FAQ - encephalocele
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what is occipital encephalocele?


Occipital encephalocele is a defect in the front or back of the skull where a portion of the brain and its surrounding membranes protrude, and is a common symptom for the lethal inherited disorder, Meckel syndrome.

The other most common symptoms of Meckel syndrome are multiple cysts on the kidneys (polycystic kidneys), and extra fingers and/or toes (polydactyly).  (+ info)

my son has encephalocele?


I'm just over 21 weeks pregnant and found out my son has encephalocele which is for those who don't know a birth defect in the skull where part of the brain in leaking out of. I don't know what to do!! I'm so scared they told me i should consider termination but i don't think i can do that I lost a little girl in july last year when i was 37 weeks and 6 days, to terminate would mean to me i am giving up on my own child. Does anyone know and insperational stories about babies with the same birth defect that can give me some hope!!??
it can be treated after birth they close the hole up, but it can effect the babies brain, the part of my sons brain that will be effect is mobilitly we won't be sure of how bad that is until his born it could be as bad as being in a wheel chair to just falling over more often when he's walking about, so far he kicks me like crazy so its not effecting him.
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Aw dreamer! Let me first say congratulations on your wonderful beautiful little boy! Secondly, I am so sorry that you have gotten such a hard diagnosis!

There is a great site called: http://benotafraid.net/ I REALLY encourage you to go there. There are a number of inspirational stories from parents who had gotten the prenatal prognosis of hydrocephaly only to have it misdiagnosed. Others had correctable surgery, others still had a peaceful birth and a chance to hold their babies while they said goodbye. Regardless, it is a great site!

We have dear friends whose 6th baby was diagnosed with severe hydrocephaly. They were encouraged to abort. Instead, she relished the time when she could provide a safe place to nurture and grow their baby and poured as much love, as a family, into that baby so that he would be loved and know love - even if only for a short time. They were told he would be born still. He was born looking around and breathing on his own. He spent 4 beautiful, heartbreaking, heartwarming hours with his family, being held, rocked, dressed, sang to, and loved on before he peacefully moved on...

It is a difficult thing, but not without hope. Not without hope that they are wrong in their diagnosis, not without hope that they are wrong about the severity, and not without hope that, even if he is only destined for a short time on this earth, that you cannot love and cherish him, protect and pour into him for these 9 months!

Feel free to email me if you want to talk!  (+ info)

Partial Seizures, Excessive sweating, Hot Flushes, Headaches...Cause?


I've been getting what some people say are probably partial seizures since the age of 16: basically, my arms, and often legs move uncontrollably, this lasts less than a minute, however, I can get one after another. I also have excessive sweating, excessive thirst (been tested for diabetes, don't have it), headaches, hot flushes (I'm a 28 year old male), which can last for a few minutes or all day despite cold weather, memory loss. I was born with a lump on my head which was thought to be either CNS (Central Nervous System) heterotopia or part of a residual encephalocele. This lump was removed aged 10, however almost 18 years later it seems to be coming back: the site where it was is often raised and is always tender, a duvet cover or just touching the hair around it can hurt. The pain has been so bad that it has woke me up on occasions. I have had MRI scans in the past, but these have shown up nothing. I have on appointment for an MRI scan in a few days, however as I said they never show up anything and the hospital (I'm in the UK, we have the NHS) won't give me any other type of brain scan, so I'm doubtful anything will show up with this. Doies anyone have any idea what is causing these symptoms?
Oh and I won't be using any medications from dodgy websites, a doctor would NOT tell me to use the websites so quit the BS!
Oh and I won't be using any medications from dodgy websites, a doctor would NOT tell me to use the websites so quit the BS!
PS that last bit was to a bogus doctor who posted, he's deleted it now
can't you read Ingeborg? I said I was buying any fake pills, so take your dodgy illegal website and stick it where the sun don't shine!
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I am sure that you have read all the literature available on the malady
so there is not much we can tell you. You must be a very strong
soul to bring that kind problem into the world with you.  (+ info)

what's causing these symptoms?


sorry, posting again cos some idiot keeps posting a link to his fake drugs website.
Now the details:

I've been getting what some people say are probably partial seizures since the age of 16: basically, my arms, and often legs move uncontrollably, this lasts less than a minute, however, I can get one after another. I also have excessive sweating, excessive thirst (been tested for diabetes, don't have it), headaches, hot flushes (I'm a 28 year old male), which can last for a few minutes or all day despite cold weather, memory loss. I was born with a lump on my head which was thought to be either CNS (Central Nervous System) heterotopia or part of a residual encephalocele. This lump was removed aged 10, however almost 18 years later it seems to be coming back: the site where it was is often raised and is always tender, a duvet cover or just touching the hair around it can hurt. The pain has been so bad that it has woke me up on occasions. I have had MRI scans in the past, but these have shown up nothing. I have on appointment for an MRI scan in a few days, however as I said they never show up anything and the hospital (I'm in the UK, we have the NHS) won't give me any other type of brain scan, so I'm doubtful anything will show up with this. Doies anyone have any idea what is causing these symptoms?
yeah I tried googling them, the first one seemed the most likeliest, but it's so rare that there's not a lot on it
thanks for the links and info Redangel. Unfortunately, if it is a thyroid disorder, the seizures are cyclical, so most of the time on thyroiud tests I've had normal results
I have been to the doctors loads of times, and hadc many tests, but the endocrinologist I saw clearly didn't believe any of my symptoms, despite the fact that I was sweating on a cold day right in front of her eyes!!!
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This may be a nervous system disorder. i found a website listing many of your conditions for a sympathetic nervous system disorder...it does list birth defects can cause this and has a link to CNS disorders.

Sympathetic nervous system disorders:
http://www.buzzle.com/articles/sympathetic-nervous-system-disorders.html

Brain heterotopia:
http://resources.metapress.com/pdf-preview.axd?code=l228l0553g833tw4&size=largest

Encephalocele:
http://resources.metapress.com/pdf-preview.axd?code=r587q35814043760&size=largest

Google scholar has more information to look through:
http://scholar.google.com.au/

Simple Partial Seizures: Differential Diagnoses & Workup:
http://emedicine.medscape.com/article/1184384-diagnosis

Another condition is a possible thyroid imbalance. In some people, seizures are a symptoms from a thyroid condition. Excessive thirst can be a sign of an endocrine disorder.

Endocrine disorders:
http://www.austinthyroid.com/endocrinology.htm  (+ info)

partial seizures, hyperhidrosis, tiredness, thirst...?


I've been getting what some people say are probably partial seizures since the age of 16: basically, my arms, and often legs move uncontrollably, this lasts less than a minute, however, I can get one after another. I also have excessive sweating, excessive thirst (been tested for diabetes, don't have it), headaches, hot flushes (I'm a 28 year old male), which can last for a few minutes or all day despite cold weather, memory loss. I was born with a lump on my head which was thought to be either CNS (Central Nervous System) heterotopia or part of a residual encephalocele. This lump was removed aged 10, however almost 18 years later it seems to be coming back: the site where it was is often raised and is always tender, a duvet cover or just touching the hair around it can hurt. The pain has been so bad that it has woke me up on occasions. I have had MRI scans in the past, but these have shown up nothing. I have on appointment for an MRI scan in a few days, however as I said they never show up anything and the hospital (I'm in the UK, we have the NHS) won't give me any other type of brain scan, so I'm doubtful anything will show up with this. Doies anyone have any idea what is causing these symptoms?
FFS Ingeborg, stop posting your illegal fake drug websites, I am not as stupid as you, therefore, I will not purchase anything from you, so go away you moronic cretin!
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drink lots of water  (+ info)

What would you do...?


I know this is my choice, and my choice alone...but i'd like to hear some other people's opinions.
I just had my first-trimester screening, and found that my baby has a Neural Tube Defect called an Encephalocele where the head meets the neck. They haven't finished doing tests, but are pretty positive it contains brain matter. I've done some reading, and these are the statistics i've come up with:

Only 21% of babies with this defect are born alive.
Of those born alive, only half survive longer than a few hours or days.
That leaves us with 10.5% that even survive.
Of those that survive, 75% will undoubtedly have serious mental retardation's. (Meaning...no walking, talking, being able to feed itself, spastic seizures, and a long list of other terrible things)
So overall, i'm down to a 2.63% chance that my baby will survive, and be okay.

At the moment, I hate the world. It's no one's fault and I know that...but I know how many undeserving women out there just spitting babies out like no tomorrow, and have no problem. We wanted this baby, I was doing everything right...everything I was supposed to...and look what happens.
The options i'm faced with now, are...
1.) Hope like hell that by some miracle the baby makes it through it, and is okay.
2) Continue the pregnancy...and wait and see what happens. Possibly to go through labor, only to have a stillborn, or have it die shortly there after.
3) Terminate the pregnancy.

Both sides of our family are leaning toward option 3...which really shocked me because my side is very anti-abortion, and his side is very religious. They're saying they think it would be best for the baby, and for us...to not even go through that. My boyfriend cried harder and longer than i've ever seen a man cry. We both are devastated...and I don't know if I can make myself, him, and both our families go through anymore.

What would you do? If you would keep it, how would you mentally prepare yourself for what's to come? If you would terminate, how do you justify that in your mind as being "okay"?
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