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No matter how many times, it just never gets easier.

Posted by on Mar. 4, 2012 at 11:51 PM
  • 32 Replies

Ever since my son was 4 months old (hes 3 now) he has been getting MRIs every 6 months. His first one was to check for hydrocephalus. It came out "normal". But because his head circumfrence wasnt slowing down they did another. He had abnormalities, but they didnt want to diagnose him since there were few symptoms that could be just "normal" delays a lot of children have. They keep getting worse and worse. The last one showed that his corpos collasum is thinnking, enlarged ventricles and moderate amount of brain matter missing. Its been a rollercoaster needless to say. Today, he acts like a pretty typical 3 year old, with delays in speech, behavorial problems, gross motor skills, moderate eyesight loss. They just can not pin point whats going on.

Tomorrow, he gets yet another MRI. I keep telling myself it will be okay.He is progressing really well, he is still moderatly behind, but the things he does do I am so proud. Everytime they do an MRI they have to put an IV in and intubate him. It never gets easier having to see your baby hooked up to machines (he also has an airway condition that they have to be cautious of when hes put to sleep, hence the intubation)  Im all alone in this as my family just doesnt get it. They dont understand how terrible this is. Tomorrow is the worse part, until its over. I go through the same emotions everytime. First is emotional having to see him have to get an IV, and a tube down his throat. Then the drive to the hospital (2 hours) to go over the MRI results. Im at the point to where I just want to get answers, Im more scared of NOT getting answers than getting an answer.

I dunno, I just really wanna break down and cry. I am so sick of this and I just wants answers!!!!! I dont understand why its sooo hard for them to give me an answer!

by on Mar. 4, 2012 at 11:51 PM
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Replies (1-10):
mommyredrose23
by on Mar. 4, 2012 at 11:55 PM

I'm sorry.  Poor guy.  :(  I would feel much like you do if my son had to go through that every six months.

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Mommyof2n0308
by Platinum Member on Mar. 5, 2012 at 12:07 AM
It sucks! This time I'm going to find a pedi that'll help get us to a new neuro. I love ours but maybe someone with a fresh look can tell me !


Quoting mommyredrose23:

I'm sorry.  Poor guy.  :(  I would feel much like you do if my son had to go through that every six months.


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RmeWifey01
by on Mar. 5, 2012 at 12:09 AM

Brain matter is just missing? How is that even possible? Well I am sorry he has to go through this again, but I hope this time they have something solid to tell you.

Mommyof2n0308
by Platinum Member on Mar. 5, 2012 at 12:20 AM
I've gotten the same theory by 2 docs. An ent and a family practitioner in the clinic we go to but he's not our actual pedi. They both said they think ds had hydrocephalus at one point which made the ventricles enlarge and pushed the brain matter away. It makes sense however, the neuro doc says even though he's heard of cases where hydro corrects itself it's very very rare and when it does happen it always comes back.


Quoting RmeWifey01:

Brain matter is just missing? How is that even possible? Well I am sorry he has to go through this again, but I hope this time they have something solid to tell you.


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sweet.lil.mama
by on Mar. 5, 2012 at 12:30 AM
I'm sorry :( my son had a huge head the first year over 100th percentile til he was about 15 months. He had plagiocephaly and had a helmet for a few months to round his head out. He had an ultrasound, xray and CT scan of his head at 8 months old. He was under anesthesia for the CT scan. It was scary.
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Kris_PBG
by on Mar. 5, 2012 at 12:32 AM
I'm sorry...
Mommyof2n0308
by Platinum Member on Mar. 5, 2012 at 12:35 AM
They've mentioned that a few times. His head now is 56.5cm. My dd8 is 49 and she's 5 years older. I've thought about getting him a helmet bc hes soooo top heavy he's always falling on his head. How old is your ds ? What's his head measure!?


Quoting sweet.lil.mama:

I'm sorry :( my son had a huge head the first year over 100th percentile til he was about 15 months. He had plagiocephaly and had a helmet for a few months to round his head out. He had an ultrasound, xray and CT scan of his head at 8 months old. He was under anesthesia for the CT scan. It was scary.

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Mommyof2n0308
by Platinum Member on Mar. 5, 2012 at 12:36 AM
That's another thing!!! I don't understand why they won't do an ultrasound!!!!!!!!! He's had an eeg that came back seizure free but it was still abnormal!!


Quoting sweet.lil.mama:

I'm sorry :( my son had a huge head the first year over 100th percentile til he was about 15 months. He had plagiocephaly and had a helmet for a few months to round his head out. He had an ultrasound, xray and CT scan of his head at 8 months old. He was under anesthesia for the CT scan. It was scary.

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Caitlin10081989
by Ruby Member on Mar. 5, 2012 at 4:04 AM

I am sorry that this is happening to him. 

momma2b2008
by on Mar. 5, 2012 at 4:07 AM
I sorry mama! I know its hard. Good luck tomorrow. I will say a prayer for you and your little man! (((hugs)))
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