Microcephaly

[whoops]

Hi,

I'm wondering if anyone here has a child with microcephaly and what it means for them?

My Lily is 5 months old and is being seen by a team of doctors in our maternity hospital who are very concerned about her head size. She's about four points below the standard deviation atm, however her head is growing - it's just on a much lower curve.

This was picked up on first when I was about 6 months pregnant with her - they've ran all kinds of tests (ultrasounds, bloodwork, xrays etc) but so far everything has come back normal. We've a load more tests scheduled and I've to bring her to a neurologist next month.

So far, her development is on track - she's social, she's active, she's meeting all her milestones as she should be, which I understand is a very good sign. She's very strong and has had great head control since birth, which the doctor has just said can be a sign of high muscle tone, something I'd kind of suspected myself.

But anyway, I'm starting to ramble a bit. Just wonder if anyone here is or has been in the same boat?

It's weird - I'm kind of in limbo because there may be a problem but at the same time, she might just have a ridiculously small head.

 

[fairywings]

My son had a smal head which was behind in growth but was never told it was microcephaly. I think the degree of what it brings is varied with every case so even if one case was severe there are cases that are less severe and it it is definatley good that she is reaching all her milestones.

Has she had seizures? If not that is another good sign. Sorry I can't be of more help - like I say my son was never diagnosed with that he had something else but a friend of mines son had it ( along with the same illness my son had). Sorry now I am rammbling!

Hope someone can answer better. xxx

 

[fairywings]

Oh and I mean this in the nicest possible way but i hope she does just have a small head.

 

[whoops]

I understand what you mean and I hope the same!

She hasn't had seizures - there's actually nothing unusual apart from the high muscle tone. The doctors say that it's about now they'd start to look for developmental delays and so far, she's on track. They are sending a request for Early Intervention though to keep an eye on her.

I notice your ticker, hun - I'm very sorry for your loss

 

[BrandiCanucks]

Hi whoops.

My oldest daughter, Zoe, is 4 and a half years old and she was diagnosed with microcephaly at 26 months old. Her head circumference was 44cm at diagnosis, while her then 6 month old brother's was 44.5cm. Since diagnosis, her head has grown .3cm and is the average size of a 14 month old. Her head circumference is -3.7 standard deviations below normal.

An MRI has revealed decreased white matter, chromosome testing has revealed a chromosome translocation, she also has complex partial epilepsy and her vision is starting to go. We have been unable to uncover what gene is causing her microcephaly, so we don't know what her whole condition is.

Microcephaly is a symptom of over 200 conditions, and not a diagnosis in itself, but a symptom of a condition. Zoe also developed normally until she was around 9 months when her development was still on track, but landed on the late end of normal. Now at 4 years old, she is approximately 2.5 years behind developmentally. Her seizures also didn't start until this past March.

Have you connected with the Foundation for Children with Microcephaly yet? www.childrenwithmicro.org is the website.

If you want to check out Zoe's website, it's www.zoemeszaros.com

Also, if you have Facebook, feel free to add me (Brandi Meszaros - My pic is of my youngest daughter smiling, the same as in my ticker). There's a private group by invite only for families with children with any kind of cephaly, microcephaly included. I have no problem adding you.

If you have any questions, feel free to ask!!

 

[whoops]

Thanks, Brandi.

I'll add you now. It will be good to talk to people who are dealing with this too.

We've an MRI booked for the start of August and she's to see a neurologist then as well, so hopefully they'll be able to narrow down a diagnosis. Because it's the not knowing that's the worst part.

 

[BrandiCanucks]

It does get easier, I must admit. It was very hard in the beginning when her geneticists both told us it was unlikely we would ever find out what her condition is, but over the years we've come to accept that and just want to watch her grow and develop.

I won't lie to you, since micro is a symptom of so many conditions, you might not find out what it is either. Not to scare you or upset you, and I hope I didn't. There are many families whose children are well into their 20's with micro and have had every test available and they still can't figure out what the condition is.

I look forward to speaking with you!

 

[StaceyR]

I'm so happy to find this thread. My 15 month old baby was diagnosed with microcephaly when she was 9 monthes.
Her head hasnt grown since March not that it was growing well before then...
I'm having a hard time finding information about it. Online it seems that there are only very severe cases.

My baby is very small, she has a bit of developmental delays and has pretty bad balance but she's walking.

This came out of the blue for us... I have a very healthy 3 year old son. I just feel so bad for my baby

 

[BrandiCanucks]

Stacey,

If you have Facebook, feel free to add me. I have 4 years experience with microcephaly and can tell you it's NOT a death sentence, like Google says it is. Brandi Meszaros. I'm the only one.

 

[whoops]

I'm so happy to find this thread. My 15 month old baby was diagnosed with microcephaly when she was 9 monthes.
Her head hasnt grown since March not that it was growing well before then...
I'm having a hard time finding information about it. Online it seems that there are only very severe cases.

My baby is very small, she has a bit of developmental delays and has pretty bad balance but she's walking.

This came out of the blue for us... I have a very healthy 3 year old son. I just feel so bad for my baby

The information online is quite scary, I found. I'm avoiding Googling anything to do with microcephaly now and just taking information from support groups and Lily's doctors.

 

[BrandiCanucks]

That's the best thing to do, whoops. Special needs kids and adults NEVER follow all symptoms and the straight line of a diagnosis. Each one is unique and unpredictable. Goole sucks for searching special needs advice.

 

[fairywings]

I think that is the best thing to do. With my sons condition because it was so rare I had no choice but to google but found some parent run sites on it, which confirmed the worst prognosis but were also a help. He is actually on one of the sites now, which I never thought he would be.

Maybe there are some parent-run sites you could look at? That way you would get a handle on what other mums live with, but won't be as scary as google!

 

[fairywings]

Oh you are on support groups! Oops I did read that but left my head, lol. they are the best and you have to take each day as it comes. xxx