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Anyone have children with Microcephaly?

post #1 of 23
Thread Starter 
My son has microcephaly from some the damage to his brain. I'm curious to know if anyone else has a child with microcephaly as well and how it has affected your children? My son is a chubby baby and has no feeding issues (other than he loves to eat!). Most people can't even tell our son has a smaller head, but i notice the difference.
post #2 of 23

No microcephaly here (in fact, almost the opposite, my kids all have big heads!) but I just wanted to say hi and keep your thread up so others will see it
post #3 of 23
My DD has microcephaly from a brain injury as well. I know your son is young and you don't really know what to expect. It's scary to see their heads drop down the charts, but try not to worry about his head growth. That alone won't indicate what he will or won't be able to do later.

For my DD, her brain injury was significant. She cannot swallow at all, even her own secretions. She's 2 1/2 and cannot lift her head. She has about 15 diagnoses in addition to her CP as a direct result of her brain injury. Yet her head is almost proportionate to her body and perfectly round. Lots of kids with brain injuries do way more than her, yet have teeny, pear-shaped heads and/or misshapen heads. All you can do is watch and wait and see what he does!

Here's a pic of my DD:

post #4 of 23
Thread Starter 

Your daughter is beautiful!
Thanks for sharing with me about her. My son we are not yet sure just how significant the brain injury is. I can tell you as a 5 month old he can already lift his head up, he moves around quite a bit. He has hypertonia (overactive muscle tone) and he is a hearty eater. No swallowing problems or eating problems of any kind so far. So everything is kind of up in the air so far. I don't know how he will be mentally, or if he will be able to walk when he gets older or what....It is so hard not knowing!!! How long did it take until you started really seeing any problems with your daughter? I say that because for all intents and purposes my son seems fairly normal for a 4 month old, aside from the hypertonia and occassional eye contact problems.
post #5 of 23
hi my son was born with microcephaly we didnt know till he was 2 months old and he is 8 now i am looking for other parents that have children with it. My son can not walk or talk and he got epilipsy at 18 months.
post #6 of 23

My daughter with Microcephaly

My Daughter has also had Microcephaly since she was born. We actually first noticed it during my Ultrasound around 6 months. She is now 18 months and can not crawl or stand or talk. She is a very happy girl and therapy seems to be improving things but whe has the development of about a 5 month old which makes since because her head size is also the size of a average 5 month old.
Im very excited because next month we are attend the Children with Microcephaly Convention thats taking place in Scottsdale Arizona June 16- 20th. Im looking forward to meeting other parents with children with microcephaly. Im located in Missouri where are you living? I would love to hear more about your situation with your son. Feel free to write back.
post #7 of 23
Thread Starter 
Sorry I haven't responded before. Wow, I wish there were a convention here for kids with microcephaly. Anyway to update on my situation, my son is staying consistently at the 10% range for head circumference. His doctors seem to be happy with this. They said that since he is staying consistent it worries them less. They would be more worried if he dropped off the growth charts completely. So we are still taking it day by day. He is doing everything he is supposed to so far. He can hold is head up really well. He has even started to push himself a little on his stomach like he is trying to crawl. He rolls over, he kicks his legs constantly. He smiles, laughs, and is just an all around happy baby. He just started eating regular baby food today actually (he is 6 months old). I gave him peas and he ate them all and seemed to like it!
post #8 of 23
This is my first post on this site, but I had to comment on this thread! My 6.5 year old has microcephaly amongst other things (epilepsy, CP, etc). We are going to the Micro convention this month as well! I am so excited, I went last year and loved it. Do you have a website MarleysMom?
post #9 of 23

hi i just wanted to tell u about my son he 4months old an has hypertonia an microcephalus was also told his coprus callosum may be to thin havent got all results of his mri yet. but like yours he is very happy ,babbles, kicks, is now laying on his stomah holding head up . keeps his head up all time. an he loves to stand up with us holding him of course. i just cant belive there something wrong with our son an even his ped said she dont see what neurologist is seeing. he 14lbs which im told is real weight took him to child intervention an the screening was all good grades except for his motor skills. he still has not rolled over or has problems grabbing things . if anyone can give me more info all his diagnosis would be very appreciated we just found 2 days ago

post #10 of 23

hi i am just asking if any of ur children are rubbing there heads mine is but dont know why i am just wanting to know if there is something wrong with him

post #11 of 23

My 6 year old has microcephaly.  His microcephaly is because he has two genetic syndromes both of which cause the brain to form smaller and stay smaller.  His brain is actually structurally normal for the most part just small.  He has moderate to severe global developmental delays in all areas of development and multiple medical issues and hypotonic muscles. 

post #12 of 23

Yes i have an 18 yr old with severe mircocephaly, where abouts are you?

post #13 of 23

 Hi my name is jane and i have a 4 year son that has mirco not many groups for us with childern with this condition im here if you need to talk more.wave.gif

post #14 of 23

Hi just came across this post while googling, my daughter has microcephaly and thin corpus callosum, shes slightly behind with speech for a three year old but other than that shes fine, co-ordination can be a bit wobbly from time to time also

post #15 of 23

our son was diagnosed today with microcephaly . he,s always been behind in his development and constantly getting infections .but it was a relief to get a diagnosis and it was me been over protective  of him


post #16 of 23

so my nephew has microcephaly and im not to sure how to approach my sister. first off he loves me and i couldnt imagine life with out him. he is 3 he moves around normally just very little speech 5 words at the most he likes playing with his hands alot. and pulling hair.i dont know how to ask my sister that i dont know how to treat him though im kind of treating him as if he were autistic. is there things i should do? im just lost i also dont feel like she's treating him right either. i hate so say it but i feel like shes not treating him like he's important she doesnt try to teach him anything ? 

post #17 of 23
Hi there, I just came across this post. My daughter has just turned 4 years old and has microcephaly. Things have been emotionally hard, however I've seen her come on leaps and bounds. She's a very sociable child, she understands more then she speaks, however does say about 15 words but these are very inconsistent. She crawled at 18 months and now cruises around furniture and has taken more than 6 independent steps. Right now she's so concentrating on walking that I'm told her speech will follow after this. She is so determined and I learn from her everyday, she's an inspiration. Doctors have not found any reasons why she has it. All genetics as well as chromosomes are all normal, I had a normal birth, never smoked or drank alcohol and always took my vitamins throughout pregnancy. Right now I look at it as this is how she was meant to be born. She's very independent and Mobile. I still talk to her like normal and she responds in her own way, she's very good with her non verbals and this is how we communicate, she nods and shakes her head for yes and no and her sense of humour is very on point. I was told by doctors basically that she may never walk or talk and some may take that information and just give up, but I'm very determined like my daughter and work hard with her, we do other unconventional things to help her that doctors raise their eyebrows up at but for me I will try anything to help her gain somewhat a "normal" (hate that word) quality of life. My daughters head when she was born was only 31cm and the MRI shows that her brain is fully formed but just smaller, her head is now 43cm so is growing at her own rate.
There doesn't seem to be anything for parents in the uk as speaking to share experiences would help. Microcephaly has different scales just like autism so each child is different, and it depends whether their brain has stopped growing or continues to grow, it also depends on whether it's caused by chromosome abnormalities as well as other associated conditions, fortunately for my daughter this is not the case. She will do things when she is ready and not before.
post #18 of 23

hi my daughter has microcephaly, there is so little support in uk. my daughter was diagnosed when she was nearly 2 years old, she is 4 now, she had a mri scan witch showed a shrinkaged in cellerbela, she is walking and talking but does have difficultes in these areas and get tired at times but never gives up, and is always smilling and happy.

post #19 of 23
Hey my 4mth daughter has microcephaly and she alot of other complications dat came with it it is a struggle for me cuz n her cuz shes on alot medication n i dnt really have the money to pay for it but shes is doing gud for now she has been in the hospital almost everday since shes been born but i try to stay strong n never lose hope her faith n da man up above n know dat he will make everything okay
post #20 of 23

My son might possibly has Microcephaly. He has been assessed and determined delayed but not diagnosed. How did you all find out if later, that they had it? My son is 21 months and is delayed in speech, that of a 10 month old. and around 17/18 months in other areas. He will hopefully be having an MRI done. 

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