Join Date: Sep 2005
Location: New York
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Originally Posted by TiaLC
Hi I'm new to this site,
I have 4 children, the older three are girls and are developing normally.
My youngest is Dominic and is 6 months old, he has microcephaly and cranisostenosis. We are not sure if surgery is required yet or not to open his cranial suture that has fused. His head measure dramatically small. Since it could be caused by genetic syndromes he is going to have testing in that area as well. He also has strabismus, reflux for which he takes prilosec, and is tongue tied. He has some mild abnormalities of his jaw, and toes. His appt with a neurologist and pediactric neuro surgeon is next Monday. Waiting for answers has been tough.
Originally Posted by kalynnsmom
Hi Carolynn. I realize that this is already a year old, but I hope you see this post. I'm glad to have found your post!
My daughter Kalynn, who is 3, also has NF. She has many cafe au lait's, inguinal freckling. She also has bilateral optic nerve gliomas. She also has a plexiform fibroma underneath her tongue that causes chewing and articulation problems.
She is a little behind on gross and fine motor skills.
She is also at risk for ADHD per the neuropsychologist. She will be starting school next week for the speech program.
Originally Posted by indiegirl
My beautiful girls are both special...in many ways. Talking about their special needs, Violet is almost 4 (I can't believe it!) and has a moderate hearing loss in both ears (sensorinerual) and subsequent speech delay. A year ago she said about 30 words. Today she has well over 500 and has started talking in 4-5 word phrases. She is still very far behind her peers but is so socially attunded that most of the time it doesn't matter-she gets her point across. She is still very dreamy and has not lost any sort of her childish innocence--I don't think she knows that the world is any place but lovely and good. I like that, for now. My heart is so full for my daughter and her struggles, I often lay awake thinking about the choices we make and worry about her future. I know she'll be fine, I just worry sometimes.
And little Zoe (16 mo) has a rare form of congenital nystagmus. Nystagmus is a neurological condition that effects the eyes. Her eyes move in a pendular motion when trying to fix on anythign more than 2-3 feet away. The condition can be pretty devestating for many reasons (loss of balance, severe vision loss, brain tumors) but our Zoe seems to have a rare, benign form of the disorder. Our neurologist says that Zoe doesn't see the motion in her eyes, that she has most likely adapted to it. She has no motor issues (walked at 10 mo) or balance issues and seems unaffected by it. It can self-correct or lessen by the age of 5 or 6 and we've noticed significant correction in the last year or so, so we will see. Nystagmus can be pretty terrible as far as social interactions go--people are cruel--but Zoe's focal point (it has to do with the way a person with Nystagmus holds their head to lessen the movement of their eyes) is not to the extreme side but just with her chin lowered slightly. It looks very cute, actually.
Violet was in intensive speech therapy (assesed at nearly 3 at an 18 mo old level) for six months and then tested out. She still goes to speech at her language preschool 2x a week. We also have her in a Waldorf preschool. We chose not to send her to the deaf/hh school because she is so verbal and has so much hearing that we wanted to focus on language development. I think I'd like to do more sign, so I need to take some classes.
Originally Posted by CarolynnMarilynn
Hi Kalynnsmom (and all the others in this thread!)
Kai is seven now and doing well. He is seeing an occupational therapist once a week at a local hospital and it has been fabulous! He is really making strides in his fine motor skills. He also sees a school OT twice per month, but has only had his first appt. Kai has lots of cafe au lait spots, inguinal freckling (and other places), one optic nerve glioma, and two pleixform fibromas (one on his buttock that is growing, and one on his jaw line that is small and unnoticeable). He has lots of little fibomas, mostly unnoticeable at this stage, except one that is distorting one of his fingers. He also has some large ones on his scrotum/perineum area that are bothersome and tender. We haven't had him see a neuropsychologist yet. He seems to be doing pretty ok, but I suspect some ADHD. In any case I don't think we'd treat it much, just as an aspect of his individuality.
Glad to see your post!
Our one problem is that Kai doesn't know he has NF. We figured he'd ask at some point why he sees doctors and so on, but he hasn't. So, our child-led discussion hasn't happened. We are wondering if we should proactively bring it up. Part of the hesitancy is that we don't feel like we are at a place where we can talk about it in the confident and matter-of-a-fact way he deserves; we're afraid we'll break down. Lame, huh?
Originally Posted by HappyMomAnna
My oldest child is now 22 at the age of 9 he had a sledding accident and his left leg was severed and reattached The good thing is that he has a leg and I cried everytime I watched him march in the High School Band.
My oldest Daughter (21) has OCD issues and as a little one was speech delayed and suffered from hearing loss.
My youngest daughter might be 7 or as old as 9 and she became my daughter by adoption.... She attends Day Treatment and Her Dx includes: RAD (Reactive Attachment Disorder) Possible Bipolar, PTSD, ODD and pre-verbal sexual abuse..... We are not sure of fetal alcohol exposure or drug affects. She was born in the woods and lived her first four years of life in a shopping cart....
My Youngest son is 3 and the biological sibling of my youngest daughter--His birth saved both of their lives as birthmom got scared and decided to give birth to him in the hospital. He was born addicted to Herion and had EVERY other drug in his system. He remained in the hospital for several weeks and His birthmother was given 6 weeks to parent when he was released. After testing positive over and over while breast feeding the children were taken into foster care. He has had surgrey on his belly button twice because 'someone' picked at it after his birth. My youngest little guy is Dx, Sensory Disorders, Expressive Speech Delays, and overall 10 months developmentally delayed.