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Myths about Hydranencephaly

Dear Doctor Letter

Hydranencephaly Survey 2006

Results

We have recently downloaded results from the suvey that has been conducted online for 1 year. The following are preliminary results only and are offered here as an example of what we're learning about our children. This "research" is not done in a scientific manner. I will post new results as I get them.

Hydrocephalus: 84% of the children have it

83% of those children have shunts

Seizures: 80% have them

Ketogenic diet: out of the 5 who tried it, it worked for 4

Only 30% of the children who have seizures, have had their seizures picked up on a EEG

61% have "absences": this is mentioned in Bjorn's article as proof that our kids are conscious-they couldn't become unresponsive if they weren't conscious

Other
68% of the children have problems regulating their temps, Of these 60% are most likely to have a low temp.

14% have Diabetes Insipidus (not as many as I'd expected)

Life span
Of the children who had died 69% did so after their first birthday, of those still living 62% are over the age of 1

Child's mood: Happy 61%

Mood during first year: irritable 60% (so there's hope for those who have babies that are always crying)

Physical
Child's tone (how floppy or tight they are):
Tight (high tone): 48%,
Floppy (low tone): 7%,
both floppy and tight: 44%

Clonus (tremor in the leg not related to a seizure)
Yes: 62%
No:38%

Hips:
Subluxed (partly out): 42%
Of those: 22.22% were the left hip, 14% right hip, 64% had both subluxed
Dislocated: 29%
of those: 31% were the left hip, 18% right, 50% had both dislocated
Hip Surgery: 21%
Surgeries: 80% had soft tissue (adductor tendon release)
                   53% had hip reconstruction surgeries (osteotomies)
                    6% (1 person): had a femoral resection (head of femur removed)
of those who have had surgery: 46% had one hip surgery
                                                      26% had 2
                                                      26% had 3

Spine:
39% have scoliosis
19% have kyphosis (spine curved forward)
2 children (2%) have had surgery for scoliosis

19% of the children have had botox injections

If yes, where (what part of the body) and how many times?

	Answer
11	so far 1x only (bilateral gastrocs, right posterior tibialis, left & right elbow flexors)
13	hands, elbows, hamstrings
16	Is having them in a months time
17	biceps and abductors
20	Legs twice, arms
23	knees, arms, legs, feet -5 times
30	shoulders, elbows, thumbs & fingers--3 or 4 times
36	shoulders arms hands and feet
37	arms, wrists, hamstrings twice
41	hands and elbows
42	Adductors every 6 months
43	behind his knees his hamstrings
45	But they are planned in the future
47	saliva glands various times (about 3)
56	thumb spaces, knees, elbows
71	thighs once
81	twice in groin
86	wrists, legs

Of those who had botox, they worked in 88% of the children

60% are aware of objects

90% know family members

88% know the difference between family and strangers

76% indicate that they recognize someone or something

85% show that they recognize certain voices

89% can be comforted more by one person than another

Is your child aware of his/her surroundings?
Yes: 80%
No: 20%

	Shows awareness of surroundings by:	Age started	Changed ?	how
1	looking around, listening to what is going on	about 5 years	Yes	noticed more and more
2	no
3	smiles when approached, gets startled, wants to be picked up, fusses if left alone, turn towards sounds	from birth	Yes	became calmer, likes to alone more, entertains herself better
4	laughs at stimuli	1 year	Yes	more aware of surroundings
5	smiles and laughs	12 months	Yes	progressing beyond anything we were told he would ever do!
6	looking, start or stop crying	birth	Yes	become more prominent and consistent, responds to a larger variety of things
7	smiles, looks at you, turns head toward you, listens intently	as an infant	Yes	more aware as got older
8	No
9	e.g. .he seems to be more relaxed whenever he comes "home" after being out. He'll look around the room and start smiling (as if to say he's happy to be home).	n/a	n/a	n//a
10	a. attitude, facial expression, smiles b. facial expression/ movement	a.. n/a b. 3 months	a. n/a b. Yes	a. n/a b. more aware
11	by showing different emotions depending on where he is.		No
12	no
13	looks to people talking to her, looks to TV or sounds, coos, vocalizes	4 months	Yes	she has gotten more aware as seizures have come under control
14	looks at person in room	1 (?yr or mo)	no
15	no
16	Eyes get big, smiles, makes sounds, turns to sounds	1 (?yr or mo)	Yes	better as he has gotten older. Differs with health
17	smiling . responding with his eyes	9 months	Yes	more responsive
18	no
19	She has wonderful hearing and recognizes different people and places	3mos.	Yes	She has gotten better and better at recognizing that certain sounds mean things
20	Listens, sometimes looks, has mood changes	birth	No
21	no
22	smiles coos	4months
23	facial expression, smile, laugh	1 year	Yes	more aware, interactive all the time
24	Eye movement and making sounds	15 months	No
25	Moves towards voice, or listens quietly	Right away to mom and dad
26	turning toward noise, startles	8m
27	bright eyes, smile, moves head from side to side	6 months	Yes	more aware
28	is happiest at home - as soon as we get there. looks at and calms only for familiar people	3 months old	No
29	n/a
30	seems comfortable & relaxed, looks around. But if he's unsure of where he is, he pulls his arms up, tenses up, may look down so much so that people think he's asleep (hoods his eyes)	he's always done this	Yes	He's shown more awareness over the past year
31	No
32	a. n/a b. n/a	a. n/a b. n/a	a. n/a b. n/a	a. n/a b. n/a
33	looks at things	6 months	No
34		from birth	Yes	diminished
35	reacts to loud noise, sunlight, touch	always	No
36	smiles, laughs, turns head, responses to social interactions	6mths?	Yes	was very irritable till started Tegretol
37	blinks, smiles, laughs, responses to stimuli laughs, giggles, turns head	a. birth b.most always	a. No b. Yes	when over sedated by seizure meds
38	n/a
39	No no
40	looks around, makes noises, waves arms or legs	since birth showed some signs of awareness
41	when he is someplace strange, he keeps his eyes downcast. people always think he's asleep when we have him in public	1 year	Yes	he has grown more aware of different places and definitely different voices
42	No
43	a. n/a b. he makes sounds and smiles	a. n/a b. about 2/12	a. n/a b. No	a. n/a
44	listens and moves his head and he jabbers		No
45	She can hear very well and knows voices. She will 'holler' at us	birth	Yes	She is becoming more alert
46	Recognition of familiar by smiles	4-6 weeks	No
47	laughs or cries, tilts head towards sounds	very young	Yes	when ill, he was less responsive
48	no
49	n/a		Yes	more awareness
50	n/a
51	n/a
52	Smiles, kicks oohs and aahs interacts or cries	birth	Yes	improved especially likes swimming and can say three word sounds for ma - mama gaa- for grandad - jaaa for jamie also "leaps" out of arms to person she wants to go to
53	(yes) n/a
54	Very alert, knows her own home, mommy, nurse, etc.	3 months	Yes	much more awareness of surroundings
55	facial, smile, eyes searching although he's cortically blind	3 months	No
56	Smiles, coos, happy, "talkative"	12 months	Yes	She has become more familiar with her "home" surroundings
57	eyes & smile or cry	1 year