Developmental Delays

My grandson Haydin,  has hydranencephaly.  he is now 7 months old.  he was diagnosed at 2 1/2 months.  His head started growing rapidly in a matter of weeks.  The pediatrician became concerned and sent him for an ultra sound.  US showed water on the brain and he was immediately sent to Nationwide Children's Hospital here in Columbus, Ohio for a CT Scan.  CT confirmed water on the brain (hydrocephalus) and shunt surgery was scheduled for the next morning.  That evening the neuro surgeon (with a terrible bed side manner-might I add) told us that a third of haydin's brain never developed and he would probably never walk or talk or even make it past his first year.  Teen years will probably be the most we have with him.  OF course, we were all devastated.  Since then Haydin has been dealing with reflux and low muscle tone.  We're not sure if he can see, though he can hear.  He's started having little seizures.   He has an MRI coming up next week to check on the brain since the shunt was placed and see if they can see any more brain matter.  EEG with neurologist is this thursday and he will meet with a GI doc at the end of November. He also needs to see a nutritionist because he's not gaining a lot of weight.

 My son and haydin's mommy are 17.  His mommy is such an amazing young woman and loves and cares for our boy wonderfully.  She just graduated from high school early, so she could stay home and care for Haydin.  My son completed early last school year.  

Just wanted to say hello and join in.

Hi Sarah,
Welcome to the board. What a lot to deal with and with his parents so young. Sounds like they are doing a wonderful job though. I hope his situation improves some now that the shunt is in.

My daughter is 4 now which is very hard to believe sometimes. She doesn't have hydrancephaly or a shunt but has many similar issues. She was born with a brain disorder, we have no specific diagnosis still. Seemed healthy at birth, seizures started at 4 mo and delays. She has large amount of white matter loss in her brain. So, she has cortical visual impairment which means the vision problem is neurologic, her eyes are healthy. She has excellent hearing. Seizures and gi issues are the main medical things. Extremely poor muscle tone and development. Its a lot to deal with for anyone. I hope you and maybe your daughter in law too will find support here. We are glad to have you here.

Is he getting therapy to help his development? I hope the mri goes well and the eeg. Please keep us posted and if you have any seizure questions please let me know. We've been through almost every med made!

kari

hello Kari,

It almost sounds like your daughter has hydranencephaly.  Check out their website www.hydranencephaly.com.  There is so much information on this website.

We think Haydin is having seizures.  He will roll his eyes to the left and then back in his head and then turn his head to the left and back like he's trying to look behind him.  he will do it over and over again and then stop.

Haydin has started physical therapy.  his arms he keeps close and his legs are usually straight out.  They're trying to loosen him up.

I guess we will find out more today after the neuro appointment.

That looks like a great site. Well, Kristin definitely doesn't have that but any kind of severe neurologic disorder gives you somewhat similar symptoms. They think hers is likely a genetic deletion of a key gene in brain development.
It definitely sounds to me like he's having seizures. I'm sorry to hear that. They are an awful thing for anyone to have to go through. Hope the neurologist gives you some good info. Please let me know what he tells you.
Kristin has always been floppy through her trunk but kept her arms tight and close to her chest. She doesn't use her legs much. She likes to extend her body so her toes are pointed and back is arched with her head thrown back. I'll try to attach a pic for you of her crazy positions. The pic in the siggie is a montage I made when she was turning 3 if you're interested.

We got a lot of services when she was younger through early intervention. She had PT, OT, feeding therapy, vision and around 1 they started some kind of early education service once a month. Take advantage of whats out there but don't kill yourselves overdoing it. As he gets older aquatic therapy is a great thing too.

Let me know how the appt goes.
Kari

Kristin 7/08

Hi Kari,

Kristin is adorable! How old is she? Her brother seems to adore her.

Ok, EEG showed that the right front of the brain is in constant activity and he's having constant seizures, even though some we're not seeing.  Dr. wants to start him in Kepra.  He will have a follow up EEG in 4 weeks.  The MRI showed about 80% of his brain is missing.  The prognosis is a couple of years and teen years if we're lucky.  He is being sent to check on hearing, sight and have a swallow study done.  I don't think he'll ever be able to walk or talk after seeing the MRI.