Our son, Jacob, was born with classical PKU, into a family where as a Medical Herbalist I only ever considered mainstream
medicine, or anything from the NHS as a last resort. For me it’s been a steep learning curve, forcing me to rethink my attitude towards drugs like Kuvan, and to truly appreciate the NHS which we entirely depend on to keep Jacob well. We’ve just celebrated his 3rd birthday and he’s thriving in every sense. Compared to many other PKU children we know, his levels remain fairly steady. He’s extremely bright, lively and very funny. His condition for the most part doesn’t seem to bother him at all, and given the circumstances we really couldn’t have it any better.
Herbs And PKU – Which Ones Work?
Having a background in Herbal Medicine, how could I not look into how herbs could potentially help people with PKU? It took such a long time to get over the shell shock of becoming a mum for the first time, and to a son with PKU that I barely thought about using herbs until about a year ago. Our second winter wasn’t a good one for viruses, with me spending several nights trying in vain to sleep on Jacob’s bedroom floor when he was ill. His levels bounced on numerous occasions as we struggled to keep control, using Probiotics and a good Children’s Multivitamin, neither of which seemed to make any difference. What did help enormously though was my essential oil diffuser, which we put on in his room shortly before bed and whilst he was asleep. With the help of my friend who’s an experienced Aromatherapist (you have to be careful with essential oils and little ones), the oils we used worked wonders at clearing his chest and helping him sleep. He’s prone to bronchiolitis and I’m sure it’s kept us out of hospital on numerous occasions.
The recurrent infections of Winter 2015/16 took quite a toll on us as a family, as well as on Jacob’s levels. Being even more tired than normal, managing a PKU toddler, a home, and a busy Herbal Medicine practice is all in all a recipe for disaster. Last year I was determined not to have a repeat of the previous winter, so I hatched a herbal treatment plan which started with giving him fairly hefty doses of Echinacea last September. He was given it in his night feed of Anamix infant, so he wouldn’t notice as it doesn’t taste great. Over time I reduced to just giving him drop doses every day, and we breezed through the rest of the winter without a single infection. Both our Dietician and the Consultant at Birmingham Children’s noticed the difference in his levels and overall wellbeing, and I was obviously very pleased to stay in my own bed! I do have a copy of our Phe levels comparing his first 3 winters and there’s a marked difference, but unfortunately I can’t get it into a format that works here.
Of course there have been occasions over the past year where Jacob’s levels have slipped upwards, some of which have been down to illness. We now only do weekly blood tests and being first time parents it’s hard to tell what’s normal child behaviour and what’s PKU, until the results confirm high levels. When we’re aware that his levels are up, and his behaviour is noticeably different, he’s now given herbs according to what we observe is going on. Herbal medicine has always been personalised according to what we see in the patient, and the real beauty of it is that even in seemingly hopeless situations, there’s always something you can do. For example, Wood Betony has proven particularly useful for when high levels have made him thrash around on the floor in distress, although that happens less nowadays. He doesn’t always tell us straight away, but Jacob will now let us know if he has a headache when we ask him, and again, Wood Betony seems to work very well. The problem as with many children has been getting him to take it! We’ve found the best way so far is to mix any tinctures we need into a spray bottle and spray it into his mouth undiluted, which he loves!. We use his ‘magic spray’ neat so only 1-2 squirts are needed in an emergency and within a couple of minutes he says his head feels better. On the occasions when he wouldn’t let us near him, we’ve spritzed it in his direction, so that he inhales the mist. I have to say that this is a totally unconventional way of administering herbs, and I have no idea how effective it really is, but we do know that steam inhalations and smoking herbs both work. What I’ve found is that for a little one the sheer novelty of being spritzed with something that smells interesting is enough of a distraction to allow us as parents to regain some control over the situation. Other useful herbs we’ve found so far in treating symptomatically include Lemon Balm and Valerian, both of which are instantly calming. I’ve tried Eleuthrococcus when he’s lost his appetite as it reduces the rate at which muscle is broken down, but we have no way of knowing how effective this has been. I’ve also recently discovered that Nettle is used to improve protein metabolism in various ways, so that’s my next project!
I have a BSc in Herbal Medicine, so scientific research into herbs played quite a big part in my training. Sadly, research into both herbal medicine and PKU is hugely underfunded, so it’s pretty hopeless using science to tell us which herbs may be helpful in PKU. But herbal medicine has managed perfectly well without science for thousands of years. Having Jacob has had to take me right away from the science and back to the essence of herbal medicine – treating the whole person according to what’s going on for them at the time. It’s getting easier as he gets older and can better describe how he’s feeling, and herbal medicine is certainly proving a lifeline for us. Maybe it could for you too?.
Encouraging Your PKU Child To Use Herbal Medicine
Unlike many of his friends, Jacob has never taken antibiotics, and flatly refuses to have Calpol, preferring herbal medicine instead. He was first introduced to herbal teas when he was a baby, and now asks for his ‘magic spray’ when he needs it. It’s never too late to get your child started, especially if they can get involved in picking the plants and making their own medicine. We’re lucky that the elderberries are out early this year, and we still have some of the summer holidays left to go elderberry picking. This is one herb which does have some research behind it in preventing colds and other respiratory tract infections, plus the syrup tastes delicious! It’s safe even for young children with PKU and taken every day will go a long way towards keeping them well this winter. The recipe is here if you’d like it.
Would you like some free advice on herbal management of PKU? Get in touch now.