Ds2 (9) daily headaches, nausea, dizziness - urgent MRI tomorrow

[CheeseandGherkins]

Sorry this is so long but I wanted to get everything down.

Ds2 has been getting daily headaches since January, we kept a headache diary for 3 weeks after seeing the dr and we realised they were happening a couple of times a day and lasting for 5-30 minutes. He's 9 years old.

Dr then had some bloods done and did an urgent referral for the rapid access clinic at hospital due to the headaches. This turned out to be to the hospital we don't usually use but I kept the appointment as I thought it would be faster. Bloods were all ok.

He wears glasses and we took him for another eye test to check his eyes and that was all fine, his prescription is the same as previously.

Hospital appointment was on Friday and it was all a farce. They said it was migraines, did no actual tests other than the nuero ones (which were normal) and prescribed sumitriptan. We still don't have this sorted as she prescribed 25mg and these don't exist. The pharmacist was very helpful and liaised with the hospital and the drug manufacturer but nothing was done, even after we spent 2 hours waiting in the chemist. The dr went home and the registrar was supposed to look at it, but nothing was done and even when we called the ward on Monday STILL nothing was done.

Looking back I wasn't happy with that diagnosis without any tests being done and called my gp again on Tuesday who saw us and called our usual hospital to see when they could see ds2 urgently.

I was contacted with a time to take him in yesterday, 11am, to the pau.

Over the past couple of weeks his headaches have worsened,
lasting for hours, same one lasting all day, waking up with them and being woken at night in pain. Calpol and nurofen are not helping at all. He has also developed other symptoms: nausea on waking and during the day, dizziness, blurred vision, balance issues and tiredness, among others. A number of times he's been crying in pain and this has also happened at school.

He was seen and assessed yesterday by the dr and consultant and although he presents as neurologically ok (apart from poor balance) the symptoms are worrying and they have arranged an MRI for him tomorrow morning. They sent him to the emergency eye dept while we were there to check his eyes again and everything was fine apart from one eye being weaker than the other.

We have to go back to the pau after his MRI where they will chase for the results and discuss with us.

I've googled and obviously I'm really worried that it's serious, what with him becoming worse. Could it really just be migraines causing all of this? Hoping he can keep still for the whole thing tomorrow. I've shown him videos of what it will look and sound like so hopefully he won't be too scared either.

Does anyone have any advice?

Was just coming on to say that I suffer from migraines and that mine came on this way at a similar age. I had every test going... Scans, drops put in eyes to dilate my pupils and look at them properly, glasses that I don't think I really needed, lots of physical and neurological tests. It wasn't until I was put on the right combination of drugs that it settled.

Fingers crossed for you and DS today. I know it's worrying

Ds2 had his MRI and was so brave, barely moved at all! It was a lot louder than I thought but also a lot quicker. I went in with him and it was only about 15 mins. We had initial results and they can't see any tumour.

He is going to need another MRI to look at his spinal cord though. They said It's unclear from that one whether there is narrowing of it so they need to discuss the full results and wait for the next MRI. I'll be contacted with an appointment for the next week or two.

In the mean time we have to call right away if his symptoms get worse or he develops any new ones. So good news and uncertainty. At least we know something and will hopefully know more soon.

So glad it went well. You must be relieved that the first hurdle is over.

Hope you all have a peaceful weekend.

That's good to hear that it went well. Well done to both of you. At least the uncertainty is being followed up quickly too by the sounds of it. All the best

Thanks for updating. It's good to hear they didn't find anything and the next scan will be done quickly.

We had a call last night and they did find something.

They said he has something called a chiari malformation which means that his brain is protruding from his skull and pushing on his spine. This is causing his symptoms and pain. We are being seen by neurosurgery and taking it from there. He's still having another MRI on his spine too. Strict instructions to take him straight in if he worsens at all or develops any kind of new symptoms.

No idea what is going to happen but it's scary

Oh you poor love, Cheese. I hope someone comes along soon who knows what this means and can reassure you.

Sending lots of strength to you. We are thinking of you.

Gosh, sorry to hear this news, hope you don't have too long to wait to see the neurosurgeon

I'm so sorry CheeseandGherkins. My son had surgery/radiation for a brain tumour, and I know the whole experience of diagnosis with anything of this nature is horrific and surreal. Do you have family support? Do you have other children?

Hi OP. I've been following your thread and when I saw your DS's diagnosis I wanted to post. A friend of mind was diagnosed with Chiari malformation as a child. She is in her 20s now and last week had surgery to release the pressure. It was very straightforward, she's had a few issues with the wound but all under control now. She's very active, has 5 dogs and does agility with them. Aside from the headaches you honestly wouldn't know she has anything wrong, and once things have settled after her surgery she hopefully won't suffer with the headaches anywhere near as much.

All the best to you, DS and the rest of your family.

So very sorry to hear this.
As I mentioned, my DD has 2 rare brain diagnoses and one of these is Chiari malformation. She's not had to have brain surgery for that yet (it is under a 'watchful wait') but has had surgery for the other thing she has. in our case the neurosurgeons and Drs caring for my DD have been amazing and although the prospect of brain surgery was frankly terrifying, they really can do amazing things and the surgery has had a really good effect. I don't know if you know the charity brain and spine foundation, but they might be of support to you.

I am glad you gave an answer but of course there are more questions. My daughter's malformation is a heterotopia often linked to seizures which she doesn't have "just" migraine symptoms.
The "good" thing is this is something known and not a malignant tumour or growing tumour. It is a shock to know something is there which up to now hasn't caused major symptoms. Hopefully the neurosurgeons can reassure you and come up with a way forward.

Look on charity websites. research who is best surgeon in this field. Knowledge is power.

Hope you are doing ok, OP

Have you been on paed ward before?

Just thinking that those of us who have could pass on some practical advice to help you as you might be feeling overwhelmed and it's hard to think of practicalities when you've had shocking news.

If you are experienced then please ignore the list below!

You might want to have a hospital bag packed if your son's symptoms do worsen and you have to go back in at short notice.

Here some things that I've found helpful for staying on paed wards:

• ear plugs for both you and DS (foam are best for sleeping) wards are noisy

• headphones as TV is not allowed on with volume in the evenings and you or DS may want to watch TV

• cash to buy TV time or credit card

• eye mask if you have trouble sleeping with lights on (the wards aren't really dark)

• short sleeve front button Pyjamas seem the easiest for dressing/manoeuvring with IV's and hospital gowns are unfamiliar

• DS's own pillow, cuddly toy, blankie

• if you will be on your own a small backpack with your valuables in it (phone, money, credit cards, DS electronics, charger, keys) is helpful as you can't leave them unattended on the ward and a backpack leaves your hands free

• hand wipes

• hand cream (hands get dry from all the washing/disinfecting)

• marker and labels to label your food for the fridge in the parent room (usually if it's not labelled it will be thrown out and rarely do they have labels)

-water bottle for DS

• file for paperwork/consent forms

Sorry I've not been back until now, it's been a hard weekend. Ds2 has had some new symptoms pop up and worsening of current ones so we're waiting for the hospital to call back to see if we need to do anything.

I'm hoping we hear about his next appointment and MRI soon, the waiting and not knowing is horrible.

Blackswan I'm sorry to hear about your son, how is he now? I have my parents who live just a couple of minutes away from us, and they have been and will be amazing. I have dh too, he is ds2's step dad, also have other children too.

Cupcakes that's good about your friend, I hope ds2 will have the same outcome. I hope he can continue to be an active and normal child.

Buntings Do you mind me asking if the other brain condition your daughter has is linked to her Chiari malformation? I'm wondering if ds2 also has syringomyelia because of the way the consultant described what he has to me. He's been having some neck and spine pain too and I'm hoping his next MRI will show why. I'm glad your daughter's surgery went well. Thanks for the link.

cestlavie Thank you, I have been doing a lot of research this weekend and I do intend to see who the best surgeons are also. I'm not sure what he would need to have done, if anything, yet, and I think this also depends on the results from his next MRI.

Snafu Thanks so much for the list, I haven't been on a paed ward before. I have had to go in with dcs on day wards but not overnight/any length of time.

I'm really not that happy about going back to the first hospital for the neurosurgeons as that is the one that misdiagnosed him the week previously. Different department so I'll see how it goes but I don't have any faith in them due to previous experiences. It's meant to be a great teaching hospital too but I've only ever had bad times there. I much prefer the one we had the MRI at but they don't have the department to deal with ds2 there.

Depending on what his MRI shows I might be asking to transfer elsewhere, even if it is a longer journey.

there seem to be various online support groups specific to chiari so hope you can get some advice from them.

you can certainly get second and third opinions so do so...

I hope DS symptoms stabilize. is he on a growth spurt? that could impact I guess.

I hope that your DS is doing OK.
No, my DDs other condition is unrelated as far as we know, and the symptoms are different. As you will have read though, syringomyelia is related to Chiari, so you may be right. I also remembered Ann Conroy Trust which is a specific Chiari charity.
Seeing the specialist can be very different to the general Drs on the wards. My DD also had an initial diagnosis of migraine, which I guess on reflection was the most likely probability-wise, so I don't mind, but always feel better seeing her neurosurgeon. Rare diseases are tricky because not all Drs that you come in contact with will even have heard of the condition. So I'd say give the neuro dept a chance, but definitely don't be afraid to ask questions eg about their experience specifically with Chiari.
Thinking of you. Waiting is hard. Stay strong.

CheeseandGherkins - it's very common unfortunately to be misdiagnosed, sometimes repeatedly. Our son had an MRI and given the all clear, and it took 3 more reviews of that scan to finally get the correct diagnosis. I was shaken by that and felt a lot of anger at the hospital which initially gave us a 'clean' scan. I'm sure that for some time I vowed we would never go to that original hospital again, but we have been back. Certainly never to have scans read. In your sake, as you say, it's a different department. They may cover for their colleagues ... but you find that even between hospitals.

Our son is doing incredibly well now. He's bright, active, curious, the same kid all round, with some meds thrown in. Children are very resilient.

Do speak with different surgeons - it's not easy to have repeated meetings but it really helps form your views.

How is everything cheese?

Oh how worrying for you.
I hope things are ok OP

I've only just seen this thread cheese but just wanted to say I hope your son is doing ok.

I have a Chiari malformation type 1. My pain and symptoms (same as your sons pretty much) have been controlled by meds for a long time, and I have lived a pretty much normal life. I have become unwell recently and may be looking at surgery now but I have other issues that are adding to that. I am 36, have children, a job, do sport etc.

There is a group on FB I belong to, a lot of members are in the U.S. but there are some of us from the UK, and a lot of parents of children with Chiari post on there. If you search in groups it's easy to find.

Please do pm me if you want to ask anything. I hope you are all doing ok.

I am so sorry your son is suffering and has received this diagnosis.

And I'm so angry with the first doctor who didn't assess him properly and who couldn't even be bothered to check if the tablet she prescribed existed!

Nobody expects doctors to know everything. And perhaps out of every 100 children who get seen only one of them has a serious problem. But that is what tests and scans are for - accurate diagnosis! Why would you not send a child for all the scans and tests you could if they present with severe, recurrent headaches? Thank goodness your son has a mum like you who persevered on his behalf.

I hope your son is doing ok.