Post by Amy Lombardi on Apr 1, 2009 9:03:28 GMT -5
Subject: Change in EEG
Name: Chris Geer
Date Posted: Jan 10, 09 - 3:16 PM
Email: Click here to Email
Message: Jacob has been having seizures (absence and myoclonic) since he was 4 1/2 (now 6yrs old). His first EEG's were considered grossly abnormal due to the amount of epileptic charges. For the most part, we have been able to have control of his seizures with Depakote. He had a EEG in mid March and the results were normal. No seizures and normal function so we knew the Depakote was doing it's job. For a few months now, we had seen an increase in staring spells and different eye movements so at his last appt. with the Neuro, we discussed that these may be an increase in seizure activity. We did not feel comfortable adding another med unless we knew 100% he was having them. Jacob was sheduled for a 6 hr EEG as we felt we could get the info we needed in that time frame. He had this done on Wed. and I had a phone call from the Neuro's nurse yesterday with the results. She said it was abnormal. At first I expected her to say this in regard that he was in fact having more seizures. She then told me there were NO epileptic charges but that there was significant slowing of his brain waves. She stressed the word significant using it several times in our conversation. This slowing is generalized. In the past, not once was there a change when they did the flashing lights but this time there was change. The Neuro said this is another confirmation of the disease and that this is progression and happening faster than we had expected. He was just diagnosed in April. The nurse said this is the likely cause of his being more unsteady, shaky, more fatigue, blank stares, unable to walk farther distances as he had been able to a yr ago, his overall just looking at us (and noted by his teacher) that he just doesn't "get it". His eyes have been more droopy, he does not smile as much....Seems like I could go on.... At this point, we are still unaware of which form we are dealing with but his Neuro said he still seems to fit LINCL. Not sure what to expect or to do at this point. Does this mean we are closer to him losing his ability to walk and other abilities? As of a few mos. ago, he still has his sight.
Name: Corrina Dahl
Date Posted: Jan 10, 09 - 5:17 PM
Message: Chris I just want to say I'm sorry to hear about that. I can't really speak for LINCL because my son has JNCL.
I will say that it seems that no matter the form there is no one way the disease progresses. For example, my son has had only light perception for about three years now. He is 11 1/2 so his sight was a lot worse than other kids his age with JNCL. However, in the last three years we have not seen huge changes in his gross motor skills or his intellectual abilities, although we have seen some small changes.
I guess what I'm saying is that you really never know how it is going to progress. Although, I'm sure, other LINCL parents can give you a better idea about how LINCL progresses than I can.
Name: Georgia Sharp
Date Posted: Jan 11, 09 - 3:50 PM
Message: Chris, Corrina is right, each version of NCL progresses differently. My girls progressed rather rapidly in mental and physcial declines, and we were told we had NCL in 2004. It wasn't until 2007 that we actually knew which version we had, CLN5. We had one day of six seizures and spent a week in the hospital. When we left, my oldest could no longer walk or sit up. We had to emergency remodel our home and order a wheelchair. Two months later swallowing became a huge problem, and we got a feeding tube. It seemed like the disease progressed at leaps and bounds, then slows quite a bit. I tend to try and be a couple of steps ahead, and anticipate the worst. I always advise new parents not to think of the needs here and now, but what will come. We just saw a pulmonologist about preventive steps we can take to keep the girls lungs clear and what we should do when we have a really good cold, all in the hopes of preventing a trach or lung collapse. I now have three new pieces of medical equipment and a game plan in place for the respiration problems that I am sure are to come. I hate each time I have to add another medical component to our lives, it is like admitting that the disease is winning. Hang in there, we all know how gut wrenching it is to see our kids decline, especially when it seems like it happens over night.
Georgia
Name: Bonnie
Date Posted: Jan 11, 09 - 4:59 PM
Message: My daughter had LINCL.She started to have seizures when she was about 3 which we also maintained well with depakote until she was about 4 1/2 at which time she began to have brake through seizures, she was becoming more and more unstable on her feet and we noticed that she was losing her speech and the ability to do things that she could do just a short while before. She was diagnosed with battens just before her 5th birthday which is in May by October of that same year she was no longer able to walk, a g-tube had to be inserted and her vocabulary had diminished to only a few words. She still laughed and gave us many smiles. After this the decline was much slower. God gave us 14 wonderful years with her.
As for the EEG, yes she had many of them over the years. Her first one was normal as well but the changes were very noticeable as the disease progressed.
Name: Peggy D
Date Posted: Jan 13, 09 - 8:02 AM
Message: Chris,
My son had LINCL. His first seizure was at 3, and diagnosis came a little after he was 4. Clumsiness was probably from both the loss of vision and the gradual loss of motor skills. He began to lose ability to walk around age 5 (2 years after first seizure). His EEG's were relatively normal, but he was on 3 different seizure meds to control them. We had a feeding tube placed at age 5, but he continued to be able to take soft foods by mouth till about age 7. No 2 kids seem to progress alike. the 'significant' change the neuro kept talking about seems like it was because of the cell deterioration, which would make sense with your description of the increased fatigue, staring, droopiness, etc. How close are you to him losing abilities - only time will tell. I can remember a few times when a skill was lost, and then somehow months and months later it seemed that it was partially regained, while another area became more affected. A big puzzle. I wish I had an answer for you. Sometimes a med needs to be increased if they have a growth spurt. Those extra pounds and inches sometimes make a difference in the effectiveness of dosage and require slight increases. As someone else posted, if you can try to keep just far enough ahead of the game to predict some equipment he may need in the next 6 months, he will benefit greatly. I would go ahead and consult with his doctor and therapists to get the balls in motion if you don't already have some adaptable seating or bathing equipment and such. You may not need it right away, but will be glad it's there. In our case, we had to fight appeals to get the equipment, so I was glad we began the process before it was urgently needed. I'm so sorry to hear of you going through all this. Many of us have been there and will offer any insight we can. Trust your mother's instinct - 95% of the time, it's right.
Peggy D.
Name: lincldad
Date Posted: Jan 14, 09 - 3:09 AM
Email: Click here to Email
Message: I never found EEG's to be helpful. My daughter reacted violently (rhythmicly) to the strobe, yet the EEG showed nothing. The last one we had showed nothing, yet right there on the bed in the room, ticks clicks and whatever else. EEG's never really established whether we were having muscular issues or the intended purpose of nuerological seizures.
In the grand scheme of things, my daughter's functioning went quickly, in about 2 1/2 years after recognizing a serious problem she was mostly nonambulatory. Things went in spurts, a little while downhill then a little while on a plataue.
Some things to think about. 1. Get a very good (sympathectic) doctor, this doctor can be in addition to any other doctors. Nuerologists are NOT. 2. Begin researching local medical supply companies. Most are not on your side, they are in the business of making tons of money off of you and your insurance. 3. DME companies fall under number 2.
Last: Know what you are doing and saying to the medical community. You know your child best, they do not. They react on you. Be forceful and direct, don't worry about feelings, it's all business to them. Remember they have a lisense to "practice" on your child.
my 2 cents..
Name: Chris Geer
Date Posted: Jan 10, 09 - 3:16 PM
Email: Click here to Email
Message: Jacob has been having seizures (absence and myoclonic) since he was 4 1/2 (now 6yrs old). His first EEG's were considered grossly abnormal due to the amount of epileptic charges. For the most part, we have been able to have control of his seizures with Depakote. He had a EEG in mid March and the results were normal. No seizures and normal function so we knew the Depakote was doing it's job. For a few months now, we had seen an increase in staring spells and different eye movements so at his last appt. with the Neuro, we discussed that these may be an increase in seizure activity. We did not feel comfortable adding another med unless we knew 100% he was having them. Jacob was sheduled for a 6 hr EEG as we felt we could get the info we needed in that time frame. He had this done on Wed. and I had a phone call from the Neuro's nurse yesterday with the results. She said it was abnormal. At first I expected her to say this in regard that he was in fact having more seizures. She then told me there were NO epileptic charges but that there was significant slowing of his brain waves. She stressed the word significant using it several times in our conversation. This slowing is generalized. In the past, not once was there a change when they did the flashing lights but this time there was change. The Neuro said this is another confirmation of the disease and that this is progression and happening faster than we had expected. He was just diagnosed in April. The nurse said this is the likely cause of his being more unsteady, shaky, more fatigue, blank stares, unable to walk farther distances as he had been able to a yr ago, his overall just looking at us (and noted by his teacher) that he just doesn't "get it". His eyes have been more droopy, he does not smile as much....Seems like I could go on.... At this point, we are still unaware of which form we are dealing with but his Neuro said he still seems to fit LINCL. Not sure what to expect or to do at this point. Does this mean we are closer to him losing his ability to walk and other abilities? As of a few mos. ago, he still has his sight.
Name: Corrina Dahl
Date Posted: Jan 10, 09 - 5:17 PM
Message: Chris I just want to say I'm sorry to hear about that. I can't really speak for LINCL because my son has JNCL.
I will say that it seems that no matter the form there is no one way the disease progresses. For example, my son has had only light perception for about three years now. He is 11 1/2 so his sight was a lot worse than other kids his age with JNCL. However, in the last three years we have not seen huge changes in his gross motor skills or his intellectual abilities, although we have seen some small changes.
I guess what I'm saying is that you really never know how it is going to progress. Although, I'm sure, other LINCL parents can give you a better idea about how LINCL progresses than I can.
Name: Georgia Sharp
Date Posted: Jan 11, 09 - 3:50 PM
Message: Chris, Corrina is right, each version of NCL progresses differently. My girls progressed rather rapidly in mental and physcial declines, and we were told we had NCL in 2004. It wasn't until 2007 that we actually knew which version we had, CLN5. We had one day of six seizures and spent a week in the hospital. When we left, my oldest could no longer walk or sit up. We had to emergency remodel our home and order a wheelchair. Two months later swallowing became a huge problem, and we got a feeding tube. It seemed like the disease progressed at leaps and bounds, then slows quite a bit. I tend to try and be a couple of steps ahead, and anticipate the worst. I always advise new parents not to think of the needs here and now, but what will come. We just saw a pulmonologist about preventive steps we can take to keep the girls lungs clear and what we should do when we have a really good cold, all in the hopes of preventing a trach or lung collapse. I now have three new pieces of medical equipment and a game plan in place for the respiration problems that I am sure are to come. I hate each time I have to add another medical component to our lives, it is like admitting that the disease is winning. Hang in there, we all know how gut wrenching it is to see our kids decline, especially when it seems like it happens over night.
Georgia
Name: Bonnie
Date Posted: Jan 11, 09 - 4:59 PM
Message: My daughter had LINCL.She started to have seizures when she was about 3 which we also maintained well with depakote until she was about 4 1/2 at which time she began to have brake through seizures, she was becoming more and more unstable on her feet and we noticed that she was losing her speech and the ability to do things that she could do just a short while before. She was diagnosed with battens just before her 5th birthday which is in May by October of that same year she was no longer able to walk, a g-tube had to be inserted and her vocabulary had diminished to only a few words. She still laughed and gave us many smiles. After this the decline was much slower. God gave us 14 wonderful years with her.
As for the EEG, yes she had many of them over the years. Her first one was normal as well but the changes were very noticeable as the disease progressed.
Name: Peggy D
Date Posted: Jan 13, 09 - 8:02 AM
Message: Chris,
My son had LINCL. His first seizure was at 3, and diagnosis came a little after he was 4. Clumsiness was probably from both the loss of vision and the gradual loss of motor skills. He began to lose ability to walk around age 5 (2 years after first seizure). His EEG's were relatively normal, but he was on 3 different seizure meds to control them. We had a feeding tube placed at age 5, but he continued to be able to take soft foods by mouth till about age 7. No 2 kids seem to progress alike. the 'significant' change the neuro kept talking about seems like it was because of the cell deterioration, which would make sense with your description of the increased fatigue, staring, droopiness, etc. How close are you to him losing abilities - only time will tell. I can remember a few times when a skill was lost, and then somehow months and months later it seemed that it was partially regained, while another area became more affected. A big puzzle. I wish I had an answer for you. Sometimes a med needs to be increased if they have a growth spurt. Those extra pounds and inches sometimes make a difference in the effectiveness of dosage and require slight increases. As someone else posted, if you can try to keep just far enough ahead of the game to predict some equipment he may need in the next 6 months, he will benefit greatly. I would go ahead and consult with his doctor and therapists to get the balls in motion if you don't already have some adaptable seating or bathing equipment and such. You may not need it right away, but will be glad it's there. In our case, we had to fight appeals to get the equipment, so I was glad we began the process before it was urgently needed. I'm so sorry to hear of you going through all this. Many of us have been there and will offer any insight we can. Trust your mother's instinct - 95% of the time, it's right.
Peggy D.
Name: lincldad
Date Posted: Jan 14, 09 - 3:09 AM
Email: Click here to Email
Message: I never found EEG's to be helpful. My daughter reacted violently (rhythmicly) to the strobe, yet the EEG showed nothing. The last one we had showed nothing, yet right there on the bed in the room, ticks clicks and whatever else. EEG's never really established whether we were having muscular issues or the intended purpose of nuerological seizures.
In the grand scheme of things, my daughter's functioning went quickly, in about 2 1/2 years after recognizing a serious problem she was mostly nonambulatory. Things went in spurts, a little while downhill then a little while on a plataue.
Some things to think about. 1. Get a very good (sympathectic) doctor, this doctor can be in addition to any other doctors. Nuerologists are NOT. 2. Begin researching local medical supply companies. Most are not on your side, they are in the business of making tons of money off of you and your insurance. 3. DME companies fall under number 2.
Last: Know what you are doing and saying to the medical community. You know your child best, they do not. They react on you. Be forceful and direct, don't worry about feelings, it's all business to them. Remember they have a lisense to "practice" on your child.
my 2 cents..