4yr old son - Tics started after taking Keppra for seizures?

[TrentB]

Anyone hever heard of Tics being brought on by Keppra?

Below is the story of my 4yr old son. I posted this awhile back and just wanted to repost.

It just seems really strange to me that he went from Seizures to Tics??? (according to neurologist).

 

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

[kim]

Trent,

 

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.

 

Since the original "seizures" and the suspected tics are so similar, has anyone discussed discontinuing Keppra, to see what level of activity you see, without the med? I would be encouraged that you haven't seen any new or different movements since this started. Hopefully, your son will just outgrow it.

 

I breifly looked up Keppra. The most I got out of it, was that they really don't know how it works, (like many drugs).

 

Since you mention sinus infection, and a ruptured ear drum, have you tied the "breakthorough" symptoms to bacterial infections? Has your son been cultured for strep during these infections?

 

I do believe that tic activity can be related to infection for quite sometime after an infection (i.e. he had the infection, then the spells started 3 weeks later). Hard to tie thiat type of thing together unless you're looking for it!

 

It's wonderful that you are investigating all of this on your own. Your little guy is young, and it's nice that you are educating yourself about all of the options. If you think he may have some ADHD tendencies, you might want to try some diet changes, supplements (careful to clear with someone who knows about both vits/minerals and Keppra, if he's still taking it). You may find while treating those symptoms, you eradicate the movements

[TrentB]

Trent,

 

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.

 

Since the original "seizures" and the suspected tics are so similar, has anyone discussed discontinuing Keppra, to see what level of activity you see, without the med? I would be encouraged that you haven't seen any new or different movements since this started. Hopefully, your son will just outgrow it.

 

I breifly looked up Keppra. The most I got out of it, was that they really don't know how it works, (like many drugs).

 

Since you mention sinus infection, and a ruptured ear drum, have you tied the "breakthorough" symptoms to bacterial infections? Has your son been cultured for strep during these infections?

 

I do believe that tic activity can be related to infection for quite sometime after an infection (i.e. he had the infection, then the spells started 3 weeks later). Hard to tie thiat type of thing together unless you're looking for it!

 

It's wonderful that you are investigating all of this on your own. Your little guy is young, and it's nice that you are educating yourself about all of the options. If you think he may have some ADHD tendencies, you might want to try some diet changes, supplements (careful to clear with someone who knows about both vits/minerals and Keppra, if he's still taking it). You may find while treating those symptoms, you eradicate the movements

[TrentB]

Kim.

Thanks for the input.

We recently saw an allergist....when I started questioning him about a possible connection between my son's issues & allergies...he very quickly & blountly discredited any possible connect. I made reference to the book by Doris Rapp "Is This Your Child".....he quickly discounted the claims in the book.

Thanks again...

Still Searching / Praying

TrentB

 

Anyone hever heard of Tics being brought on by Keppra?

Below is the story of my 4yr old son. I posted this awhile back and just wanted to repost.

It just seems really strange to me that he went from Seizures to Tics??? (according to neurologist).

 

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

[kim]

Trent B,

 

Don't give that another thought. These are the side effects of the drug that was prescribed for my oldest son when he was about 8 yrs old.

 

More common

 

Difficulty in speaking; dizziness or fainting; fast or irregular heartbeat; loss of balance control; lack of facial expression; mood or behavior changes; restlessness or need to keep moving; shuffling walk; slowed movements; stiffness of arms and legs; swelling or soreness of breasts (less common in males); trembling and shaking of fingers and hands; unusual secretion of milk (rare in males)

 

This script was for Pimozide/orap.

 

You know, the Dr. who said patients were dying from germs on sugical instruments was ridiculed. Not long ago, those who said amalgam or silver (mercury dental fillings) were dangerous "were nuts." At one time the world was thought to be flat............

 

Next time ask him what he thinks about the involvement of T reg cells in TS or cite other studies, and watch him squirm.

 

http://ecam.oxfordjournals.org/cgi/content/full/3/2/209

 

Considerable inflammation, resulting from allergic hypersensitivity or immune response to infection, has the potential to induce deleterious effects on an individual's tissues and overall well-being. Recent evidence has served to elucidate the mechanism of action and substantiate the usage of a veritable array of traditional herbs, folk medicines and other compounds found in nature, which have been employed to attenuate inflammatory complications. Of interest to practitioners, researchers and patients of CAM modalities are those compounds that maintain powerful immunomodulatory capacity via direct or indirect action on Treg cells (Table 1).

 

and

 

Often, patients with allergic diseases have a deficient ability to suppress T cell responses to allergen by Treg cells (32,34).

 

 

 

 

http://www.ncbi.nlm.nih.gov/sites/entrez?d...l=pubmed_docsum

 

CONCLUSIONS: These data support our hypothesis that at least some TS patients may have a decreased capacity to inhibit autoreactive lymphocytes through a deficit in T reg cells. Interactions of host T cell immunity and microbial factors may also contribute to the pathogenesis of TS.

[Chemar]

Hi Trent

 

good to see you here and I am so glad to see Kim has given you all this excellent info that she is a whiz at finding

 

and yes, that allergist joins the looooooooong list of conventional doctors who diss anything they dont have personal knowledge or understanding of.......it really makes me so mad. It is one thing for them not to be correctly informed.........but to negate that which they are ignorant about is IMHO reprehensible!!

 

I cant remember if you discussed PANDAS or PITANDS on NeuroTalk, but I agree with Kim that it would be a very wise move to look into whether all this could in some way be linked to microbial action

 

and yes, the side effects of Keppra are something that would have to be considered too

 

I do hope you will be able to find a clued up doctor soon

 

Cheri