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
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:
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.
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.
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
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.
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
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 ?
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.
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.
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.
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.
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.
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.
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!
|10 members and 11,559 guests|
|BirthFree , Elvia Adanarhi , JMK74 , joandsarah77 , katelove , moominmamma , philomom , stellanyc|
|Most users ever online was 449,755, 06-25-2014 at 01:21 PM.|