Seeking Answers -- 4yr old son with Epilepsy & Tics

[TrentB]

This is the story of my wonderful 4 year old son Brady.

 

Outside of the below discussed conditions, he is a normal boy with the typical childhood issues. (Except for his eardrum ruptured once due to a sever infection several years ago.)

 

I am confused, depressed and deeply saddened by what is going on with him. Can you offer any suggestions? Can all of his conditions be related? Will he get better, worse?

 

 

 

(June 2003)

 

At birth (June 2003) he was diagnosed with a heart arrhythmia but has had no complications from it.

 

Shortly after birth, Brady was diagnosed with Colic.

 

 

 

(May 2006)

 

Brady had his first seizure. One week later, he had 4 more at which time he was diagnosed with Epilepsy by a neurologist at Children’s Hospital. (We stayed at the hospital for 3 days for evaluation.) His type of seizures were diagnosed as Partial Complex Seizures. He was placed on Keppra (anti seizure medication). To the best of my knowledge, nothing abnormal has been detected by EEG.

 

 

 

After returning home from the hospital, we saw only one more seizure. The medication seemed to be working. This seizure seemed shorter, so we assumed the medication was “kicking in”.

 

 

 

We seemed to go for a long time without seeing any seizures. Then, we started seeing “something” again. The “something” that we were seeing seemed to be like the seizures he originally had…but much milder and only lasting 1 or 2 seconds. Upon the advise of the neurologist, the medication was increased and we followed-up with a visit to his neurologist.

 

 

 

At this point, we were under the impression that he was having “break-through” seizures. Again, they resembled the original seizures (which would last approx 30 seconds to one minute), but were only lasting 1 or 2 seconds. During these what I will refer to as “spells”, Brady will shrug his shoulders forward and upward, make a frowning expression, and his eyes seem to look upward. This happens so fast, its hard to catch it.

 

 

 

**At some point during a visit, his neurologist said that he was not totally convinced that what we were seeing were seizures. He thought maybe they were something else.

 

 

 

Over the past year (since onset of first seizures) we have gone for days, weeks, and even a month or longer with no signs of the “seizures / spells”. Other times, he would have multiple “spells” per day. Sometimes he has them almost daily for a number of days.

 

 

 

We visited a Pediatric ENT to see if there was a possible connection between epilepsy and sinus infections. The ENT suggested that there was no link.

 

 

 

(May 2007)

 

Around May of this year, we decided to visit another neurologist just to get a second opinion. Upon our initial visit with her, we gave her all of the background information we could as well as the medical records from the previous neurologist. She also examined Brady.

 

**She told us that she thought that what we seeing were “tics” and not seizures. (The previous neurologist had also said that he was not convinced that he was still having seizures.)

 

 

 

She decided to do blood work to see if the medicine levels could be safely increased. The blood work showed that the medicine level was at a low level, so we increased the dose. (She did this in order to see if the medicine was making a difference.) The dose increase didn’t seem to make a difference, thus we returned it to the previous levels.

 

 

 

She also wanted us to try to capture his “spells” on video. This was going to be extremely difficult as we never know if/when it would happen. As he was lying in bed one night, I noticed him having his “spells”. (I never noticed this until then.) I taped him four nights in a row as he was falling to sleep. I noticed that his “spells” would begin right before or just as he was falling asleep. His “spells” happened during the first 15 to 20 minutes of falling asleep. Sometimes more noticeable that others.

 

 

 

(July 2007)

 

Our most recent visit to our neurologist.

 

The neurologist actually saw one of his “spells” during this visit !!!! She said that it was her opinion that these were “tics” and not seizures.

 

The neurologist reviewed the tape of Brady falling asleep and having “spells”. She concluded that the “spells” he is having at falling asleep are not the same as what he is doing during the day. (“tics”) She says that what he is doing at night is probably what a lot of people do “jerk” as they are falling asleep. (This seems coincidental to me since the “spells” seem so similar.)

 

 

 

During this visit, the neurologist also may a comment about Brady being “active”. Thus leading into a conversation about ADHD. So now we (the parents) are scared that he also has ADHD which can open a whole new group of challenges.

 

 

 

So based on this most recent visit, we are lead to believe Brady has the following conditions:

 

1.Epilepsy - Initially 6 seizures over a 2-3 week time period, then...based on new diagnosis....not really sure if mild seizures or tics are what he has been having.

2.Tics - After being put on Keppra for the initial 6 seizures, he still had what we originally thought were mild seizures,,,but now are being told that these are "Tics". Thus for about a year now, what we thought were seizures may have been tics ????!!!!! (Physical appearance of the "tics" closely resemble the below description of the "Spells" at falling to sleep.

3.“Spells” at falling asleep. (Shoulder shrug, Facial expressions which resembles a frown, Sometimes his eyes open.) Sometimes mild and sometimes more pronounced.

4.And now possibly “ADHD”. (This is based only on 2 comments....1 from his neurologist & 1 from a church worker who has experience with ADD/ADHD. Both comments were based on his "Activeness".)

 

His seizures were mild -- not the jerking type.

His tics are motor -- no vocal.

 

I’m sure I have not included every bit of information, but this is an overview of where we are now.

 

 

 

At this point we are confused, depressed and deeply saddened. Can you offer any input based on the information I have provided? Can all of his conditions be related? Will he get better, worse? Will this turn into TS? Any chance that the seizure were really tics? I am having a difficult time believing that this is not all related.

 

 

 

Thanks,

 

 

 

Trent Brown

[bmom]

I am certainly no expert, and I hope the experts will come along with a reply. But I was doing some searching on the computer about this topic and saw something about frontal lobe epilepsy that says it is often accopanied by motor and eye movements. It also discusses "jerking" while sleeping. Just something to check on. Hope the best for you. It also stated that these were short seizures in duration which also seemed to fit.

[Chemar]

Hi

I can see why you feel frustrated!! There is a big difference between tics and seizures and so it is very important for the doctors to do correct testing to determine what is going on

 

I would also like to recommend a good Epilepsy/seizures forum where you might be able to get some input...there has recently been a mom also struggling with whether her child has seizures or tics

http://neurotalk.psychcentral.com/showthread.php?t=23760

[TrentB]

I am certainly no expert, and I hope the experts will come along with a reply. But I was doing some searching on the computer about this topic and saw something about frontal lobe epilepsy that says it is often accopanied by motor and eye movements. It also discusses "jerking" while sleeping. Just something to check on. Hope the best for you. It also stated that these were short seizures in duration which also seemed to fit.

 

bmom,

Thanks for the info. I appreciate ANY and ALL the help I can get.

 

Struggling,

TrentB

[TrentB]

Hi

I can see why you feel frustrated!! There is a big difference between tics and seizures and so it is very important for the doctors to do correct testing to determine what is going on

 

I would also like to recommend a good Epilepsy/seizures forum where you might be able to get some input...there has recently been a mom also struggling with whether her child has seizures or tics

http://neurotalk.psychcentral.com/showthread.php?t=23760

 

Chemar,

Thank you for your input. I am new to this site and have been reading the post for several days.

I am confussed and desperatley seeking answers.

I don't know where to start.

HELP !!!!!

 

Struggling,

TrentB

[itsme]

Hi TrentB,

 

We had a very positive experince in going to an "Environmental Dr." They are trained to use alternative approaches for thses types of issues. Our son has tics and they were moderate to 6 months ago. They are now very mild due to diet restrictions and vitamins and mineral supplements. Probably the biggest help was being on this forum many hours a week and getting information to help our boy.

 

"Knowledge is the principle thing, therefor get knowledge. And with all thy getting, get understanding. "

 

That is one of my favorite verses from the bible. And It certainly pertains to our situation with our boy.

 

I hope this is somewhat helpful.

 

Please keep searching, and I believe you will find the answers for your son.

Myself, and most others on this forum have felt the desperation that you are now experiencing and through alot of probing, asking and searching we were able to help our children tremendously!

 

God Bless.

[TrentB]

Hi TrentB,

 

We had a very positive experince in going to an "Environmental Dr." They are trained to use alternative approaches for thses types of issues. Our son has tics and they were moderate to 6 months ago. They are now very mild due to diet restrictions and vitamins and mineral supplements. Probably the biggest help was being on this forum many hours a week and getting information to help our boy.

 

"Knowledge is the principle thing, therefor get knowledge. And with all thy getting, get understanding. "

 

That is one of my favorite verses from the bible. And It certainly pertains to our situation with our boy.

 

I hope this is somewhat helpful.

 

Please keep searching, and I believe you will find the answers for your son.

Myself, and most others on this forum have felt the desperation that you are now experiencing and through alot of probing, asking and searching we were able to help our children tremendously!

 

God Bless.

***************************

itsme,

 

Thank you for the encouragement.

How do I locate an Environmental Dr. ?

 

Thanks,

TrentB

[kim]

TrentB,

 

At birth (June 2003) he was diagnosed with a heart arrhythmia but has had no complications from it.

I'm wondering if the heart arrhythmia was picked up immediately after birth or just in the hospital during the birth stay? Was your son given the Hep B birth dose?

 

Except for his eardrum ruptured once due to a sever infection several years ago.)

 

Did your son have a lot of ear infections/antibiotics? Was he vaccinated while ill (if you can possibly remember )

 

Shortly after birth, Brady was diagnosed with Colic.

I have come to believe colic is really problems with gut flora, I think the medical community is way behind, in the whole scheme of things in that dept. I'm assuming since you have included some detailed info, that many would not have thought to add, that you are well on your way to educating yourself, as itsme suggested! Can I ask what you fed your son as an infant? Does he tolerate dairy now? Have you noticed any correlation with increase in symptoms with diet/gluten/caisen (dairy and wheat protein).

 

I noticed that his “spells” would begin right before or just as he was falling asleep. His “spells” happened during the first 15 to 20 minutes of falling asleep. Sometimes more noticeable that others.

 

My oldest son had a few episodes of paralysis upon waking. He would be fully awake and aware, but unable to move or speak. I do think there can very well be crossover symptoms here! He seemed to handle that really well in hind sight. I would have been terrified! I didn't pay much attention to it when he told me about it, because he was so calm, then I stumbled across info on the internet, and realized what he was trying to tell me. I have also noticed subtle tic like movements when one of the boys (mostly youngest) would fall asleep with head or legs on my lap.

 

4.And now possibly “ADHD”. (This is based only on 2 comments....1 from his neurologist & 1 from a church worker who has experience with ADD/ADHD. Both comments were based on his "Activeness".)

IF there are ADHD tendencies, many of the supplements and dietary changes that many find helpful for tic syndromes can be benefical for adhd too. It's wonderful that you are starting to investigate this path while your son is so young.

 

At this point we are confused, depressed and deeply saddened. Can you offer any input based on the information I have provided? Can all of his conditions be related? Will he get better, worse? Will this turn into TS? Any chance that the seizure were really tics? I am having a difficult time believing that this is not all related.

 

From the things you describe in your post, I would learn all you can about

 

Probiotics/yeast/gut flora

 

Essential fatty acids

 

artifical food coloring, MSG, preservatives

 

food sensitivities or allergies

 

Magnesium and all the supportive supplements for absorbtion

 

Most Peds are very agreeable to testing for lead. If your son will tolerate blood work, slip in that you would like ZINC level tested also.

 

If you are going to see any kind of an environmental or alternative Dr (possibly a DAN) they will probably have their own list of things that they want to test for, and honestly, that sure is the way to go if you can find a good one. That's why it's nice to educate yourself. You will know the right questions to ask, to see just how experienced and knowledgable they really are.

 

These are just a few things that quickly come to mind, and may give you a bit of a starting point.

 

Above all, please know from a Mom who has felt the horror of the unknown, with two of the most precious things in my universe, that my fears were way worse than what has come to pass. I do believe our path was greatly improved with the knowledge provided by the wonderful people on this and a couple other forums.

 

Glad you found your way here

 

Kim

 

I have been following the thread Chemar linked to too.

 

That little guy has more activity with the blinking, but the eye rolls look pretty similiar to what my youngest son has had (he's currently 10). My 14 year old, has never had tics around his eyes.

[Cum Passus]

Hi Trent,

 

Welcome, I'm so sorry for you and your family. I just wanted to encourage you, about the possable ADHD. As kim said the diet is so helpful. Our son (now 13 1/2) was very active as a child, he would not even sit to watch a tv show. He always had to be playing. He would even work for hours. My parents live on a large piece of land with lots of trees, and big rocks. My parents would tell my when he would spend a weekend with them he would haul rock and help split wood, and stack them ALL DAY LONG. once we changed his diet we saw a huge change. What I once thought he might have ADHD I know now if he did, it is under control with the diet.

 

Also my husband has the heart arrhythmia and TS, I have read that mag. will help with the arrhythmia. Have you done the kids calm yet?

 

Good luck and hang in there you will feel so much better when you notice natural treatments are helping your son.

 

God Bless,

C.P.

[Cum Passus]

Hi again Trent,

 

I was reading about B6 and saw something maybe you could check out. This is in an Encyclopedia of supplements.

 

" Science doesn't fully understand the mechanism by which pyridoxine decreases seizure activity, but it is undoubtedly related to its role as a necessary cofactor in the metablolism of a variety of neurotransmitters whose production is dependent on vitamin B6."

 

I found this interesting, because my son's tics have been greatly helped by B6.

 

C.P.