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Hydranencephaly data base

 

 

 

"Research" Results

Comparison of Hydranencephaly Survey Results

We have conducted 5 surveys regarding Hydranencephaly over the years.  I’ve included the results of each of the surveys.  Survey # 1 was conducted in 2001 on an online survey service. It was conducted over approximately 12 months and had 58 participated. The 2nd one was conducted using the online polls on the Yahoo groups site. Each question had a different number of participants. Only people subscribed to the mailing list were able to participate, and those who had more than one child with the condition could only answer for one child. Therefore I don’t think it’s as accurate. The 3rd was conducted online via a form and via snail mail and was available from September 2002-February 2003. 81 families participated. The 4th and 5th surveys were each conducted on a different online survey hosting site over the period of about a year. The 2006 survey was extremely long and covered a wide variety of questions. For the most part I have just included the questions that in the other surveys. A more complete look at the results of this survey will be done in separate documents. The 2010 survey was much shorter and designed to get information on the most common issues faced by children with Hydranencephaly. As there were differences in how questions were phrased and what answers were provided between the surveys it was sometimes hard to draw conclusions and provide a clear result.  As I no longer have the original results of the earlier surveys I have no way of knowing which children participated. Many of the same children  are represented in each survey but there were others  whose information was provided in only one survey.  These surveys are the most comprehensive compilation of information about children with Hydranencephaly. It's is our hope that this information will help others change their attitudes and care of our children.

General Information
Mother’s age:

 

2001

2002

2003

2006

2010

Teenage

26    (46%)

14     (39%)

34     (42%)

38   (38%)

39   (39%)

20-25

17    (30%)

12     (33%)

22     (28%)

35   (35%)

26   (26%)

26-30

8      (14%)

7       (19%)

19     (24%)

17   (17%)

24   (24%)

Over 30

6      (11%)

3       (8%)

5       (6%)

11   (11%)

10   (10%)

Total

57   (101%)

36     (99%)

80    (100%)

101 (101%)

99   (99%)

Our numbers on mother’s age have gotten the attention of Marc Lubinsky as although the percentage of mothers who were over the age of 20 is greater, the higher numbers of mothers under the age of 20 is higher than what would be expected statistically. He is the author of 2 articles online which can be read at: http://www.hydranencephaly.com/causeofhydran.htm. They have been on both our website and in the books. I had discounted his results due to the fact that there were a higher percentage of mothers over 20. But as he pointed out:  “there is no question that there is an increased rate in younger mothers. Mothers under 20 make up about 10% of all births, so they would be expected to have roughly the same % of children with Hydranencephaly- instead, the sample from your survey had 41%, clearly an increase! Also, of all teenage births, about 1/3 are to women under 18 years old, but those women had 73% of all children with Hydranencephaly born to teenagers!  In other words, the effect is greater as mothers get younger.”

He plans to publish an article on this topic at some point in the future.

Did mom have prenatal care?

 

2001

2002

2003

2006

2010

Yes

39   (67%)

Not asked

53   (68%)

33   (32%)

Not asked

No

19   (33%)

 

25   (32%)

69   (68%)

 

Total

58   (100%)

 

78   (100%)

102 (100%)

 

In the 2001 and 2003 surveys the ratio of those who had and those who didn’t have prenatal care are similar. However that is drastically different in the 2006 survey. I don’t know a reason for that.

Suspected reason for Hydranencephaly condition

 

2001

2002

2003

2006

2010

Prenatal drug exposure

5     (8%)

3   (9%)

9    (10%)

6    (6%)

Not asked

Prenatal stroke

25  (40%)

17 (49%)

31  (35%)

47 (47%)

 

Prenatal infection

5    (8%)

2   (6%)

6    (7%)

5   (5%)

 

Death of twin in utero

4     (6%)

1   (3%)

4    (5%)

4   (4%)

 

unknown

24  (38%)

12  (34%)

36 (41%)

37 (37%)

 

Illness after birth

n/a

n/a

2   (2%)

2   (2%)

 

Total

63  (100%)

35   (101%)

88 (100%)

101 (101%)

 

The most common cause given seems to be a prenatal stroke or that the cause is unknown.

Health Issues
What are your child’s most common health concerns?

 

2001

2002

2003

2006

2010

Respiratory

24     (24%)

12      (29%)

42     (24%)

48      (21%)

n/a

Neurological

36     (37%)

16      (38%)

58     (33%)

63      (27%)

 

Feeding

18     (18%)

5        (12%)

33     (19%)

60      (26%)

 

Spasticity

11     (11%)

4        (10%)

45     (25%)

51      (22%)

 

Other

9       (9%)

5        (12%)

n/a

12       (5%)

 

Total

98*   (99%)

42      (101%)

178* (101%)

234*  (101%)

 

*number is greater than # who took survey as some people checked more than 1 category

I question the validity of the answers to this question but leave it in so people can see the variety of health concerns a child with Hydranencephaly may have.

Does your child have allergies?

 

2001

2002

2003

2006

2010

Yes

19       (34%)

10      (36%)

29    (37%)

43     (64%)

n/a

No

37       (66%)

18      (64%)

49    (63%)

24     (36%)

 

Total

56      (100%)

28     (100%)

78    (100%)

67    (100%)

 

What is your child allergic to?

 

2001

2002

2003

2006

2010

Latex

4       (14%)

3      (21%)

3       (7%)

6          (9%)

 

Environmental

11     (38%)

4      (29%

13     (32%)

23        (34%)

 

Medications

9       (31%)

4      (29%)

12     (29%)

25        (37%)

 

Food

5       (17%)

1      (7%)

6       (15%)

10        (15%)

 

Other

n/a

2      (14%)

7       (17%)

4          (6%)

 

Total

29   (100%)

14   (100%)

41    (100%)

68     (101%)

 

Does your child have Hydrocephalus?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

n/a

81      (78%)

83    (78%)

No

 

 

 

23      (22%)

23    (22%)

Total

 

 

 

104   (100%)

106 (100%)

Does your child have a shunt?

 

2001

2002

2003

2006

2010

Yes

41   (72%)

20   (67%)

49     (61%)

73    (96%)

80    (75%)*

No

16  (28%)

10   (33%)

31     (39%)

3      (4%)

26    (25%)

Total

57  (100%)

30   (100%)

80     (100%)

76   (100%)

106  (100%)

* all but 3 of the children in the 2010 survey who had hydrocephalus, had shunts.

Respiratory Issues
Does your child have/ use any of the following?

 

2001

2002

2003

2006

2010

Asthma

14

n

16

37

n/a

Tracheostomy

3

4

6

6

13

Bipap use

n/a

n/a

3

*

32

Ventilator

1

n/a

5

9*

14

Oxygen at home

12

5

(25%)?

32

n/a

Require suctioning

22

11

38

50

n/a

Get “gurgly”

34

20

57

 

n/a

Sleep Apnea

n/a

n/a

n/a

28

n/a

Use CPAP

n/a

n/a

n/a

4

n/a

*Bipap & ventilator use combined in 2006 survey

Other Health Issues

 

2001

2002

2003

2006

2010

Hypothyroidism

4

n/a

n/a

9

12

Diabetes Insipidus

11

n/a

22

16

13

Premature Puberty

13

 

16

*

n/a

Urinary Tract infections

14

6

17

26

n/a

Ear infections

30

22

42

59

n/a

Tonsillitis

6

5

13

21

n/a

*Premature Puberty question was asked in a different manner in the 2006 survey. The results are as follows:

 

Number

Percent

Under 5

10

38%

5-9 years

11

42%

10 and over

5

19%

Total

26

99%

Precocious (Premature) Puberty is described as:  the onset of signs of puberty before age 7 or 8 in girls and age 9 in boys — can be physically and emotionally difficult for kids and can sometimes be the sign of an underlying health problem (http://kidshealth.org/parent/medical/sexual/precocious.html )

So, with 80% of the children represented here reporting puberty as starting before 10, the incidence of early puberty in children with Hydranencephaly is quite high.

Has your child had bacterial or viral pneumonia?

 

2001

2002

2003

2006

2010

Yes

25   (43%)

11    (38%)

26   (35%)

43    (43%)

n/a

No

33   (57%)

18   (62%)

49   (65%)

58    (57%)

 

Total

58   (100%)

29   (100%)

75   (100%)

101  (100%)

 

Has your child had Aspiration pneumonia?

 

2001

2002

2003

2006

2010

Yes

17   (30%)

8       (27%)

27    (35%)

34    (36%)

n/a

 No

40   (70%)

22     (73%)

51    (65%)

60    (74%)

 

Total

57   (100%)

30    (100%)

78    (100%)

94   (100%)

 

Is your child more likely to have a

 

2001

2002

2003

2006

2010

High temperature

7     (17%)

9      (31%)

11   (17%)

64    (65%)

**

Low temperature

35   (83%)

20    (69%)

28   (44%)

11    (11%)

 

Both

n/a

N/a

25   (39%)

24*  (25%)

 

Total

42  (100%)

29  (100%)

64   (100%)

99    (101%)

 

*”normal” is the category asked in this survey
**Question was: Does your child have trouble controlling his/her temperature: Yes: 75 (71%), No: 31 (29%).  The child’s common temperatures were given as an open ended question and are varied.

It seems that more children have lower temperatures than higher.

Does your child have trouble sleeping?

 

2001

2002

2003

2006

2010

Yes

32      (57%)

13       (45%)

43      (54%)

59       (59%)

n/a

No

24      (43%)

16       (55%)

36      (46%)

41       (41%)

 

Total

56      (100%)

29       (100%)

79      (100%)

100    (100%)

 

I find the results of this question interesting. From what parents say, all the children have trouble sleeping. But this shows that just over half the children have trouble sleeping.

Does your child take any medication to help him/her sleep?

 

2001

2002

2003

2006

2010

Yes

16     (29%)

10      (37%)

27     (35%)

44     (70%)

n/a

No

39     (71%)

17      (63%)

51     (65%)

19     (30%)

 

Total

55    (100%)

27      (100%)

78     (100%)

63     (100%)

 

Have you tried Melatonin?

 

2001

2002

2003

2006

2010

Yes

8       (18%)

8      (35%)

16      (21%)

20*

n/a

No

36     (82%)

15    (65%)

61      (79%)

 

 

Total

44     (100%)

23    (100%)

77      (100%)

 

 

*the use of melatonin was included in a general question about what medications a child had used for sleep.

In each of the surveys (2001-2003) only 1 person indicated that Melatonin had worked for their child. In the 2006 survey 2 people indicated Melatonin worked best for their child. As you can see it doesn’t work as a rule.

  Is constipation a problem for your child?

 

2001

2002

2003

2006

2010

Yes

43       (78%)

n/a

54     (69%)

81     (84%)

n/a

No 

12       (22%)

 

24     (31%)

15     (16%)

 

Total

55    (100%)

 

78    (100%)

96     (100%)

 

Does your child take medications for his/her constipation?

 

2001

2002

2003

2006

2010

Yes

28    (52%)

18    (69%)

49     (61%)

n/a

n/a

No

26    (48%)

8      (31%)

31     (39%)

 

 

Total

54    (100%)

26    (100%)

80     (100%)

 

 

What medications has your child taken for his/her constipation?

 

2001

2002

2003

2006

2010

Miralax

n/a

n/a

18       (27%)

34       (18%)

n/a

Dulcolax

 

 

6         (9%)

13       (7%)

 

Glycerine Suppositories

 

 

21       (31%)

39       (21%)

 

Agarol

 

 

2         (3%)

1         (1%)

 

Mineral Oil

 

 

1         (1%)

13       (7%)

 

Colace

 

 

5         (7%)

7         (4%)

 

Senekot

 

 

8         (12%)

13       (7%)

 

Lactulose

 

 

6         (9%)

14       (7%)

 

Fruit/diet change

 

 

 

29       (15%)

 

Fruit eze

 

 

 

2         (1%)

 

Magnolax

 

 

 

3         (2%)

 

Other

 

 

 

22       (12%)

 

total

 

 

67      (99%)

190     (102%)

 

This is a hard question to get results for. I have no other info on the 2003 survey so have no way of knowing how many children are represented.  In the 2006 survey all participants just clicked on meds they’ve used for their child. This does not represent how many children participated either.  But you can see that families have tried multiple medications to help treat constipation in their child.

The 2006 survey asked which of these worked best for their child. It was a choose one answer.  The results are as follows:

 

Number

Percent

Miralax

22

33%

Dulcolax

5

7%

Glycerine suppositories

8

12%

Mineral oil

1

1%

Agarol

0

0

Colace

0

0

Senekot

1

1%

Lactulose

2

3%

Fruit/diet change

8

12%

Fruit eze

0

0

Magnolax

3

4%

Other

9

13%

None Worked

8

12%

Total

67

98%

Seizures and related issues:
Does your child have seizures?

 

2001

2002

2003

2006

2010

Yes

44      (79%)

24     (83%)

61     (79%)

78     (89%)

87      (82%)

No

12      (21%)

5       (17%)

16     (21%

10     (11%)

19      (18%)

Total

56      (100%)

29    (100%)

77     (100%)

88    (100%)

106    (100%)

Does your child have “coma” incidences (where he/she sleeps for several days and is hard to rouse)?

 

2001

2002

2003

2006

2010

Yes

32   (57%)

n/a

38   (48%)

32   (38%)

33    (31%)

No

24   (43%)

 

41   (52%)

53   (62%)

73    (69%

Total

56   (100%)

 

79   (100%)

85   (100%)

106  (100%)

No other seizure related questions were asked in the 2001, 2002, 2003 and 2010 surveys. However the 2006 survey went in to much more detail.  All the seizure related questions in that survey will be covered in another document. For information sake I’m presenting a few of those questions here.

Does your child drift into “absences?”

 

Number

Percent

Yes

61

80%

No

15

20%

Total

76

100%

Do these happen?

 

Number

Percent

Occasionally

29

46%

Frequently

24

38%

Rarely

10

16%

Total

63

100%

Is it easy to tell when your child is "back"?

 

Number

Percent

Yes

53

87%

No

8

13%

Total

61

100%


Have your child’s seizures been picked up by a EEG?

 

Number

Percent

Yes

31

42%

No

42

58%

Total

73

100%

Can your child be brought out of a seizure by a touch or other stimulus?

 

Number

Percent

Sometimes

50

64%

Always

5

6%

No

23

29%

Total

78

99%

Can a seizure be brought on by something external (position, noise, lights, stress, etc)?

 

Number

Percent

Yes

38

49%

No

17

22%

Sometimes

23

29%

Total

78

100%


Feeding
Does your child have a feeding tube?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

n/a

59     (60%)

70      (66%)

No

 

 

 

39     (40%)

 36     (34%)

Total

 

 

 

98     (100%)

106    (100%)


At what age did your child get his/her feeding tube?

 

2001

2002

2003

2006

2010

Within first month

n/a

n/a

n/a

13    (21%)

10   (15%)

1-12 months

 

 

 

14    (23%)

23   (35%)

13 months-2 years

 

 

 

19    (31%)

20   (30%)

3-9 years

 

 

 

12    (20%)

11   (17%)

10 & over

 

 

 

3      (5%)

2     (3 %)

Total

 

 

 

61    (100%)

66  (100%)


Although there doesn’t seem to be a clear age by which most children who get a tube have it, over 50% (2006: 54%, 2010: 65%) get them from 1 month to 2 years.  This makes sense as in most cases the children do relatively well for awhile eating by mouth. As they get older it becomes harder on them.  Most of the time children are given the opportunity to eat orally at first.

How is your child fed?

 

2001

2002

2003

2006

2010

Oral

31   (54%)

13     (42%)

32     (42%)

38    (40%)

37     (35%)

Tube

19   (33%)

14     (45%)

32     (42%)

43    (45%)

49     (46%)

Both

7     (12%)

4       (13%

13     (17%)

15    (16%)

20     (19%)

total

57   (99%)

31     (100%)

77     (101%)      

96    (101%)

106   (100%)

It’s too bad we didn’t ask “Does your child have a feeding tube?” in the first 3 surveys. I think more children are getting feeding tubes now than in earlier days but that isn’t shown clearly in the questions “How is your child fed?”

Has your child been diagnosed as aspirating?

 

2001

2002

2003

2006

2010

Yes

21    (37%)

n/a

33     (42%)

44     (45%)

55     (52%)

No

36    (63%)

 

45     (58%)

54     (55%)

51     (48%)

Total

57    (100%)

 

78     (100%)

98     (100%)

106   (100%)

Apart from the 2010 results, it seems that fewer children are diagnosed as aspirating. But it’s quite close so we can’t say clearly either “all children with Hydranencephaly aspirate” or “most children with Hydranencephaly don’t aspirate”. We can say it’s fairly common that they do aspirate.

Does your child have Gastroesophageal Reflux disorder (GERD or reflux)?

 

2001

2002

2003

2006

2010

Yes

35     (63%)

n/a

53      (67%)

58     (59%)

61     (58%)

No

21     (37%)

 

26      (33%)

40     (41%)

45     (42%

Total

56     (100%)

 

79      (100%)

98     (100%)

106   (100%)

This shows that over 50% of children with Hydranencephaly have difficulties with reflux. This is a very painful condition and accounts for a lot of the discomfort children have in their first months.

Has your child had a Nissen Fundoplication?

 

2001

2002

2003

2006

2010

Yes

17    (33%)

n/a

26     (33%)

29    (34%)

n/a

No

35    (67%)

 

52     (67%)

57    (66%)

 

Total

52    (100%)

 

78     (100%)

86    (100%)

 

The following 3 questions were only asked in the 2006 survey.

Did it (Nissen) work?

 

Number

Percent

Yes

26

93%

No

2

7%

Total

28

100%

Has the Nissen needed to be repeated?

 

Number

Percent

Yes

5

17%

No

24

83%

Total

29

100%

 Has your child had a Pyloroplasty? 

 

Number

Percent

Yes

5

7%

No

69

93%

Total

74

100%

This is an operation where the bottom of the stomach is opened up to allow faster drainage It’s often done at the same time as the Nissen. But from these numbers, it appears that it’s not done as routinely with the Nissen as it has been in the past.

If your child eats orally, does he/she manage liquids?

 

2001

2002

2003

2006

2010

Yes

35    (62.5%)

n/a

41    (57%)

n/a

n/a

No

21    (37.5%)

 

31    (43%)

 

 

Total

56    (100%)

 

72    (100%)

 

 


The question was asked differently in the 2006 survey.  Results follow.

Do you thicken liquids for your child?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

12     (19%)

20     (32%)

n/a

No

 

 

52     (81%)

43     (68%)

 

Total

 

 

64     (100%)

63     (100%)

 


The following question was only asked in the 2006 survey:

 If your child eats orally, what textures of food can your child eat?

 

Number

Percent

Smooth purees

27

47%

Junior (smooth food with some chunks)

14

24%

Liquids only

13

22%

Regular table food

4

7%

Total

58

100%

Physical abilities and issues
What is your child’s tone (how loose or stiff the body is)?

 

2001

2002

2003

2006

2010

Tight

23     (43%)

n/a

34    (44%)

47    (49%)

51    (48%)

Floppy

6       (11%)

 

5      (6%)

5      (5%)

6      (6%)

Both

24     (45%)

 

38    (49%)

44    (46%)

49    (46%)

Total

53     (99%)

 

77    (99%)

96    (100%)

106  (100%)


As you can see, children with Hydranencephaly tend to have either high tone (stiff) or a mixed tone (both stiff and floppy). I observed this in my child as well.  High tone is the cause of a lot of orthopedic problems faced by the children.

Has your child received Botox or phenol injections (used to help reduce tone)

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

12

Botox: 17     (18%)Phenol: 4     (4%)

n/a

No

 

 

65

Botox: 78     (82%)Phenol: 86   (96%)

 

Total

 

 

 

Botox:  95    (100%)Phenol: 90   (100%)

 

These injections are done in muscle groups, most often in the legs or arms and have to be repeated every 3-6 months. In many cases they can either prevent the need for surgery or tell the dr if surgery will work on a particular child (if paralyzing the muscle stops the tightness, surgery that cuts the tendon will also work).  It’s use in children has increased over the last few years.

Has your child taken Baclofen to relieve spasticity?

 

2001

2002

2003

2006

2010

Yes

 

 

24   (31%)

29    (32%)

41     (39%)

No

 

 

54   (69%)

62    (68%)

65     (61%)

Total

 

 

78   (100%)

91    (100%)

106  (100%)

Did your child take Baclofen orally or via an implanted pump (Intrathecal)?

 

2001

2002

2003

2006

2010

Oral

n/a

 

21

26

n/a

Intrathecal pump

n/a

 

2

2

 

Total

 

 

23

28

 


It’s been suggested that children may have an increase in seizures when taking Baclofen. The following question was only asked in the 2006 and 2010 surveys.

 

2006

2010

Yes

14     (39%)

7      (23%)

No

69     (61%)

24    (77%)

Total

106  (100%)

31    (100%)


So in the children with Hydranencephaly this doesn’t hold true for a majority. And in some cases the benefit of the Baclofen has outweighed the risk of increased seizures.

Can your child roll?

 

2001

2002

2003

2006

2010

Yes

17   (30%)

n/a

19    (24%)

28     (29%)

n/a

No

30   (53%)

 

51    (65%)

61     (62%)

 

Used to

7     (12%)

 

 

9       (9%)

 

Too young

3     (5%)

 

8      (10%)

 

 

Total

57   (100%)

 

78   (99%)

91     (100%)

 

Can your child move his/her hands/arms

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

49     (64%)

67   (68%)

n/a

No

 

 

2       (3%)

6     (6%)

 

A little

 

 

26     (34%)

25   (26%)

 

Total

 

 

77     (101%)

98   (100%)

 

Can your child move his/her legs?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

50    (66%)

66      (69%)

n/a

No

 

 

3      (4%)

6         (6%)

 

A little

 

 

23    (30%)

24       (25%)

 

Total

 

 

76    (100%)

96       (100%)

 

 How is your child’s head control?

 

2001

2002

2003

2006

2010

None

4        (8%)

n/a

11      (14%)

n/a

n/a

Good

9        (18%)

 

12      (16%)

13     (19%)

 

Poor

15      (30%)

 

28      (37%)

48     (70%)

 

Changes

6        (12%)

 

7        (9%)

8       (12%)

 

A little

16      (32/%)

 

18      (24%)

n/a

 

Total

50      (100%)

 

76      (100%)

69     (101%)

 


These results aren’t great as the same questions options weren’t given in the 2006 survey. However it does seem to say that the majority of the children have poor or little head control. This is something all of us have worked on with our children.

Can your child touch or manipulate items?

 

2001

2002

2003

2006

2010

Yes

 

 

8       (10%)

22     (23%)

 

No

 

 

37     (47%)

68     (72%)

 

A little

 

 

30     (38%)

 

 

Used to

 

 

3       (4%)

4       (4%)

 

Total

 

 

78     (99%)

94     (99%)

 

Again, as the “a little” question wasn’t included in the 2006 survey, the numbers don’t give us a true picture of what the children can do. But, if you combine “yes” and “a little” in the 2003 survey you get 38 (49%). So in that survey more could touch or manipulate items than couldn’t. In the 2006 survey vastly more couldn’t touch or manipulate items than could.  Different children participated in each survey with some overlap.

Can your child pick up items?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

7         (9%)

5        (5%)

n/a

No

 

 

53       (68%)

85      (91%)

 

Sometimes

 

 

7         (9%)

n/a

 

Used to

 

 

2         (3%)

3        (3%)

 

Too young

 

 

9         (12%)

n/a

 

Total

 

 

78      (101%)

93      (99%)

 

 These results show that although many children can touch or manipulate items few can actually pick them up.

Can your child bring his/her hands to midline?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

53      (66%)

41    (46%)

n/a

No

 

 

27      (34%)

48    (54%)

 

Total

 

 

80      (100%)

89    (100%)

 

The following questions on physical abilities were only asked on the 2006 survey.  I am presenting only the question. Much more was asked in the survey and will be included in the 2006 survey report.

Can your child walk?

 

Number

Percent

Yes

0

 

No

93

98%

In a gait trainer

2

2%

Total

95

100%

Can your child sit unassisted?

 

Number

Percent

Yes

5

5%

No

88

95%

Total

93

100%

Can your child sit while supported by legs only?

 

Number

Percent

Yes

8

9%

No

80

90%

Used to

1

1%

Total

89

100%

 Can your child crawl?

 

Number

Percent

Yes

4

4%

No

89

94%

Used to

2

2%

Total

95

100%

 Can your child move on the floor other than crawling (by kicking his/her legs, using his/her head to help move)?

 

Number

Percent

Yes

19

21%

No

66

73%

Used to

6

6%

Total

91

100%

Orthopedic concerns

Has your child had a dislocated hip?

 

2001

2002

2003

2006

2010

Yes

16     (30%

 

23    (29%)

24     (28%)

31     (29%)

No

38     (70%)

 

56    (71%)

62     (72%)

75     (71%)  

Total

54     (100%)

 

79    (100%)

86     (100%)

106   (100%)

Has your child had a subluxed hip? (partly out)

 

2001

2002

2003

2006

2010

Yes

3*

 

 

39     (41%)

40    (38%)

No

 

 

 

57     (59%)

66    (62%)

Total

 

 

 

96     (100%)

106  (100%)

*subluxed hip was included as part of the question about a dislocated hip.

Has your child had hip surgery?

 

2001

2002

2003

2006

2010

Yes

5     (12%)

 

14   (18%)

18  (25%)

 

No

38   (88%)

 

65   (82%)

54  (74%)

 

Planned but not done yet

n/a

 

n/a

1    (1%)

 

Total

43   (100%)

 

79   (100%)

73  (100%)

 

Does your child have scoliosis (curved spine)?

 

2001

2002

2003

2006

2010

Yes

20     (36%)

n/a

27    (35%)

41    (43%)

33    (31%)

No

36     (64%)

 

51    (65%)

55    (57%)

73    (69%)

Total

56     (100%)

 

78    (100%)

96    (100%)

106  (100%)

 Does your child have Kyphosis (hunched back)

 

2001

2002

2003

2006

2010

Yes

9      (16%)

n/a

17    (22%)

2      (2%)

26    (25%)

No

48    (84%)

 

60    (78%)

94    (98%)

80    (75%)

Total

57    (100%)

 

77    (100%)

96    (100%)

106  (100%)

 Does your child have any contractures (limbs that can’t be straightened out)

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

27       (35%)

30    (32%)

n/a

No

 

 

50       (65%)

64    (68%)

 

Total

 

 

77       (100%)

94    (100%)

 

 Does/did your child wear/use the following equipment?

 

2001

2002

2003

2006

2010

AFOs

  ?    ( 21%)

n/a

23    (21%)

Yes: 29 (32%)

No: 62  (68%)

n/a

Hand splints during day

21   (36%)

 

25    (23%)

Yes: 29 (33%)

No: 59  (67%)

 

Hand splints at night

5     (9%)

 

10    (9%)

Yes: 13  (14%)

No: 77   (86%)

 

TLSO (back brace

2    (3%)

 

2      (2%)

Yes: 9    (10%)

No: 78   (90%)

 

Long leg splints

9    (16%)

 

8      (7%)

Yes: 8    (9%)

No: 83   (91%)

 

Abduction brace

1     (2%)

 

5     (5%)

Yes: 2    (2%)

No: 77   (88%)

Did at one time: 9 (10%)

 

Stander

20   (35%)

 

36  (32%)

Yes: 32    (34%)

No: 61     (66%)

 

Walker

0

 

2    (2%)

Yes: 6      (6%)

No: 89    (94%)

 

Total

58 *

 

111  (101%)

 

 

*does not include number of children wearing AFOs
As I don’t have the earlier surveys I can’t tell exactly how the percentages were achieved. However it seems that a larger number of children use AFOs (ankle foot orthotics) and hand splints during the day. More also use a stander.

Social/Emotional attributes
Can/does your child give hugs and kisses?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

16     (20%)

25     (26%)

n/a

No

 

 

54     (68%)

71     (74%)

 

Sometimes

 

 

9       (11%)

n/a

 

Total

 

 

79     (99%)

96     (100%)

 

 Can/does your child cry?

 

2001

2002

2003

2006

2010

Yes

 

 

74    (94%)

89   (91%)

 

No

 

 

5      (6%)

9      (9%)

 

Total

 

 

79    (100%)

98   (100%)

 

 What is your child’s general mood?

 

2001

2002

2003

2006

2010

Happy

39     (64%)

 

46    (58%)

57     (59%)

76      (72%)

Irritable

 

 

5      (6%)

13     (13%)

7        (7%)

Fussy

1       (2%)

 

11    (14%)

 

 

Quiet

5       (8%)

 

15    (19%)

25     (26%)

21      (20%)

Variable

10     (16%)

 

 

 

 

Can’t tell

6       (10%)

 

2       (3%)

2       (2%)

2        (2%)

Total

61     (100%)

 

79     (100%)

97     (100%)

106   (101%)


What was your child’s mood as a baby?

 

2001

2002

2003

2006

2010

Happy

18     (32%)

 

18     (21%)

20      (26%)

16      (18%)

Irritable

27     (47%)

 

38     (45%)

46      (60%)

60      (67%)

Fussy

2       (4%)

 

11     (13%)

 

 

Quiet

4       (7%)

 

15     (18%)

11      (14%)

12      (13%)

Couldn’t tell

6       (11%)

 

2       (2%)

0

1        (1%)

Total

57     (101%)

 

84     (99%)

77      (100%)

89     (99%)

 As you can see there is a major difference in the mood of a child in his first year and then in later years. The percentage of children who are irritable during their first year actually increases in the last 2 surveys. The percentage of children who are happy over all also increases dramatically in the last survey. We use this info to comfort families who are dealing with constantly fussy babies. It does get better.

Is your child aware of his/her surroundings?

 

2001

2002

2003

2006

2010

Yes

46     (82%)

 

60     (76%)

79     (80%)

96      (91%)

No

1       (2%)

 

2       (3%)    

18     (20%)

10      (9%)

Sometimes

8       (14%)

 

12     (15%)

n/a

n/a

Used to be

1       (2%)

 

0

n/a

n/a

Can’t tell

n/a

 

5       (6%)

n/a

n/a

Total

56     (100%)

 

79     (100%)

97      (100%)

106    (100%)

 Is your child aware of objects?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

33      (42%)

51    (67%)

n/a

No

 

 

14      (18%)

25    (33%)

 

Sometimes

 

 

31      (40%)

n/a

 

Used to be

 

 

0

n/a

 

Total

 

 

78      (100%)

76    (100%)

 

These numbers show that children with Hydranencephaly are indeed aware of their surroundings and objects. More details about this aspect of the children will be looked at in depth in a document called “Cognitive Development and Awareness in Children with Hydranencephaly” which should be available by September 2011.

Does your child have a favorite toy?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

39       (51%)

40    (43%)

n/a

No

 

 

38       (49%)

51    (57%)

 

Total

 

 

77       (100%)

91    (100%)

 


Does your child have a security object?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

24       (32%)

30      (40%)

n/a

No

 

 

51       (68%)

45      (60%)

 

Total

 

 

75       (100%)

75      (100 %)

 


Does your child attend school?

 

2001

2002

2003

2006

2010

Yes

18       (31%)

n/a

23      (29%)

23     (25%)

n/a

No

12       (21%)

 

12      (15%)

16     (18%)

 

Too young

17       (29%)

 

30      (37%)

31     (34%)

 

Homeschooled

10      (17%)

 

8        (10%)

11     (12 %)

 

Used to

1        (2%)

 

7        (9%)

10     (11%)

 

Total

58     (100%

 

80      (100%)

91     (100%)

 


What type of program is he/she in?

 

2001

2002

2003

2006

2010

Included with typical peers

4       (24%)

n/a

10      (38%)

10   (29%)

n/a

Segregated class

12     (71%)

 

16      (62%)

15   (44%)

 

Both

1       (6%)

 

0

9     (26%)

 

Total

17    (101%)

 

26     (100%)

34   (99%)

 

Vision/Hearing

Can your child hear?

 

2001

2002

2003

2006

2010

Yes

54     (96%)

n/a

75     (99%)

87    (94%)   

97     (92%)

No

1       (2%)

 

1       (1%)

0

5       (5%)

Don’t know

1       (2%)

 

 

7       (7%)

4       (4%)

Total

56     (100%)

 

76     (100%)

94     (100%)

106   (101%)


Can your child make any sounds?

 

2001

2002

2003

2006

2010

Yes

n/a

n/a

78

83     (93%)

n/a

No

 

 

0

6       (7%)

 

Total

 

 

78  (100%)

89     (100%)

 


Does your child use any words meaningfully?

 

2001

2002

2003

2006

2010

Yes

5        (9%)

n/a

8       (11%)

13    (14%)

n/a

No

38      (70%)

 

68     (89%)

79    (86%)

 

Too young

11      (20%)

 

 

 

 

Total

54      (99%)

 

76     (100%)

92    (100%)

 


Does your child use a communication device?

 

2001

2002

2003

2006

2010

Yes

8        (15%)

n/a

12      (15%)

14     (16%)

n/a

No

30      (58%)

 

49      (62%)

74     (85%)

 

Too young

14      (27%

 

18      (23%)

 

 

Total

52      (100%)

 

79      (100%)

88      (101%)

 


Can your child understand what is said to him/her?

 

2001

2002

2003

2006

2010

Yes

16     (30%)

n/a

14     (18%)

32    (38%)

n/a

No

7       (13%)

 

13     (16%)

51    (62%)

 

Maybe

7       (13%)

 

n/a

n/a

 

A little

3       (6%)

 

 n/a

n/a

 

Sometimes

8       (15%)

 

22     (28%)

n/a

 

Most

1       (2%)

 

1       (1%)

n/a

 

Can’t tell

3       (6%)

 

14     (18%)

n/a

 

Too young

9       (17%)

 

15     (19%)

n/a

 

 

54     (102%)

 

79     (100%)

83      (100%)

 

 

Will your child echo you?

 

2001

2002

2003

2006

2010

Yes

21     (44%)

n/a

19     (26%)

26     (29%)

n/a

No

27     (56%)

 

53     (74%)

64     (71%)

 

Total

48     (100%)

 

72     (100%)

90     (100%)

 

 

Can your child see?

 

2001

2002

2003

2006

2010

Yes

27     (49%)

 

22     (28%)

28       (32%)

31   (29%)

No

10     (18%)

 

13     (17%)

26       (30%)

19   (18%)

Sometimes

7       (13%)

 

10     (13%)

36       (40%)

37   (35%)

A little

11     (20%)

 

17     (22%)

n/a

n/a

Not sure/don’t know

n/a

 

16     (21%)

n/a

19    (18%)

Total

55     (100%)

 

78     (101%)

90      (100%)

106  (100%)


Does your child wear glasses?

 

2001

2002

2003

2006

2010

Yes

4       (7%)

n/a