Lily is a happy, outgoing, bright 3 yr old. Her first seizure was a month before she turned 3.
On Dec 14, 2009 Lily had her first seizure. It was a Status Epilipticus (this is a seizure that does not stop on its own). Her seizure lasted 45 minutes that night. She was given Atavan to stop her seizure by IV. She was admitted to the hospital that night. They did a CT scan which came back normal. She also had an waking EEG that was normal. Less than 24 hours later she was discharged and we were given a prescription for DiaStat (A med that is given rectally that is suppose to stop a seizure.).
On Jan 24, 2010 she had a second seizure. This one was very mild compared to her first one (which I will describe later in this blog post) and only last 10 minutes. She came out of this seizure on her own. She did go to the hospital that night but was not admitted.
Jump ahead to April 10, 2010. Lily suffered her 3rd and most long lasting seizure. She seized for an hour and a half. The paramedics could not get any of her veins to respond, therefore they couldn't get an IV in her, therefore they could not give her any Atavan. She was given the DiaStat by me that night and it did NOT stop her seizure. Lily was admitted to the hospital that night and we stayed there the weekend.
Now jump ahead again to August 19th (yup last night). Lily had her 4th seizure. I was not home during this seizure. It lasted about 6-7 minutes. Tracy gave Lily the DiaStat and this time it DID stop the seizure! Yay. However at the ER after she fell back asleep she was making some odd twitching motions in her sleep, so they decided to keep her over night. We are home now and she is doing very well.
Other details (and this is where it gets long!). Lily had a dose of the H1N1 flu mist vaccine on Nov 23, 2009. She developed a stuffed up nose the next day, which lasted 5 (yes you read that right) 5 months. She had her stuffed up nose, repeated ear and sinus infections from Dec to April 12. April 12 (yes 2 days after the BIG seizure) she had her tonsils and adenoids out and had tubes in her ears. The ENT doing her surgery said her adenoids were so large they were completely obstructing her airway and that her tonsils were a plus 3 (plus 4 are the biggest you can have). Since having the T and A and tubes, she has not had one infection. But since her adenoids were obstructing her so badly that means the flu mist was most likely trapped in her head for 5 months. Am I saying that is what cause her seizures? Nope, but it's something that I think should be taken into consideration. She had a second dose of H1N1 flu mist 10 days before her second seizure.....
So in Jan she had both a EEG and a sleep study done (not at the same time). The EEG was abnormal, showing that Lily's brain was misfiring every 15-20 seconds when she was awake and every 10-15 seconds when she was asleep. This is when she was diagnosed with Epilepsy. She was put on Keppra and a MRI ws ordered. The sleep study showed that she had both obstructed (adenoids) sleep apnea (when a person stops breathing in their sleep) and centralized (caused by the brain) sleep apnea.
So the MRI was also abnormal. It showed that Lily had bilateral signals arising from her Basal Ganglia. I can't really explain what that means as I am not quite clear on it myself but I do that it is not normal.
Lily also had an abnormal urine test. She had something show up in her urine that she not have been there. Most commonly this is linked to a very rare genetic disease called Canavan. This result does not make any sense as she has NO signs of the disease besides the abnormal MRI and the urine test.
I contact a Dr in New Jersey who has done a HUGE amount of work with Canavan patients. I explained what was going on with Lily and this is part of her reply:
"
Dear Ms. Secrest,
I doubt your daughter has Canavan Disease because NAA in urine is very low as compared to typically and atypically affected Canavan patients which we diagnosed in the past. A slight elevation in urine NAA has been reported in patients affected by other leukodystrophies. Bilateral T1 & T2 abnormalities in MRI signal is commonly reported in mild as well as severe developmental disorders."
Her Dr's at Akron Children Hosp see no other reason for her to have this type of urine test besides Mild Canavan. So we will be getting her tested for the canavan within the next couple weeks. If you are wondering why it has taken so long for us to get the test it is because the insurance company denied the test and we have had to jump through some hoops, etc to get approval for this testing. Please keep your eyes on the blog for further updates on the testing and results.
Now her is a run down on her seizures (not the description, that's next and you'll get a warning first). All of the seizures have been an hour to an hour and a half after she falls asleep for the night. 3 out of the 4 was when she was having a great deal of trouble breathing in her sleep. With ALL of them she has had a croupy like cough days before the seizure.
Ok now the description of her seizures...........
They always start with her vomiting. Then she hyperventilates, her eye rolls and she goes limp, but her eyes remain open. The hyperventilating is really scary because you are not sure if she is getting enough oxygen or not, but she has never turned blue. She has had some slight trembling of her limbs but not that often. The 2nd seizure she vomited but didn't hyperventilate and she was not completely out of it like the other two. The 4th one I cannot say because I was not home when she had it. When I got home about 10 mins later she was no longer seizing.
If you have made it to the end of this blog post, thank you!! Please pass this blog on to everyone you know! Prayers, candles lit, good vibes ect are very much appreciated!
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