Anya's Learning Area

We converted our little living room to my therapy area. The first time mom showed it to me, I kept staring at the floor and was very much delighted because I enjoy looking at the high contrast colors of black and white. I also like my big red gymnastics ball!

And my hammock is where I take some of my afternoon naps while mom rocks it to improve my vestibular senses.

Teacher Anna was happy to see the place and she had mom do some more equipment that will help me. Wait til mom uploads those!

December 2009 with the family

Earlier this day was my first recorded seizure and first trip to the E.R.!

Some of my December socials :)

Brain Food

Vitamin B Complex 1 capsule 2x/day
Omega 3 liquid 2.5mg 2x/day - changed it to Chia Seeds
Mommy used to take malunggay pills for breastmilk but now we're looking for donations since she ran dry!

Anya's MRI January 6, 2010

Plain MRI study of the brain shows "hour-glass configuration" of the brain with signs of incomplete cortical gyri formation involving the fronto-temporal and slightly the parietal lobe regions while the corresponding coritcal thickness is prominent, the visualized WM segments are relatively thin; in fact, "sparse" and non-myelinated. The body segments of corpus collosum are thinned out to some degree.
The Sylvian fissure sulci are relatively shallow particularly in the left side.
Basal ganglia, internal capsule, thalamus, midbrain, pons and cerebellum appear well-formed.
Foci of what appears like GM heteretopia are also seen along the temporo-parietal subcortices right side more than the left.
Multivaxel MR spectroscopy focused to the fronto-parietal supraventricular levels demonstrates elevated lactate/lipid peak along the right parietal periventricular T2W1 and FLAIR hyperintensity changes (vaxel 1 & 4 on the film #5). There are normal Choline, NAA and Creatine levels in the rest of the area of study.
The ventricles are moderately enlarged (even in this age group) with a cavum septum pelluciclum; temporal horns are commensurately dilated but fairlt symmetrical.
A large cisterna magna is seen appearing 'incompetent'.
The underlying vermis and cerebellum show no mass effect and the cerebellar tonsils are above the foramen magnum line.
The aqueduct of Sylvius and IV ventricles are patent, remaining in normal position.
The rest of the superior convexity including the lateral cerebellar sulci are relatively thinned-out.
The C-P angles petromastoids, sella, extrasellar and visualized retro-orbital structures are not remarkable.

IMPRESSION: Above findings are consistent with lissencephaly type I, a form of neuronal migration disorder.
Hydrocephalus with components of shallow Sylvian fissure, incompetent cisterna magna and what appears like GM heteretobia as described above.

Easy to love

Is it easier to love someone who acts like an asshole, a jerk, someone who answers back and has anger tantrums... or someone who is non-reactive and seems to be indifferent?  One communicates with you and the other does not seem to.

I often wondered this if I am faced with the reality of an autistic child.  I haven't seen her truly smile.  Sometimes she does, but often in between seizures.  Am not sure if that is part of a seizure.  The other night though, she was laughing and cooing and it wasn't for a short time but for quite a while.  And I knew it was a reaction to what I was doing - cooing and tickling her and flashing the light.  That almost brought me to tears.  I savored that moment.  I wish there are more of those.  I wish that becomes a regular thing with Ate.

Homeopathic Remedies

seizure control remedies
started January 28, 2010
blue bottle 2 drops 3x/day
yellow & red bottle alternating days 2 drops 3x/alternating day

We searched for alternative medicines because mom did not believe in anti-convulsant drugs. She doesn't even like using anti-biotics. She knows I am strong. She knows I can fight it off. Seizures can be very tiring and although it is much easier with anti-convulsant drugs, these have many long term side effects and sometimes make me dull and sleepy that I can't do any pf my therapies.

We were so thrilled to find a pediatrician practicing alternative medicine. She recommended these and so far everything has been going smoothly. No more violent seizures.

I also took some homeopathic remedies to fight off the really bad cough I had.

Click on the photos for more details. And read this blog:
http://anyasmiracle.multiply.com/journal/item/3/Less_Seizures_More_Therapy

Less Seizures, More Therapy

Since I started on homeopathic remedies just a week ago, my infantile spasms have been controlled although I still have other forms of seizures.

I no longer have infantile spasms - those painful and tiring jerking movements that really frighten me and then piss me off.  Mom recalls that before I would have an attack, I would literally look scared and sometimes whimper in fear.  Then in less than a minute, the first spasm happens.  My infantile spasms reach between to 80 to 140 violent jerking movements, would last between 5-7 minutes and that would happen around 3 times a day.  At its peak several weeks ago, I would have 5 episodes in a day.

Of course, those were the only seizures my parents took notice of.  After reading a book on seizures, mom realized that I have been seizing most of the day. My new friend Xavi (7 year old son of mom's friend) has 30-40 seizures in a day but mostly the staring type.  And they had a 24-hour EEG to figure that out because some seizures were too subtle.  Mom and Dad are still thinking if another EEG would be helpful at this point. 

My other seizures are lip smacking, staring into the corner, eye rolling with very subtle body jerking, sudden clasping of hands like I am clapping (10-15 in a row), leg stiffening (5-10 in a row), repeated rubbing of eyes and nose with my hands (5-10 minutes non-stop).  All these happened even before my first infantile spasm.  And some still continue now.  Dad thought my lip smacking was something I picked up from the constant kisses I receive from them.  And Mom and Dad thought I was just really one active kid because I have 2 hair whorls (some old saying in our country 2 puyo means malikot or really active).  Ho-humm little did they know.

Anyhoo.... anti-convulsants Valproic Acid with Lamictal tasted sweet.  Mom had a few sips or two.  She wouldn't let me take anything she wouldn't take herself.  But it didn't do me any good except get me sleepy.  And the doctors insisted on having my liver checked because of the possible side effects of the medication.  That really sucked because it didn't work and I had to go through painful blood extractions from resident doctors who couldn't get it right the first time and had to insert the needle in my arms 3x before getting blood.  Well, all that for nothing because I still kept seizing with violent infantile spasms.  (Mom might upload a video of those experiences, but it might depress other family and friends).

Homeopathic Remedies... alas!  Tita Z's doctor and also mom's friend, Tita Jen's doctor.  She's wonderful!  She gave me some homeopathic remedies and infantile spasms are gone!  Well, not completely since I still have tight fists, herd jerking, legs curling in... but all in a tolerable frequency, intensity and duration that sometimes I don't mind it.  Mom minds though.  She wants the seizures completely gone.  Now with less seizures, I can do physical therapy and Doman methods with more frequency, intensity and duration.  But I'm trying to get rid of a really bad cough.  Mom is afraid it may lead to pneumonia which is the number one cause of illness and death in liss kids. When I'm well, I'll do more therapy.

Other therapies my parents are considering are: hyperbaric oxygen therapy and advanced biomechanical rehabilitation.  Funds are needed for these.  We need to do more research on these too.

- Ate

Recap of the first 7.5 months

1^st few weeks of life in Mommy’s womb:  spotting, but after doctor’s check-up, Krissy seemed okay.  Bedrest for at least 2 weeks.

Smooth pregnancy – Mommy did not get sick except for cough and cold that happened once.

2 weeks before giving birth: ultrasound showed some fluid (that should not be in that amount) in left lateral ventricle of Ate’s brain. 
June 15, 2009. Normal delivery, relatively smooth and easy.  Mommy walked into hospital grounds at 3am and was already 8cm by the time the doctor checked on her.  Epidural was immediately given as requested by Mommy.  About 5 pushes with fundal pressure from doctor, Ate was born 5am.  She cried a few seconds after she was lightly tapped.  Cord coil on Ate, but doctor’s say it was not long and posed no danger.  Fluid had to be taken out of Ate’s lungs.
1 week of life: Ate’s brain ultrasound showed the fluid in left lateral ventricle has lessened.

2 months of life:  Pedia-Neuro reviewed results of tests, all okay.  Not concerned about the fluid in brain, but more on the gray matter if it was affected.  Continue breastfeeding. Observe Ate.  Play with Ate.  Note: Ate  has left gaze preferential view so play and talk to her on her right side.
3 months of life:  All going well.  Exclusive breastfeeding. Ate cooing and gurgling. Eyes following movement.  Has eye contact and smiles at faces.  Enjoying classical music.  Slowly lifting her head.

4 months of life: Ate still cannot pull-to-sit.  Hardly lifting her head now.  Has stopped cooing and gurgling.  Arms are floppy.  Eyes follow movement only at halfway point.  Left gaze preferential view.  Optha-Neuro did a check-up but all seemed well and she started looking more to the right.  Parents thought Ate was just a little late.

November 15, 2009.  5 months of life: Ate hardly lifting head, does not react to you, arms are floppy and legs stiffen often.  She is restless often and seems to have “useless” movements.  Ate lost her social smile.

November 17, 2009 Pedia-Neuro diagnosed Ate showing signs of GDD and microcephaly.  Parents receive shocking news that Ate could be/have: mental retardation, cerebral palsy, down syndrome, autism but cannot be determined right now.  She is 5 months but behaves like a 2.5 month and doctor said it is possible that at 20 years of age, Ate would have a brain of a 10 year old.  Aggressive therapy and aggressive infant stimulation needed.  Start with physical therapy to develop basic motor skills and eventually seek occupational therapy, speech therapy, whatever else therapy.

Mommy cried for 2 days, depression slowed breastmilk supply.  Infant formula introduced to supplement.  Infant formula intake between 6-10oz per day only while the rest of the day was on breastmilk.
Ate visited various special schools and was evaluated by 3 therapists and 1 Developmental Pediatrician – all separately concluded she is only behaving like a 2.5 month baby and all recommended same aggressive therapy.  Finally found a physical therapist to do home sessions.
December 2, 2009 First seizure attack (after about 2 weeks of supplementing with infant formula).  Rushed to Makati Medical Center ER.  Was not admitted, but an EEG had to be done.  Doctors could not conclude if it was indeed a seizure at that time.  Parents notice habit of hands wiping her eyes and nose.
At least 2 seizures a day happened after that.  Mommy had video camera on stand-by and showed videos to Pedia-Neuro.  EEG results finally came out and showed seizure spikes.  By this time, 3 seizures a day.

Ate still not smiling or cooing although sometimes mutters a sound “uh.”  She cries during seizures.  Complains with a coughing sound when uncomfortable (when being washed or when she’s sleepy but can’t seem to sleep).

December 7, 2009 Valproic Acid (Depakene) anti-seizure medication introduced in low dosage but gradually increased.  Possible side effect is harm to the liver. But priority is to stop seizures otherwise development will continue downhill.  Seizures happened 4 times a day on average.  Pedia-Neuro said give medication 2 weeks to take effect. Do liver test and other kinds of blood tests after 2 weeks.
December 21, 2009 Liver test result so far okay.  But seizures have not improved but increased 4-5 times a day.  Other blood test suggest that problem could be metabolic.  Since seizures happened after infant formula was introduced, Mommy decided to go breastmilk only.
December 22, 2009 Ate experiences the needle several times as they draw blood from her vein and arteries for several tests.
December 23, 2009 Ate’s 1^st MRI attempt. She woke up halfway and would not go back to sleep even with Demerol injected in her.
January 6, 2010 Ate’s 2^nd MRI attempt.  At 1:30pm injected via i.v. with Benadryl and Demerol. Allergic reaction swelling of tongue, redness on nose and eyes, tremors around lips. Latched on to mommy immediately and within minutes of having breastmilk, allergic symptoms disappeared.
January 7, 2010 Ate sees a Pediatrician-Geneticist specializing in metabolic disorders.  Further tests have to be done.  Awaiting results of previous urine and blood tests.  Pedia-Geneticist suspects mitochondrial disease.

January 8, 2010 Pedia-Neuro said Ate’s MRI results showing schizencaphaly and lactate peak.  Pedia-Neuro suspects mitochondrial disease.  MRI official report reads lissencephaly type I.
January 14, 2010  Ate  still has not smiled at us again.  She does not coo or gurgle but sometimes mutters “uh” like she forgot to say the other sounds she used to make.  She often looks at the light and can follow the light from the cellphone screen.  She can lift her head for a few seconds but cannot push herself up using her arms and shoulder.  She seems to have seizures of staring or repeated useless movements like turning her head left and right aimlessly.  This happens often during the day.  She still rubs her right hand (sometimes both) on her eyes and nose.  When on prone, she rubs her face on the bed.  Since birth, she has always preferred looking to the left.  On prone, she rests her head looking to the left and when we turn her head to the right, she lifts it and returns to the left.  When we force her to keep looking right on prone, she gets irritated and angry.  She is often sleepy now – perhaps the medication?  It seems she cannot hear since she does not react even when we try to startle her with loud noises – awake or asleep.
January 25, 2010  Ate’s Audio Brainstem Response Test.  Waiting for official reports although we have been told that she has profound hearing loss.  She can hear an airplane jet like a whisper only.
January 27, 2010 We went to a Pediatrician – Anthroposopic medicine.  Ate started on homeopathic remedies for her seizures.  Valproic Acid and Lamictal still to be given but dosage not to be increased.
January 30, 2010 Ate’s seizures has lessened to 1-2 a day and the “intensity” has significantly decreased.  She doesn’t yelp during spasms and cries more out of irritation.  She has a bad cough with phlegm though – which she had for quite a while.

Praying for a Miracle

We sent this to family and friends through email sometime 3rd week of January 2010

Dear Family and Friends, (finally found the strength and time to do this email)

Some of you may have an idea of this and some will know about it for the first time…

We ask for your prayers and support for our daughter, because she needs a MIRACLE.

She has been diagnosed with lissencephaly type I (may be schizencephaly), hydrocephaly, microcephaly, global developmental delay and epilepsy – a seizure disorder.  She has been having seizures called infantile spasm 3-4 times per day with clusters between 50-120.  Each episode is usually between 5-10 minutes.

Doctors Suspect: mitochondrial defect and metabolic disorder.

Doctors’ Prognosis: severe mental retardation in all areas of development: cognitive, motor, visual, auditory…  Lifespan: may not survive infancy but may also live as a disabled into adulthood.

What’s That? (for more info, you may research about these terms on the internet)

Lissencephaly…Schizencaphaly…infantile spasm (IS)…Global Developmental Delay (GDD) … Microcephaly … Hydrocephaly

What’s Next

She has weekly visits to the Pedia-Neuro.  Visits to a Developmental Pedia, an Optha-Neuro, a Geneticist specializing in Metabolic Disorders, an ENT, etc.  She has many doctors to see on a regular basis.  They will monitor her progress and continue adjusting her medications.  Medications are computed on her weight and on her progress.  The objective is to try to find the amount of least medication needed to control seizures.  Priority is to control seizures otherwise her development will just go downhill with constant seizures.

Tests will be done to find out if what she can hear and see register in her brain.  Initial hearing and visual tests indicate her eyes can see and her ears can hear.  But because of the fluid in her brain and disorganized brain formation, we have to check if her brain is receiving the information.

Ate now has a physical therapist coming over to the house once a week to help develop her basic motor skills.  Once Ate is ready, an occupational therapist may be needed to develop her fine motor skills.  A speech therapist and other therapists may be needed in the future.

Ate is also enrolled in Kindermusik – even if we’re not sure if her brain can “hear.”

Anya has stopped infant formula and taking in breastmilk.  She has started with vegetables as her first solid food.  Since infant formula was removed and medications given, seizures are down to 3 times per day.  On occasion 4 times per day.

The cause of all these is still unknown.  If no known cause can be found, doctors will do a “shotgun” treatment where they will try anything and everything to stop the seizures so “Help them God!” and therapy is to be continued as long as able.

How can We Help?

Prayer.  Ate needs a MIRACLE and we believe it will be granted to her.  We believe in the power of prayer.  We pray to everyone in heaven of course.  And we ask for the intercession of Mama Mary and all the Saints.  Specifically we are praying for the intercession of Blessed Alvaro del Portillo.  He needs several “documented” miracles to be a canonized saint just like Pope John Paul II.  Ate will be a documented miracle that we will submit to Rome.  Please pray with us.

Accompany us.  Even your presence during a doctor’s visit or a blood extraction from Ate will be a great comfort to us.  Ate’s liver has to be constantly checked so she will experience the needle quite often.

Visit Ate.  Ate needs “aggressive” stimulation.  Come over and sing her a song, carry her around, help her move her tiny arms and legs during a therapy session, let her smell you, touch your face, do a session of her stimulation cards, or simply talk to her.  Just let us know ahead of time so that you can catch her when she’s awake.

We want the best for Ate and have dared to explore the possibility of going abroad for treatment if needed.  There are 2 institutes we are looking at: Johns Hopkins Medicine http://www.hopkinsmedicine.org/ and The Institutes for the Achievement of Human Potential http://www.iahp.org/. 

The Institutes will be in Singapore on July 2010 for “What to Do about your Brain-Injured Child Course.”  That would be just the beginning as we intend to enroll her in the Intensive Program.  We are currently raising funds for this purpose.  You can also help us accumulate Mabuhay Miles at your convenience (just email and I’ll let you know how we’ll do it) since this would require frequent trips abroad.

Our little Angel

Ate is not to be pitied.  Every attack is painful and tiring, every blood extraction is painful and tiring, and there would be more painful & tiring experiences for her.  But she has received the gift of life from God and only the select few are called to carry a burden such as hers.  We know she has a mission we do not yet understand.  God knows she can handle it.  We also know that only good can come out of all this so we are always thankful to God.  We are blessed to be a part of her life. -- all these I have to constantly remind myself.

Ate is what the world would call a “special child” and we have accepted that.  Still, we have not finished shedding our tears.  We feel anger, denial, blame, guilt, sadness.  While others may feel ashamed to tell the world they have a special child, we have decided the share this with you.  We are proud of our daughter.  Mothers brag about their crawling 7 month old baby and but we are proud to say our 7 month brain-injured baby has finally lifted her head (whereas their babies lifted their head at 2 months).  Although at times we may evade the question, “How’s Ate?” because our answer will always be, “she is not okay.” 

A friend told me that things will never be okay, but one day I will be okay with it – for most of the days at least.  We continue to ask for your prayers.

Ate has a facebook account so just add her please.  Updates on her life should be there – we’ll do our best since we don’t even get to update our own accounts.

Thank you for taking the time to read this.  Thank you in advance for your prayers and support.