Welcome

This site is not just for those who have children with Cerebral Palsy but those who have, know, or who are disabled people. This sites intention is to help those who dont know, and for those who do to help others. I want this page to be a ongoing learning experience where we can share our experience and help eachother. As a special mom its hard not knowing and not having people to relate to. I hope this will provide comfort somewhere to as many people as possible. Please share and comment as much as you would like!

Tuesday, October 19, 2010

Follow up EEG

Kale was diagnosed with Infantile spasms when he was 4 months corrected, he had his spasms controlled by 3 months later. We tried a drug called Vigabatrin first which didn't work then we tried ACTH ( adrenocorticotropic hormone) this was an injection we gave him I.M. (intermuscular) in his thigh every other day. This drug caused weight gain, and crankyness which I think was due to his huge appetite. In short which I will update on Thursday, Kale has has lots of EEG's one of which we are going to tomorrow Wednesday October 20th 2010. So I will be very busy tomorrow with no time to blog. So I thought I would write a brief history on his experience with I.S.(infantile spasms).

Its sad to say but going to the hospital is such a normal event now that its not scary. The only thing I get scared about when going there is that they will keep us over night for " observation" which is code word for they dont believe what your saying so they want the nurses to see it first hand. Which would be okay with me if they actually observed as opposed to checking in and asking me what I observed, I could do that from home! Anyway......

When we go to EEG's we head straight up to the pediatric ward, unless we are having a concious EEG which means we wont be giving him Chloral Hydrate which is a sedative and hypnotic drug as well as a chemical reagent and precursor. But tomorrow we want him sedated to do our check up, so off to pediatric we go. Oh by the way the reason we want to be at pediatrics for the sedated EEG is that a nurse need to be present incase of complications. Which so far we have never had a complication. Typically I get the nurse to put in an NG tube (nasal gastric tube(tube that goes down his nose to his tummy)) to give the chloral Hydrate because it taste like pure alchohol and Kale won't drink it. A NG tube is perfectly safe. The nurses measure how far the will put the tube in from his nose to the appropiate location in the tummy, then shove the tube down quickly before he screams. The nurses then push air through a syringe attatched to the tube into his tummy listening for it to not go into his lungs. We also pull back fluids from his tube to test the acidity level. If the chemical strip shows the fluid we pulled back is of the right acidity it means its in his tummy, because there should be no acidic fluids in his lungs let alone any fluids. And that his how we check placement of the NG tube for administering Chloral Hydrate.

So long story short, Kale will be getting a follow up EEG just to follow up and ensure this randome movement and staring I see him doing isnt seizures as well as to reassure that the Infantile Spasms havnt come back, and possibly see if some of the "abnormal" brain wave activity we were seeing on previous EEG's has tapered off a bit.

This is an EEG of Hypsarythmia which is a type of wave pattern shown to be infantile spasms

See how its irratic with no rythem.
This is a "normal eeg in a child


This is more patterned rythamic. There is alot more to a EEG which is hard to explain, but this is the raw idea of what we see.

Anyway like I said I will write more and clean this post up a bit on thursday! Thanks for reading!
 

Tomorrow

Tomorrow I hope to put on here some equipment Kale uses and how it works for him with some pictures of it. Today I put Kales Daycare story. On another day I hope to tell you about our experience with Kales infantile spasms, Acid reflux, travelling with a babe like kale, BC Childrens hospital, explore vision issues , discuss books I reccomend, and much more!!

Daycare

I remember thinking to myself that I was going to be spending the rest of my life watching and taking care of Kale. I NEVER thought he could go to school, which is obvious if you think about it, but I didn't, I was so consumed by my grief and loss of the baby I could have had and all the things that baby could do. I assumed Kale couldn't do any of it. Then Kale was about 6 months old corrected 9 months real age and it just hit me, Kale is going to go to school one day, he will just have a care aide, and go to special classes. I was thrilled at this thought, that Kale could be like and be with all the other kids! I still assumed since Kale did not have head, neck, trunk, or any control for that matter and was still on the bottle no Daycare would take him. Most day cares are licensed to have 1 child under 18months, and have up to 8 children per 1 adult. Most children that go to daycare under 18months can at least sit or start sitting, and can hold there bottle a little and maybe a cracker. Those kids can occupy themselves a little so they are pretty low maintenance. Kale's was and still is like a newborn.

One bright sunny day I drove past a sign that said they had openings in there daycare so I thought, why not? lets call. I made a meeting with Jenn and bam! Just like that they were willing to take Kale for the next month until I could get approved for a care aide no problem. Not only was this daycare 1 adult to 4 children, they were willing to bring in an extra person for him!! This daycare also had a couple autistic children, children with FASD, a blind child and a child with a chromosome deficiency! What are the odds I found this one? I then called my local Child Development Center and talked to my Physio Lynn , she got me on the list for a care aide. Luckily 1 month later I have a care aide for Kale Monday, Wednesdays, and Fridays 9am to 2pm!!

My care aide took pictures of Kale doing his physio and made a binder for Kale on the how to's for Kale during daycare. Rene my care aide is a experienced wonderful woman and I trust her completely. I am very lucky.

In the end I conclude when you are ready to accept you CANNOT have that "normal" life and enjoy in the fact that life will be just a little different and in fact some might argue more fulfilling. Kale can do what everyone else can just in a different way with some hoops to jump through with paperwork, but the same result in the end. ASK!ASK!ASK! If you don't get the answer from one person ask another. Keep asking until you know you have tried every avenue of possibilities for your child. Talk to your Social Worker, Physio Therapist, Occupational Therapist, Speech Therapist, Infant Development Worker, Neurologist, Pediatrician, or Family Doctor.

By the way did I mention Kale loves his daycare!?

Kale's First Drawing he did at daycare!!He was 13 months corrected 16 months real age!