Abram Henry's fight against West Syndrome
ChatBox - Type your name and leave a message.

Wednesday, August 17, 2011

Autism: the Next Frontier

One more diagnosis, but the same sweet little Abram...
After Abram made three visits to Children's Autism Center for testing, Brandon and I met with Abram's Clinical Psychologist there yesterday, who confirmed that Abram does have Autistic Disorder. Since 40% of the kid's with West Syndrome develop Autism due to the seizures, Brandon and I knew that this was a big possibility, so it was not a big surprise.
For those that are not very familiar with Autism, a diagnosis of Autism is made when a child displays at least 6 of 12 symptoms across the three areas of: social interaction, communication, and behavior. According to Children's, Abram tested evenly in all three of these areas.
In addition to the diagnosis, the Psychologist at Children's spent nearly an hour talking through her recommendations for Abram, answering questions that I had, and explaining the two large resource books that she gave to Brandon and I.
In some ways, Autism seems like an easier thing to rap my head around than epilepsy. There aren't any Frankenstein size brainwaves like hypsarrhythmia that threaten to fry the brain, and the number one treatment for Autism is not also the leading cause of a high death rate (as it is for West Syndrome).
For now, the main focus is getting Abram to engage more, and learn more skills. His psychologist said that after he works on that for the next 18months, they would like to do another assessment, and check on his progress. One thing that she mentioned is that Autistic children are usually harder to motivate to learn, as they are typically incentivized by concrete things, and food (not by social motivation). It makes perfect sense that Abram's newfound freedom to eat whatever he wants has inspired a desire in him to communicate, and interact with others more.
Abram has been babbling a lot, plus he is using sounds in addition to hand-overhand communication. "Ba ba" means bath, "wa wa" for water, "mmmm" for more, etc. He still uses the few signs that he knows as well, but I have been working on getting him to try to use actual speaking to communicate too. He definitely seems to have his own unique talents, and intelligence. He notices things, and figures out things that even my older kid's have trouble with. Abram can whistle, snap his fingers, and move just about any object in order to get into mischief.

Much thanks to all of you for your support and prayers as we trek down a new road. It is much appreciated.

Lamb Henry

Thursday, June 16, 2011

Fun With Food!

After 3 years of being on the very restrictive Ketogenic diet, Abram has found carbohydrates to be delightfully fun. The first time I game him a cookie, he seemed a bit unsure as to what he was supposed to do with it.

Of course, his siblings have been more than happy to show their brother how to eat just about anything in the baked good department.

Abram has entered this new world of food inclusion with all of his senses ready to take it all in! He insist on making every meal, a multi-sensory experience.

Part of his scientific of discovery process is estimating the density of each food by the highly specialized process of crumbling. Yes, he really insist on it. REALLY. If I stop him from this important research process, he gets rather fussy. So, some degree of mess has become excepted.
I just hope that if "works" can get me into heaven, it will be the specific work of sweeping. It does seem to be my new hobby, and I enjoy it more than weighing food on a gram scale (that was so months ago).
When I give Abram warm food, he will often put it up to his face to feel the temperature before he tries to eat it.

So far, Abram is a huge fan of chocolate, Cheetos, yogurt, and toast. He still loves butter though. As well as many of the other things he ate on his Ketogenic diet. I have not been able to get him to eat apples since he has had more choices though. Even when it comes to homemade apple pie, the only thing he is interested in is the crust. Since apples were his primary favorite allowed carb on his medical diet, I expect that it may be a while before he is interested in them again.
On Monday, Abram had his last follow up with his neurologist. Now that my sweet little guy has been seizure free for so long, his Dr. said that it is time for Abram to move from having his neurologist be his primary physician, to it being a pediatric developmentalist. Obviously, with Abram's history of having 100 seizures a day, the main goal over the past 3 years has been getting the seizures to stop. Now, it is going to be time to focus on the impact West Syndrome has had on Abram's developmental state. His neurologist said that he wished that stopping the seizure would have made a bigger difference in Abram developmentally.
Sadly, there have not been any dramatic changes in that department. He has been making slow but steady progress in his non-verbal communication, but that is about it.
Without seizures, or a crazy diet, Abram just seems happier, more energetic, and interested in communicating with those around him. The neurologist also told me to look for Abram doing any strange repetitive actions, as an indication of a return of seizures. There is a 40% chance of the seizures returning in kid's with West Syndrome, though I don't except it. Austim is also a very common side effect of West Syndrome. On my request, Abram's neurologist sent a referral for him to be tested for that at the Austim Center.
There is a genetic test that the neurologist wants to be done there too, called CGH Array. I can't remember if that was included in the genetic testing that Abram had done about a year ago. I am just waiting to double check his medical records before scheduling more testing.
The neurologist said that he believes that Abram's seizures, West Syndrome, poor sleep, and developmental delay are all connected. With the CGH Array testing, there have been some connections between West Syndrome and Austim genetically. Though, no chromosomal abnormalities were found Abram's previous genetic testing.
Abram loves playing ball. He can throw it back and forth with his family members. Currently, he is better at throwing than catching. He thinks it is really funny to have Brandon or I throw the ball really high in the air, and he will hand it to either of us just for that purpose, with much excitement ensuring upon seeing it go high into the air.

The month of June has been rather exciting for the whole family. Isaac and Bella are just finishing up their school for the year. Normally, the kid's will do lots of reading in the summer, and I take them on weekly field trips, to keep them busy, and their brains entertained.
The whole Henry family had a great time hosting some dear friends from Texas the beginning of this month. It was great having a little part of Texas with us for a whole week, as well as an extra little one around to adore. Isaac and Bella greatly enjoying playing the part of tour guides around our area, as well as the parks and zoos there was an extra excuse to explore.

For some reason, Bella was extra excited about seeing the sharks.
As if all that were not enough fun for one month, my sister Harmony, is going to be here for a long weekend, to help me get together a pre-school plan for Abram. Harmony, is working on getting her masters in special education, while she works as a behavioral therapist, so she has been an amazing resource for me.
I am feeling really thankful that it is officially time to move from seizure control, to learning development. It will be a long and arduous battle, but with so much to gain, there are bound to be lots of victories along the way.

Lamb Henry

Tuesday, February 22, 2011

Happy Dance Time! The Ketogenic Diet is OVER!

Sweet, sweet victory! Yes, after 3 long years, Abram is officially off of his Ketogenic diet! I received the highly anticipated email from Abram's Dietitian at Children's Hospital (below) titled "Congratulations!"

Today’s the big day!

You can discontinue the diet!

Abram is free to eat as he pleases!


Thank God! Our prayers have been answered! Abram is still seizure free, medication free, and he gets to eat like a normal person again. *Sigh*
Abram had been eying some of the Valentine's treats I had made, so to celebrate his being off of his 90% high fat diet, he received his first sweet treat in years: a homemade Scottish Oatmeal Scone, with icing. He seemed VERY pleased to be handed such a baked good, but he was rather concerned that I would change my mind about letting him have it. So, you may see him trying to hide it under his arm in the first couple of photos.
After hiding it, and taking it for a few runs around the room, Abram finally took some cautious taste...
Then he commenced his happy dance...

Everyone should have a happy food dance!

Isaac and Bella enjoyed getting to see Abram have a sweet treat for the first time in many years!
When I talked to Brandon about the good news, he noted that the whole family would even be able to go to a restaurant together. I feel very blessed to be a part of a family that has been willing to sacrifice to keep Abram on the Ketogenic diet for so long. Simply going to dinner as a family as not been possible. It has been a daily challenge for sure, but it has been Abram's miracle, and worth everything!
In the words of Garfield "You know what a diet is don't you? It's "die" with a T!"
As you can see, Abram enjoyed every bite of his scone! The rest of the family and I are looking forward to Abram being able to eat food without the worry of having to rush him to the emergency room if he has too many carbs. I am sure there will be an adjustment period before Abram realizes that he his free to eat what he pleases, and I am curious to see how he is going to respond.
I expect that there will be a lot more happy dancing in the future... from both Abram, and me!

Thanks so much for all your encouragement, support, and prayers. We made it! We survived! It was worth it. Thank God!

Lamb Henry