Chronic headache at 13yrs old after KD

General discussion regarding Kawasaki disease
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Chronic headache at 13yrs old after KD

Post by KDCasen » Sun Feb 22, 2015 10:49 am

My son Casen was diagnosed with KD at age 5, approx 3 weeks after onset of inititial symptoms. He was treated with gammagobulin IV (one round) and responded very well. Was on aspirin for 4 months following and all cardiac exams were clear. He had a follow up exam one year later and that was also deemed clear. No more follow ups have occurred since and he was doing well. However, one year ago at the age of 12, Casen had some type of viral infection that seemed to mimic the symptoms of mono (he tested negative for it). His tonsils were "massive" and he complained of joint pain (sometimes having difficulty walking). He was treated for Lyme Disease with antibiotics as a precaution (it did not help). His worst symptom was a constant headache and light sensitivity, which he still suffers from one year later. He has a headache every is the severity that fluctuates. He had an MRI and Neurologist found two cysts, neither of which they felt were the cause. Tons of bloodwork done. Came back that there was an indication of "inflammation", low iron and extremely high insulin levels (but normal blood sugar results). Nothing we have tried relieves the headache (a couple of migraine meds, Tylenol and Advil). I am starting to wonder if there is a correlation between his headaches and KD? All the various doctors we have seen do not feel KD has an relevance. I read several discussion points on this subject here, but putting it out there again to see if new responses might come in.

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Re: Chronic headache at 13yrs old after KD

Post by marajade » Sat Mar 21, 2015 4:49 pm

Not sure if this helps, but I had KD at 3, and had chronic (almost everyday) headaches at 4 yrs old and continued for about a year or so. Even after, I would trigger much more easily than my peers or sibling. This may not be related, but at 13, I also had low iron, anemia, stomachaches, and had my blood sugar tested (which was normal), and some headaches, but not as bad as they were when I was 4. At the time, I personally thought it was hormonal (I'm female and my cycle was coming every two weeks which could explain the anemia). However, looking back, I think my diet was very high in phytic acid (found in conventionally prepared grains, legumes, and nuts), which at 26 I now know that I'm sensitive to.

Also, one of my symptoms during KD was light sensitivity. I haven't seen that symptom mentioned or listed very much, but I remember the moon being too bright for me to look at during my illness (and I STILL remember those residents shining a penlight right in my eye because they "might not see this in their career again").

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Re: Chronic headache at 13yrs old after KD

Post by Angie » Sat Apr 18, 2015 9:04 pm

My daughter will be 13 next month and has complained of headaches a lot for the last couple of years but I just figured it had something to do with puberty. She had KD at the age of 3 in 2005. She had 2 rounds of IVIG and seemed fine soon after. I took her last year to get an u/s at the local childrens hospital because I wanted to make sure she was healed completely and she was completely normal as far as her heart goes.
~*~Mommy to 3 wonderful children~*~ Member here since 2005
Daughter successfully treated for KD in December of 2005 at the age of 3.
Now a happy, vibrant, active 12 year old~*~

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