Our Journey With PKU

Today is my son’s 2nd birthday. Born by emergency C section at 4.35am on 12th August, we stayed in hospital for 3 days. Whilst he fed as soon as he arrived without any problems, he struggled more and more with eating as time went by. I spoke to every breastfeeding counsellor as they came on shift and was reassured that we’d both get the hang of it. I also spend a whole night up trying to get him to feed, but didn’t make a lot of progress. Despite that he passed all his checks with flying colours and we took him home.

The grandparents visited and of course, adored him. The Midwife came to do his heel prick and weigh him at a week old and again, he was given a clean bill of health. We later found out that she’d miscalculated his weight and he’d lost enough to be taken back into hospital for extra feeding. That was a lucky escape.

We Knew Something Was Wrong

But his dad and I began to realise that all was not well. Feeding was becoming more and more of a problem. He’d take a couple of mouthfuls and then seem to completely forget what he was doing. He had a vacant look about him, and there was something else niggling me too, but I couldn’t work out what it was. Bizarrely throughout that time I kept thinking of an old school friend of mine who I hadn’t seen for over 20 years, and how she always talked about her sister (who I’d never met) with PKU. I had never looked into what PKU was in all that time so I had no idea what it was.

Jacob was our first child and being new to parenthood we really didn’t know what was ‘normal’ and what wasn’t. We weren’t too worried as all the Midwives and Health Visitors had said he was fine, until at 16 days old, a nurse from Birmingham Children’s Hospital arrived with our Health Visitor to tell us he had PKU. Any family who’s been through the same will know what that’s like. The shock sent us reeling and despite the excellent care we had, took months for us to come to terms with it.

The nurse thankfully turned up with 6 bottles of protein replacement formula already made, a breast pump and instructions on how to get his levels quickly down from 3000 and something to 100 and something. Protein replacement gives PKU patients all the protein they need to stay healthy, without the Phenylalanine (Phe) which they can’t break down properly. It helps to keep their Phe levels stable, and enables them to eat very small amounts of protein safely. We started Jacob on it straight away, but I couldn’t hold him for 4 days because I couldn’t bear him trying to feed every time I picked him up. Not being able to hold your new baby is hard, and it led to confusion as my partner thought I was rejecting him. Long term the plan was to combination feed so that he’d have his prescribed amount of protein replacement first, and then a breastfeed to top up. It worked until he self weaned at 8 months and although it was hard going, I’m really pleased we stuck with it.

The vacant looks disappeared quickly, but the niggling thing continued to niggle until a couple of weeks later when I was watching him and realised what it was. He was unable to move his left side as well as his right. Working in healthcare I knew that it was probably down to brain damage, and once I’d stopped sobbing, got an emergency appointment with his GP. Again, all his checks were fine and he was fine again within another couple of weeks.

A New Perspective

IMG_3120[1]Two years on he’s a happy, healthy, and very lively little lad. He’s extremely bright too, constantly surprising us both with what he can say and do, so we have no concerns with his IQ. But our journey so far has brought added challenges for me both personally and professionally. When I was 14 I lost faith in mainstream medicine as it was unable to help me with my illness, and to cut a long story short, went off to University and got an Honours Degree in Herbal Medicine. Over the years I’ve come to realise that actually, whilst mainstream medicine is still very limited in treating chronic conditions, it’s also lifesaving when you really need it. Goodness knows what would have happened without our emergency C section, and we’re eternally grateful to be living in a country where PKU is not only screened for, but we get food on prescription too. Faith in the NHS has been well and truly restored. Even better, after all my moving about around the country, I decide to settle and have a family in the West Midlands, so we’re under the amazing Anita MacDonald and her team at Birmingham Children’s Hospital. Under the circumstances we couldn’t be luckier.

But given the fact that there are only a few hundred Medical Herbalists in the UK, and 1 in 10,000 babies born with PKU, that’s quite a coincidence. How ironic that someone who’s dedicated their life to the practice of Herbal Medicine has a child who’s condition can’t be helped by it. Or maybe it can?

Medical Herbalists including me quite often see patients with genetic conditions and we often have more success than you might expect. My stepmother has another one: Haemochromatosis. Whilst we’ll never know for sure, herbal and nutritional support certainly seems to have helped reduce her ferritin, improve her energy levels, and so far prevent a second stroke and heart attack. Where Jacob is concerned, his Phe levels only really seem to increase when he’s ill, and can herbal medicine help with that? Absolutely. It’s what we do all the time.

So far we’ve had a tummy bug, numerous colds, fever, bronchiolitis, tonsillitis and two stays in hospital. I’m no expert in children’s health or in parenting, but I know enough to say that herbal medicine can be extremely effective in treating sick children and helping them to stay well. Since Jacob was born I’ve become quite expert at stopping any bugs before they start but on a couple of occasions I’ve missed the boat and had to deal with a full on infection. Jacob flatly refuses to take Calpol, but he’ll happily guzzle herbal teas which will do the same thing. He also loves having the essential oil diffuser on in his room, which has been a godsend on the nights he’s had trouble breathing and nothing else has worked.

There’s not enough research into PKU in general, and not surprisingly, none at all into herbs and PKU. Whilst it’s really frustrating, thankfully it’s not a barrier to herbal treatment. Herbal medicine was doing perfectly well for thousands of years before science came along. It’s definitely interesting to know how our herbs are working but actually I’m finding that the more science we have around herbs, the more we’re losing sight of what herbal medicine is really about. The essence of herbal medicine is using the whole herb to treat the whole person, rather than individual chemicals to treat just one part. Herbs work on the underlying causes of illness, and even after 17 years in practice, they still amaze me with what they can do.

Obviously herbs are not a replacement for the PKU diet, and I wouldn’t suggest that anyone with PKU PKU, herbal medicine, Phenylketonuria, Phenylalaninedeviates from their Dietician’s advice. However, there’s plenty of room for herbal treatment to make life with PKU easier. Herbs can help prevent illness,  help prevent muscle breakdown, and although I’ve yet to try, I’m sure they can help those with high levels to feel more comfortable.  The lovely thing about Herbal Medicine is that it’s tailored exactly to the patient’s needs at the time. It seems that high levels affect each person differently, and some hardly at all. Someone who’s high levels are making them feeling agitated will need totally different herbs to someone who feels lethargic. Herbal medicine in the management of PKU is already proving itself to me in helping Jacob, but some herbs contain small amounts of protein, and others I wouldn’t use when levels are high. I don’t put herbal teas into his formula anymore either, as they turn it grey and he refuses to drink them. As he gets older I’m constantly having to find new ways with the herbs, and learning as I go along.

So as a PKU parent wanting to support all families with PKU, and as a Herbalist working in completely uncharted territory, I thought I’d write the occasional blog for anyone who may be interested. I hope you find them useful and I’d love to hear how you get on if you decide to try anything.

What Is PKU? Find out here. 

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