Light Sensitivity and KD

General discussion regarding Kawasaki disease
Post Reply
MrsBales
10+ Posts
Posts: 11
Joined: Sun Aug 29, 2010 8:43 pm

Light Sensitivity and KD

Post by MrsBales » Fri Sep 24, 2010 9:39 pm

My then 3 year old son was diagnosed with KD about 6 months ago. He recovered fairly quickly and has been doing very well since then, we've even noticed that "immune system boost" that people describe after the IVIG (he had 2 doses) as he has not really been sick since and he was sick constantly before KD diagnosis. The one thing that I am noticing in him recently is light sensitivity. I was wondering if anyone else has seen this in their kids post KD. It isn't constant but comes and goes. He has had moments where he has cried nonstop in the car because despite window shades and sunglasses because I couldn't keep all of the sunlight out. Even this summer when he would go outside to play he would complain about the sun and how he wanted it to go away and his eyes would become red and watery almost immediately. He always turns lights off in the house because he said the light hurts and burns his eyes. We go to the pediatrician and cardiologist in a couple of weeks for a check up so I was going to bring it up then but was wondering if anyone else has heard of anything like this happening before or if it's unrelated to the KD.

Thanks in advance!

KCLP
100+ Posts
Posts: 189
Joined: Sun Feb 15, 2009 3:31 pm

Re: Light Sensitivity and KD

Post by KCLP » Sat Sep 25, 2010 6:24 pm

Sensitivity to light (w/no eye pain) is a less common clinical feature of KD and can be controversial.

One of many causes of Photophobia (light sensitivity) is Uveitis (inflamation of the uvea).

I suggest kids post KD have a consultation with an Ophthalmologist. A precaution making sure all functions of the eye are normal.

Some symptoms of KD can take awhile to burn out. I was glad to hear your son is feeling better. Still, be proactive as much as possible.

Can I ask what type of illness your son had pre-KD?

KCLP

MrsBales
10+ Posts
Posts: 11
Joined: Sun Aug 29, 2010 8:43 pm

Re: Light Sensitivity and KD

Post by MrsBales » Mon Sep 27, 2010 2:53 pm

Thank you so much for your reply. Even if the pediatician and cardiologist think that the light sensitivity is nothing, I still am going to have his eyes checked as my gut tells me it's just not normal for him to react this way to light.

Before his KD diagnosis...he had lots of viruses (unexplained viruses as well as diagnosis of hand foot mouth disease and roseola) He had pneumonia and a few ear infections. He also has asthma however it would only "trigger" when he had a cold or was sick. We have taken him to our Childrens Hospital Urgent Care a few times because we knew his oxygen levels were low from his asthma. Six months before his KD diagnosis, we believe he had H1N1...our daughter (who is younger) tested positive and my son had the same symptoms so they just treated him with the tamiflu as if he had it as well. He bounced back very quickly from that and didn't seem to be feeling as bad as my daughter was.

Since KD he has only ran a low grade fever for less than 24 hours. We've never had this long of a stretch where he was not ill...although he deserves the break...he had really been through a lot.

KCLP
100+ Posts
Posts: 189
Joined: Sun Feb 15, 2009 3:31 pm

Re: Light Sensitivity and KD

Post by KCLP » Fri Oct 01, 2010 8:52 pm

He has been through a lot, and does deserve a break, including you.

Let us know what the Opthalmologist determines about the light sensitivity he is experiencing. His situation is of great interest.

What are your thoughts on the combined flu vaccine for either your son, daughter, or both?

KCLP
Last edited by KCLP on Wed Mar 26, 2014 5:34 pm, edited 1 time in total.

MrsBales
10+ Posts
Posts: 11
Joined: Sun Aug 29, 2010 8:43 pm

Re: Light Sensitivity and KD

Post by MrsBales » Sat Oct 02, 2010 9:01 pm

I will keep you posted, we have a cardiologist and pediatrician visit coming up soon so I will ask questions then about his eyes. Both doctors have supported me in the past and I hope I get that again, regardless he will be going to an eye doctor as I just have a feeling that there's "something" going on.

The flu vaccination is a tough choice, however, like you, we do vaccinate as a family as well. I have seen how awful a common cold can be to his asthma that I just cannot let myself take any chances with that. Also, I am an elementary school teacher so I am exposed to so many things!!!

Thanks for your support. I'm so glad to have found this site, I've been reading it since my son's diagnosis, however, am just now starting to post and ask questions and it helps so much to find others that really understand what you are going through.

anamariaenriquez
New Member
Posts: 2
Joined: Mon Jan 10, 2011 12:07 am

Re: Light Sensitivity and KD

Post by anamariaenriquez » Mon Jan 24, 2011 9:02 am

My 6 year old son Lucas was diagonsed with KD and after two IVIG doses he has complained of light sensitivity (as your son) and joint pains. We are on the 13 day after IVIG treatment so I am watching carefully and documenting all post symptoms. I will follow up with ophtalmologist and reumatologist aside from the cardiologist whom we will see in three days for his second echocardiogramme. I hope you are checking emails a year after your son got ill, I am sorry about that! and I am interested to know if his sensitivity to light got better. Thank you! Ana Maria

positivemom
New Member
Posts: 8
Joined: Mon Apr 19, 2010 9:00 am

Re: Light Sensitivity and KD

Post by positivemom » Tue Feb 22, 2011 10:17 am

Light sensitivity, joint pain, and continued depressed immune system are all symptoms of Celiac Disease. I suggest you take a look at some of the Celiac information. Not all Celiac's have gut symptoms. 9/10 Celiac's do not know they have the disease. It is highly underdiagnosed.

My son is now 12 years old. Dx'ed with Kawasaki when he was 10 1/2 yo.

When he was younger and still today, before Kawasaki's, he had photophobia (light sensitivity), long standing knee pain (improved greatly off gluten), mild asthma (improving off gluten), etc. About 8 years of age he started to develop diarrhea and abdomenal pain. We thought it was a milk allergy and first removed dairy. We went to see a naturopath, as he always seemed to pick up colds or the flu instantly. She suggested stopping gluten, but we only reduced gluten.

But then he developed KD. Shortly after, he developed hives and anaphylaxis.

Then 6 months after KD, it was as if his gut said enough... he developed non-stop stomach pain and refused to eat. After 2 weeks of struggling to get him to eat/drink and non-stop diarrhea, we went completely gluten-free. Within 3 days his gut symptoms disappeared.

A few months later he finally had an appointment with a Gastroenterologist. We gave him a chronological history of our son's health conditions. He instantly knew that our son has Celiac Disease and is now followed in his clinic every 6 months.

It has been eight months now that we are gluten-free. It takes some time to completely learn the diet and not be exposed to cross-contamination. Slowly we are seeing great improvements in our son's health.

When I told my son's Cardiologist of my son's continuing health struggles and the eventual diagnosis of Celiac Disease, he was absolutely not interested. Root causes are not of much concern to many of the allopathic medical professonals I find.

Best wishes in finding out how to help your son.

Monica

liquidambar
500+ Posts
Posts: 697
Joined: Mon Aug 03, 2009 11:00 pm

Re: Light Sensitivity and KD

Post by liquidambar » Tue Feb 22, 2011 11:06 am

All these autoimmune diseases are all mixed up together.

There is also an "acquired " mitochondrial disorder in my family, and they can not break down long chain carbohydrates. See this hits really close to celiac disease too, and maybe very much related or close to the same thing. Some are even saying not the whey protein either, but milk has long chain carbs as does white bread does "Who KNEW!"

I found it very interesting that the Ketogenic diet - a diet in very low carbs and high in fats has been around since the early 1900's and it does control 30 percent of epilepsy. Could 30 percent of epilespy patients have a metobolic problem? As a matter of fact it in a way the Ketogenic diet has been around since Roman times - when the Roman physcians required extreme fasting which shut down the metobolic pathway of breaking down carbs into glucose and caused the metabolic pathway of fats to ketones to kick in. Atkins is also one of those that help direct a person to a low carb diet, and then of course the South Beach Diet, and of course it only makes sense that at diet in Low glutin,and whey (both proteins but comes packaged with food high in fast releasing carbs) would help too. Esp if it really, really has gone on into sure enough celiac disease too. Which I believe it possibly could.

Just last week Bob Sears was on television and it said it was a combination of highly refined carbohydrate foods and the cheap veg oils of the modern diet is a diet that causes high inflamatory problems!
He said that it would better to stick with pure butter than the cheap veg oils - because sure enough butter has some omego 3 "like in fish" while the cheap veg ones has none of the good omego 3 - just the omego 6.

Sooooo I looked to see what was considered cheap veg oils. It is the palm and kernal type of tropical oils and of course corn oil which all all found in the flavored up butter flavors of margarine tubes. And applying high temperatures to the oils also changes them (like frying) to something that is not safe.

Still it is the long chain, highly fine carbohydrates that are doing the most damage, and reducing the carbs is what helped more than struggling around with oils. Goodness knows we have always used olive oil almost exclusivly - although according to Bob Sears Canoala or rape seed is good or even better,--- at this point my eyes are crossing, as I wonder if I should continue to use coconut oil which is made into Medium chain oil- that was discoveried in the 1950's to be used along with the Ketogenic diet, so people with epilepsy can eat a few more carbs.


Oh and eyes: here is something new we found out just recently over the last two weeks:

My husband since he developed his acquired mitochondrial disorder at 34 years old "after a tetanus (AKA - DPT SHOT) also developed vitaligo. Vitaligo is an auto immune disorder that attack the pigment of the skin. He is extremly light sensitive. The eye doctor said that he also had white spots or lighter colored spots- missing pigment on his retinas. Geezze whisss it never ends.

Deniz Yeter
25+ Posts
Posts: 54
Joined: Fri Jun 12, 2009 1:41 am

Re: Light Sensitivity and KD

Post by Deniz Yeter » Sun Apr 03, 2011 4:04 pm

Photophobia is well regarded as a symptom of Kawasaki syndrome, although the long-term effects are still unknown concerning KS so the occurrence of photophobia after the disease is no doubt controversial. I would consult an ophthalmologist as others have suggested

architect1
New Member
Posts: 2
Joined: Tue Aug 22, 2017 2:49 pm

Re: Light Sensitivity and KD

Post by architect1 » Thu Aug 24, 2017 3:02 pm

My son was diagnosed with KD five days after fever over 103 and a HFM misdiagnosis. He had IVIG once and only lingering issue was light sensitivity and red eyes. After 1.5 weeks following IVIG treatment, his eyes are back to normal and there is no more light sensitivity. We had him see an ophthalmologist and he checked out fine. In general, since he was a baby, he always had mild light sensitivity and hearing sensitivity so we had to really observer the difference which we thought was notable enough to have him seen. Actually our Cardiologist recommended it...She is wonderful!

We are in the California Bay Area, near San Jose.
Dan

Post Reply