Fundraising has officially started!Read more
I wrote up a press release on Wednesday and sent it off, not expecting to hear anything for a week…
Things have been so crazy, with all the Doctor appointments and trying to get ready for our appointment in Baltimore…
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Today I was at Walmart getting my nails filled in (My sister in law got them done for a Christmas…
Hospital UpdateRead more
Last week, Stryder was admitted into the hospital to undergo a VEEG (Video EEG). Dr. Bell wanted to watch him…
Landau-Kleffner SyndromeRead more
I have had some time to reflect on this new diagnosis. A part of me is glad that we have…
- I never know where to start with these posts, so I suppose I will start with yesterdays Dr. appointment:
- Stryder had an appointment with Dr. Bell at Bend Neurological Associates yesterday; he has had several EEG’s, and all have come back abnormal. The first EEG was done with Dr. Bell almost 2 years ago. While there was not a recorded seizure, there was slow waves in the language area. The next EEG came when we went to the Mayo clinic, this one was an overnight EEG with video. The results of this one also had slow brain waves in the language area as well as a recorded seizure. Stryder was put on Keppra to help prevent and stop the seizures. Prior to this, he could not speak and was diagnosed by the Dr’s at the Mayo with Severe Verbal Apraxia. Stryder went through intensive speech therapy and started on his medication an instantly was able to talk. Stryder has still been having seizures, so the Keppra was given at higher dosages. Dr. Bell wanted to have another sleep deprived EEG in order to see if the slowing was gone with his increased medication, so that’s just what we did yesterday.
- The EEG itself is only about 45 minutes. They gave Stryder some oral medication to help him sleep during this time. These types of EEGs do not usually show seizure activity because they are relatively short and as I sit in the chair while Stryder was sleeping, I thought that everything would be normal. Stryder’s language has been deteriorating, he is forgetting words and how to do things. It’s a scary thing watching your son forget common words to common things. He even did not remember who Daddy was and that’s when I realized it was a language problem because he knew WHO is daddy was but did not recognize it in a sentence, asking what his name was. He has forgotten what cottage cheese was, even though he has it almost every morning for breakfast-this was the first real thing I noticed he forgot and my first thought was a stroke or some other huge problem.
- After the EEG, Dr. Bell came in the room and said he was so glad he had this done! He was excited, he witnessed something very rare. Stryder had 1-2 seizures every single second, and they started immediately after he fell asleep and continued through the entire EEG. Dr. Bell mentioned that he thought it might be Landau-Kleffner-syndrome! I, of course had questions: Was this common or rare, is it treatable, and what do we have to do? Dr. Bell said that it was extremely rare, he even said he was fascinated with Stryder and his EEG, never seeing this happen before. It just so happens that Dr. Bell had written a paper on this syndrome and knew that there was treatment that may work. There may be some permanent damage, but if we can stop the seizures, we can hopefully stop more damage.
- He asked if I wanted to see the EEG- of course! I went into his office and it was clear as day. All the parts of his waves were “flat” and then there was that one line that had many spikes-he pointed them out and showed me that in between every line was ONE second!!!! Not a minute, a second and there were at least one or two spikes in between every line. I could not sleep last night, kept picturing that EEG and wondering if I should ever let Stryder sleep again. I can’t imagine the feelings he is having. He often has a seizure and will say he had a nightmare and even on the ride home he asked me if I remember looking at the blue lines with Miss Bell. (He meant Dr. Bell, but this is again part of his language problems.) He then said that at the end, when there were lots of squiggles, he was having a nightmare. He has said many times he has nightmares and can’t tell us about them. Those are usually the seizures he is having.
- Dr. Bell is writing to Dr. Edyth Strand and Dr. Renaud about his findings. Edy was Stryder’s intensive speech therapists and one of the top speech Dr’s in the world. Dr. Renaud was Stryder’s primary Dr at the may, she is also a neurologist. Both of these Dr’s are at the Mayo clinic and have also been colleagues of Dr. Bell. He said he is fascinated by all of this and seemed excited to have such a rare condition come his way.
- The Plan: Tuesday Stryder will get admitted to the hospital and will have a video EEG for 36-48 hours. The first night will be an EEG with his current medication on the highest dosage allowed and if the seizures stop, we will keep treating it with his Keppra. The second night they will administer high doses of Valium. Dr. Bell said that adults cannot tolerate these levels but children can, but we will need to monitor it.
- Dr. Bell wrote down the name and said that I needed to research it on the computer, get educated. It turns out that it is extremely rare but it seems to fit Stryders recent language problems. There is a little more info on the Epilepsy Foundation site, but not much. There is a 40% chance that this plan will stop his seizures, so we are praying that Stryder will be in this 40%. I do not know how long he will have to be on Valium but it’s better than destroying his brain every night while he sleeps.
I really hope that this is what it is so that we can treat it instead of always wondering what we are dealing with.
Whatever form of school placement is chosen, a child with LKS continues to pose many challenges, which the school must adapt to, most notably:
Their condition can change rapidly over time, that is, ‘fluctuate’, making progress at school erratic, and support needs to be responsive to this. Regular monitoring and updating of therapeutic and educational plans is necessary
When the child’s disease is active, performance can vary even within a day, making them susceptible to fatigue and difficulties with concentration. Teachers/LSAs must be made aware of this and careful timetabling of lessons may help to minimize the impact
Despite having significant language difficulties, many children with LKS retain average or above average abilities in the non-verbal domain. However, because standard classroom presentation (instruction and so on) is almost invariably verbal, this means that a special teaching approach must be devised (see below). It is vital that these good skills are recognized and that it is not assumed that the child has general learning difficulties, simply because of the language difficulties
- Epileptic encephalopathies are among the most severe childhood brain disorders, and include many of the rare epilepsies, including Dravet syndrome; Landau-Kleffner syndrome; Lennox-Gastaut syndrome; and West syndrome. Intractable seizures and extreme cognitive deficits are frequent symptoms, and often progress relentlessly to early death.Other cognitive effects of LKS such as slow processing and impaired verbal memory make it even harder for LKS children to understand what is required of them. For example, children with LKS may understand language in a quiet one to one situation, but in a noisy classroom the listening environment is very complex and the child may well be unable to decipher the same auditory information. In other instances, the child may understand spoken information at a simple level, but have auditory memory problems that mean that they are quite unable to remember a sequence of verbal instructions or a story – which would cause enormous difficulty in class and also with playmates. However, the severity of this difficulty may be masked by the abilities that are preserved and by clever use of well-learned social behaviors (children usually want to cover up what they can’t do) and this may be misconstrued as ‘naughtiness’.
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Four-Year-Old Has Rare, Life-Threatening Disease Mackenzie POSTED: 5:43 AM PDT May 29, 2012 UPDATED: 6:03 AM PDT May 29, 2012 PRINEVILLE, Ore. –Dressed up in a plaid button-up, clutching a stuffed animal, Stryder…