Anyone's child had microcephaly(small head size way below

Hi
I am freaking out. my dd has been diagnosed with microcephaly when she was 4 months. Her head size was increasing by 1/4 of an inch monthly until abt 6 weeks ago. She is 9months old, and her head size is 16 inches, (which is average for a 3 month old baby) My Dr sent me to do genetics testing and MRI.
During MRI she needs to get anesthesia. She is too small for all this.
Both of my older daughters are fine and normal B'H. This dd while I was pregnant I had IUGR (intra uterine growth restriction) she was born 4lb and I am wondering if that contributed to microcephaly.

If anyone knows about any of this or have heard any similar situations please reply
thank you
and May Hashem bless us all.

Platinum Member Joined: Jun 30 2009 Posts: 8228

I do not have experience with this- just want to wish you and your baby Hatzlacha!

Gold Member Joined: Jul 27 2007 Posts: 1676

I know of a family who has a child with microcephaly; in their case it is genetic and she is pretty bad off Sad

. From what I understand there is a very broad range. Hugs to you and may you hear good things.

My 2 year old has microcephaly.
She had her first mri at 9 monthes and just had her second now. They could not determine the cause from the mri.
She is delayed but not majorly. I think now she's at a 15- 18 month level.

She was born normal size but stopped growing shortly after. I think her head measures 42.5cm or 43.5 cm (I can't remember exactly). She was born at 7 lbs but now at 26 monthes she weighs 22 lbs and is tiny.

If you have any questions, feel free to ask. I'm sorry you're also in this situation Sad

Platinum Member Joined: Aug 01 2005 Posts: 16880

How delayed is she?
There are several mothers in my special needs support group with kids with microcephaly. Their abilities range from severely disabled to moderately disabled to higher functioning than my autistic son (but still delayed). I can put you in touch with them if you need support, though I found with my own situation (autism) that sometimes talking to parents of kids who are more delayed than your own can be depressing.
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http://www.autism-parenting.com

Platinum Member Joined: Feb 20 2009 Posts: 7591

IUGR and microcephaly are often associated. It sounds like your doctor is on the right track to determining what's causing it. I know it's scary to be dealing with this, but having a diagnosis can often help guide treatment and prevention.

Platinum Member Joined: Jun 22 2008 Posts: 6419

OP here

to the amother who wrote this:
My 2 year old has microcephaly.
She had her first mri at 9 monthes and just had her second now. They could not determine the cause from the mri.
She is delayed but not majorly. I think now she's at a 15- 18 month level.

She was born normal size but stopped growing shortly after. I think her head measures 42.5cm or 43.5 cm (I can't remember exactly). She was born at 7 lbs but now at 26 monthes she weighs 22 lbs and is tiny.

If you have any questions, feel free to ask. I'm sorry you're also in this situation "

Can you please tell which hospital in NYC (if you did MRI in NYC) did you go to?
Also was she tested by genetics Dr?

Thank you

It was done the first time in Robert Wood Johnson in NJ and one a month ago was done in CHOP in Philadelphia.

The last mri in CHOP was looked over by a geneticist but they couldn't figure anything out. She also had testing done in CHOP to see if the cause was metabolic because then they would have been able to do something but everything came back normal.

They have no idea why Sad

It's horrible. I'm sorry you're going through this too.

Senior Member Joined: Jul 09 2006 Posts: 207

Im so sorry that your have to go thru all this. As for the anesthesia for the mri - itll make her comforrable and she wont remember a thing. Good luck!