Great Hair Day

Part 2 of Health Health Health

Ok, here goes again. Health continued.....

There is a very small risk of Cervical Spine Instability in children with down syndrome. This occurs at the top of the neck and affects the two small bones in the spine that allow nodding (like yes/ no). It is very important not to ignore the signs and to seek specialist attention. Apparently it is very curable with a very small operation. Look out for:

• pain at a spot near the hard bump behind the ear
• A stiff neck which doesn't get better quickly
• Alteration in the way a child walks or he/ she looks less good on their feet
• Deterioration in a child's ability to manipulate things with their hands
• Incontinence developing in a child who has previously had no problem

Coeliac Disease is an intolerance to gluten. The lining of the small intestine becomes damaged reducing the person's ability to absorb certain foods. The symptoms are diarrhoea/ constipation/ chronic tiredness/ anaemia. The risk in children with down syndrome is just under 18%. Joan stressed that it is very easy to test for. When you are getting bloods done to check your child's thyroid, request a test for coeliac disease too. Sure, while the needle is in there, you might as well take a little extra blood to test for this, and what's the harm in getting it done once a year along with the thyriod. This condition is life long and requires a gluten free diet (no cereals). Check out the Coeliac Society of Ireland and the Coeliac Society UK for more information. The Down's Syndrome Medical Interest Group recomend screening.

As we all know, there can be (well lets face it, it's very likely) Speech and Language Problems in children with down's syndrome. Receptive language skills are increased, expressive language skills are decreassed and grammer can be more difficult. No speech and language problem is unique to children with down's syndrome and it can be linked to hearing impairment like otitis media with effusion (???) and fliud in the middle ear without signs/ symptoms of ear infections. The trick here is to start therapy the moment your child is born (which all parents do anyway). Feeding, family talk, touching, looking, listening, encouragement are all important speech therapy you can do at home, and formal S&L is also important.

CONSTIPATION!!!! I have some lovely pictures and diagrams in my notes, but you will all be sad to know, that they are a bit too small to scan in and post here (and I am far too lazy to dig the scanner out and plug it into the computer), so I'll save you the details. Lets just say that normal poo for a child should be smooth, soft and snake/ sausage shaped. If it's hard and lumpy (or worse)......CONSTIPATION. If it's little soft blobs (or worse again) with clear liquid ....DIARRHEA. If it's a baby (Cathal), in my experiance, anything goes. Anyway, for constipation, introduce more fibre (fruits, prunes, cereals), increase water or juice, take more exercise, cut down on high-fat and high sugar foods, encourage regular bowel movements and go to the GP if the poo is softer (could be hypothyroidism). Also, another tip that Joan had was if your child seems to be straining, hold your child against you, their back to your tummy, bring their knees up to their chest and give a big hug! Aparently this gets things moving.

Sleep, the holy grail. Sleep all depends on age, if the child is well/ unwell, hot/ cold, hungry/ thirsty, teething, learnt behaviour. If sleep problems continue, write a record (when did it start/ happen, time it takes to go to sleep, time the child actually sleeps and what position the child sleeps in the bed/ cot) Chat to your GP, or Joan.....she seems to have all the answers and asks all the right questions.

Understanding Behaviour, it all has a purpose. Either to get atention, start social contact, escape/avoid, obtain objects/ events, express emotion or reduce stress, sensory stimulation. Again, it's the same advise as sleep, take a note of the behaoviour, when, where, why and listen to your gut instinct.

Dental Health, but sure that's all the usual stuff!! No need to explain.

Independance can start from 1 year old. For example, when out and about, sit the child in the trolley and have them get the cornflakes. Have a list of shopping with pictures to illustrate what is needed. This can give children pride in the ability to put items into the trolley. So while doing the shopping, you are practicing and teaching coordination, S&L, physio and OT. Be inclusive from an early age, get involved in the community, local events, drama, football, swimming.

And finally, you, the parent. It's important to take care of yourself, take time for you. We are all running around from one appointment to another, and just sitting down to relax and to be relaxed around your child is the best thing. The hoovering can get done tomorrow, the washing can wait another few hours. When playing with your child, just play with them, drop the down's syndrome for one day each week and do what you want.

"It's in the the atmosphere of love and acceptance that the best growth occurs"




Joan Murphy
Clinical/ Research Nurse Specialist
Department of Paediatrics/ TCD
Phone: 01 8963785/ 4142000/ bleep 7193

Health Health Health Part 1

Last week, DS Dublin held a talk about the typical and common health issues in children and adults with down syndrome. It was such an informative and interesting talk, I've decided to transcribe the notes we were given, and try to add in what I remember. So I'm afraid this might not be too interesting to some, but to others, I hope it helps.

The talk was given by Joan Murphy who is a clinical nurse specialist in Tallaght Hospital. She works closely with Down Syndrome Ireland and she is available to all parents who have children with down syndrome, by email, phone and through the hospital. You don't need to be her patient, just give her a call and she'll answer any question. And if she dosen't pick up, then try again or leave a message. I'll include her contact details at the end.

The major treatable health problems are heart, growth, thyroid, hearing, vision and development & learning abilities/ gaps. Early identification and intervention are essential.

Family centred care is very important. The well being and rights of the child are priority. Parents are the key to the child's health and well being. Parents are the experts for their child. In other words, if you have a gut feeling that something is just not right, get it checked out. If you are not happy with your doctors explainations, give Joan a call!

A key resource in health matters is a book called "Medical Management of Children & Adolescents with Down Syndrome in Ireland". It is a medical guideline for the profesionals, but it's no harm to know where to get it and the checkup table on page 19 is in my opinion essential to have.

Growth should be charted on a down syndrome growth chart. As long as your child is following their curve, then all is fine. If they start to drop significantly or jump, then contact Joan or your consultant. Another great book for feeding in young children is "Supporting Feeding and Oral Development in Young Children". I have found this to be a great resource, and I dip in to it from time to time. Joan also recomended "The Down Syndrome Nutrition Handbook".

45.7% of babies born with down syndrome have Heart Problems.
20% of those are innocent murmurs
25% have an Atrioventricular Septal Defect
17% have an Atrial Septal Defect
15% have a Ventricular Septal Defect
11% have a Patent Ductus Areriosis
7% have an ASD VSD
2% have a PDA VSD
3% have a Pulmonary Hypertension
Check out Heart Children Ireland for explainations on these and support.

Thyroid screening is very important and should be carried out on an on going basis (at least once a year). A blood smple can be taken from just a finger prick. Underactive thyroid is the most common problem and it's side affects are tirdness, lethargy, over weight. About 4% of thyoid problems are caused by an over active thyroid and side affects are sweating and other things I can't remember......(sorry!). The improtant thing is too look out for changes in your childs energy levels, seemingly going backwards in terms of speech for example, check their growth chart, and then get it checked out.

Hearing screening is also very improtant. It can be done in three stages. The first is an otoscopy to test the external ear and the tympanic membrane. The second is a tympanometry to test the middle ear (eardrum and ossicle mobility). And the third is a DPOAE and measures cochlear function. Now, all this is absolute gobbledy goup to me, but basicly, there is a fourth test, the big brain wave one that does the job of the other three, which for the life of me I can't remember the name of. I would suggest you get that one for a little baby, but it's good to know that each section can be test seperatly. For more information on hearing loss and problems, check out the NDCS and "Down's Syndrome and Childhood Deafness".

50% of children will require glasses for their vision. Now hang on....I'd say 50% of the general popuation need glasses, and Cathal is going to get his shockingly bad eyesight from me anyway! Back to the point. Early detection in short & long sightedness, strabismus, cataract and glaucoma will prevent an unnecessary secondary handicap. So it's important to be on the look out for lazy eyes, squiting and anything that just dosen't look right.


I am going to take a break here, and continue this in a few days time! Stay tuned for more...


Joan Murphy
Clinical/ Research Nurse Specialist
Department of Paediatrics/ TCD
Phone: 01 8963785/ 4142000/ bleep 7193