Diagnosis Frustration Absence Seizures

Barbara - posted on 02/10/2009

My daughter started to have absence seizures when she was 2 1/2.  When I took her to the neuro for her  1 hr eeg she did not have any seizures. Of coarse she had two in the parking lot when we were leaving.  When I called the neuro the next day He said she was fine.  I insisted that she was not and requested a 24 hour eeg in the hospital.   Afterwards her stay in hospital the Dr. said there was significant seizure activity. They started her on lamictal which did not work for her, kept her up at night and caused a build up of fluid in her ears. Which they had to put tubes in to drain the fluid. (that is another story)

It took almost two years before they found the correct "cocktail" to help control her seizures.  This past Nov.  she had another 24 hour eeg,  this one she was able to do at home.

You have to keep pushing for the 24 hour eeg.  That is the only way to tell for sure.  

My daughter, who is now 6, also has a learning disability, speech delay and motor delay.  In addition she has ADHD and she has her moody moments and also goes from calm to angry very quickly.  That can be from her frustration of not being able to find the words to communicate.   

Stick to your guns, you know your child.   I hope this helps.

Sharon - posted on 02/05/2009

Hi Jen both myself and my daughter suffer absentee seizures, the original diagnosis for her was ADHD and years ago myself  they use to call it daydreaming so on all my school report cards it read " Sharon has a tendancy to daydream" ,  then my next diagnosis was petit mal and they said I would grow out of it .

My daughter is now 17 and I am 48 not always does it show on the EEG.

They thought I was Nuts I had one Dr who told to go home and take my Medication and leave the diagnosis to them. As my child had ADHD and that was what they diagnosised and that was final. But I too was lucky a girlfriend of mine was a RN Nurse and was at my home when my daughter was making a choc milk and stopped in the middle of making of putting the choc into the glass of milk, on this particular day though the hand that was not holding the spoon she shook, and my girlfreind was able to walk around her and do a clinical diagnosis for me to take back to the DR.

Take Heart if you get now where with your Neuro, Just keep fighting them and stand your ground, change Dr's if need be, but go with your gut. If I had not gone with my gut  My Daughter would still be on ADHD meds

Cheers

Sharon

Elissa - posted on 02/04/2009

YES!!! My son started having absense seizures at the age of 12 months... he also had a developmental and speech delay that we were seeing infant development specialists about. He was so clumsy, and by 2 and a half was struggling to put 2 words together in a sentence. His speech was also slurred. We had an EEG which came back inconclusive... not normal, but no seizure either. The pediatrician told us to wait and see. EVEN WHEN HE HAD A FULL BLOWN GENERALIZED SEIZURE AT DAYCARE, WITH ONE PRIOR GENERALIZED SEIZURE IN HIS MEDICAL HISTORY, the pediatrician was reluctant to call it a seizure because the daycare provider had not observed him convulsing, although she heard it from the other room, he was past that stage by the time she entered the room.. They sent him for another EEG (4 months down the road) After that, I got so frustrated with the pediatricians (we saw several) in my home town that one day I packed him up and took him to emergency at our regional children's hospital. (almost 2 hours drive from here) He was seen by the head of pediatric neurology who specializes in seizure disorders the same day, was sent for an MRI and subsequently was diagnosed with a seizure disorder due to abnormal brain development. They recommended he be put on a low daily dose of Clobazam. I am a person who HATES drugs, and I was so reluctant to have him on meds... this felt like defeat for me. They told me that there is a good chance he will outgrow them, so I chose to not medicate him at that time. Two generalized seizures, 10 months apart with the prospect of him outgrowing them, seemed ok in the face of trying to give him daily meds. He had another generalized seizure 7 weeks later... and I changed my mind. That was 2 months ago... let me tell you, for 2 and a half years I had a baby... and then within the last 2 months, my son has gone from struggling to put two words together, to speaking in complete coherant CLEAR sentences, he is not tripping and falling as much, his fine motor skills, problem solving skills and gross motor development have all caught up and surpassed his age expectations. (He was previously 12 months behind in his development) The medication has made ALL THE DIFFERENCE IN THE WORLD!!!

The doctors do not know your child... they do not live with them daily... you have to keep asking and keep fighting to see the people who are going to get the answers. That being said, I know for us it was very hard to determine whether my son was really having a seizure, or if he was just ignoring me. I started carrying around a funny little toy that made a weird noise with me... (Something I knew he'd turn his head for) I used it to test him. If I thought he was having a moment... I would hold the toy out of his line of vision and set it off... if he turned his head, I knew he had just been ignoring me... if he didn't, then I was pretty sure he was having a seizure. I also started logging days, times, sleep schedules, and overall health because sickness and sleep deprivation can trigger more seizures... it was helpful for the doctors to see the patterns. I never noticed how many absense seizures he was really having... but the neurologist told me that for him to have that type of developmental delay, they had to be happening multiple times a day.



My advice would be... keep asking until someone gives him an MRI... another EEG probably won't give them different answers.

Jackie - posted on 02/04/2009

In regards to Amanda response she has some really good points b/c my son does the exact same things that her daughter does. if he has to concetrate then he has alot of the seizures and I've started to notice that he also has them now when he is sleeping. You need to take her advice and monitor what u notice causes them and bring that up to your dr.

Amanda - posted on 02/04/2009

My daughter also suffers from absent siezures. She started siezing before they even finshed hooking her up to the EEG equipment. My problem was getting them to see her. I stared telling them at 10 1/2 months that something wasn't right.... It took me demanding that they do something!!! She wasn't diagnosed until she was 3. She is 6 now and mood swings just come with the package. The 24 hour EEG is probably your best option. Also monitor your daughter for "trigger" If Hannah is sleepy or over stimulated she will have more siezures. Let the technichain know what you've obverved and make sure those triggers are administered. Good Luck!!! Best wishes and God Bless!!!!

Lana - posted on 02/03/2009

Geeze woman i know what you mean!!! I cried out to everyone about my son, yet everyone told me to dissipline my child as his anger outbursts and moodyness was wrong, but i knew differant. How could my son go from this happy-go lucky boy to this boy i bearly knew?? Then one day i saw him have a absent seizure, no one belive me. The doctors book my son into hospital for "observation" and to do a EEG. Thanx to tecnoligy otherwise they wouldnt of pick up on his seizures as i took a peek at the Hospital file and in BIG BLACK lettler the nurses and doctors wrote : No seizures or similar were observed. Ha! Even the doc's and nurses are so  NON-observent, is not a grandmal seizure that last for a while.. Absent seizures  last for a few secs!!

Maby the doc's and nurse sould just listen to the mothers of theise children, what happened to a mothers instinct??

My greates wishes,

Lana May 

Jackie - posted on 02/02/2009

Yes, I had the same problem but luckely my sons EEG should that there was some abnormality and that he needed to see someone about it. We are just now getting to go see a ped. neurolgist on the 10 th of Feb. so I hope that we can find something out real soon. I am really worried about what they are going to say when we go up to St. Louis b/c he has gotten worse since he first started having these seizures. I really know what you are going thru so if you ever need someone to talk to i'll be glad to talk or listen either one. hope that things get better and I'll keep you in my prayers.

Rachael - posted on 02/02/2009

Hi

My son has autosm and epilepsy and he started having seizures about a year ago, most of them are absence / complex partial. We werent sure at first it he was just shutting off because of his autism. Alex's eeg came back ok but he would only tolerate it for around 5 minutes because he was so distressed. I kept a log of how many times it was happening and so did school and family. The paed made a diagnosis form this and the couple that they saw in clinic.



Take care

Rach xx

Lauren - posted on 02/01/2009

My son has Grand Mal Seizures not absent ones but first EEG showed nothing. The second showed a small abnormality. He's having an MRI on Friday so hopefully that give us some answers.



Goodluck,

Lauren.

Deana - posted on 02/01/2009

My daughter has absence seizures--although she's been seizure free for 2 years now but I say document at home how often, when and for how long it hapens and definitely a second and even a third opinion if you have to...a 24 hr EEG is definitely something to request if the next EEG is good..... good luck and God Bless...I'd be happy to chat more if you'd like to!

Barbara - posted on 02/01/2009

Yes she is on meds.  Keppra, felbatol and zonegran.  

Ali - posted on 01/31/2009

We are going through the same thing with my daughter right now who also has down's syndrome and is autistic.  She has numerous staring spells throughout the day.  She also had 3 during a 45 minute app't with her respitory ped so she consulted with the neuro right away and they put her on a drug (I can't think of the name right now) but it made her really anxious so they took her off of it.  She has gone for 2 EEGs that have showed nothing.  Her neuro said that this doesn't mean anything though because it is just a 20 min window so maybe it just didn't happen during that time.  He is arranging for her to have a 24 hour EEG done in hospital.  Maybe that is what you need to request - a 24 hour EEG.  Ali

Jen - posted on 01/31/2009

She is going to another Neuro this week at DuPont, so hopefully we get somewhere. She was only at the ped for a sick visit, but his wife is a neuro at DuPont, so we're going to try there and he got us in very quickly.

Is she on medication?

Barbara - posted on 01/31/2009

If you live in the Boston area I could be of some help.  You should definently be with a neuro and not the ped.

My daughter also has absence if you want to talk

Barbara

Barbara - posted on 01/31/2009

If you live in the Boston area I could be of some help.  You should definently be with a neuro and not the ped.

My daughter also has absence if you want to talk

Barbara