Headaches?

General discussion regarding Kawasaki disease
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askdillon
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Headaches?

Post by askdillon » Thu Jan 27, 2011 2:50 pm

My 7 year old daughter, Molly, was diagnosed with KD when she was 3 months old, in 2004. She did have giant aneurysms in both coronary arteries, which subsequently returned to a "normal" size within the first few months of diagnosis, and with treatments of iViG and prednisone. We still take daily aspirin, and have yearly echos and EKGs.

My current concern is that Molly has had very frequent headaches for years now. They began in 2007, and got much worse through 2009, to the point that she had daily headaches. We've seen optometrists, neurologists, ENTs and allergists. No one has an answer for us as to what is going on with her, yet the headaches continue. They currently are not daily, but she averages 8-10 per month or so now. I can't help but wonder if there is a connection, perhaps cerebral vasculitis related to the coronary vasculitis?! I don't know, but I am curious if there are others who've experienced similar issues.

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Joe
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Re: Headaches?

Post by Joe » Thu Jan 27, 2011 9:30 pm

Have you looked at the possibility of a food allergy?

What kind of headaches are they? Tension, migraine?

UKMum
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Re: Headaches?

Post by UKMum » Fri Jan 28, 2011 8:38 am

Sorry that your daughter is suffering.

Our son had what looks like Atypical Kawasaki disease in 2003 age 2 , it was misdiagnosed so he received no treatment. He has been left with some coronary dilation and he is now on a 3 year recall for echocardiograms.

He has suffered with severe migraines since the age of 3 and we have often wondered if their is a connection too, but whenever i have mentioned it to the paed who he sees for the migraine attacks she just shakes her head and says no!

I would have a look at her diet and keep a food diary , we found that tomatoes are a trigger for Aidan.

His other triggers are stress, skipped/late meals , and late nights.

Hope that may be of some help.

askdillon
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Re: Headaches?

Post by askdillon » Wed Feb 23, 2011 2:49 pm

Her headaches are varied. We've seen numerous doctors in the last three years, and still have no answers. Currently, Molly has had a headache nonstop since Saturday (5 days) and a fever for three days. No other symptoms. No known cause. We had extensive bloodwork drawn at the hospital today, but that will take a few days for results. She is scheduled for an MRI/MRA on Monday.

There has been no consistent food trigger, environmental trigger, or any other consistent trigger at all. The only knowledge I have is that it isn't allergies, it isn't always migraine, and the headaches are not always in the same location of her head. It's very curious and I wish I had answers for her.

askdillon
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Re: Headaches?

Post by askdillon » Wed Mar 02, 2011 8:19 pm

So the results are in.... we had the MRI and MRA.... Molly has stenosis of the cerebral artery. It is likely caused from cerebral vasculitis, apparently secondary to KD. I suspected this for three years, but have been told numerous times that it just doesn't happen that way. Apparently it does.

Molly is scheduled with the neurosurgeon for further tests and evaluation next week.

KCLP
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Re: Headaches?

Post by KCLP » Thu Mar 03, 2011 8:15 am

Askdillon,

I applaud you for "listening" to your daughter and following - up on her complaints.

You are a fantastic parent and provide courage to those of us who sometimes give up on the follow through.

Many of us on this forum are particulary interested in the long term effects on ALL the vascular systems post KD.

This must be a bitter sweet for you. Finially you have an answer, yet not one you wanted.

I wish you and your daughter the absolute best. Please continue to post on the information learned and her health.

Thanks so much,

KCLP
Last edited by KCLP on Wed Mar 26, 2014 4:43 pm, edited 1 time in total.

Momcat
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Re: Headaches?

Post by Momcat » Fri Mar 04, 2011 2:39 am

Askdillon,
Oh wow, something some of us have always wondered about. I am happy you found the answer, although it is certainly not what you wanted to hear. Please inform us what this means, where is this artery and is there anything they can do about it? So many of these KD kids have had headache issues and personality issues....... For sure we know this system wide vasculitis can play games in more than just the heart, even though it is rare. Maybe it is rare just to find out ... not something they really study. I hope Molly can get some relief. Let us know if you find any studies of anyone checking on this regarding KD research. All the best to you and Molly. And good for you for tracking it down!

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Re: Headaches?

Post by UKMum » Sat Mar 05, 2011 6:31 am

Sorry to hear about the problems with your daughter, hope you can get some help with her.

I will be interested to hear how things go as our son has severe migraines since having KD . He has had both a CT and MRI scan and both were normal so we have been lucky.

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Re: Headaches?

Post by practicing patience » Sun Mar 06, 2011 11:45 pm

WELL DONE! I am turning stone after stone looking for a connection between KD and vasculitis in other systems - good for you for finding an answer! Thinking of you both, and wishing Molly a speedy recovery.

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Re: Headaches?

Post by missyklat » Tue Mar 22, 2011 1:46 pm

Thank you all for the wonderful input. My son was diagnosed with KD in Feb 2008, he was 18 months old. We started treatment a week after symptoms started because my pediatrician continued to push it off as a bad cold/viral infection because of the fevers. Long story short, we spent a week in the hospital and he received IVIG. He is now almost 5 years old (this June) and he has recently started complaining of headaches. I immediately thought of his KD. He has had low grade fevers on and off for almost a week now, and complains daily of headaches. He has had decreased appetite and is irritable. I'm glad I found this website, I too was suspicious of a possible connection. I will be making an appointment for him to be evaluated. Thank you all again for the input... I too hope that all goes well for Molly!

ktketner
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Re: Headaches?

Post by ktketner » Tue Jan 10, 2012 3:44 pm

I had kd when I was 5, I am now 21. I started having daily migraines at the age of 13.

I have a few food triggers that I try to avoid, but it is never a consistent trigger.
If I don't have caffeine, I will absolutely have a bad one.
Skipped/late meals are also a big one, as well as late nights.


I have had numerous tests done, and on paper I am perfect, but the reality is that I have been suffering for years.
If anyone finds a recommended drug (i've been on many with no help) please pass it along

Kiwi mum
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Re: Headaches?

Post by Kiwi mum » Thu Mar 15, 2012 3:41 am

I love coming back to this site even 6 years on. My DD had KD at 4 she is now 10 years old but has had headaches for the past 2+ years we have had her eyes checked and glassed has helped a little, she is on a restricted diet due to food allergies, and we had not found a trigger in food. She has just had the past 2 days off school with a headache flare, she always has a background headache of 4 out of 10 but it flares from time to time. The reason I came back to night was to look at the connection between KD and headaches thank you all for your open and helpful sharing. It looks like we are going to have to jump up and down again to try and get some help again

Baden
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Re: Headaches?

Post by Baden » Mon Nov 24, 2014 4:11 am

Hi All,

When I was 12 I was diagnosed with KD. I am 22 now and have been suffering with migraines since then. No one can give me answers. My doctor this week has told me the he has no idea what is wrong and he can't do anything more to help me.

Thank you askdillon for sharing your daughters story. I will put this to my doctor.

Baden

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Re: Headaches?

Post by marajade » Sat Mar 21, 2015 4:33 pm

I had KD when I was 3, I am now 26. When I was 4, I remember having very bad recurrent headaches (as in, a headache every day for a month at a time). So much so, that I started taking Jr. tylenol unsupervised (with parental permission-- I just had so many headaches I knew exactly what to do). If I remember correctly I would say the recurrent headaches probably went away within a year (so about 5-6 years old). Although even after that, I would still say it was far easier for me to trigger and have a headache compared to my peers or sibling. As an adult, I rarely get headaches anymore, though have had just a few migraines.

aascencio5
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Re: Headaches?

Post by aascencio5 » Thu Jul 20, 2017 12:04 am

Im glad. My son has been suffering headaches after KD as well and yes the doctor did mention a connection between heart and brain vasculitis. We are still in the process of exams .

Good luck for you

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