The review was conducted to assess the benefits and potential risks of over-the-counter (OTC) cough and cold remedies that are currently available on the market for children aged 12 and under.

The MHRA assessed the following ingredients in OTC medications:

Antitussives (cough suppressants): dextromethorphan and pholcodine
Expectorants (for productive coughs): guaifenesin and ipecacuanha
Nasal decongestants: ephedrine, oxymetazoline, phenylephrine, pseudoephedrine and xylometazoline
Antihistamines: brompheniramine, chlorphenamine, diphenhydramine, doxylamine, promethazine and triprolidine

They concluded that:

There is no robust evidence that cold and cough medicines containing the above ingredients work. Given that there have been some reports of harm with these ingredients, the risks of cough and cold medicines containing them outweigh the benefits;

For children aged over 6 years, the risk from these ingredients is reduced because: they suffer from cough and cold less frequently and consequently require medicines less often; with increased age and size, they tolerate the medicines better; and they can say if the medicine is working. For these reasons cold and cough medicines containing the above ingredients can continue to be available for these older children, but only through pharmacies;

Further research is required on how effective these products are in children over 6 years.

The upshot:

Don’t panic! As you’ll have read, they are still available and will remain indicated for children 6 and over (albeit more stringently). It’s simply a review to weed out unnecessary, and to be quite honest, questionable medications that appear to offer little benefit when weighed up against the potential risks to children under 6. In some cases, they have been known to cause side effects such as allergic reactions, effects on sleep and hallucinations.

Why have they decided to wait until now?

The MHRA is working hard to improve the availability of high-quality, ethically researched and properly authorised medicines for children.

OTC cold and cough remedies, which have been in use for a very long time, were introduced when the requirement to demonstrate safety and efficacy was less robust compared to today’s standards. However, over the years, the products have raised no special concern about safety.

What should I do?

Always consult your General Practioner/Doctor if you are concerned about the health of your child. But remember, when kids catch coughs and colds, most of the time all you need to do is follow the time old premise that nature will sort itself out!

We usually stick to Calpol/Calprofen (paracetamol/ibuprofen for kids) to manage the headaches/sore throats/temperature and let nature take its course with the rest. Just make sure you follow the guide on the packet.

Here is the full MHRA Review on Cough and Cold Remedies for Children.

For the latest advice on all aspects of child health, immunisation, healthy eating, childhood illnesses and child safety, the Department of Health have produced an easy-to-use practical guide for parents called Birth to Five.

Ella has quadriplegic cerebral palsy (all 4 limbs affected) with her upper arms affected more so than the legs. However, in quadriplegia, it’s usually the other way round, legs affected more than arms. I often wonder whether she actually has double hemiplegia, but the fact still remains that it’s hard work for her to do things.

The standing frame is excellent for helping to strengthen her neck muscles and experience different arm positions for playing with toys. The poor head control needs improving before she can begin to strengthen her trunk and stabilise some of the other movements. She certainly knows what she wants to do, whether it’s grabbing or moving an object; it’s the helping her to do it that will take time.

One aspect of the poor head control involves a preference for turning her head to the right. In hindsight, we remember she used to do this a hell of a lot during the months she spent in the NICU incubators. Since then, many physiotherapists have commented that they wish (as a profession) they had more input into helping babies that are holed up in NICU, but I guess it’s just one of those things that’s overlooked when preemies are fighting for life.

The good news is that Ella does have a good range of movement in her neck, so it’s important that we encourange her to roll her head left as often as possible. One of the best ways of doing this is to simply ensure that activities/play/objects are taking place to the left of her body. Luckily for me, Ella is a born footy fan, so an excellent way is to shove the footy on and ensure she has to turn left to see it! She also loves Delia Smith; it was on the other day and I have never seen her be completely silent for an hour other than when she’s asleep! And before I get shouted at, no, I don’t make Ella watch the TV all day!

More recently, we obtained a Squiggles Seating System. Again, another excellent piece of kit for providing support whilst sitting to play/eat etc., although we haven’t used it for feeding yet, as she sits reasonably well in a standard high chair and can eat alongside her brother.

The next thing is the sleep system, but I’ll post about that once it’s in a we’ve tried it out.

Sorrow and pity are natural responses to disability in children – but they are misplaced, researchers say.

There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do – with all its joys and sadnesses, successes and failures.

Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.

A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.

Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.

Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”

In earlier research, he had shown that disabled children participated less in activities than other children, because of the restrictions imposed by their disability. But they were no less happy. The new study showed their quality of life, as reported by themselves, was no different. “A father came up to me after we reported the results and said, ‘You have already made me think differently about my child’,” Professor Colver said.

The findings reinforced the need for disabled children to be integrated into society, he added. “The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children.”

Julie Johnson of Gateshead whose 10-year-old son, Nathan, was diagnosed with cerebral palsy at four months, said: “I treat Nathan and his brother the same and I have found that both of them rise to their own challenges. Nathan has problems with his left hand but quite simple steps have enabled him to attend a mainstream school. He is an active, happy child.”

Nathan said: “I like all my teachers and I have a big group of friends at school. I have a special board which helps me to write neater. At playtime we play tag and football.”

Some of you may have seen this in the news over the past couple of days …

Amelia is thought to be the world’s first surviving sub-22 week micro preemie. She was delivered on October 24th 2006 by Caeserian section at an astonishing 21 weeks and six days, weighing just 260 grams and only slightly longer than a ball point pen (9.5 inches).

Some of you will know these pictures all too well if you’ve ever had to experience the delights of the NICU rollercoaster. Our twins were extremely premature at 26 weeks and survived, but 22 weeks is phenomenal. From all accounts, she’s a little fighter and has now gone home after 4 months in NICU. Absolutlely amazing, and I am so happy for the parents that their first major hurdle has now come to an end. It will almost definitely be the first of many hurdles having been born this early, but only time will tell.

Those tiny little feet are hard to imagine, but this is what a micro preemie looks like. The redness is due to the fact that they only have one layer of skin (instead of seven), and it’s like tissue paper.

To put it into context, these are the survival rates for extremely premature babies:

Babies born at 25 weeks have a 50% chance of survival
Babies born at 24 weeks have a 39% chance of survival
Babies born at 23 weeks have a 17% chance of survival
Babies born at 22 weeks have only a 2% chance of survival …

This latest story has, however, raised even more controversy over the debates surrounding the upper limit for abortions. And then there are the significant issues that can unfortunately come with extreme prematurity (this blog being the subject of one of them). But I don’t want to get into all of that in this post.

This post is to celebrate something amazing … and I really hope that Amelia goes from strength to strength. To beat survival odds of 2%, she deserves everything that life can give …

The kids have had a bad run the past couple of weeks with yet more chest infections and colds. The problem is always amplified by their chronic lung disease from being intubated for so long in NICU. A new born baby is defined as having chronic lung disease if they have been oxygen dependent on a ventilator for at least 28 days from birth.

When infection gets into Max and Ella’s lungs, it hits them for six, and they cough for England. In the past they’ve needed additional help with extra O2 when having a coughing fit, but they are getting stronger and stronger at being able to fight it on their own now. We’re just grateful that we finally got the go ahead last November for their Synagis shots (palivizumab) to protect against Respiratory Syncytial Virus (RSV).

RSV usually causes mild cold-like symptoms in adults and children. But it can make premature babies and children with certain other medical conditions very sick. In England, 28 per 1000 hospital admissions in children aged under 1 year are attributed to RSV each year, and in the US, about 125,000 infants are hospitalised with severe RSV infections. It is the leading cause of infant hospitalisation and is a significant problem for high-risk babies and children.

Full term babies get antibodies from their mothers during pregnancy, and these help to fight RSV and other viruses. But babies born prematurely often do not get enough antibodies before birth. Each dose of the Synagis vaccine gives them enough RSV-specific antibodies to help fight RSV infection for about 30 days, but at £4,000 a course, it’s not cheap! Doctors have to get special sanction from the Primary Care Trust Board to give the go ahead on every baby that needs it. Madness!

Anyway, their vaccinations seem to be working at the moment as they’ve not had anything more than the colds/chest infections (touch wood).

Sleep has obviously been a problem, and it has been a big struggle helping them to settle at night. Ella has usually been the one to have problems with sleeping, but for a few weeks now, she has been taking Vallergan (an anti-histamine with sedative properties). Seems to do be doing the trick at the moment …

Think I may try some tonight!

Okay, I’ve been slack! Motivation hit an all time low and I apologise for not updating for so long.

I hadn’t realised this blog had gained as many readers as it has in such a short space of time. To be honest, I didn’t know what to expect when I first started this blog – so thank you for the many kind emails I have received from readers of the blog.

November saw our little miracles reaching their first birthday! It’s whizzed by and seems so long ago now that they were stuck in NICU fighting for their lives. It’s not until you look at the pictures to see how much they’ve changed in such a short space of time that you realise how far they’ve come. We had a quiet family affair and as you can imagine, the house was transformed into a Toys ‘R Us showroom!!!

December was a massive upheaval for us as we moved into our new home; no small task! But it’s great to finally be settled again having spent a few months waiting for the whole process to move along.

The kids have settled in nicely, and most importantly, we seem to have moved past the nightmare couple of months in October/November. Ella has had a total transformation. She has blossomed into bright and happy little bundle of joy! Now that her reflux and constipation issues are more under control, her personality is really coming out, and it’s such a relief to see her enjoying life now without all of the pain and discomfort she was clearly in toward the back end of last year. She smiles all the time (well not all the time!), she laughs, she listens more and more now that her hearing is recovering, and it’s like she has suddenly woken up to everything around her.

Her tone is much better, and the Occupational Therapy (OT), Physiotherapy (PT) and Conductive Learning (CL) she has received over the last few months have brought her on leaps and bounds. She shows such a drive in wanting to overcome her limitations that we’re astounded. I’ll do some retrospective updating in the next few posts to talk about it all in more depth.

So Happy New Year once again … onwards and upwards!

However, this post is about the nightmare Ella has had over the past 3 and a half weeks. When she fell ill, we were concerned about her breathing as she only recently came off the oxygen support required for the chronic lung disease.

So we took her to the GP’s and she was diagnosed with a throat infection. A weeks worth of Penicillin had no result and everything remained the same.

On the day that Max went to GOS, Ella had one of the worst days yet. She was crying and screaming inconsolably for most of the day, and when I got home, my mother-in-law was trying to sort out the cannulae to get her back on the O2.

The entire night was hideous. Ella doesn’t sleep well at the best of times, but this was something else. The next day I took her to A&E for assessment.

I thought, “As soon as we arrive, they’ll see exactly how much distress she’s in”. Guess what, the little monkey decided that as soon as we arrived in A&E, she would be all sweetness and smiles! Unbelievable.

Anyway, having sat there for 2 hours before seeing a nurse, I then had to wait another couple of hours to see a medical student, and then finally a registrar!

[Quick rant: what annoys me most is that we have to recount her history every single time we go to A&E. I'd be there all day if I had to do that; why not go and fetch that big fat library of files you have on her from the 5 month stay in NICU?!]

So, having reviewed her, it was decided that her throat infection must be viral as the antibiotics hadn’t worked (that old chestnut!). In fairness, it was the most likely reason. So we took her home and continued to give Calpol for pain relief.

Nothing changed.

Back to A&E, through the same old routine, and this time she got to see one of the consultants. After an extensive neurological and general checkup (including x-rays), it was decided that it must be her acid reflux. Another two or three days passed and we didn’t see any changes.

We then got a call to go back for a review with a radiologist consultant.

To cut a long story short, he had noticed some abnormal gaseous patterns in her bowel. They wanted to rule out a diaphragm perforation, but it turned out that she had a faecal impaction (hard poo blocking the bowel). Constipation is quite common with CP because the guts are usually more sluggish.

After several visits, we finally started to get to the bottom of it (excuse the pun). You have to persist with the health professionals. It can be a long slog to find out what’s going on, but you mustn’t be deterred.

Finally, Ella is starting to settle a bit now having been on Movicol for the impaction and continuing the Lactulose for daily regulation.

How severe will it be?
Is Ella going to be diplegic, hemiplegic, quadraplegic?
How will she cope?
How will we cope (both together and with Ella)?
What happens to her when we’re gone (not too soon hopefully!)

Some thoughts were purely selfish; we’re only human. Some thoughts were misdirected rage, looking for someone or something to blame etc., some were of despair.

As the time passes, it’s becoming easier.

I’m fine! … why am I moaning … I don’t have CP. I suppose it’s because we all want the best for our kids, and CP doesn’t fit in with that. Of course it doesn’t. But one thing resounds every time I look at the both of them:

As 26 weeker preemies, it’s a miracle they’re even here. 5 months of hell in NICU, with doctors telling you that your kids are unlikely to make it through the night is enough to put your personal angst well and truly in place!

Most of the thoughts you begin to realise are selfish ones, and it certainly starts to put other aspects of your life into perspective. It’s Ella who counts at the end of the day, and we owe it to her to do whatever we can to make her life as happy and enriched as we can.

Unfortunately, Ella was also classified as severely deaf along with her brother back in May. This made things even worse when I found out about her CP diagnosis. I will never forget the moment when I asked the following question at one of their review clinics:

“If Ella is deaf and she has CP, how will she be able to communicate?”. He simply replied, “The worst case scenario is that you’re looking at life long care in a wheelchair”.

He told it how it was, but it really was the worst case scenario, and the truth is, you just don’t know how it will pan out until they’re around 18 months+. Even then, it’s an unwritten book.

At the time, I went white, felt sick and the room consisting of my wife and 5 of the community help team went deathly silent. That’s the only way I can describe it. My wife asked another question and we moved on.

4 months on, Ella is now showing signs of recovering from her hearing loss, and she’s making great strides improving on many of the things she was unable to do. We only suspected CP when she was lagging behind Max in her developmental progression.

At the end of the day, she’s showing an overwhelming desire to overcome the problems that hinder her, and it’s this that we will help her strive to achieve.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. the brain damage does not get worse). However, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same.

Cerebral palsy is not infectious. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function. Ella and her twin brother Max were born extremely prematurely at just 26 weeks gestation (3 months early), and I intend to talk about this in more detail as time progresses. Extreme prematurity (and prematurity in general) present an increased risk of developing cerebral palsy.

Unfortunately, during Ella’s stay in the various Neonatal Intensive Care Units (NICU) that saved her life, she suffered extensive brain damage as a result of a fungal infection/haemorrhaging (the subject of much debate between the hospitals that looked after her!).

Miraculously, and beyond all initial expectations, our little soldiers, Max and Ella, came home to us in March 2006.

So to kick this off, it’s now 4 months since Ella was diagnosed as showing early signs of cerebral palsy (CP).

As with all things web, it’s very easy to get bogged down by information overload. I know, I’ve been there several times! I’m hoping this blog will help to provide a central resource for other parents wanting to know more about CP, and I hope to share our personal experiences with Ella as an ongoing journal.

Please feel free to email and ask questions!