Anyone have children with Microcephaly? - Mothering Forums

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Old 04-21-2010, 11:40 PM - Thread Starter
 
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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.
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Old 04-22-2010, 11:26 AM
 
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Hi!

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

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-22-2010, 10:28 PM
 
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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:

http://i133.photobucket.com/albums/q...311101303b.jpg
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Old 04-24-2010, 05:37 PM - Thread Starter
 
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Bandgeek,

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.
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Old 05-17-2010, 07:10 AM
 
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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.
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Old 05-28-2010, 10:38 PM
 
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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.
Heather
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Old 06-02-2010, 11:31 PM - Thread Starter
 
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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!
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Old 06-04-2010, 02:48 AM
 
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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?
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Old 06-15-2011, 08:30 AM
 
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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

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Old 07-09-2011, 11:04 PM
 
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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

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Old 07-10-2011, 10:36 AM
 
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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. 

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Old 01-15-2012, 03:45 PM
 
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Yes i have an 18 yr old with severe mircocephaly, where abouts are you?

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Old 01-31-2012, 10:27 PM
 
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 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

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Old 02-28-2012, 01:38 PM
 
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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

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Old 04-04-2012, 02:27 PM
 
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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

 

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Old 07-23-2012, 01:58 AM
 
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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 ? 

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Old 09-16-2012, 02:28 AM
 
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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.
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Old 11-16-2012, 03:54 PM
 
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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.

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Old 02-18-2013, 05:29 AM
 
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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
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Old 08-09-2013, 05:38 PM
 
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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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Old 10-20-2013, 03:30 AM
 
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H
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Originally Posted by Mamasota26 View Post

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.
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Old 10-21-2013, 07:10 AM
 
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Old 04-17-2014, 01:29 PM
 
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Any parents out there who have just had their child diagnosed with Microcephaly are probably pretty scared right about now if you have read anything on the Internet.  I want to be the first parent to write something positive to give some of those scared parents out there hope, here is our story:

Audrey Paige was a full term baby, born at 39 weeks, weighing in at 6lbs 15 oz and 19 inches long.  I had a great pregnancy, was monitored weekly from my high risk doctor and OB/GYN.  That means I had a sonogram every week.  All sonograms and tests were perfect and she got a  9 out of 10 on the APGAR test when she was born.

At 3 months I noticed her head was smaller than some of my friends kids heads so I brought this up to my pediatrician who said her head is 2 standard deviations below the norm, in the bottom 5% and I should see a neurologist for “microcephaly”.  Being the type A personality that I am, I ran home and googled microcephaly and read every story on it, most of the stories being negative and I cried my eyes out, called my husband and told him he had to come home.

We made an appointment with our first neurologist who recommended a CT Scan ASAP, which scared the hell out of me.  We had the CT scan the same day and results came back negative for the Sutures closing and Craniosyntosis.  Me and my husband went out and celebrated our 2nd wedding anniversary that night and were thrilled, we thought that meant she didn’t have microcephaly.

As she turned 4 months I had to get her registered for the Day Care at my office and our pediatrician wrote that she was positive for microcephaly on her medical paperwork.  I didn’t understand and decided to seek out another opinion.  Luckily I work for the greatest company in the world and had my cousin marrying the daughter of the chief pediatric neurologist at a well renowned hospital and they set me up with 2 appointments in Boston to meet with 2 chief Pediatric Neurologist. 

We flew up to Boston for the day and did bloodwork and had the evaluations, both of which recommended an MRI.  Her bloodwork came back negative for any infections that may cause microcephaly.  And one doctor said she had a 1 out of 7 chance to have seizures, cerebral palsy or mental retardation.  So we said to the doctor, “That means she has a 6 out of 7 chance that she doesn’t have any of those!” 

The Boston doctors set me up with the Chief Pediatric Neurologist at a well-known NYC hospital where we had Audrey’s MRI.  Turned out I grew up with the pediatric nurse that was taking care of us that day, (Someone up there is looking down on us for sure!) and she eased my nervousness and I can’t thank her enough for that day. 

The MRI came back saying that she was missing part of her Cerebellum and had a “possible” Dandy Walker Variant.  From past experience, I did NOT look that up online and just asked my doctor what that means.  He said that the missing part of the cerebellum and the microcephaly would have been diagnosed within my pregnancy at 20 weeks.  Remember I had a sonogram a week my whole pregnancy.  I went back to my high risk doctor and OB/GYN who both showed me the Cerebellum in my sonogram pictures.  I even remember saying during one of my visits, “Wow she looks smart already!”  So none of this makes sense to us and we keep pressing for answers.  We then go see a Geneticist and are currently awaiting the results of the genetic blood work.

The only recommendations all 3 of my Chief Neurologists have is for her to start in Early Intervention and that she will “Write her own book”  They said she may not be sitting up by the time she is 1, she may not be crawling by the time she is 2.  Audrey was sitting up at 7 months old, crawling at 13 months old and she is now 16 months old and can stand and is almost there!

Moral of the story is:  Be positive, don’t take no for an answer or be told that your child may or may not be able to do something.  Get your child in Early Intervention as soon as possible, it is a life saver!  Be an activist for your child and you will get the services you need to help your child develop at their own pace.  They will eventually get there and having your child a little developmentally delayed is nothing to be ashamed of.  Also, don’t deny it if there is something “not right”.  You are the Mom and trust your instincts, even if other people “just don’t see it”.  YOU know best, you are the Mom!  Families that are in denial wait too long and get the services later rather than sooner and wish they started earlier.  The sooner the better!  Audrey has been in PT since she was 6 months old, Speech/feeding & OT since she was 11 months old and just started Special Ed services.  All of these wonderful Services are available to your children and should be take advantage of and these teachers are the most loving caring people in the world.  My whole family has learned so much from watching these sessions and working with our daughter.  She is the happiest little girl and works so hard during all of her therapy sessions.  She has come a long way and I cannot wait for the rest of her story, because I know it will be a good one!
Hopefully this article will help some parents know that there is hope and if you are positive and believe in your faith and children, they can do amazing things, the brain is a mysterious organ and the parts that do work, can make up for the ones that are lacking.  So never give up hope, you never know!

Any comments/questions, I am happy to help, if I can make just one mom not cry, I feel like I have done my job.

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Old 04-22-2014, 11:32 AM
 
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My DD is a month old today. Our first child. She was born with brain abnormalities (thin corpus callosum, underdeveloped parietal lobe, less white matter) and her head is small (<5% on the growth charts). The ped neurologist said she's most concerned about her cognitive and gross motor development as she ages; we may start to see more of what's she's capable of as she gets closer to 6mos-1yr. We had a sense something was wrong prenatally, but didn't get the full picture until she had an MRI after birth. (Background: We lost her identical twin at 4 months in utero and the hypothesis is that this affected our daughter's development). Genetic testing came back normal. I've been very depressed these last few weeks (and throughout the pregnancy, actually) which with postpartum hormones and sleep deprivation has been hard, but I'm starting to feel a little better. She's going to develop in her own way. What gets me through the day right now is focused on TODAY and reminding myself that my main job is to love her and try to meet her needs to the best of my ability. It's isolating, though. I feel conflicted when friends offer us their congratulations. For now, she's eating well, gaining weight, and seems content. I can't help but panic when I think about the future at times. I feel sad seeing other mothers and their children walking around town so easily. My husband seems to be in denial; asking when she's going to talk, crawl, walk and I've gently tried to remind him that she's going to be on her own schedule. We've been referred to Early Intervention and plan to do everything we can to help her.

 

I'd appreciate any advice on how to get through these early weeks and months. I'm getting counseling. The counselor mostly talks about having me get out and take walks or do other things for myself. I'm grieving and I wonder if this can be addressed somehow. One thing is for sure, I've stopped googling--that sent me into a tailspin a couple of times. I know there are other special needs parents in our small community; I hope to get connected at some point. I'm glad this forum is here.

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Old 04-22-2014, 04:21 PM
 
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Hi BlueSky! One thing to do is NOT go online and read about it, hopefully my post above gave you some hope! Your child will develop at their own speed and everyone's kid is different but please get her in early intervention ASAP!
Focus on all of the positive things too and talk about it more and share your story you will be surprised how many people you hear at going through similar issues. And think about people out age, when we were little they probably weren't getting MRI's done on their kids as much, we know more now and can address their needs, and early intervention will help, I promise! Think about it when you go on a job interview they don't ask how old were you when you started walking and talking..,.your child will get there at thei own pace and all you can do is love them and get them all the resources they need to reach their potential, and I will keep you in my prayers!
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Old 06-05-2014, 03:23 PM
 
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Question 2 yr old w Microcephally

We just found out today DD is microcephalic... She is almost 2 and we were aware for a while that she has a small head but it was just made clear to us today from her neurologist that microcephaly is an actual serious thing that is causing our dd to have such severe delays. We done lots of genetic testing and so far its all come back normal. We have also done 2 MRIs and a CT which all came back normal as well. Ava (DD) is a happy, loving and playful little girl, however it breaks our hearts that she is almost two and still does not crawl or say any words. She recieves multiple services everyday and has since shes 8 months old. She is definitely progressing, just at her own pace. We try to stay positive but we cant help but to wonder and even be a little afraid of the future. All we want is for DD to be okay. Anyway, my email is [email protected] and my name is Megan. If any moms out there would like to talk and exchange journeys for support Im here...and i could also use all the information and knowledge someone out there who is familiar w microcephally is willing to offer. Good luck to all you moms and your kids, this disorder feels like living in limbo and my heart goes out to all of you.
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