Migraine

Can any of you share your experiences in dealing with acute migraine in young children. Ollie who is 6 has had a nightmare migraine over the last few days and the hospital neuro has basically said there is no treatment avaliable for a child his age and to just ride it out at home with only OTC phenergan and no pain relief. The expert neuro is on holidays at the moment and the hospital were unable to contact him.

It just sounds totally unbelievable to me that there is nothing they can do for Ollie.

We took him to the ER following the advice of Ollies Neuro on the second day of his migraine. He had vomited all day the first day and was in extreme pain. He slept 10 hours and then woke up the next morning in excruciating pain and still vomiting so DH and I took him to the childrens hospital.

The staff were fantasic and Ollie was seen immediately and given 3 different types of pain relief over 6 hours with very little effect on the pain. He was given Zofran(Ondansetron) for the vomiting which worked although he still felt nauseated. It was obvious he was in acute pain and the staff basically kept a close eye on him and constantly kept calling the doctor to find out what else they could do. The head doctor called the on call neuro who came in and basically asked why we had come to the ER when it was the worst place for a migraine. We said we wanted to stop him vomiting and try to get the pain under control plus Ollies neuro had said to come in.

He did a very thorough assesment of Ollie and reviewed his CT imaging. In the mean time the nurse was hanging aroung waiting to start some IV fluids and pain relief but the neuro said no, stop the pain relief...take the minimum dose of OTC phenergan to sedate him and go home and try to get him to sleep it off and call if he was still in pain tomorrow.

Zofran is only approved for use in kids with cancer here so the neuro told us we would not get that again. The neuro thought Ollies numbness and tingling were a reaction to the codine so no pain relief for him in the future and triptans are not an option because of the "complicated nature" of the migraine so until we find a preventative that works there is nothing.

DH and I were furious. Ollie was in extreme pain for 2 days, was dry retching and that is all there is.


We took Ollie home and by this stage he was feeling less pain and put him to bed. He slept 14 hours and woke up well so we did not call the neuro. At around 2.30 the pain started again. It only lasted about 15minutes so we had a quiet afternooon. At around 7 last night he said he had "bubbles in his eye and could not see out of it". We gave him phenergan and put him to bed around 8 and he was still saying he could not see out of his left eye but he had no pain.

He woke up this morning just fine and was able to see perfectly. Around 6 tonight he suddenly wanted to vomit again and had to go to bed. He is in pain but nothing like the pain of the last few days.

I really want some answers. Dh and I are going to grill Ollies neuro when he gets back and not leave without a plan for the acute attacks. Especially as we are meant to deal with this at home.

Sorry for the long rant but does anyone else have any thing to share with me about treatment for kids. It is almost unbearable to see him in such pain for so long and not be able to do anything. Surely this is not all modern medicine can offer us.?

The hospital neuro suggested "play therapy" and sleep were the only solutions. Who knows what "play therapy" involves!

We see Ollies neuro on the 21st of November so I am praying he has some suggestions.

Daisy

Daisy,

I don't have any experience with my children having Migraines and I can only imagine how frustrating this must be for you and your family. I'm glad to hear that Ollie is doing better this morning.

Is there any way to get in touch with Ollie's doctor before the 21st so this won't happen again? Maybe he can put a plan in place to prevent this situation from repeating itself?

My heart goes out to you!

By the way, no need to apologize for a long post, there's pleny of room here to share your story. That's what we're here for!

sigh

Okay. I understand treatment options are limited for the little guys because research is very sketchy and it's not sure what's safe to give them in terms of meds and dosage. I understand that there are ethical considerations that play into this, too, which further halts research. But, man oh man! It's certainly hard to be logical and accepting about that when you see the littlest ones suffer so! My heart goes out to you all. It's simply not fair.

What a cold and callous man that ER doc was to look at Ollie and refuse to even try and help. And then to dial things back and ultimately do a whole lot less? It floors me that some doctors have such little compassion that they can brush off and ignore small children who are dependent and defenseless. It gets my hackles up. I'm sorry you all were treated that way. I would think at minimum they would've focused on whether or not there were any dehydration issues from all the vomiting, and make sure they had that under control before wanting to just send him home.

I agree that you should try and contact the neuro ahead of your appointment. If nothing else, you can make it clear that you want to have a written, signed protocol in place for treatment at home. It should list meds and doses and should outline what to do and when, including when to head to the ER and what meds the neuro would prefer he be treated with. While ERs aren't obligated to follow such med orders, just having signed documentation from a neuro that can be presented can help an ER doc unfamiliar with your son's case and may lower resistance to treating him. If the ER doc can see what's worked in the past, and that a plan of action is in place that he can borrow from, he might be more willing to take it seriously and do more to help.

I do know that sleep is the ultimate migraine treatment for anyone, young or old. It's a natural abortive, with no side effects. It allows the nervous system to settle down and reset as well as recharge. It should always be one of our favorite abortive strategies.

Heck if I know what "play therapy" is. That part sounds goofy to me. You'll have to fill us in with what you find out about that one. I for one am curious.

I've certainly heard of play therapy, but only for children who have emotional issues, difficulty relating to adults or children, or difficulty expressing their feelings in words. I can't imagine what play therapy would do for a neurological disease.

I can't believe this Doctor. Is there any way that you can lodge a complaint against him!! Ollie is a little guy, how fast is it going to be before he is dehydrated. Does this Dr. beleieve in HMs? Is he discounting the paralysis that Ollie is having?

I hope that you find good treatment!!!

Love from Mary in NM

Oh, Daisy, my heart so goes out for you, your DH and Ollie. That sort of treatment (or lack of treatment) from an ER is just unacceptable, but unfortunately all too common.

The others have had some great suggestions, so I won't repeat them. I did want to add these wonderful ER forms that Teri developed. Perhaps Ollie's neuro would be willing to fill the physicians' one out.

Emergency Migraine and Headache Care - Forms To Help

Make sure when you do get in touch with Ollie's neuro to be very specific about the problems you had at the ER. He may have some suggestions on how to address it in the future, or even be willing to contact the hospital on your behalf. I would definitely find out how to lodge a complaint with the hospital as well.

Does Australia have anything like JCAHO here in the States? Among other things, JCAHO requires an ER patient's pain to be assessed and managed.

Migraine and Headache Pain - Do Hospitals Have To Treat It?

Hang in there, honey, and let us know how else we can help.

Hi daisy,

Cleary that "hospital neuro" doesn't have a clue. "Play therapy" may work for some children, with some conditions. But really!

Teri and I attended a session on Childhood Migraines at the headache conference last weekend with three of the top Pediatric Migraine specialists in the country. "Play therapy" was not brought up in the discussion. Quick effective treatment was their goal. As a matter of fact one of the doctors said he likes to see the pain reduced to zero in one hour if he can!!

Can you have the pediatric neuro you saw and liked, have a treatment plan written up for Ollie, so you can take it with you to the ER when need be? This way, there will be no questions on how to treat Ollie. We have some forms you can see HERE that may be helpful. They might have to be adjusted for AU.

Let me know what you think, ok?

Thanks for all the advice everyone. Heres an update.

We saw Ollies Neuro on Friday and discussed the ER visit. The Neuro has written up an IV treatment plan for Ollie and has made all the hospital Neuros aware of Ollies situation. From now on we are to ring the Neurology department(someone is on 24 hours a day) if we need emergency care and they will admit him for IV treatment when necessary.

Ollies Neuro did that straight away as the Hospital Neuro (Yes the same one we saw in the ER) rang me that afternoon to discuss Ollies admission to hospital next week for his MRI and lumber puncture. He was very nice on the phone to me and said that Ollies treatment has been scheduled as a priority.

We were pleased with the outcome.

Thanks for all the support. We are getting there bit by bit.