Results of my Craniosynostosis survey #2 with 315 respsones

Craniosynostosis Survey #2 from 315 families

The results of my first survey with 503 responses is listed in earlier entries or click Here

THESE ARE THE EXACT RESPONSES OF MY SURVEY. THE FIRST  NUMBER WILL BE THE AMOUNT OF PEOPLE FOLLOWED BY THE PERCENTAGE. 

My child is
Boy
206 65.61%
Girl
100 31.85%
I have more than 1 cranio child.
8 2.55%

What type of craniosynostosis does your child have?
Sagittal
135 42.86%
Metopic
88 27.94%
Left Lambdoid
9 2.86%
Right lambdoid
13 4.13%
Left Coronal
19 6.03%
Right Coronal
20 6.35%
Bicoronal
21 6.67%
All sutures closed
7 2.22%
Multiple sutures closed. Please specify which ones below
20 6.35%
Other (Please Specify)
22 6.98%
bilambdoidal sagittal sutures
Sagittal and Bicoronal
sagittal, metopic, right coronal
Sagittal and Bi-Lateral Lambdoid
Metopic, saggital, and bicoronal
metopic sagittal both coronals
Originally just left coronal, now left, right coronal and saggital.
metopic, sagittal
Sagittal and metopic
metopic with mild trig, and sagittal
they both have Saethre-chotzen syndrome and youngest has pan synastosis
Metopic/partial Sagittal
bicoronal and sagittal
Left coronal and left lambdoid
sagittal Lamboid and coronal
daughter&grandaughter has crouzon's
Metopic, coronal
metopic, sagittal and both coronals
Sagittal and Metopic


Where was your child born? Or where was the majority of the pregnancy spent? (if your child was not born in the united states you may
enter the country and region in the other section)
Alabama
3 0.96%
Alaska
Alaska
1 0.32%
Arizona
2 0.64%
Arkansas
3 0.96%
California
15 4.81%
Colorado
2 0.64%
Connecticut
4 1.28%
Delaware
0 0%
Florida
15 4.81%
Georgia
8 2.56%
Hawaii
1 0.32%
Idaho
1 0.32%
Illinois
14 4.49%
Indiana
2 0.64%
Iowa
7 2.24%
Kansas
1 0.32%
Kentucky
2 0.64%
Louisiana
4 1.28%
Maine
0 0%
Maryland
2 0.64%
Massachusetts
3 0.96%
Michigan
7 2.24%
Minnesota
9 2.88%
Mississippi
1 0.32%
Missouri
9 2.88%
Montana
3 0.96%
Nebraska
4 1.28%
Nevada
3 0.96%
New Hampshire
2 0.64%
New Jersey
8 2.56%
New Mexico
1 0.32%
New York
11 3.53%
North Carolina
10 3.21%
North Dakota
2 0.64%
Ohio
9 2.88%
Oklahoma
6 1.92%
6 1.92%
Oregon
5 1.6%
Pennsylvania
14 4.49%
Rhode Island
0 0%
South Carolina
4 1.28%
South Dakota
0 0%
Tennessee
2 0.64%
Texas
14 4.49%
Utah
5 1.6%
Vermont
0 0%
Virginia
4 1.28%
Washington
6 1.92%
West Virginia
0 0%
Wisconsin
3 0.96%
Wyoming
0 0%
Other please specify
80 25.64%
British Columbia, Canada
UK
England
United kingdom
Geneva Switzerland
United Kingdom
Ontario
Leeds england
Cheshire, England
Scotland
Wigan, UK
London UK
Wales, UK
Canada, Quebec
one in lousianna, one in maryland
London Ontario Canada
Canada - Alberta
Calgary, AB Canada
Australia
New Zealand
Scotland, United Kingdom
Alberta, Canada
Ontario, Canada
Canada
Hamilton, Ontario, Canada
Ireland
Lincolnshire, England
Denmark, Europe
Romanis
south Africa
Yukon, Canada
newfoundland canada
Ontario Canada
Australia
canada
London, UK
UK, Cambridge
Uk wales
Saskatchewan, Canada
UK (North West of England)
Ontario canada
Britain
Aberdeen, Scotland

At how many weeks gestation was your child born?
Before 24 weeks
0 0%
Between 24 and 28 weeks
1 0.32%
Between 28 and 32 weeks
8 2.56%
Between 32`and 34 weeks
7 2.24%
Between 34 and 36 weeks
16 5.13%
Between 36 and 38 weeks
49 15.71%
Between 38 and 40 weeks
161 51.6%
After 40 weeks
64 20.51%


What did your child weigh at birth?
Less than 4 pounds
9 2.88%
Between 4 and 5 pounds
14 4.47%
Between 5 and 6 pounds
28 8.95%
Between 6 and 7 pounds
58 18.53%
Between 7 and 8 pounds
104 33.23%
Between 8 and 9 pounds
64 20.45%
Between 9 and 10 pounds
22 7.03%
Over 10 pounds
8 2.56%

Did you or your child's biological mother have a difficult labor?
No. I would consider the birth and labor to be a "normal" experience
146 46.65%
Yes, baby was stuck for significant period of time
56 17.89%
Yes, forceps or a vacuum was used
24 7.67%
Yes, baby was breech
23 7.35%
I don't know
12 3.83%
Other (Please Specify)
107 34.19%
C-section 65 20%

How many children do you have? (If you are not the birth parent please count your child and any known genetic siblings of your child.)
1
82 26.03%
2
123 39.05%
3
70 22.22%
4
26 8.25%
5
8 2.54%
6
2 0.63%
7
3 0.95%
More than 7
1 0.32%

If you have more than 1 child, do you have any other children with craniosynostosis? * I UNDERSTAND I WORDED THIS QUESTION ODDLY AND I HOPE THESE RESPONSES ARE FAIRLY ACCURATE**
No, I do not have any other children with craniosynostosis
204 66.89%
I only have 1 child
65 21.31%
I only have 1 child with craniosynostosis
20 6.56%
I have 2 children with craniosynostosis
5 1.64%
I have 3 children with craniosynostosis
1 0.33%
I have twins who both have craniosynostosis
2 0.66%
I have twins and only 1 has craniosynostosis
3 0.98%
Other (Please Specify)
6 1.97%
1st and 2nd
2nd and 3rd
1, 2
1 and 2
1st and 3rd
2, 3


If you have more than 1 child, what number in order of birth is your cranio child?
I only have 1 child
76 25.08%
1st
39 12.87%
2nd
104 34.32%
3rd
50 16.5%
4th
19 6.27%
5th
3 0.99%
6th
2 0.66%
7th
2 0.66%
8th or later
1 0.33%


For the most part, my child as a baby has been in the _____ percentiles for height.
Under 10%
21 7.12%
Between 10 and 20%
22 7.46%
Between 21 and 30%
20 6.78%
Between 31 and 40%
19 6.44%
Between 41 and 50%
33 11.19%
Between 51 and 60%
39 13.22%
Between 61 and 70%
14 4.75%
Between 71 and 80%
39 13.22%
Between 81 and 90%
24 8.14%
Between 91 and 100%
51 17.29%
Over 100%
8 2.71%

For the most part, my child as a baby has been in the ______ percentile for weight.
Under 10%
30 10.2%
Between 10 and 20%
22 7.48%
Between 21 and 30%
32 10.88%
Between 31 and 40%
15 5.1%
Between 41 and 50%
34 11.56%
Between 51 and 60%
41 13.95%
Between 61 and 70%
24 8.16%
Between 71 and 80%
32 10.88%
Between 81 and 90%
29 9.86%
Between 91 and 100%
25 8.5%
Over 100%
5 1.7%

Has your child had more than 1 craniosynostosis surgery?
No
204 64.97%
No, not so far but another one may be needed.
56 17.83%
Yes, 2 surgeries
29 9.24%
Yes, 3 surgeries
9 2.87%
Yes, 4 surgeries
5 1.59%
More than 4 cranio related surgeries
6 1.91%

Did your child wear a helmet or band, currently have a helmet or will be in need of a helmet or band?
No
218 69.43%
Yes
92 29.3%
I am not sure
4 1.27%

Has your child had genetic testing? Does your child have any related syndromes?

No
205 65.5%
Yes, but nothing is unusual and my child does not have a syndrome
53 16.93%
Yes, and something is different with the chromosomes
19 6.07%
My child has crouzons syndrome
3 0.96%
My child has Apert syndrome
1 0.32%
My child has Muenke syndrome
3 0.96%
My child has Pfeiffer syndrome
3 0.96%
My child has Jackson-Weiss syndrome
0 0%
My child has Beare-Stevenson syndrome
0 0%
My child has FGFR2-related isolated coronal synostosis
0 0%
My child Saethre-Chotzen syndrome
6 1.92%
Other (Please Specify)
33 10.54%
 he has had blood taken for genetics testing as part of a clinical trial, we have not heard anything relating to this (we were to be informed if a syndrome/something known was found)
Leopards syndrome
7q11.23 duplication syndrome
Chromosome Deletion
Autism & severe learning difficulties
TCF12.
I have been going through genetic testing for about 5 months now, tests are taking quite awhile to get back. a basic genetic test was done and saw abnormal chromosomes so a deeper test is being done now. They said Reagans case is genetic but still waiting for the complete test to come back. also she has been diagnosed with missing chromosome 16. this is related to juvinile cateracts. she has had eye muscle surgery after her 2nd cranio procedure. The dr. told me after having the reconstruction procedures it weakened her eye muscles and they weren't strong enough to gain strength back, so surgery was needed.
But we are pursuing genetic testing for possible mild Muenke Syndrome.
Is having genetic testing but only as part of a research trial, he would not routinely have had testing
my child has 9p minus (portion of 9th chromosome missing)
Shprintzen Goldberg Syndrome
We had genetic testing done but don't have results yet
Although 7 chromosomes have anomalies, none of them were linked to cranio
He also has Chiari
cranio Fronto nasal dysplasia
Yes, we are a syndromic case. We tested for the TWIST mutation, and that came back negative. I have not gone further both because of expense and because of future insurance concerns.
1 child has 22q11.2 deletion, the other not tested due to first being "de novo"
the geneticist did not see any indication of a syndrome and recommended against genetici testing due to cost and low probability of medically diagnostic results
Extra material on 15th chromozone but they did not believe it caused the cranio since my husband had it also and did not have cranio
9 P Minus Syndrome
15q 11.2 micro deletion

Are you currently aware of any developmental delays with your cranio child?
No
208 66.24%
Delayed Speech
67 21.34%
Gross or fine motor skills
66 21.02%
Social
27 8.6%
ADD/ADHD
23 7.32%
Aspergers
2 0.64%
Autism
11 3.5%
Other (Please Specify)
25 7.96%
Dyslexia and dyspraxia
My son has a stammer
1st delayed speech, 2nd delayed speech due to cleft palate
Feeding issues: dysphagia
She is actually the opposite. she is soaring off the charts developmentally wise for her age.
she did have delayed speech when younger
Doing great other than motor skills.
currently good, her behaviour is unique to other children however, nothing bad, but she reacts differently which I believe is due to the metopic trig
learning disabilities, processing disorder
Sensory Processing Disorder
He is at a 19 month old development across the board for everything and he is 2.5 yrs old
dcd
PDD-NOS
mmd
SPD, had gross and fine motor skill delays as a baby
sensory processing
Second (no syndromic child) has no delay
Hearing loss
delayed walking
Most of these have been worked through (she is five now) but there are still some fine motor and visual issues cognitively she is on target or advanced for her age
none
Intellectual disabilities
Speech now much better after SLT, but at age 2 no speech at all (not even Mama or Dada!)


If your child's craniosynostosis is NOT assosciated with a syndrome does your child have any of these? ( these are not proven to be
associated with cranio, but they are frequently asked about so I wanted to include them)
Lip tie
43 26.88%
Tounge Tie
29 18.12%
Sacral Dimple
35 21.88%
Y shaped gluetal cleft
5 3.12%
Mongolian Spot
16 10%
Curly Fingers
7 4.38%
Curly Toes
14 8.75%
Webbed Toes
5 3.12%
Hemangiomas
15 9.38%
Malformed teeth
9 5.62%
Extra bone in skull
3 1.88%
My child's cranio IS associated with a syndrome and therefore has other
physical attributes that are related
20 12.5%hairy Nevis?
Any Other thing you think could be related? (Please Specify)
46 28.75%
High palate
2nd has cleft palate as part of pierre robin sequence
I, the birth mother have clubbed thumbs, my cranio baby has 1 clubbed thumb, and one normal
has a red port wine birth mark and a cafe late birth mark. one eye is bigger than the other and one ear sits noticeably lower. he also has a stoke bit birth mark.
Palsy of superior oblique muscle of the eyes
congenital heart defect
epilepsy
extra thumb, extra nipple, preauguliar pits
Bi-lateral hernias, open gap teeth (a wait and see on the teeth) severe glue ear issues, resulted in hearing impairment. Grommets and adenoids removed, apparently she has a smaller than usual sinus and this may have prevented flow and encouraged the build up to glue ear, her head is in the small percentile. Urinary tract infections are currently ongoing.
diagnosed with scoliosis at age 15-de said higher incidence of scoliosis in crania kids
Small jaw, although it's grown a bit & not as noticeable as it used to be
unlitaeral cleft lip/palate
High Palate and Femoral Anterversion
Developmental delay across the board
Hypermobility and possible diabetes insipidus
Toe nails are all convex shaped
duplex ureter right side.
none
Unknown is syndrome is present awaiting testing
Seizures
eye problems - lazy eye
Eyesight issues?
Ear pit & torticollis.
only 1 of my cranio babies has a mongolian spot very small on her thigh. both have curly toes. my only non cranio baby has sacral dimple and hemangioma.
Suspected syndrome unconfirmed. Hydronephrosis and severe gastro reflux
Laryngomalacia
Her eyes do not align - she esetropia and hypertropia in both areas. This caused muscular torticollis. She has had two surgeries to correct this is is due for another on in the next year.
Aeortic valve malformation
acid reflux
Flat feet, hyperlax joints, hypodontia, narrow upper jaw
hypospidia.
Hearing. Vision. Asthma. Sinus problems
soft cleft palate

Was there anything different or unusual about the pregnancy of your cranio child that you can think of? (For example a medication taken, diet changes or ovarian cyst.)

**I am not going to include every response. Anything that came up more than once is listed:**

Ovarian Cyst

Fibroids

kidney stones

high blood pressure

took zoloft

took anti-depressant meds 

took zofran

took prozac

took citalipram

took clmoid

took metformin

vitamin D deficiency 

had extreme heartburn

PCOS

took synthroid

thyroid issues

If you are curious, my daughter has sagittal synostosis and this is a link with updates on her progress here

(THIS IS NOT MY IMAGE, I FOUND IT ON PINTEREST, I AM NOT SURE WHERE IT  ORIGINATED FROM)