Opisthotonic Sterotypies with Cognitive Dissociation

Don't worry, we couldn't pronounce it either. Whit was monitored for 24 hours and it was determined that she is not having seizures. The event that happened last Monday night where she seemed out of it and tired afterward was a perfect example of her new diagnosis. We've known that she has these episodes of opisthotonic posturing, but never could seem to get anyone to explain what it meant and why she was doing it. ...until we met the doctor that visited us while in the Epilepsy Unit this week. He happens to be a Movement Specialist and Neurologist who works in the same office as her current Neurologist and Neurosurgeon. He explained that there are many kids that have stereotypies. They are similar to tics. The difference is that tics tend to start later in childhood and are typically unilateral, meaning happening on one side of the body. Sterotypies are typically bilateral and start at an early age and tend to be more involved than tics. Whit uses her whole body to arch her back leaving only her heels and the top of her head touching the floor. She then flails her arms wildly and pants. Sometimes she holds her breath, but doesn't pass out. The doctor explained that when she holds her breath, she is experiencing "cognitive dissociation." Kind of like being in a zone, but not completely absent-minded.

As much as we are relieved that she is not having seizures, we are now concerned about the extent to which she carries out these episodes. She seems not to have control over when and where they happen, hence the reason that she cannot sit in a highchair or other seating that does not have a back on it, not even a shopping cart. She often throws herself backward and with her high pain tolerance, she is certain to hurt herself if we don't keep tabs on it. The doctor explained that sometimes when kids get older and realize what they're doing they may be able to exchange the action for something less "obnoxious." (that is my word, not the doctor's!) We are hoping that is the case. I would hate for her to be walking someday (assuming she will walk one day) and fall backward to put herself into this posture. It kind of looks like she's a member of the Cirque du Soleil! She's very flexible :) I have started joking to the boys that Whit is playing Twister when she does it! You have to learn to make light of situations to keep the sadness away sometimes!

We are happy to be back home to our boys and get things back to normal. They were all very worried about their baby sister and were so relieved when they heard that she was just fine.

It's funny how things work. Just when I think to myself that it's been a while since we made a trip to Cook Children's we seem to be back on the road for something new. I'm hoping things are going to calm down for a while. Hunter and Chase are both playing soccer and baseball. Hunter's baseball team is practicing 3 times per week and he has soccer twice per week. Chase's teams each practice once per week. Things are already crazy enough around here with that kind of schedule!

CT Scan and Another Trip to Cook Children's

Whitney has been "arching" a lot more lately and her speech therapist even mentioned last week that Whit's forehead seemed to be bulging more than usual. Whitney was running a low grade fever on Wednesday of last week, so I took her in to see her Pediatrician on Thursday. Both of her ears were infected which makes the second ear infection in 40 days :( Her ears have stayed infected ever since she was taken off her preventative antibiotic for the kidney reflux. Her tubes fell out earlier in the year. Anyway, we discussed putting her back on a preventative antibiotic to try and keep the ears healthy and avoid another procedure (ear tubes) since she's had so much done lately.

While we were at the doctor's office, I mentioned that her speech therapist commented about her head seeming bigger. He asked his nurse to measure her head, and sure enough, he agreed that it had grown a bit too much for his liking in the past 2 months. So, he made a call to her Neurosurgeon to see what the plan would be.

In the meantime, Whitney was feeling better, but still arching (opisthotonus) like crazy over the weekend. Well, last night (Monday) Whitney was playing on the living room floor and we noticed she suddenly got quiet and turned onto her side, but still arching. Jason went over to pick her up and he said that she was "out of it." She just stared at him and seemed like she was dazed. He also said that her pupils were two different sizes. He talked to her and tried to get her to respond, and finally after a few minutes she became alert. However, she was really groggy and tired right afterward for several minutes. Then, I went back into the living room where she had been playing and found a huge chunk of her hair on the floor. I guess she'd pulled out her hair during this "episode" and never uttered a peep about it. We were concerned, so I called the doctor on call. He recommended that we watch her overnight and if she didn't have another episode to bring her in to the office this morning (Tuesday). So, we took her in this morning.

The Pediatrician evaluated her and listened to our story and decided he thought she'd had a seizure. So, he called the Neurosurgeon and Neurologist again and we have an appointment set up for Thursday morning at Cook Children's with the Neurosurgeon. The nurse from that office called today and recommended that we bring a CT scan, so we had to run over to Hendrick and get a STAT CT scan today. The nurse at Cook also told us that from now on we should skip the calling the doctor bit and bring her directly to the Cook ER if we suspect seizure activity given her history. We were told to expect to stay overnight on Thursday if the doctor feels that she needs to be admitted for evaluation. So, we are headed to Fort Worth on Thursday morning bright and early praying that everything is fine. I'll update when we know more.

Swallow Study Complete and Issues with Wheelchair

Whitney had her swallow study done and the good news is that she does not have a problem with her anatomy! The x-rays showed that she's holding the food in the back of her throat and not swallowing until something pureed or liquid comes along. So, she thinks she's choking, but she actually just isn't chewing and therefore isn't able to get the food down without help. So, for now we will just continue to try to help her work on chewing. We were told to ask our Speech Therapist about excercises we could do to help her learn to chew, but so far the ST hasn't had many ideas to help Whitney since Whit can't comprehend what she's trying to tell her. We are working on immitation and exaggerated chewing motions to try to get her jaw and tongue moving. She is still only accepting pureed stage 2 baby foods without complaining. We have been adding some texture to these foods by crumbling finely crushed graham crackers and Gerber puffs into every-other bite of food. Sometimes she does okay with that, but other times she gags.

As for Whit's wheelchair, we are still waiting to find a way to buy her new chair. We still have the chair that the medical supply store loaned us, but it's a really old chair and I don't know how long they'll let us keep it. It's been really nice because she likes to ride in it and we are able to take it into restaurants and use it as a highchair without having to worry about her throwing her head back and hurting herself. It's just really big, so I'm anxious to get the new chair because it's supposed to be much more compact. The problem is that we have not met our deductible this year (which is a large chunk of change). So, our insurance is wanting us to pay a LARGE amount up front before they will even order the new wheelchair. Yikes! We are waiting to see if we can figure out a way to get some help from a local foundation who offers assistance to families of disabled kids who need equipment. Otherwise, we may have to give back the borrowed chair and forget about it altogether. I could write an entire book about the shortfalls of our U.S. system, but I won't. I want to keep this whole experience with Whit as uplifting as possible. I'll keep my personal issues to myself.....for now :)

I've included a few photos of Whit. The first is how I often find her in her crib lately! Yes...she is finally pulling to stand!!!!!! This is HUGE for Whitney. I couldn't believe it the first time I saw it. Time to lower the crib mattress!!!! The second photo was taken right before the began her swallow study. She's sitting in a feeding chair with the x-ray machine in the background. Jason and I had to wear vests during the x-rays, but we were able to stay with her and watch the food as it went down her throat.

Loaner Wheels

The order has been put in for Whitney's wheelchair. We decided on the Convaid Cuddlebug. However, it will still be a while before we get it, so in the meantime we are borrowing an older Kid Kart wheelchair from the store that ordered her wheelchair. They had a family donate this one when their child outgrew it, so we were able to use it for a while! Whitney loves it so far. As you can see from the photo, the boys like it too! They think it's cool and are fighting over who gets to push Whit around in it! It makes me feel good that they are so proud of their sister. I thnk it is beneficial for Whit to have THREE big brothers! I dare anybody to ever pick on her :)

Here's a video of Daddy playing with Whit a couple of nights ago. I thought it was so cute.

Whitney's New Gait Trainer

I am so excited because Whitney's Physical Therapist brought a Rifton Pacer Gait Trainer to our house today for Whitney to borrow and she LOVES it! She is doing so well cruising around in it. It has straps and supports that hold her torso in place while she uses her feet to move along. This is exactly what she's been needing. Here's a video of Whit showing off:

Watch Out....She's on the Move!

Whitney has become much more mobile lately. She has got the army crawl down and will not stay in one place. She is all over the house. As much as I'd like to keep her off the cold tile, she insists on scooting around on it. She literally cannot be left alone for more than a few minutes because she will get into something! You have no idea how happy that makes me :) Her favorite places to go are the laundry room and the pantry. She always finds something fun to play with on the floor in these rooms. She has also learned to stay away from Lilly's cage (our new puppy). We keep Lilly in an icrate in the kitchen when it's too cold outside and she is quite the nipper. She has some sharp little puppy teeth. Whitney has learned not to stick her fingers in the cage because we have warned her that "Lilly bites!" She will creep over to Lilly's cage and get really close, but then she looks over at us as if to ask, "Does she still bite today?" We say in a low voice, "Lilly bites." And she backs away and scoots into another room! I took a short video of Whit army crawling in the kitchen...

I have also been working with Whitney on walking with a gait trainer that her PT let us borrow. It is so exciting to see how much she's improved with the gait trainer. She used to cry a lot when we used it, but lately I can't keep her off of it! We keep her equipment in the dining room and she will scoot into the dining room and try to use the gait trainer without us! I have had to watch her more closely because she hasn't gotten the hang of pulling herself up unassisted yet and I'm afraid she's going to hurt herself without our help. She is really acting like she's ready to start learning to walk with the gait trainer, but I really want to get her a gait trainer like this Kid Walk that she can use on her own without us holding her hands in place and keeping her from falling. As you can see in the video below, she is still really unstable in the torso and with the Kid Walk gait trainer, she would have straps around her torso and a piece in the center crotch area that would help stabilize her and give her the feeling of independence that I believe she needs to start moving on her own. I am going to talk to her PT about either borrowing a gait trainer similar to the Kid Walk or finding help to purchase one of our own. I am still fighting hard to find help with the expenses of medical equipment, but am having no luck so far. She is also due for some new orthotic braces and I'm afraid she is going to need the taller version next time. She has begun turning her left knee in when standing with help whereas before it was only her feet rolling in. The equipment is all very expensive, and even with insurance we are still responsible for a large chunk of change.

We are also still working on getting Whitney a stroller that is adaptable to her needs. I was told about a stroller for special needs children that is similar to a real stroller, but with more support. However, I have been researching and have decided that it would be better to get a stroller that is also the right height to push up to a table and be used as a highchair. This way I could use it at restaurants, etc. We are currently carrying around a stroller and a portable high-back high chair in our car for her to use in restaurants. She is unable to use a typical restaurant high chair because they do not have a back on them and she tends to throw her head back randomly. We are using this high chair, which works great for now, but she is very close to outgrowing it. That is why I'd like to purchase a Leckey Squiggles Seat with Safari Tilt base. It offers the support she needs and is at the appropriate height for eating at a table. Whitney will be 2 years old in a few months and I'd like her to start "sitting" at the table with us. I can't believe she's about to be 2 in May!!! That is so crazy. She's still such a baby to us and I'm loving every minute of it!

Cook Children's has also moved her swallow study from February 4th to February 9th. This will work better for us because Jason will be off work that day and won't have to find someone to trade days with him. I also want to speak with their Speech Therapist who will be there for the study and ask what other services are offered for kids that are this far behind with eating. As you can see in pictures, Whitney is not missing any meals, but I firmly believe the earlier we can get her feeding herself and chewing food, the better her chances will be in the future for regular eating habits.

We are still working with her standing frame too. It is also made by Leckey Squiggles. I have loved this standing frame because she can stay in it for up to an hour a day. I try to play her sign language DVDs while she's in the standing frame. She's a captive audience during this time and I'm hoping she's absorbing the info. I've even got the boys watching the DVDs and working on signs with her. They love it!

There are also many other therapeutic treatments I have come across while reading other children's blogs such as Thera Suit Therapy (VERY expensive) and Hyperbaric Oxygen Therapy along with many other programs that seem promising. However, after reading these blogs about other children it is apparent that most of them have help from either government agencies or private donations. As I said before, we have been denied by every program that I have applied for. But, we will keep trying and find a way to help Whitney by offering every piece of equipment and therapy that we can.

Swallow Study Scheduled

We got a call today from Whit's Pediatrician's office. We finally have a swallow study scheduled at Cook Children's Hospital on February 4th. I am very anxious to find out what it shows. Whitney is still unable to eat anything but pureed baby foods. She can't even tolerate regular food that has been mashed in a food processor because it's too clumpy. Some of her baby foods even have to be "watered down" with milk or formula. She gags way too much for a child her age (19 months). It is frustrating not to be able to put food on her highchair tray and allow her to feed herself, but that is but a minor roadblock in the big picture. I just want to be assured that there's nothing anatomically wrong with her, especially since she had a cleft soft palate at birth. I pray that someday Whitney will be able to eat pizza and chicken nuggets with her brothers. Hopefully this test will show either no problem at all or will guide the doctors to fix whatever the problem may be.

On another note, I am frustrated beyond words with the "system." Before having a child with disabilities I had no idea how expensive things were for these families. Therapy, doctor visits, prescriptions, adaptive equipment, surgeries, mobility devices, etc. are so costly. To top it off, our precious U.S. government and state services are impossible to deal with. We do not qualify for many programs due to income levels (though we don't make much for a family of six). We have been put on waiting lists for programs that offer help to children with disabilities. Some of these programs may take years for our name to come up, and others we may never see. Luckily we are able to utilize ECI (Early Childhood Intervention) services for Whit's therapy sessions, but that will end when she is 3 years old as their program only covers children up to that age. I have been around and around with each entity trying to find help with paying for equipment and medical bills only to be turned down (medicaid, social security, children with special health care needs, etc.) If anyone knows any tricks or has any advice, please pass it along! Whitney desperately needs a wheelchair/stroller and it doesn't look like our insurance is going to be very helpful. These devices typcially cost around $3,000-$4,000. I have looked for used chairs and equipment too, but it is difficult to find pediatric equipment that is in good condition or that fits little tiny girls. It saddens me that this is a problem for so many families with handicapped children.

In the meantime, here is a video taken today of Whit and the many new tricks she's learned recently.