Hannah went to Epilepsy camp last week, and as usual, had a blast. She loves seeing all her friends there and made a couple new ones. There were two new campers and Hannah took them right under her wing! SO cute!!
When she got home we noticed that she was wetting her pants. I got into her bag to wash her clothes and noticed that her clothes were wet as well... I knew she was having seizures... I started to pay very close attention to her. Then we saw it.... She is having absence seizures again. These are the type she had when she was first diagnosed with epilepsy. She hasn't had absence seizures since Kindergarten. And even then she would wet her pants. But, it didn't seem like it was as often.
So, at the start of the week, I took her into the pediatrician because I know the first thing docs will want to rule out is a UTI. Her doctor tested her, but absolutely no infection. She agrees they are absence seizures. I have noticed several seizures... she stares towards the ground and completely misses whatever conversation was occurring... then she wets her pants. She is wetting 2-5 times every day, but I have seen some seizures without her wetting, so who knows how many she is having....
I was talking with my sister in law (who watches the kids while we work) and our neighbor....Both of them said they have seen her zoning out and then all the sudden coming back to the conversation. I am thinking if they are noticing them, they are probably happening often.
The good news is that Blitzen picked right up in them. I can tell that he knows they are different. He will sniff her and then paces back and forth between Hannah and me. Sometimes he even whines...
I have been really racking my brain as to why these are coming back. It hit me like a ton of bricks this morning...... puberty. I know, I am a little slow. I have been warned and even telling the school teachers, anything is possible when she hits puberty. ugh. How many more years of this????
Since we are currently "in between" neurologists, I am trying to get her into see a doctor. I have no idea when that will be. In the mean time, I am trying to help her not be completely embarrassed when she soaks her pants; not an easy task at all....
Friday, July 30, 2010
Subscribe to:
Post Comments (Atom)
Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
2 comments:
I hate hate HATE all the guessing we have to do. The piecing together. And ruling out. Even when we know that we know.
I am absolutely certain Trevy had a seizure at the park yesterday. He had been running and running and running...until his little unable to sweat face was beet red. So I made him sit in my lap and eat cheetos. ::smile:: That was his incentive to stay. As he was sitting there...I felt it. His whole body started twitching. Like a shiver...except much less organized. And even though I couldn't see his face...I knew. I happened to have a Mommy's Helper (state paid) with me...she saw too. And though she's never seen a seizure before...she agreed.
And yet. I still feel like I'm guessing. The neuros will think I'm guessing. The EEG will not be accurate. Blah blah blah.
I hate it. I HATE it all.
Ugh.
Well...I hate it all except Blitzen! That's a positive point I guess.
((((((((((hugs))))))))))))
...danielle
Danielle....
I know exactly what you mean... You KNOW what you see, but somehow you still ask yourself, really??? I was just shocked that after 4 years, here they are again... You would think nothing involving seizures would surprise me anymore... I know it is going to make school even that much harder for her. I hate it.
So sorry to hear about Trevy's seizure. Did you call neuro? I know that is like a kick in the gut. Hang in there.
Marcia K
Post a Comment