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Thread: Arrested hydrocephalus (hydro) and abnormal head growth in my 1 year old

  1. #1

    Default Arrested hydrocephalus (hydro) and abnormal head growth in my 1 year old

    I just joined this site so please excuse me if I don't know what I'm doing... Enlarged ventricles (twice the size they should be) noted at an MRI scan taken due to exertional headaches at 38 years old (10 years ago) which put me in bed for 3 months... No hydro symptoms before and none in the last 10 years... My neurosurgeon and neurologist said at the time of the exertional headaches that the size of my ventricles was normal for me and to forget about it... MRI'd my brain regularly for 12 months at the time and no change in size of ventricles... Happily getting on with life (perhaps in ignorant bliss)... This week however my 4th child Louis now 1 year old was noted to have a head growth at the 97 percentile which for the first 3 months of his life was at the 25th percentile. Height and weigh are both tracking at the 50th percentile. Off to see a paediatrician so wanted to know what I should be asking.... Are there hereditary factors to hydro?... Should I go back and see my neurosurgeon and/or neurologist?... I'm hoping someone can help me... Thanks Shayno

  2. #2


    Hey, Shano. :)

    I am a 46 yo mom who's always had hydro, and...this sounds a bit like my experience. My son is now 18. At birth, he had a normal-sized head, but as time went on through his first year, his head ballooned in size, and I couldn't even get his ped to measure him, even though they were aware of my history!

    I watched him closely, and over time, he grew into it well, but I made a casual comment about it some years later to another doctor, who ordered an MRI...and Drew's Chiari Malformation was found.

    The truth is that hydro is only rarely genetic, but I do think my hydro and his Chiari are connected somehow. He's also autistic and just graduated from high school Wednesday night!!

    If you're really concerned, I would ask for an MRI. To this day, we don't know if his Chiari had anything to do with the explosive head growth he had, and the Chiari has never required surgery, although we continue to watch it carefully.

    I hope this is of some help to you.

    LIZARD :)
    LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 32 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 21, successful ablation 4/18/07 for WPW; and Andrew, 18 (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 22 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07 :(

  3. #3
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Alberta Canada, with a Beatiful view of the Rockies


    Hi, as with any concerns about children, if it concerns you get it checked out. It's better to say "well I just wanted to make sure "and get a negative result than to say " I should have" and find out another way that something was wrong... If I were the mother I would get my baby looked at. Sometimes it takes a lot of effort on you part to get attention to a possible problem but your piece of mind either way will be the best result. If he does have a problem it will be taken care of and if he doesn't then you can rest knowing you did what was best for your baby.... Dagaz
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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