Photosensitive Epilepsy due to direct sunlight

[reinardt]

Hi All,
We are new to this forum. Just a short background on Reinardt. He contracted Meningitis two weeks after he turned 5 years old (Oct 2006). During his stay in hospital he developed Guillian Barre Syndrome (GBS). For those who do not know what GBS is: Paralysis from head to toe. His body's defence mechanism turn onto his own body destroying the cover of the nerve system throughout his body. He spent 12 days in ICU and it took almost 3 months before he could "walk" again. He recoved from this with only a little bit of residual. 19 months later we noticed that he rotates his eyes when exposed to the direct sunlight. Took him for EEG - Photosensitive Epilepsy was diagnosed. It's been 4 months now. He started taking Epilem from day one and had to adjust to the situation like wearing sunglasses and a cap when playing outside. Is there anybody in this forum's data bank who has this. We've been through so much already and I would really want to understand what he is experiencing now. The sun is the only trigger so far that we know of that causes him to rotate his eyes accompanied with a hand-waving action in front of his eyes. Any info will help. Thanks Reinardt's mom Jane

 

[Crazy Monkey]

Hi Reinardt

Welcome to CWE

I know all about Guillian Barre Syndrome, my Uncle was struck down with it about 3 years ago, we were on vacation in Alaska and he started to tire very easily, all of his joints were hurting and he was losing coordination, of all the places to be, when you need medical attention (we were in the middle of nowhere). At the time we didn't have no idea what was going on, it came on so dam quick. Once we got home (back to the UK) he went to the doctors and started to explain what happened, the doctor fobbed him off with arthitis, but the meds didn't work, so they took him into hospital and after about 5 days of tests they finally diagnosed him with GBS, by this time he couldn't walk. It was terrifying, he was as skinny as a rake. It took him about 4 months to start to regain strength and weight, I had never been so worried in all my life.

I also have problems with sunlight, the sun flashing between the trees when we are driving along never fails to send me into an absence seizure. Sunlight is a trigger that is very difficult to avoid unless you move north for the winter and south for the summer.

Anyway you have come to a great place for information and to hang out with some friendly people.

Take Care

The Crazy Monkey

 

[reinardt]

At last somebody who understands.....

Now that you know what GBS is and how "frightning" it is, can you understand why I'm so concerned? Reinardt went from Meningitis to GBS to Epilepsy. Can you pleassseeee explain to me what happens to you when the absence seizures occur? I need to know. Reinardt is to small to explain and he is so confused because he is still experiencing residuals from GBS as well so there is a lot happening in his little body. Why can't he stop looking at the sun? It's as if the sun is a magnate to him...

More info please...

 

[Crazy Monkey]

My Uncle still experiences the tail end of GBS from time to time, I have seen his legs just go weak and fall over. His strength isn't quite what it was, but he is 'getting on in life' and probably finds it harder to recover.

Absence seizures - I can have up to 50 a day, I have had a lot more if I have been out on an all night drinking session. My main trigger is tiredness, but I have problems with bad lighting conditions, sunlight, stress and sometimes there just doesn't seem to be a trigger in sight. I will be sitting here minding my own business and all of a sudden I will black out, they last anything from 2-20 seconds, I know nothing about it, when I come back round, I am sometimes confused and have lost my chain of thought, if I am having a conversation with someone, 8/10 I will forget what we were talking about. When I have the seizures my body remains in the position that it started the seizure in, it doesn't collapse to the ground, unless it progressed to an atonic seizure. I can sometimes find my way to work safely in seizure mode for most of the walking journey, quite amazing really, considering I am walking around unconscious.

If you have any questions, please ask away and I will do my best to help.

 

[Crazy Monkey]

At last somebody who understands.....
Why can't he stop looking at the sun? It's as if the sun is a magnate to him...
More info please...

I am not to sure why he can't stop looking at the sun, as it is not a good thing to do at anytime, let alone if it is causing seizures. I have never been drawn to the sun.

 

[reinardt]

Does it mean that he won't be able to tell me when he had a absent seizure? Sometimes I'll ask him something and then he won't respond - can it be that a seizure is happening at that exact moment? A month ago Reinardt started to experience weird things. He explained to me that it sometimes feels as if he is falling of the chair at school. He also told me that he gets a shivering feeling from head to toe. Took him to doc and after another EEG, doc explained that Reinardt is just experiencing "feelings" and not "seizures". I'm confused because I'm not sure when and if he is getting absent seizures...

 

[Bernard]

Hi Jane, welcome to the forum. :hello:

Does it mean that he won't be able to tell me when he had a absent seizure? Sometimes I'll ask him something and then he won't respond - can it be that a seizure is happening at that exact moment?

Yes.

http://www.epilepsy.com/epilepsy/seizure_absence

A month ago Reinardt started to experience weird things. He explained to me that it sometimes feels as if he is falling of the chair at school.

Read this and then ask him if it is similar to what he is experiencing:

http://www.epilepsy.com/epilepsy/epilepsy_temporallobe

 

[Crazy Monkey]

Does it mean that he won't be able to tell me when he had a absent seizure? Sometimes I'll ask him something and then he won't respond - can it be that a seizure is happening at that exact moment?

During a seizure I am unresponsive and my family get very frustrated by this, sometimes when they are pretty much back to back, it can take me an hour just to say, yay or nay to having a coffee.

Sometimes, I can hear, but can do nothing about it, but most of the times, I am fully 'out of it' I occassionally get weird feelings, because of disorientation (not very often). I am fully aware that I have had a seizure when I come out of it, because I can feel it, sometimes when I have a lot, my head and eyes feel very strained and fuzzy. (It is a very weird feeling to explain and I cannot think of anything to compare the feeling too)

Thats to whether your son is having these, well that is really down to you to put your case across to a neurologist, what is the report?? for the reason why your son has been put onto Epilum??

 

[reinardt]

When the EEG was done, Reinardt had his first seizure within about 5min from starting the EEG. Then another when the "flicker light" was used and another a few minutes later. All between 2 - 3 seconds. Guess that and my description of him rotating his eyes when exposed to the sun, was reason enough for the Neorologist to diagnose him with PSE. Not sure if the medication contributes to certain "feelings".

 

[LivingFruity]

Hi Jane :hello: Welcome to CWE! Reinardt has been through so much over the last couple of years. I can totally relate, my son is 7 years old and dealing with cerebral palsy and now epilepsy (complex partial seizures). This hasn't been an easy process, but I couldn't imagine living through GBS. I'm sure you were terrified.

I was so grateful to find this forum. Take to time to read through the forums and join right in on the conversations. There are so many caring individuals here who may be able to help you find some of the answers you are searching for

 

[reinardt]

Children with medical problems

Being a parent of two wonderful boys is so rewarding, and I thank the Lord for them. When Reinardt fell ill, I though ok we'll deal with the Meningitis. Then after about a week he wasn't able to walk, talk, eat, blink, cry, move on his own and he had extreme pain over his whole body - we couldn't touch him. We couldn't understand what was going on until he was diagnosed with Guillain Barre Syndrome. When the doc told me that he has GBS I asked him what it was - never heard of it before. He then explained the syndrome to me and he was admitted to ICU (almost at the point where it could be necessary to ventilate him). I started searching on the internet for more info. Felt so helpless not knowing whats going on and the prognoses? Couldn't tell had to wait and see. GBS had a huge affect on Reinardt and on us as a family. Ruben, his brother, who was 8 at that time also had a very difficult time, because mommy was crying all the time and I stayed at the hospital the whole day. We prayed and we had lots of support from family and friends, but still you feel totally alone and sometimes it felt as if panic will get the better of me. With little residual (occasional pain and depression) we overcame GBS until E struck. It was so difficult to explain to this very delicate boy that sorry but now you have another illness and you have to take pills everyday. He was so depressed and it took a few talks to get him on the positive side again. I don't want to feel so incompetent again. I want to be on top of this condition in order to give him the correct answer when he asks or to be able to tell him what's going on with him.
Sorry for this loonnngggg post but I just needed to get it out.
I love my sons so much and I don't want to fail Reinardt by not understanding...
Reinardt's mom Jane from South Africa!

 

[LivingFruity]

I've found that it realy helps to talk about it. I started a blog to document our experiences, my son's treatment, our emotions, etc (rawepileptichealing. blogspot. com). It really helped me to get through our struggles at the beginning of this month. It also helped finding this group of supportive people. I feel less alone in this battle. Your son is blessed to have such a wonderful mom who loves him enough to want to understand what he's going through

 

[RobinN]

A good thread to read:

http://www.coping-with-epilepsy.com/forums/f22/virus-connection-seizures-1220/

specifically this part:

An invading virus should be subdued and immobilized by the immune system, lying dormant and harmless in the body. In the gut, certain agents of the immune system in the mucosal lining usually conquer any viruses. However, if the intestinal mucosa is damaged or is deficient this can leave an opening for a virus to be reactivated, get out of control and become industrious in the gut, and even spread to other parts of the body. The same doorway results from having a weakened immune system. This may force the immune system to constantly work at a higher level. It becomes overburdened on a daily basis, yet cannot completely destroy or subdue the virus.

A number of research studies have established various viruses are present in some children with developmental delays such as autism, and often accompany persistent digestive and health problems. Documented viruses include the stealth virus, herpes virus, measles, chicken pox, Epstein-Barr, and viral encephalitis. There is evidence that viruses can cause dysfunction in the brain and damage the protective coating, called myelin, around the nerves. This leaves the nerves exposed and susceptible to damage. Viruses are suspected as agents in many autoimmune diseases as well.

A basic therapy against such viruses needs to focus on the immune system: improving its ability to function, strengthening it, and enabling it to work at a more typical rate and manner in addition to eliminating the pathogens, if possible.

Enzymes, particularly the proteases, turn out to be an excellent therapy to use against a virus by working on several levels. Many viruses are surrounded by a protective protein film, something a protease enzyme can digest away. Eliminating this coating leaves the viruses unprotected and vulnerable to antivirals and destruction. There is also research showing how enzymes support the immune system helping it to more effectively work on problems in the body, including viruses.

 

[Kansas Educator]

I too knew a little boy through my work at the school who developed GBS at about 7 or 8 months of age. He was in the hospital in intensive care for quite a while and lost many of his motor abilities during the time. He is now 5 years old and, while one side is weaker than the other side and he limps a bit, has recovered nicely with lots of physical and occupational therapy. I don't believe he has seizures though but it sure wouldn't be out of the realm of possibilities when you think of how GBS presents and what it does in the body. This little boy has improved dramatically over time and my prayer is that your son will as well..................Blessings, Roxie

 

[Crazy Monkey]

As you have noticed you have come to the right place to gather information about your sons Epilepsy, everyone on CWE will always be more then willing to pass on their life knowledge.

It is excellent that you are doing this for your son!!! I was 10 years old when I was diagnosed with absence's, a bit older then Reinardt, but my parents and doctors never explained anything to me. I was plonked onto Epilum and left 'to get on with it'. I wish I had more understanding people around me when I was growing up rather then people that were shouting at me during a seizure. What you are doing for your son, he will appreciate when he is older.

 

[Birdbomb]

Welcome Jane :hello:

Your children sound like they have a very loving and caring mommy. When my son was born he had a extremely rare birth defect on his face. There was no internet or personal computers at that time. There was NO ONE who I could ask or turn to about it. Even his doctors had no answers. It wasn't until he was grown that an internet network was develpoed for his condition.

I can relate to your fears. I had to explain an unexplainable condition to my son and almost everyone who saw his face. When explaining to children about their medical issues, honesty is imperitive. Inately they already know the answers but it needs to be explained to them at their level. They know if their situation is serious by the reactions of the adults around them.

Your little guy has been through hell. He's a tough kid. Even though he may have developed other problems after the GBS, it's important that you encourage his inner strength. Kids are so resiliant! They bounce back so much quicker and easier than adults. He will draw in your strength in dealing with what ever medical issues come his way.

Parents today may not realize how lucky they are to have so much information, resources and support at their fingertips. I envy them. (((HUGS))) to you and your boys.

 

[reinardt]

Being a parent - not always easy

I remember the day Reinardt was born. I had a Cesarean and was still drugged when I heard a baby crying. I rang the bell and a nurse responded. Convinced that it's my little baby boy crying, the nurse broke the news to me that my newborn has been admitted in the Neonatal ICU and that she couldn't explain why but that I had to wait for the doc to see me the next morning. I cried the whole night not knowing what to expect. Next morning doc told me that Reinardt was very ill and that they'll take me "on my hospital bed" to see him.

Cannot remember the medical term but in plain understandable explanation: My husband's blood type and mine were incompatible and Reinardt's body had to fight this problem. So many times they threatened that they were going to do a total blood transfusion. I was discharged from hospital without my baby. Had to explain to his brother (3 at that time) that yes he does have a baby brother but he couldn't see him yet. 12 long days went by and many tears later he could come home. He had to take iron supplements for a long period.

Age one and a half we rushed him to the emergency room - some bad allergic reaction but unknown to what. Age two a bee stung him - rushed him to hospital - he was allergic to bee sting - death threatening needs immediate medical attention. Age 3 he had to get an iron injection (body not absorbing iron at all). Then as I explained in my 1st post the meningitis, GBS and Epilepsy. What could be wrong with Reinardt. Is there something wrong with is immune system, his blood, his brain???? I wish somebody could give me the answers. I pray to God to help us. I don't want to make a big deal out of this, but it just makes me wonder is there something I can do to help him.

I'm sooooo sorry for another loonnngggg post!!!

 

[Meetz1064]

So he

originally started out with a problem with the Rh factor in his blood? That's what the incompatibility problem is. My best friend was actually allergic to her husband's semen before they got divorced. The last baby was a carbon copy of her husband........and she was allergic to the baby. It was not a fun pregnancy....and they had totally opposite blood types.......and that has to do with the Rh factor in the blood.

And don't ever worry about long posts around here. We'll be here for you no matter what.

 

[RobinN]

I thought they test for that during pregnancy, just to be safe. Or has insurance taken that one out of the care too?

 

[reinardt]

Blood types

My first born also had problems with his blood type, but it wasn't as serious. Only after Reinardt was born and had all the problems, I was told that I was suppose to have had an injection after my first born to prevent something like this happening to my second child - was never told about it. Maybe if they did the blood transfusion Reinardt would have been ok - don't know...
Guess there is no use in dwelling on the past, so I have to focus on his current situation and try to make life as comfortable as possible for him.
I really want to thank all of you for responding and for making me feel at home even thou I'm thousands of miles away from you.