Help Needed

  I've searched the condition you stated and have come up with the URL talking of various kinds of seizures.  This will give you different websites discussing various seizure disorders so you can read about them, if you wish, so when paying a visit to the nephew's doctor you can ask questions you want answered.  Perhaps the doctor might suggest an epileptologist for more expert advice regarding the nephew's condition, and might refer the child to him/her to treat.

  I have read that children can outgrow seizures, so you have that hope, although I have no idea about the seizure disorder of your nephew.  By all means please keep in close contact with the child's physician for expert care.  Children can be very resilient in dealing with ailments, so let's hope your nephew is one of those.

  Best of care for all involved.  Here is the URL.  Click on it to bring up various websites.

  Another website you could check out is the Mayo Clinic's website.

https://search.yahoo.com/yhs/search?p=multifocal+seizure+disorder&ei=UTF-8&hspart=mozilla&hsimp=yhs-001

Epilepsy helpline 0808 800 5050

She has multi seizures by this i mean she has full blown fits, jumps and jerks and absenses. it depends how these seizures have started (injury, illness etc) there can be surgical procedures which will reduce the episodes

The issue we have found is that the drugs to treat one type of seizure often make the others worse. We have spent years juggling tablets  to get a good balance then unfortunutly the body changes and the drugs need to be changed again.

As stated below a lot of youngester do have seizures which happen for a few times then  never seen again.

According to my wife the three worst things are :-

1 not being able to drive.

2 not being able to go to the cinema

3 having to remember tablets all the time

sorry i cant tell you better news, regular visit to doctor, get the diagnosis confirmed and checked (there are other illnesses that cause seizures)

Bless you and your nephew and all your family touched by this diagnosis. It is scary territory. This might be a long post, however, I hope you will be able to glean something helpful from it.

I adopted my three granddaughters 10 years ago and raise them. My eldest, Ivy, was just three weeks old when I gained custody of her. Shortly after age one I began to notice something strange happening to her and it was becoming a pattern.

Sometimes when I would go to her crib to awaken her for the day, she would be laying literally face down in what appeared to be heavy wetness and bubbles. She would be limp as a rag doll and appeared to be choking on foam that was bubbling up and out of her. Sometimes this lasted for an hour, and up to nine hours.

Her pediatrician brushed it off as did doctors at the emergency room, saying it was a stomach virus. As soon as Ivy could hold her head up and crawl, she would bang her head on the floor and anything else she could bang her head up against. It frightened me! She saw a pediatric neurologist who was useless.

Then one day when she was around 15 months old she was like a rag doll again and choking on foam and I took her to a different pediatrician. As the nurse left the room, she said loudly, do we call poison control when a parent let's her baby eat dish soap? I clenched my jaw and balled up my fists ready to fight!

The doctor came in, looked at her and said this child is having a seizure and admitted her to the hospital immediately. I praised God! Not for her suffering but to finally have a plausible name for her condition.

While in the hospital they did the standard epilepsy tests and the results indicated there was nothing wrong, but she was still in the rag doll state. Then from one moment to the next she sat straight up in bed and said, "I'm done." She was finally old enough to speak but there was no dialogue about how to manage this. And the rag doll spells seemed to stop after that.

Ivy is now 14 and when she was 8 or 9, she got home from school screaming and crying, sat on the kitchen floor rocking back and forth pulling at her hair and the emergency room doctor referred her to another pediatric neurologist.

Again all standard tests showed normal, however the doc wanted to do a 24 hour video test with dozens of wires attached to her head in a controlled environment. That test revealed that her brain NEVER STOPS seizing!!!! Called Generalized form of epilepsy and was told it is the worst kind to have.

So she began to take Lamictal 300 mg a day to control the seizures and Gabapentin for the migraine headaches. Three years later I asked to do the 24 hour video test again to see if the medication is working 100 %!

Ivy had developmental delays in most every category and I was able to find an Early Intervention agency to help me get her caught up in in speech, fine and gross motor skills, etc. I had to bounce her around on a big ball so she could learn where she was in space. She walked on a balance bar. Just all kinds of help in every category in development. She even lacked the ability to use her arms to catch herself in a fall, so she had to wear a helmet for a while to protect her head. The therapists told me to play classical music in her room at night because studies have proven that classical music can rehabilitate all that is wrong in the brain. I have not researched this but it seemed harmless enough to try so I did, but I have no way of measuring the outcome.

Then when Ivy was 18 months old, the court awarded her back to her mother and my daughter and her husband ceased helping Ivy and did everything possible to destroy her. My heart felt sick. When Ivy was five, I was able to have enough legal reason to regain custody of Ivy and her two neglected and abused sisters. I chose to adopt because I wanted no disruptions in the children's lives each time one of the three parents thought they would like to pretend to be parent of the year.

Today Ivy suffers lack of physical coordination, weakness on the whole left side of her body, has poor balance, short attention span, misses bits of information that can create the appearance of disrespect or direct disobedience, or it seems as though she is not listening, all of which can drive parents and teachers mad. However, she cannot pick up on environmental cues and she can seem like a space cadet when she blurts out something totally unrelated to the current discussion. It is important to advocate for a child with brain differences.

Right now I am exploring possible learning disabilities, seeking Occupational Therapy and she goes to physical therapy three times a week to strengthen her balance and left side. She suffers from vertigo and the PT mentioned that her left eye peripheral vision is poor and when she looks to the left she becomes very dizzy.

She has seen a psychiatrist, a geneticist, a heart specialist, an OBGYN, and has on going counseling for her diagnosis of Post Traumatic Stress Syndrome caused by the three years of horror with my daughter. There is an abnormality in her DNA chain, a complete replica of one part of it and no one can explain it or give me an idea of what it could mean. Ivy was born with only one kidney, but other than all of this she is a very lovely and pleasant young lady.

According to motor vehicle laws here in the States, she can drive as long as she can prove no seizures for a year, which she can prove, however she lacks the ability to disseminate the constant influx of information and decisions driving demands response to, so I will hold her back from it for a while. Her stress level rises quickly with input overload, so I cannot ask her to do more than one thing at a time around the house.

She is in the 7th grade and was held back a year between first and second grade. Last year she was an easy target for extreme bullying so this year I am homeschooling her and her stress levels have gone down and she can work on her lessons at her own pace. She has always missed a great deal of school due to needing so many specialists, but homeschooling allows her to catch up easier.

So there is Ivy's story. I have put her on birth control due to her vulnerability. I suspect she will not purposely get into any trouble, but she will instead stumble into it.

Parents of a special needs children need to prepare themselves with an open mind and open heart. These children cannot be forced into conformity for the sake of a parent's ego because they are not living up to the dreams their parents wanted for them. They will need to research everything they can find about the condition and scour their community for proper resources to help the child. The parental journey will be a rough one and not just because of the hard extra work for early intervention, but also in dealing with the insensitive stigma their child will suffer from the public.

I weep sometimes in private because I wish my Ivy did not have to suffer her brain differences, for I would take it from her in a heartbeat if I could. The secret is to search for that fine line between what behaviors they are capable of changing and what they do not have the capability of changing or controlling and push for accountability but never push so hard over something they cannot control that it causes them unnecessary distress. While they are young this is not as difficult, however later when they are older the challenge is greater.

Ok, I will end now. Again, hope something I shared can help you.

Best regards,

Dawn, US