CAROLYN, FAITH, CHEMER & Every one else...

[myrose]

WHAT IN THE WORLD DOES THIS MEAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I do not know what to think anymore!!!!!!!!!!!!!!!!! Can you believe this? Ever heard of this???? How can this be?????

 

 

As you know when my daughter first started these tics we went to a neurologist. It was about 6 months or so after it all started. We went last August 07.

We did blood work for pandas (came negative) then we did 20 minute EEG (little abnormal) then followed with a 24 hour EEG (Dr. said it was normal) also did the MRI.

Everything was said to be normal and only offered meds.

 

My daughter started with all kinds of VIOLENT TICS. We have NEVER SEEN this. Its hard to watch. Nothing like the regular tics she always had. And nothing that resembled the tics desribed on here. These turned VIOLENT! There is no way for me to explain. This past weekend it became unbearable for not just us but for her. She always complained of them but now she is saying that she hates herself, she hates me for not helping her and that she wants to die.

This is coming from a 5 year old!!!!!!!!!!!!!!!! I have been in constant tears since Mothers Day weekend.

 

We are headed to a new doctor as I reported ont he 30th but I knew at this rate she nor I would have survived the wait. NO WAY!!!!!!! Its that bad!!!!!!!

 

So I called a different neurologist this morning in tears....we got in (not sure how but we did)

 

We did another EEG and now they said its showing seizure activity in the right side of the brain and we were put on topomax. We are headed back on Monday to do further testing and we will repeat all the tests we have already done as well.

 

 

I am in shock...couldn't speak and still can't. I walked out of there emotionless and with no questions. I think I was in shock. I still have kept the appointment with the new doctor on the 30th but do not understand what is going on.

 

I am about to go over the edge. The topomax is low dose and I have read about it. I don't like it but what am I to do.

WHAT THE HECK does all this mean!!!!!!!!!!!!!!!!

I can't take it anymore.

 

My sisters child was put on seizure meds when an infant and was presribed meds. She out grew the seizures and never had them again.

How can TICS be seizure activity??????????

 

I want to run away so far...so far....

[faith]

((Wendy))

try not to panic, I know you are numb from not expecting this, but I feel this way--at least you have some direction to look right now. Perhaps the seizure activity is not that bad in itself, but coupled with your daughter having some tics (as a separate issue) is what is adding to the real exacerbation and as you said some kind of tics that you havn't recognized as tics before?

 

Did the neuro or anyone in the office try to explain what could be going on and assure you of anything even if you did not have questions of your own? Did they explain how this topomax will help? Did you ever feel your daughter was having any kind of seizure, even in younger years? yes, this is a little curve ball thrown at you, but you will get through this. You will of course get a second opinion and see what is what. Perhaps, JENNYC could give a little advice here, for her daughter has had seizures too, I believe?

 

Please try not to worry too much, if you have questions now as you think of them, I'm sure the doctor will take time to give you some answers if you call.

 

Please let us know how things go in the next few days.

 

Blessings

Faith

[Chemar]

((((((((Wendy)))))))))

 

seizure activity is very different from the tics so it's good you did another EEG

 

you may want to ask questions on the Epilepsy & Seizures forum at NeuroTalk as members there would know about the med etc. http://neurotalk.psychcentral.com/forum11.html

 

I have seen topomax discussions there.

 

Also mrsD on medications forum may have info for you

http://neurotalk.psychcentral.com/forum72.html

 

Try not to panic. Seizures dont mean a dx of epilepsy as there are oter tpes of seizure disorders and also seizures can be triggered by brain inflammation etc.....hopefully the medication will bring rapid relief.

 

dont cancel your appt with dr Franz as she is an excellent pediatrician and is sure to have experience with seizure disorders too

[sunshine9]

I am so sorry that you are going through this- it must be overwhelming. Hopefully the topomax will calm things down a bit so that you can gather your strenght and try to think clearly. Ask what kind of seizure it is? any recent medications, infections, supplements, vaccinations, allergies? anything that you can think of that could have topped it over for your daughter? Hang in there, things will get better.

[bmom]

I just wanted to say I am sorry for this time in your life. Perhaps it will lead you in the right direction though and you can get some answers. Thank God they did the test and did not just try to throw her on tic meds.

[patty]

myrose,

 

So sorry that this is happening to your daughter & you. I am sure this is a very difficult time. Since your dd's tics have spiked, you may consider acunpuncture, chiropractic or CST to calm down her nervous system. These modalities have worked for my child.

 

I am sending some positive vibes to your daughter for some relieve! Good luck!

 

Pat

[Chemar]

myrose

I have been doing some checking and it seems there are a number of reports of seizures and PANDAS

 

here is just one lot that I found...there are many more

http://www.epilepsy.com/node/481738

[CSP]

Wendy,

 

I am all choked up, it is hard to even see the key pad through the tears. God Bless you and your sweet child!

 

You are in my prayers.

 

CP

[myrose]

Thank you ALL SO MUCH for your thoughts , good wisshes and prayers. I gave my daughter her first dose of the topomax. She is sleeping soundly at the moment and for the first time since Mothers Days weekend she is not jerking in her sleep. Not sure what this means but I find myself just starring at her. This is the only moment I have enjoyed in what seems a very long time. She looks so peaceful and calm as I type this. I am afraid to go to sleep and miss the hours of motionless body. Just scared as to what we will wake up like.

The monkey study someone posted was very interesting huh? I know it all may be just a cocincdence but her eye blinking started right after that 2nd MMR shot. Those 9 shots I LET THEM give her always haunted me in a funny way. I always think that if I only had one wish it would go back to that day, refuse those shots, and see if things would be the same as they are today.

 

Well again everyone...Thank You so much. I am not sure how you all stay together through this. I used to consider myself a TOUGH person with a fighting instinct always lingering but for some reason this thing has brought me to my knees.

I thought today to myself....Oh my GOD what about her children?? And then today while picking up her topamax at Walgreens....everyone there in the pharmacy department that was waiting for their prescriptions (or whatever) was staring at her. Her head was violently going forward and her whole body jerking like electrical bolts going through her. She tried to hide behind me and then she whispered to me in my ear that everyone was looking at her.

I had to at that time leave the store just to compose myself. I then had to go back in the store and get the medicine.

I guess what I mean to say is that this was hard enough on me when it bothered me. But now when its effecting her too its just too much.

 

My husband mentioned something about Myclonic seizures or something like that. I did not hear a thing the neuro said. It was the first out of body experience I ever had. Not sure if those are the right words to use but I swear I was there and did not here ONE thing! I just remember walking out.

 

Thanks again everyone and just know that I too pray for each and one of you too!

 

I did a search on what my husband said and this was all I could find.

 

 

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

 

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

 

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

 

Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.

 

Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.

 

Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

Who gets them?

 

The epileptic syndromes that most commonly include myoclonic seizures usually begin in childhood, but the seizures can occur at any age. Other characteristics depend on the specific syndrome.

 

 

What's the outlook?

The outlook for patients with the various syndromes that include myoclonic seizures varies widely. See the specific syndromes for more information.

 

 

What else could it be?

As mentioned, some episodes of myoclonus are normal. Some myoclonic seizures occur in reflex epilepsies, triggered by flashing lights or other things in the environment.

 

 

How is the diagnosis made?

The seizures themselves are easy to identify. The syndromes usually can be diagnosed on the basis of the medical history and often EEG patterns.

 

Topic Editor: Orrin Devinsky, M.D.

Last Reviewed:2/11/04

[kim]

Myrose,

 

It's bad enough for children and parents to deal with the tics and some of the issues that go along with it. It's horrible when things escalate. I think all of us have been through the quite times and the panic times. I pray you get some answers quickly.

 

Thoughts and prayers are with you.

 

Kim

[bmom]

Your post is so sad as I know that feeling of wanting to protect them from other people. I realize people are just concerned, but it sooo has angered me before!! I also have the thought about my children's children. I can only pray that answers will be more clear on things like this by the time my children have children with all the autism research. I hope the morning will bring you peace and your daughter will have comfort. I just pictured her in the store whispering to you and my heart just goes out to you both!!!!!

[ilovedogs]

Your post is so sad as I know that feeling of wanting to protect them from other people. I realize people are just concerned, but it sooo has angered me before!! I also have the thought about my children's children. I can only pray that answers will be more clear on things like this by the time my children have children with all the autism research. I hope the morning will bring you peace and your daughter will have comfort. I just pictured her in the store whispering to you and my heart just goes out to you both!!!!!

((((myrose)))), I'm so sorry this is happening! At least it sounds like the meds are helping for now and maybe you have found out a piece of the puzzle. Praying for you all to have a quiet and restful weekend!

Bonnie

[michele]

My Rose,

I am so sorry your daughter and your family during this difficult time. You are a strong mom. Just the way you are searching for answers proves that! I have heard the term myclonic jerks with my son in the past when he first started his tics. His were constant too but he was very young. He jerked in his sleep too. His fingers were constantly moving. I never saw his arms move just the fingers and eyes blinking. His were not violent either. It is so hard not knowing. I pray you get a good Dr. on Monday and find out something useful. My son's EEG and CAT were negative so I just don't know. Hopefully the meds will help relax her some. Please keep us posted on her progress. Blessings to you all.

 

Michele

WHAT IN THE WORLD DOES THIS MEAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I do not know what to think anymore!!!!!!!!!!!!!!!!! Can you believe this? Ever heard of this???? How can this be?????

 

 

As you know when my daughter first started these tics we went to a neurologist. It was about 6 months or so after it all started. We went last August 07.

We did blood work for pandas (came negative) then we did 20 minute EEG (little abnormal) then followed with a 24 hour EEG (Dr. said it was normal) also did the MRI.

Everything was said to be normal and only offered meds.

 

My daughter started with all kinds of VIOLENT TICS. We have NEVER SEEN this. Its hard to watch. Nothing like the regular tics she always had. And nothing that resembled the tics desribed on here. These turned VIOLENT! There is no way for me to explain. This past weekend it became unbearable for not just us but for her. She always complained of them but now she is saying that she hates herself, she hates me for not helping her and that she wants to die.

This is coming from a 5 year old!!!!!!!!!!!!!!!! I have been in constant tears since Mothers Day weekend.

 

We are headed to a new doctor as I reported ont he 30th but I knew at this rate she nor I would have survived the wait. NO WAY!!!!!!! Its that bad!!!!!!!

 

So I called a different neurologist this morning in tears....we got in (not sure how but we did)

 

We did another EEG and now they said its showing seizure activity in the right side of the brain and we were put on topomax. We are headed back on Monday to do further testing and we will repeat all the tests we have already done as well.

 

 

I am in shock...couldn't speak and still can't. I walked out of there emotionless and with no questions. I think I was in shock. I still have kept the appointment with the new doctor on the 30th but do not understand what is going on.

 

I am about to go over the edge. The topomax is low dose and I have read about it. I don't like it but what am I to do.

WHAT THE HECK does all this mean!!!!!!!!!!!!!!!!

I can't take it anymore.

 

My sisters child was put on seizure meds when an infant and was presribed meds. She out grew the seizures and never had them again.

How can TICS be seizure activity??????????

 

I want to run away so far...so far....

[Chemar]

((((((Wendy)))))

 

I just want to give you another hug and say I am so glad that she had a peaceful sleep. I hope you did too.

 

Nomatter what the cause of the sizure activity may be, I am just thankful that God opened the doors for you to quickly get in to a doc who knew what to do.

 

Praying for you and your precious little one.

 

with love

Cheri

[CarolynN]

Wendy,

 

I am so sorry you are going through this very difficult time. I have been continuing to pray for answers for your daughter. I trust God will bring the answers forth.

 

I was thinking about something I remember reading a while back. I cannot even begin to tell you where I read this because I read it at the beginning of my "search" for answers for Daniel about 2 years ago. But I distinctly remember reading how fluorescent lighting CAN, but certainly not always, cause major problems for someone with tics. This obviously includes fluorescent lighting at schools and at home. Also I remember reading that seizures can be brought on buy a flickering tv or movie screens. I also remember reading of a man who said that any flashing lights would bring on seizures. One time he had a police car pull up next to him at night, with its lights flashing, and he instantly went into a seizure. He also had to avoid fluorescent lights.

 

I guess my point in sharing this is is she exposed to fluorescent light in your house. For example, in your laundry room or kitchen? Also do they use fluorescent light at school?

 

For her this may have nothing to do with what it going on with her but it certainly could be part of the issue. I remember, after reading this, wondering with Daniel if fluorescent lights would bring on more tics for him. I went out in the garage and got a small fluorescent light we had and held directly in front of him. It did not bother him one bit. But at the time, this was way prior to understanding all the artificial foods he is sensitive too, it was a way to figure out if this was one of his triggers.

 

I also wonder could someone has a delayed reaction for flourecent lights/flickering lights that may not show right a way? I have no clue but it seems some people do have delays in there exposure to something and then the tics coming forth.

 

Also Wendy has she been swimming a lot? Do you use a pool shock system that would be high in chlorine?

 

Wendy I will absolutely continue to pray for you. I am so sorry I did not respond sooner to you. I have had very little time to sit down at my computer the last few days.

 

Carolyn