Scary And Sad...

[garykainz]

My sister had her first child about 6 months ago. His name is Zachary, and he was pretty premature. My sister went in for a check up and the doctor told her that they needed to get him out (for reasons I don't remember). They got him out fine and he's been progressing (albeit slowly, because he was a premie).

Then he started having seizures/spasms. His head will drop to his chest and his arms will flail up. He does this about 25 times in a row. It's really sad/scary (My brother in law has a video up on his blog if you think you can stomach it... it's really sad here ). They took him to a neurologist and they diagnosed him with West Syndrome.

Here's WebMD's version of it: "West Syndrome is a rare form of infantile spasm that occurs very early in the development of an infant. Unusual brain wave patterns occur (hypsarrhythmia) and possibly mental retardation. The spasms that occur may range from violent jackknife or "salaam" movements where the whole body bends in half, or they may be no more than a mild twitching of the nose or mouth. These spasms usually begin in the early months after birth and can often be helped with medication. There may be many different causes for the spasms."

It's really scary and sad. Keep them in your thoughts/prayers please

[bulletmike87]

My sister had her first child about 6 months ago. His name is Zachary, and he was pretty premature. My sister went in for a check up and the doctor told her that they needed to get him out (for reasons I don't remember). They got him out fine and he's been progressing (albeit slowly, because he was a premie).

Then he started having seizures/spasms. His head will drop to his chest and his arms will flail up. He does this about 25 times in a row. It's really sad/scary (My brother in law has a video up on his blog if you think you can stomach it... it's really sad here ). They took him to a neurologist and they diagnosed him with West Syndrome.

Here's WebMD's version of it: "West Syndrome is a rare form of infantile spasm that occurs very early in the development of an infant. Unusual brain wave patterns occur (hypsarrhythmia) and possibly mental retardation. The spasms that occur may range from violent jackknife or "salaam" movements where the whole body bends in half, or they may be no more than a mild twitching of the nose or mouth. These spasms usually begin in the early months after birth and can often be helped with medication. There may be many different causes for the spasms."

It's really scary and sad. Keep them in your thoughts/prayers please

I'm sorry man. He's in my prayers, I can't bring myself to watch the video though.

-Mike

[garykainz]

i think i may have overstated the severity of the video. it's not like a full body convulsion. he just puts his head down and his arms up. i think it's the realization that it's actually a seizure that makes me sad.

[ZenSilk]

Ohh dude, this lady who used to watch me when i was little when my dad was at work had a little girl with West's. One day she started spasming and we had no idea what was happening, so they brought her to the hospital and they found that out. It's a horrible disease. I'm sorry to hear about that.

[nicayotte]

Thats horrible, I feel bad for you and your sister seeing as it is her first child, I had my mother(doctor) take a look at the video and she says there isn't any apparent signs in his face of down syndrome or anything of that sort

[garykainz]

wow, cool, thanks nic

[Tati]

My prayers are with Zachary.

[SafeSearchOff]

I'm really sorry to hear that man, I'll keep him in my prayers. I'm sure he will turn out fine.

[LilTank13]

My heart goes out to you and your family! They are definately in my prayers... There is literally nothing worse than seeing a premie who had to fight so much harder anyway have trouble. My girlfriend's twin sisters were VERY premature and barely made it. I wish you all only my best.

[garykainz]

thank you so much everyone for your thoughts and prayers!

[ghostofdavid]

I will definitely prayer for this whole situation. Keep us updated, ok?

[garykainz]

well, he's been to the doctor a couple of times lately and he's had an MRI and an EEG. they're still waiting on results to find out if it's genetic (the worst kind, which means parts of his brain are missing) or trauma related (the lesser, easier to treat kind, which means that it's brain damage).

Now he's got these really funny and cute little glasses he has to wear 24/7 because he's super far sighted. so those should help with the slow development, now that he can see his toys.

He's got some medication that's really expensive that stops the seizures for now, but they keep having to up the dose because it'll work for a week then it wont...

i'll keep everyone updated. i have a picture of him with his glasses on my phone that makes me laugh every time i see it. i'll try to get it online.

[garykainz]

Well, it turns out that little Zachary has been diagnosed with Cerebral Palsy...

[garykainz]

Here's an email I got from my brother in law...

This is to follow up on Zachary's MRI.

The neurologist had both Renee and I come in for the results the day after, which was Thursday. It wasn't good. The MRI showed that Zachary has a lot of fluid in the center of his brain, has cysts and also has a thin layer of white matter. The diagnosis is cerebral palsy. Zachary is having a considerable amount of disruption between his cortex and nervous system communications. It is a significant neurological problem and is life-long. It cannot be cured.

Cerebral palsy is an umbrella term to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The term cerebral refers to the brain's two halves, or hemispheres, and palsy describes any disorder that impairs control of body movement. Faulty development or damage to motor areas in the brain disrupts the brain's ability to adequately control movement and posture. (you can find out more at www.cpparent.org)
Right now, he cannot control his body to move the way he wants. He is confined to spastic, rigid and abnormal movements - all from his lack of proper motor control from the brain damage.

What is exactly happening: The spasm-seizures were the most alarming symptom that brought upon all these tests (EEG, neurologist visit, full-brain-scan MRI, body-fluid labs). However, we were concerned long ago when he came home from the hospital that his movements and behavior were not normal.

We noticed since he came home to us on April 6:
-poor head control after 3 months of age
-Increased muscle tone (stiffness, extreme hypertonic)
-Arching of the back
-Inability to sit, roll-over
-Favoring one side of the body (his head always tilted to one side)
-Increased irritability
-Feeding problems
-Continuous clenched fisting of hands
-Scissoring of legs
-Pointing toes
-exaggerated startle reflex
-Crossed eyes.

We brought every single one of these concerns to our pediatrician at our regular visits. Our pediatrician brushed these signs away as being 'normal' and told us that Zachary was doing great and would grow out of it. We were still concerned, and with hindsight, should have gotten a second opinion from another doctor. It wasn't until the symptoms manifested the spasm-seizures on Oct. 3 that we began the path to finding out what was really wrong. Because of the missed diagnosis, Zachary missed out on several months of potential physical and occupational therapy that could have helped him in his early development.

What we're doing from here: The cerebral palsy diagnosis gives us the explanation and source to the spasm-seizures he's having. So the first thing we need to concentrate (and pray) on is stopping the spasms through medication. He has been taking a good medication, Vigabatrin, that has limited side-effects for the last three weeks. We can see it's helping effects on & off. We do not yet know if the Vigabatrin will completely eradicate the spasms. The only other option if the Vigabatrin doesn't work is to put him on a hormone injection, ACTH, which has potentially big and serious side effects. If neither drug work to stop the spasms, Zachary is looking at some form of epilepsy for the rest of his life (mostly spasms or drop seizures) and would have to take more medication.

The ongoing spasms directly effects Zachary's development by impairing it. If the spasms can be controlled/stopped, then he'll be better off with his development.

To help him with his body tone we are taking him on weekly visits to a physical therapist. The therapist works with him to build proper muscle tone and balance. We are also trying to get into an occupational therapist as well which would help him learn to grasp and use his hands. These two therapies are the two recommended treatments while he's this young. Since Renee is gifted at massage therapy, she massages his muscles at home and we both do physical therapy exercises with him as well.

Long-term/Beyond: We do not know yet. As mentioned above, if the spasms cannot be controlled, he will have a lifelong form of epilepsy. Cerebral palsy does not get worse as time passes. We do not know how it has affected his cognitive skills yet and we just have to wait and see how it all plays out as he gets older. There are varying degrees of cerebral palsy - it could affect his fine motor skills, balance, walking, muscle control, mental impairment, a combination of any of the previous, one or the other, etc, etc.

Causes: An injury caused by a permanent brain injury or legion, which may occur before, during or after birth. It can be from premature birth, any complication during pregnancy which causes hypoxia (lack of oxygen to the brain), or any lack of oxygen even after birth. Renee had complications toward the 33rd - 34th week of gestation, which resulted in an emergency c-section at the 35th week. Zachary measured 8 weeks early instead of 5 and came out not being able to breath on his own. There were a series of several minutes between birth and oxygen tube insertion as well. But, these are only possibilities; we do not know for sure.

Positives: He's a very good baby, we love him and overall he's outwardly healthy! As the neurologist told us in reassurance, Zachary is responsive to us and others, he is comforted by his parents, he smiles and laughs when tickled, is cute, happy, and is a good eater - Praise God! He has his eyeglasses now and seems to be focusing much better too.

God is challenging us in ways we never imagined and we know that His love and comfort will see us every step of the way. We've shed our tears, released our previous ideas of our future to God, submit to the incredible journey He has in store for us and submit to His ultimate will for all our lives.

John 3:1-3 - As He went along, He saw a man blind from birth. His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (Thanks to Pastor Rick for leading us to this verse)

We love you and thank you for your continued prayer and support. Thank you for being in our lives!

Love in Christ,

Nathan and Renee.

Here's a few pictures of the cute little bugger with his glasses...

Zach 1
Zach 2
Zach 3 Edited October 29, 2007 by garykainz