Dear Parents,
We know how worried you must be right now. But our immediate advice to you is don’t allow the diagnosis to come between you. Enjoy your new baby. He or she may have additional needs, so take each day as it comes. He or she will still be the cutest thing you’ve ever seen.
You’ve had a diagnosis of Sturge Weber Syndrome. This is something that all of us here have dealt with at some point, and I can tell you that, although it may seem terrible at first, it does get easier as you learn what you are dealing with. Sturge Weber can be complex and fluid, and some stages may see symptoms growing or lessening in severity as your child grows. You should be referred to a specialist who will help you along the way.
Sturge Weber has a huge spectrum of conditions and issues; all or some of which can affect you in varying degrees. The most important thing is for you to know that you are not alone, and there is a small army of caring people all dedicated to helping however possible. Do some digging around on this site for information on symptoms, issues and medications, etc. We also have a Facebook page, run by volunteer parents who are very community minded. If you ask a question, someone will always try to help.
Get support when and how you need it: whether you need information on medical issues, which benefits you may be entitled to, or support for your mental health, get as much as you can, and be prepared to have to ask. Some local authorities and local health authorities are more helpful than others.
Be the Tiger Mummy / Daddy. No one will care about your child as much as you, and that means that you may have to insist that something is done when you feel it is important. Trust your gut. You know when your child is out of sorts, not right, etc. And if in doubt, be brave enough to call for an ambulance. No one is going to reprimand a worried parent. Better safe than sorry.
We look forward to meeting you. Xx
We have a 9 year old boy called Callum with Sturge Weber. Callum has been resistant to many of the anti-epilepsy drugs, and we have had many blue-lighted trips to hospital over the years. So many in fact, that we know a couple of Paramedics on first name terms now. He has varied from 50+ seizures in a day, to seizures lasting 1.5 hours, to an induced coma for several days. He’s pesky!
We have a relatively well organised system in our house for blue light events: each one of us has specific roles which all start the second someone yells the word “seizure!”
My daughter Lily, who is 2 years older than Callum, has 4 specific jobs to do. She calls her Grandparents and tells them to come over and collect her, and then she goes and packs an overnight bag. Then she opens the front door and waits for the ambulance and Grandparents to arrive. She waves them in and lets us know that they have arrived, and grabs the hospital bag. (More on that later).
I would love nothing more than to give her comfort and attention during these upsetting times, but it just isn’t feasible. We decided to give her responsibilities during seizures, as she was incredibly upset and frightened at seeing Callum seizing; these jobs serve to give her a distraction as well as a purpose. She feels better knowing that her tasks are crucial, and it gives her a bit of control over what is happening. She does very well with it all, and it is a source of pride for her.
Steve, my husband, is in charge of phoning the emergency services, and relaying important information to them whilst help is being organised. I am in charge of first aid, timing the seizure, measuring breathing, etc., giving rescue meds and helping Callum if/when he starts to recover.
Back to the hospital bag. Yes, it is pre-packed, exactly as you would have it when pregnant, only the contents differ. Mine is the size of a large handbag, as ambulances are tight for space. If your loved one is going into hospital a lot, this list may be quite helpful. There’s nothing worse than being admitted to hospital and realising that you have no money / clean pants / phone charger. I have learned all these lessons the hard way.
In my hospital bag, I have:
What I pack will easily last a couple of days, as facilities at hospitals vary wildly. And in the midst of the Covid epidemic, hubby isn’t able to come with fresh supplies, so this is sensible. Pack to suit your needs; generally your little one will be catered for but you will not. However, if your child relies on special items such as noise cancelling headphones or a particular comforter, you will need to get these in the bag just in case. (Duplicates save this having to be thought about mid-emergency).
Clearly, you will need to adjust our system to suit your household; if you are a single parent, do you have someone who can watch siblings? Do you need to give a key to someone who can feed your pets? All this stuff is best thought about before an emergency – being prepared helps you to cope better. Good luck, and Sturge Weber UK are here if you need us.
