Less than 1 pecent is better than O

So the story goes like this...

Background info you should know is that Christian has been on the ketogenic diet (which somewhat controls his seizures) for 3 yrs, has kidney stones as a side effect, could develop kidney probs if on diet too long. ok so keep that info in the back of your mind as you read along. We tried to wean down off the diet and he started having more seizures so obviously it helps and we stopped weaning. Also in Christian's life he has tried 7 seizure meds none of which have ever helped.

6 month neurology check up is what we had today. Appointment goes like this...Basically give updates of number of seizures and types, anything new happening, making any progress in any areas..blah blah blah.
Me: So doctor what is the plan. How long can he stay on this diet? At what point will you say he has to come off of it?
Dr: Well sense he is not completely seizure free I would take him off of the diet if he has large kidney stones requiring surgical removal (ps readers he had this last july and after the procedure developed a high fever, had a one and half hour seizure which landed us in the e.r and hospital for 7 days) or we see any developing kidney damage.
Me: "thinking to myself" uhhh yeah don't need to add kidney damage to the list of diagnosis.
Me: ok and if he goes off the diet then what? Because isn't it likely that none will help due to his past history with meds.??

This is where it takes an awkward/tissue moment/turn for the worst! This is wear you don't want to be a fly on this wall:)

Dr: The likelihood of him responding to medicine for seizure's is less than 1 percent. (this does not shock me because I've always known this) However when said out loud from your doctor it results in this......

At this point the water starts pooling in my eyes..inner dialogue "don't cry, don't cry. this will get awkward then I won't be able to talk or stop crying.  repeat nice words in your head..jesus, rainbows, Bible, kitty cats:))). hmmm not working . ...oh yup here it comes.. the blink..then the water spills over. There's no going back. the doctor obviously knows i'm crying. When the water sat at the brim of my eyeballs as I stared at him while he spewed statistics I figured he didn't know I was about to cry on him. :).  At this point he awkwardly says sorry and hands me a tissue box and I say "it's ok". who's kidding who..it's not ok. Oh but wait there's good news (said sarcastically)...

Dr: But it's not like he has a 0 percent chance of meds helping. Kinda like winning the lottery. It's not a zero percent chance but slim.

WOW. It may have been the stream of momma tears that led him to find something positive to say. And that's ok with me. Bless him...he was trying. My doctor is super kind and one of those great neurologist that listens and shoots ya straight.

The bit of crying stopped as quickly as it started and I suppressed it for the rest of the visit. However the fun didn't end there. It is typical that he checks Christian's reflexes during the visit. I've never really asked what he's looking for so this time I did...in a somewhat joking manner I say "what does it mean if there foot doesn't move"? (he runs the metal thing up the bottom of his foot and Christian's foot moves). He says it's more on what their toes do.
Me: oh  so when there toes move up?(because that's what Christian's did and I thought that was a good thing).
Dr: actually they should curl down..
Insert couple seconds of silence
Inner dialogue: really why did I even ask.
Me: hmm well guess that's not a good thing then..probably shouldn't have bothered asking..
He chuckled and said well it's typical of kids with CP.

O boy. This post is not meant to make anyone feel sorry for us. It's one of those moments I thought I'd share and if nothing else maybe you will find a little humor in it and keep it in your back pocket for you next doctors cry session.

last day here in kc for hyperbaric oxygen therapy

So our time is over here in Kansas City. Christian had 32 dives total. The typical protocol is 40 which we have been able to do in the past but this time I have 2 other little ones at home and 3 weeks away is enough. I am very glad that we were able to get Christian here for this special therapy. You kind of never know in what way it might help your child. The brain is a funny thing...or I should say complicated:)  Every child reacts differently and see different results. When Christian was 2-3 yrs old and we came we saw a big decrease in seizures and even one type that stopped completely. We were hopeful we would see that again. Yesterday he only had 1 seizure (typical day is 7 short ones) and today he only had 4. Maybe we will continue to see a decrease. The effect of hyperbaric oxygen therapy continues up to 3 months after you stop. So we could still see some changes.
Of course, I posted earlier that we had seen a huge benefit in his walking and decreased tone in his left arm.

THANK YOU
Thank you to all who participated in Dodging to make a Difference tournament. You made it possible for us to give Christian the best therapies and every chance to help him live a better life! We are so grateful.
To my mom who has been the caregiver for Bryant and Sydney. Thank you sooooo much! I can never repay you.
To my husband who supports the decision to bring Christian to therapy out of town even when it splits us up for a time. (they did all come up several days) I love you babe.
To Hyperbaric Healing Institute in Kansas City...thank you for making this available and helping out whenever possible!  www.hhi-kc.com


Can't wait to get home!

It really is the little things...oh wait those are actually big things

My day was made yesterday by 2 of the most ordinary things.
I went shopping with Christian and bought him "cool", casual shoes at Children's Place and stylish sunglasses. No big deal huh? Wrong..big deal , very big deal. First of all most shoes don't fit over his braces that he wears on his feet. Therefore we have one pair of tennis shoes we wear with everything. I have been wanting some more dressy stylish shoes for his nicer clothes/church/school. Today I hit the jackpot. I was sooooo excited when they fit over his braces...it really made me giddy. Then score number 2 were the sunglasses. He looked like a 6 yr old having fun, wearing his sunglasses on a bright day. The best part was that he didn't try to take them off. I actually wanted to just stroll around some more outside just to get to watch him with his sunglasses on. He actually wore them. It was one of those days where all the stars aligned:)

As much as major things like-taking more steps and learning a new sign-are monumental and obviously exciting....the small things that make me feel like a mom of a typical 6 yr old boy are even grander on certain days. Most of the moms I am friends with experience this same thing. We long for our kids to meet therapy goals that lead them to more independence but we also long for and celebrate the "normalcy" of cool shoes that fit, swimming independently with other kids in the pool,  clapping at a performance (when it's actually appropriate time to clap:) dancing in the car to Carly Rae jepsen, watching cartoons on TV, rolling a ball to and laughing with your twin brother,riding rides at SDC....(these are all from real mom's lives).

it's the small things...that are really big things

day 17..improvements..trying to get the video up

This is our last weekend up here. We are here a total of 3 weeks...that's 33 dives. I wish we could do 40-50 but that's more money and more time away. The rest of the family came up for 4 days. It was so good to all be together. Although sleeping 5 in a hotel room is a little tricky when the 1 yr old still wakes up crying at least once a night. We made it though. We also snuck in a little fun time too!

I am posting a video of Christian walking. I will explain the differences in what I've seen since we have been here. Of course these are most obvious to me because I'm the only one who helps him with his walking. I will explain the best that I can.

Before coming:
1. His legs would scissor (meaning cross over each other) with every other step. So I would need to move it back over in correct alignment so he could take his next step.

2. When he would take a step I would usually need to help him complete the step...meaning get the foot he just stepped with all the way thru. Sometimes he would take a "complete" step on his own but usually it was 2 out of 10 steps.

3. I hold his right hand so that he doesn't continue to focus on grabbing his shirt or putting his hand in his mouth. This leads to not focusing on walking. He tends to fight me a lot on holding his right hand.

 

Now :

1. He can take5-6 steps without crossing over. When he does crossover it's not as far over. This is awesome because I don't have to move his leg every step. You will see him crossover a couple of times in video.

 

2. He is initiating and following thru on about 80 percent of steps. I rarely have to help it on thru. Usually just the right leg. You will see me do this a couple of times in the video. I use my foot to help his on thru.

 

3. He doesn't fight me as much with holding his right hand. You will notice that sometimes I can just support his chest and not hold hands. I typically swich around my support while we are walking. He bears all of the weight on his own. I'm not holding him up. It's hard for others to tell in the video. Also it looks like he's leaning forward but he's not.

 

He is also walking further..we walk in and out of the chamber..to the outside door. It is about 50 ft. Oh and I had mentioned in an earlier post that his left arm is not as stiff or drawn up. This is usually worse when he walks because he's working so hard. It has gotten better! You can see in the video that it bent but not drawn up to his chest.

 

 

 

 

day 9 hbot and common misconceptions

I'm continuing to see so much improvement with Christian's walking. I will try to get video up in a couple of days. Right now I am just walking with him...holding his hands or trunk. He is supporting his weight, taking steps on his own and with my assistance. Right now our situation with our walker is not a happy one. By that I mean that the one he has been using is just not working at all. He "hangs" on it too much with his arms. He actually does better without his walker. However we are in the process of waiting for our new walker. It's much different than the one we have had for the past 4 years.

Most frequently asked questions...answered..
-the chamber does not move.
-we do not get wet
-I am not breathing 100 percent oxygen. Only the people wearing the hoods.

Other interesting facts:
You cannot wear any jewelry in  chamber or lotions, make up, hair products.
You have to wear 100 percent cotton clothing.
Nothing in pockets..car keys, money, so on.


 This is more explanation of what hyperbarics is and what is used for.

---

Hyperbaric Oxygen Therapy (HBOT) places patients in an oxygen-rich, pressurized chamber. Breathing pure oxygen under pressure dramatically increases the oxygen in the blood plasma, as well as in the brain, spine, and joint fluid.Generally, the red blood cells already have 95 percent or higher oxygen saturation. There usually is little increase in the oxygen that red blood cells can carry under normal conditions. The pressure chamber forces an oxygen-rich situation, in much the same way carbon dioxide is forced into a bottle of soda.Increasing the oxygen-carrying capacity of the blood has been clearly demonstrated in Europe, Russia and China to improve healing for a wide range of acute and chronic illnesses.In the U.S., there are 13 FDA-approved uses for HBOT: Air Embolism Carbon Monoxide Poisoning Complications of Radiation Therapy Crush Injuries Decompression Sickness Enhancement of healing in selected problem wounds Exceptional Blood Loss Anemia Gas Gangrene Intra-Cranial Abscess Necrotizing (popularly known as "flesh-eating") Infections Osteomyelitis (bacterial infection of bone or bone marrow) Skin Grafts and Flaps Thermal Burns Hyperbaric oxygen treatments have successfully been used throughout the world for many other conditions, which in the U.S. are referred to as “off-label” uses.Here is a partial list of HBOT uses: Atherosclerosis Autism Brain swelling and injury Brown recluse spider bites Cerebral palsy Cosmetic surgery, to improve healing Edema Hearing loss Inflammation Lung diseases, including inflammation, fibrosis and influenza Lyme Disease Macular degeneration and other vision problems Multiple Chemical Sensitivity Multiple Sclerosis Near drowning Neuropathy Periodontal disease Serious heart disease, and pain and dysfunction related to heart attack Sinusitis Sports injury Stasis ulcers (bedsores) Stroke Trauma Ulcers Vascular disorders, including congestion It is thought that HBOT use would be called for with any condition where the body's ability to function and heal would be improved by extra oxygen. Russia and China are the world's leaders in manufacturing hyperbaric chambers and utilization of HBOT therapy. This may be, in part, due to their socialized medical systems. In some countries, the government pays for HBOT treatments for autism, cerebral palsy, and brain injuries including traumatic brain injury. Great Britain’s partially socialized healthcare system treats multiple sclerosis with HBOT therapy. In the U.S., no hospital will treat a multiple sclerosis patient in their hyperbaric chamber, no matter how ill the person is. While it will not cure MS, it will safely and consistently help manage symptoms.With other diseases, such as non-healing wounds and even necrotizing fasciitis, HBOT can actually cure. U.S. physicians are unlikely to know more than two of the approved uses of HBOT, even though it may be the best treatment option for many other conditions.

Day 7 of hbot and the things you wouldn't know

We made our 12th dive today.  So far I've noticed that Christian's walking has improved. He is not "scissoring" his legs as much and follow thru on his steps and walking farther. Walking is such a big goal for him and us (the people who carry him to and from:). He will only get taller and heavier. Carrying him will only get harder for me and that is why we work so hard on walking.

This is the part of the blog where I let you in to the world of parent a child with mental and physical disabilities. Of course you see Christian and know that he doesn't talk or walk on his own and that's an obvious issue we deal with. But there are other "minor" things that come along with a child with brain damage that you wouldn't think about. For instance...on our drive to k.c I look back and Christian's ear is bleeding...there is blood on the side of his face now and smeared on his car seat...whaaaaaaaaat! So I watch him and he is banging/rubbing his head on his car seat..repeatedly. Well really what can I do about it. I can't stop and hold his head or make him stop hitting it on his car seat. I stop and give him something to chew on hoping this will fill the need to bang his head on the seat. This doesn't help he keeps doing it. The scrape clots a couple of times but he reopens it from more banging. At this point I pull over in hopes that if I get him out to stand he may stop this behavior. I had the feeling he was getting frustrated from the long ride. Well we get out and I  have left one of his shoes at home...hmmm. We go ahead and attempt standing. This does help the situation for the rest of the ride.

So I'm left with needing to go to walmart to get shoes because we only have 1 and cleaning blood off of the car seat and his face. For whatever reason he was frustrated or wanted to move and chose that behavior. While non of this is life threatening it just adds to the mountain of small things that come with our child's diagnosis...things no one even realizes. And again you try to shrug it off and chalk it up to life:)

Day 3-4 ..explanation of cerebral palsy and hyperbaric oxygen therapy

So what is hyperbaric oxygen therapy you ask? I will copy and pasted an explanation for Christian's diagnosis of cerebral palsy (since birth) and the role of hyperbarics.

Typical day:
8 am -first dive...you "dive" to 1.6 ata. This takes 15 mins. You have to pop your ears as you do this. (like when you fly in an airplane) If you have tubes you don't have to pop your ears. Most people drink or chew gum. When the "chamber" is at 1.6 ata then I put the hood on Christian. The tube connects to the hood and he is breathing 100 percent oxygen. We do this for 1 hour. I take his hood off when the hour is over. When that is over the we go back up to normal atmospheric pressure. This takes about 10 mins. You don't need to pop ears because they kind of do the reverse on their own. The we get out of chamber.The chamber does not actually move or anything.

From 9:45-12:45 we go back to hotel and work on walking,standing, sitting. He does his stander for an hour. We eat lunch and take a walk around the parking lot..to get fresh air.

At 1 we go back for our second dive.

Come back for a short nap then swim, eat supper, work on more standing and walking. If time he goes in his stander again. Last night I decided to take c for a walk for fresh air. Well I thought hey lets go while you are in your stander:)..... what a site we were. it's not something people are used to seeing. On top of that the stander is kinda awkward to push....it wants to spin. So of course we would spin as we go. O well I'm used to people staring...may as well do what makes us happy. Although I did run over my pinky toe!

By 8:30 we take baths and bedtime. He is usually pretty tired.

So that's what we do for 3 weeks. On Saturdays we only have a morning dive..no dive on Sunday.

• What is HBOT
• Conditions
• Testimonials
• Resources
• Multimedia
• Contact Info

THE ROLE OF HBOT IN CEREBRAL PALSY

Cerebral Palsy (CP) is a descriptive neurological and physical problem originating from defects in motor cortices. Collectively these are labeled as cerebral palsy.
Cerebral Palsy is non-progressive, non-contagious, permanent neurological abnormality. The location and size of the lesion will determine what deficit the child will have. The abnormalities occur in utero, during or after birth up until age five. The affected individual is influenced by genetic and environmental factors as well. Cerebral Palsy is associated with a perinatal hypoxic event (tight nuchal or prolapsed cord), placental abnormalities , prolonged labor, or infection transmitted during delivery.
There is no known cure for cerebral palsy, and there is no standard therapy. Early treatment gives a child a better chance to overcome disabilities.

Two alternative therapies considered by some to be controversial include neuromuscular electrical stimulation and hyperbaric oxygen therapy (HBOT). HBOT might be beneficial in treating Cerebral Palsy cases that are due to traumatic brain injury caused by decreased oxygen.

The theoretical basis for HBOT in CP is that there are areas in the brain next to the CP lesions that are hypoxic due to marginal tissue perfusion. HBOT can increase the available oxygen to these marginal tissues and reactivate the cells to become functional. The number of cells that can be “salvaged” by HBOT cannot be determined. HBOT might cause improvement in motor skills, attention span, visual and verbal commands.
For this treatment, HBOT is used at “low pressure” (1.5 to 1.7 atmospheres absolute), as this has been demonstrated to be optimal pressure that an injured brain can tolerate without toxicity.