we wanted extra help since sometimes I found myself crying because my little one at age 2 wouldn't scribble on paper for me or knew how dolls were played .... back in Nov.2011

We have interviewed aggressively and found great people to be part of Aliyah's life.

Carrie

"I met Aliyah almost a month ago. When I first met her, she cried and was distant. She was close to her mom. When I worked with her for the first time, I took her to the playground. Lizette walked with us to the playground. Once Lizette left, Aliyah got upset. She resisted me and wasn’t interested in the playground. She cried and tried to leave the playground. I was resilient, and I didn’t give up. I’ve continued working with Aliyah and each time the experience gets better. There are still moments when she cries or wants to play with her mom, Aliyah knows who I am and enjoys playing with me. She has come to me with her arms raised and smiles and laughs. We have had wonderful moments at the playground, and I’ve even seen growth in her understanding. She is beginning to learn to sit down at the top of a slide. I love to watch her explore when she sees a dog, cat, or new toy. I’ve heard Aliyah use the sounds p, b, and she has even expressed the sound ‘t’. She also likes to click her tongue. I love singing with Aliyah, and I am enjoying being a part of her life. It is challenging to work with her which makes me appreciate the work Lizette and Sean do each and every day." 10/23/11

Brian

"When we started (mid Aug) she wanted to communicate but couldn't find a way, also wanted to play with peers an could't and making sounds was about 3-5 sounds. First thing I did was see her in her home setting, she loves books and toys with sounds/music so I started a step ahead of myself. ABA No tear learning which is immitation to learn on a baseline then after she pass trialed in then mastered at a 90% rate on 3 separate sessions. But 1st we had learn immitation play.

So I spent a week on just simple stuff: touch nose, tummy, eye, tounge, ear, hair. had to oversome putting fingers in her mounth. So we started on her favorite toy dolls and then after a week she had dropped 90% of fingers in her mouth. Then started to do immitation play like on top, under, in, out on a toy then mimic the sounds out of stuff mouth, takes about 3 separate sessions to say the sound.

Sounds she can now say:

ah, bah, cah, duh, fff, ga, la, ll, ma, mm, pa, sss, wah, and the top of mouth "click sound"

Goals we are working on: basic 2 yr old

2 word communication- its verbal prompted better when we started with han over hand everything. ex. I'd stop music- che say more music, signed after learning the sign n making it to the best of her abilities.Full moition with gross motor and fine motor. ex. right hand zips up, left hand zips down. don't know why it happens.

Also working on teeth sound like ta, and some tough ones like zah and close ones to ga, like ja, ya, and also trying to make an O sound with an O movement. We started thursday 9/15 signing mom by placing her thumb to touch her chin and it took 5 sessions to touch her chin with her thumb st 50% hand over hand. But she smiles when is a sign mom because she wants to learn it. Also, she wants to play with her baby brother, been working on nice touch with 1 or 2 fingers and no pinching with anyone else too. Also learned to wave properly and blow a kiss with ma sound. " 9/21/11

Stefanie

I started working with Aliyah in the Fall of 2011 not knowing exactly what I was getting in to. This is what I observed: a little girl who did not know how to play with dolls, could not put her jacket, hat, socks and shoes on, did not verbalize, could not identify a puppy, a cat, or a fish, did not use sign language, and did not know how to jump into a swimming pool. At this point she was still eating solid food, but her seizure disorder was getting worse.

Today I observe the exact opposite. Aliyah is the most resilient little two and a half year old I have ever had the pleasure to work with. This is what I observe now, just 4 months after I started working with her; Aliyah can say "mama" and "papa." Not only can she identify cat, dog, and fish, she can actually say "puppy." Her verbalizations have increased from just a few a day to constantly talking and making sounds. When we are ready to leave home, she sticks out her feet to put her shoes on and she puts her own coat, hat, and mittens on. Aliyah went from hitting her baby doll to feeding, burping, and rocking it. When Aliyah wants more of something or simply wants to tell you that she's happy, she uses sign language to communicate. She even jumps into the pool! She's two and a half! It's incredible! It's heartbreaking to see her condition get worse, but it's absolutely amazing to see her achieve so many things people thought she would never be able to. The possibilities are endless for this little girl and I do not doubt that she will achieve them all.

Nov 9.2011 APPOINTMENT AT JOHNS HOPKINS!!!!

AFTER CALLING WEEK AFTER WEEK, WELL MORE LIKE EVERY DAY, WE FINALLY HAD AN APPOINTMENT ON Nov. 9th.2011. FINALLY... FINALLY.... THE SQUEAKY WHEEL ACTUALLY WORKS!!!! NO KIDDING!!!!

I knew we were moving to the east coast and was in fear of traveling to a new setting where we would need to start from scratch especially now that I was starting to trust Dr.Joshi with Aliyah.

We FAXED EVERYTHING... LITERALLY EVERYTHING.. FROM ALL FOUR HOSPITAL THAT Aliyah HAS BEEN HOSPITALIZED IN AND HER PEDIATRIC CLINIC.

WE GAVE THEM EVERYTHING.... ALL of her video-EEGs, MRI, blood work results, IQ testing, reports from her occupational - physical - speech therapists. Anything that had to do with my baby I gave it to them.

The social worker from Johns Hopkins gave us flight vouchers and a free place to stay called "Believe in Tomorrow's Children's House" (Very similar to the Ronald McDonald House).

I cannot tell you the high hopes I had before coming to Maryland. Hoping Dr.Kossoff would tell us Aliyah's condition is "treatable" meaning manageable......... well more like fixable. Unfortunately that was not the case- not at all.

Basically he looked over Aliyah's history and told us we are doing everything we should be doing and is happy with the work Dr.Joshi is doing. And told us we were very fortunate with the work Dr.Alsayouth did on my baby when she was first diagnosed. He said we were fortunate we fought aggressively with the medications from the beginning.

He told us to go up on the Keto-diet to the 4 to 1 ratio. He told us NOT to do Nitrazapam and mentioned how most likely Vigabratin will not do much for her because of her age being 2. He told us we could go back to topomax or try depakote. That was basically our conversation. :( Nothing more we could do.

He let us know he has patients that are seizure free but have not progressed cognitively. I told him I want to move to Maryland and not to New Jersey because of his expertise. But he let me know there isn't much for them to do for Aliyah... again and again. I do believe Aliyah will be in great hands with Dr.Kossoff! As Aliyah was in GREAT CARE under Dr.Joshi supervision and guidance.

I didn't care we were still going to move. Just in case Aliyah's condition would be a life long one. I needed Aliyah to be seen by a highly recognized institution. Everyone is always telling me you can't go wrong with John's Hopkins. :)

I AM GOING TO DO THIS MOVE FOR MY DAUGHTER!!!!! WHO KNOWS WHAT HER INFANTILE SPASMS MAY LEAD TO!!!!!

I am not going to deny. I was devastated after the appointment . I felt that some well most of my HOPE was taken from me. But I was going to keep on being optimistic. Hopefully Aliyah's IS miraculously goes away... I don't know at that point I was leading more towards God and less towards her neurologists.

I really wanted this appt. so it could have been an easier transition from Dr.Joshi to Dr.Kossoff. Now we know who he is and he knows who we are once we established residency in Maryland.

Below is Aliyah's future neurologist Dr.Eric Kossoff once we move to Marlyland.

NOV. 4, 2011 AS A MOM I FEEL USELESS....

I am so close to finishing my degree in Microbiology, and plan on moving from Iowa to Maryland so that Aliyah can be near Johns Hopkins and be closer to my family because we are in need of emotional support through this rough time. My mother- I feel is the one person who feels my pain, though my husband shows it in different ways. I need someone to help me get through this. My daughter's life has changed.

Some one once told me to lower my expectations for Aliyah, at the time I was furious and within myself was like: HOW DARE SHE!!!! WHO DO YOU THINK YOU ARE TO TALK TO ME LIKE THAT? I AM THE MOTHER OF THIS BEAUTIFUL CHILD. I WILL NEVER GIVE UP HOPE. I HAVE HOPE ALIYAH CAN OVERCOME THIS AND BEAT THIS. I BELIEVE IN THE LORD'S POWER. HE MAY "CURE" ALIYAH AND REMOVE THIS ENTIRE NIGHTMARE FROM OUR FAMILY.

From then on I knew I needed to move to the east coast to be closer to my mother so that she can help me keep my sanity!!! GOD, PLEASE HELP ME! I know I have been in the dark and have deeply envied other parents and their joyful times. Why Aliyah? Why? Why any child? Why? I hate it when I find myself asking that stupid question to which I will never find out.

I feel useless, a wreck, weak, beaten down, and shaken down. But Aliyah cries when I cry. She loves to cuddle with me. My little one is worth all of this pain and so much more. I just wish I could take her spot. I would do anything... anything for her. All I want is for her to get better! Damn I hate this WHY WHY WHY!!!

Ever since I was a child and played with my dolls I planned out my "future" daughter's life(now Aliyah). And now people are making me resign and rethink a different plan for Aliyah.... not this year... and possibly not next year.... When will we heal as a family? When will this pain ever end...?

I had no idea how much a mother could possibly love her children..... I am blessed to be the mother of my children~ Aliyah and Bruce

Aliyah with her feeding tube

Poor baby, she had no idea why she had a tube hanging out of her belly, she knew if she pulled it pain would struck.

At the hospital they taught us how to feed her, "gravity feeding", meaning no apparatus that calculated/monitored her feedings. The hospital helped us locate an agency that supplied the syringes and tubes.

Half of her meals were formula and half were her oral keto meals. The nurse told us we could tape her tube to her belly but it left marks and messed with Aliyah;s delicate skin, so now I attach it to her diaper and most of the time she wears onsies so her tube won't be in the air.

Her little brother, Bruce who at the time in november was 7 months, found her tube interesting and always wanted to pull on it so I would make sure he never had a hold of it.

I have hired someone to give her swimming lessons. We had to wait 2weeks after surgery until Aliyah's tube can be submerged in water. She loves the pool!!! Eventhough it hurts me to see her have the feeding tube at least I can say I am doing everything in my power to see Aliyah is getting the best treatment out there!

Dr. Joshi wanted us to stay in the 3.5 ratio until further notice during the time of her tube placement.

FEEDING-TUBE....NOV.2.2011

Yes, we were going back and forth whether or not to go with the feeding tube. Aliyah was eating again. She was no longer throwing up and enjoying what she was taking in. So we decided to cancel the surgery appointment for the G-Tube placement... But soon enough after 1 week of eating her meals she began to throw up. The kept on telling us it was her body rejecting it.

Dr. Joshi called and told us it was either putting in the G-tube or no diet and going with a new treatment of Vigabratin. We believed in the diet so much we agreed to go with the feeding tube just so Aliyah could stay with the diet.

On Nov.2.11 Aliyah was under anesthesia to have her g-tube placed. When she woke up she was very irritable. Nothing calmed her down, she kept on wanting to hit her head.

When we were discharged half of her meals were solids and half of her meals was the Keto Cal formula. We no longer had to fight her to drink her cream or medicine. All liquids went through her tube.

HOSPITALIZED AGAIN! Sept 26-29th ... SHE CAN'T STOP VOMITING...

We could not stop her from vomiting now anything she had in came out immediately. EVEN WATER!!! I called her local ped. and they told me to call her neurologist, and they told us to drive to Iowa CIty ASAP!

Blood work showed she was too "ketotic", to help her from throwing up they prescribed her strong anti-acid medication and continued using the increased dosage of Poly k-crystals. She was under IV and did not eat for 2 days, they prepared the KetoCal formula but she hated the taste.

On the second day she appeared to be hungry, so we gave her a little bit of hotdog, she ate it so fast but her body still threw it back up she could not control this. It was scaring her.

When I told them I have been syringing her cream Dr.Joshi was upset and said I was regressing her learning in eating. But I rebuttal by saying it was the only way I can get her to drink/taste the cream.

She came back and advised me to deeply consider a G-TUBE.

NO! I DID NOT WANT MY DAUGHTER TO HAVE SOMETHING MORE TO SET HER ASIDE FROM THE "NORMAL" CHILDREN. PLUS I HATE THE IDEA OF SCARS ON MY BABY!!!!

But since she couldn't intake any of her food I had no option but to accept it. Since there was no slot for an operation on Aliyah's G-tube they scheduled us for next week to have the G-tube implanted on my baby.

I felt useless.... my poor baby is going through so much.

Even though she was going though so much this was around the time she was calling for me... calling me.. "mama" ...

I may be smiling in this picture but believe me I feel desperate and unstable.... But around Aliyah, I have to put my best face out for her. 

Blood clots..... Sept 23.2011

Aliyah has received her flu shot. After being one week and a half of being seizure-free, 15 minutes after her influenza shot she began to seize again, first time in the glorious 1.5 weeks of being seizure free.

Also she began to throw up her meals. It first started up she was gagging. She then did not want to eat anymore. Yes. I did "force" fed my daughter. I needed the diet to be just right!!!! :(

Damn the hot dogs and damn the cream. :( I loved the results it gave Aliyah but she was throwing u all of her meals for 3 days straight. And to top everything else off we found little blood clots in her urine. I called the doctor's office, of course the nurse told me to keep a close watch. Again another blood clot in her diaper. This time we rushed to the hospital.

There they took an x-ray which what the pediatric feared to have seen kidney stones. So then Aliyah was ambulanced from Mary Greeley to the University of Iowa Children's Hospital. They had put a bag to collect urine to collect sample, by the time we arrived about 1.5 hrs later, we saw another blood clot a little less than a quarter size.

They ran some blood work and checked to see if Aliyah had passed a kidney stone.

Urology and G.I. both came back and told me they saw nothing but Neurology told me they did see two small spots as did the pediatric back in our home town. But I went with the specialist had to say. What they did do for us was TOOK ALIYAH OFF OF TOPOMAX because it increasing her chances of developing more stones and INCREASING THE DOSE OF CITRAE POLY-K CRYSTALS since in her blood work and urine samples it showed Aliyah was losing much of her calcium intake out in her urine, increasing the dose will help in maintaining it in her body. We were then discharged, they told us not to push her eating. She did eat sometimes but I no longer force fed her because she would have thrown up.

A GREAT DAY TODAY!!!! SUCH A GREAT DAY!!!!!

I just don't know WHERE to begin!!!

She is understanding more and more everyday!!!!! I am sooooooooooooooooooo happy for her..... all this happiness is making my chest hurt!!!!

When I asked Aliyah to give me a kiss she puckered up :)...
She tries to handle door knobs!!!!! I am pretty sure she is understanding the reason behind them!!! :)

I am almost certain she knows her name!!! FINALLY!!! and when I ask her to follow me , most of the time she does!!!!

She always wants to be right next to me..... literally RIGHT NEXT TO ME!!! I LOVE IT!!!! ABSOLUTELY LOVE IT!!!! I love being her best friend!!!! I love her unconditional love!!!

I don't know why I am crying but I have soooo much joy right now..... I was told by her specialist she may never be able to communicate with me and today she has more than ever!!!!!!!!!!! she is proving everyone wrong!!! little by little... I will be patient... I will wait patiently for the day she calls me mommy :) Everyday I wait for that one word!!!!!

I just have to be patient.... I know she will be alright.... I know I will make a safe and beautiful future for her!!! I just do....

(Words I am almost sure she understands!!!)
Sit
outside
up
thirsty/ drink

No/stop
(Maybe knows)
shoes
diaper

food

(Currently working on)

clap

hi/ bye (we are working on her waving)

I know many of you lovely parents are asking about Aliyah's speech, occupational, and physical therapy updates.... I will try my best to get these posted soon....

Please have faith on your bundle of joy!!!! and continue to be a strong advocate for them!!! together I know we can cope and try to be the best parents for our children .....

Exploring a Treatment for Epilepsy | Video - ABC News

Exploring a Treatment for Epilepsy | Video - ABC News

Sept.7.2011 Email from Dr.Joshi over Aliyah's genetic results/tests

Hello Lizette and Sean,

I hope all is well and Aliyah continues to make progress.

I have now received almost all the results for the tests recently sent.

All are negative so far.

These are as follows:

Chromosomal assay- negative for ring 20

CMA pending.

CSF negative for GLUT1 DS

CSF- normal amino acids, low HVA, other metabolites normal, no evidence of folinic acid responsive seizures

Urine- normal pipecolic acid

Urine organic acids no pattern specific for disease

SCN1A- negative for deletions/ duplications

Rett syndrome sequencing- negative

MERFF- ( myoclonic epilepsy ragged red fibre testing sent to Athena) negative.- mutations for MERRF 8244;8356;8363;8296

Redox panel- negative

CSF lactate and pyruvate- normal

Normal pyridoxal 5’ phosphate in CSF

CDKL5- pending

I think at this time, I would wait to see her response before commencing on more testing as any more testing now will be invasive ( muscle biopsy for example) and she is looking like she has cryptogenic spasms.

Have great day!

Charuta Joshi MBBS, FRCPC

Clinical Associate Professor

Division of Pediatric Neurology

2506 JCP, UIHC

200 Hawkins Drive

Iowa City 52242

Aug.19.11 Lumbar Puncture, PET SCAN, Video EEG AND SEIZURE LOG Aug 5- Sept 6.2011

Lumbar puncture (she had to be hospitalized

during this stay Aug. 19.2011):

She already had LP testing done but because Dr.Joshi wanted to use it for other

genetic testing Aliyah former doctor didn't recommend, that batch of culture was

already degraded since it has been over a year.

The PET scan was done so we can see if we could LOCALIZE where her seizures start

so that that section can be removed if possible, but unfortunately Aliyah seizures are

to generalized nothing can be done. But Dr.Joshi did say that maybe just maybe we

can localize it because perhaps the seizures appear to start all at the same time but

in reality they may not be, a difference make in less than a nano second. That type

of technology is not available in Iowa, Dr. Joshi made a comment that maybe she

can refer us to go to Chicago to get it checked.

During that hospital stay they did a video EEG of Aliyah. Her IS was still there. This

is when Dr.Joshi recommended the increase of the diet to either 3.5 to 4.0 but to wait

for another couple of days just in case the ratio she is on kicks in. We received bad news

during our discussion over Aliyah's EEG. She told us that Aliyah would most likely not have

an IQ of 100 since she is over 2 years old and still with IS.

YES.... I WAS DEVASTATED.... WHAT PARENT WANTS TO HEAR THAT!!!!

SUMMARY OF ALIYAH'S SEIZURE LOG

WE HAD NO IDEA WHAT WE WERE GOING TO FACE!!!

WORK , WORK and MORE WORK!!! But we were okay with it as long as the ketogenic diet was going to make Aliyah seizure free....

AUG 1st-4th: The day we were discharged we didn't see any head drops, my assumption was because she was so tired and sleeping throughout the day....... But the next day we did see head drops :(

8/5 3 head drops

8/6 4 head drops

8/7 3 head drops

8/8 5 head drops

8/9 7 head drops

8/10 3 head drops

8/11 4 head drops

8/12 *2 head drops + evening seizure log lost

8/13 6 head drops

8/14 9 head drops

8/15 5 head drops

8/16 3 head drops

8/17 *7 head drops + lost count of seizure log

8/18 ** more than 8 head drops (difficult to catch because was admitted at the hospital too many doctors and nurses couldn't keep an eye on my baby's head drops)

8/19 ** more than 2 head drops (had an Lumbar puncture done was given glucose, it was necessary to have the procedure done)--- KETONES LOW

couldn't keep better count because of the 2.5 hr drive back home, then she slept rest of the day

8/20 * more than 11 head drops, too many evening seizure log

8/21 * more than 4 head drops, 16 eyes shifts (this I started to include eyes shifting to the side)

<<<< COMPLETELY OFF ACTH AND ON HYDROCORTISONE (HAVE A GAME-PLAN TO WEAN HER OFF OF THIS ONE)>>>>

8/22 2 head drops

8/23 3 head drops

8/24 4 head drops, 3 eyes shifts

8/25 1 head drops

8/26 N/A :)

8/27 14 head drops, 6 eye shifts (HUGE cluster of 18 seizures, and 2 individual)

<<<< Tweaked from 3.0:1 ratio to 3.25:1 ratio >>>>

8/28 6 head drops, 3 eye shifts

<<<< Tweaked from 3.25:1 ratio to 3.5:1 ratio >>>>

8/29 N/A :)

8/30 1 head drop, 1 eye shift

8/31 1 head drop, 5 eye shifts (also couldn't tell if she was having absence spells)

9/1 1 head drop, 2 eye shifts

9/2 3 head drop

9/3 1 eye shift

9/4 N/A :)

9/5 1 eye shift (maybe absence spells)

9/6 2 eye shifts

*** I THINK 3.5:1 ratio did the trick!!!!!!

I must note that corn puffs was given to my daughter by her therapist, she forgot
my daughter was on a strict diet. Aliyah suffered by having clusters of seizures....
The counts were lost, but the awful experience is still remembered...

This just made us more alert who was around her and to be strict more than ever
when it comes to her diet.