Saturday, July 7, 2007

Three days in hospital four wisdome teeth out.....

Originally uploaded by jippyjabber
Zachary had three days in the hospital.
He had four wisdom teeth pulled and one incisor tooth.
The incisor was not coming down and was trying to pop out on the side of his gums.

I am very curious to find out how much LESS pain medication he will need after having this situation dealt with.

Zachary, had no trouble with his kidneys, or liver....any major organ during or after the surgery.

He was on IV with D10 for the first two days. A nurse told me it's kind of the amount of eating Mcdonalds. That's a lot of energy to his cells. It worked magic.

It could be a new world with out teething worries.

Originally uploaded by jippyjabber

Mom has me in my favorite blue shirt again. It's cozy enough to sleep in.

Monday, June 18, 2007

Getting a new brace for foot drop

Originally uploaded by jippyjabber

He can walk so much better and for longer periods at a time with a brace on his foot.
I found out I can have some extenions made on the straps of his shoes.
Just a visit to a quality shoe repair will save me the cots of buying two different sizes of shoes. This gets hot in the summer so finding high quality sandals was a priority.
I got some Hush puppies sandals in a wide shoe store. On sale for about $80.00. How much have I spent /wasted on trial and error, looking for something that will work out that he is willing to wear?
Lets say I could probably pay rent with the last years shoe budget.
Ps that's the beautiful and helpful nanny in the back .... she just wrote a paper on Zach.... I hope she lets me post it. : )

Originally uploaded by jippyjabber

He's grown so much this is our second brace.
I didn't know Complex Regional Pain Syndrome could last this long.
It's been a year and a half.

Thursday, June 7, 2007

I ripped this from Pub Med My story on Cyclic Vomiting Syndrome will be attached to the end.

Maternal inheritance in cyclic vomiting syndrome.

Boles RG, Adams K, Li BU.

Pub Med

Division of Medical Genetics and the Saban Research Institute, Childrens Hospital Los Angeles, Los Angeles, California, USA.

Cyclic vomiting syndrome (CVS), characterized by severe discrete episodes of nausea, vomiting, and lethargy, is a fairly common, disabling, predominately-childhood condition most often associated with migraine and dysautonomic features. Our group recently reported that children with CVS and additional neuromuscular disease manifestations demonstrate strong maternal inheritance of multiple disease manifestations and abnormal urine organic acids, suggesting the presence of predisposing mitochondrial DNA (mtDNA) sequence variants. In order to determine if maternal inheritance is present in CVS in general, a clinical interview was administered regarding 80 unrelated individuals with CVS ascertained randomly from the database of the Cyclic Vomiting Syndrome Association (CVSA). Disease manifestations consistent with potential mitochondrial dysfunction were far more common in matrilineal (sharing the same mtDNA sequence) versus in non-matrilineal relatives, including mothers versus fathers (P = 3 x 10(-9)) and maternal versus paternal grandmothers (P = 2 x 10(-6)). Maternal inheritance is suggested in 52% of the 23 subjects with two or more neuromuscular abnormalities ("CVS+") and in 54% of the 44 subjects without any neuromuscular abnormalities ("CVS-"). In both the CVS+ and CVS- sub-groups, subjects, and affected matrilineal relatives of all ages suffer at a far higher incidence from several dysautonomic-related conditions, including migraine and irritable bowel, as well as depression and hypothyroidism, while neuromuscular and cognitive disorders such as hypotonia and ADHD are common only in affected children. We conclude that mtDNA sequences predispose towards the development of protean disease manifestations in CVS patients ascertained through a disease-specific association, as well as among their matrilineal relatives, whether or not neuromuscular disease is present in the proband. Since CVS was absent in all but one matrilineal relative of our probands, CVS is apparently a rare clinical presentation in individuals carrying the predisposing mtDNA sequences. The four conditions reported most frequently among the matrilineal relatives of our cases, migraine, depression, irritable bowel, and hypothyroidism, are known to segregate together in families, and our findings suggest that a common predisposing genetic factor is likely present on the mtDNA. (c) 2005 Wiley-Liss, Inc.

Every summer I carry a very long bucket with us everywhere we go. The bucket has to be long enough to handle the g force of Zach's projectile vomiting. He threw up so much in one of my cars that we had to get rid of it. It was disgusting! So long to the Saturn! Now I have learned. You must have tinted windows. You much have a powerful airconditioner. You must have pro sport quality sunglasses. Cold water near by. Limit the glare. Glare will set it off. One you vomit or get a headache you will have more trouble getting stable again than the trouble it takes to prevent the start of vomiting. Sometimes it 's a smell or a picture os something and you can't always control everything. I do everything EVERYTHING I can to prevent the vomiting. Taking the Co Q 10 and L Carnitor can help you ward off the vomiting. Zachary likes a cool cloth on his neck. When I fail to prevent vomiting, I sometimes use Zofran disolvable to help stop the cycle.

Zachary has become more aware of his cyclic vomiting syndrome. He knows when he might be sick he might get the bucket or try to tell me he's sick. Instead of just letting it fly like a baby would. It's always worth the extrea effort to prevent stressing the body and setting off a migraine or a cycle of vomiting.

Thursday, May 17, 2007

Foot X Rays

Zach's foot bone
Originally uploaded by jippyjabber.

These are Zachary's X Rays.
I was across the hall but could not resist snagging a photo and hoping you can tell it's a foot! We are off to the hospital today and we should have some blood test results in. Answers or more questions but at least things are bieng done and we are going forward.

The doc can blow up the zxray and really take a close look at the bones. Zach's bones have osteopeana. Low bone desity. He needs to work out and I think he will be put on some supplements for it. I am not sure how much radiation I was exposed to that week. He also had mouth X rays taken as well as multiple X rays of his foot.


Sunday, May 6, 2007

Love on 4 Paws Zach and Mattie

Zach and Mattie
Originally uploaded by jippyjabber.
Another day at the hospital.......

What makes it tolerable? A dog of course!

Mattie's story

Love on 4 paws is a terrific organization. The kids really do feel better after petting the dogs.

I often think that one day Zach will have a dog and we will be able to visit seniors or kids stuck in the hospital. I will never forget the first dog Zach met at a Hospital. It happened to be at Huntington Hosp. I had called 911 because he was turning blue. He had not slept for days. They admitted us and a dog camee to visit. I threw a blanket on the floor. The dog and Zach laid down and for the first time in days and days, Zachary fell asleep. So did the dog!

We've met Mattie before. We have a picture of zach and Mattie on the cell phone. So Zach was comfortable with her and took her leash and walked her around the waiting room and told her she was a good girl.

Mattie is a featured story on go check it out.
if you have a sweet dog and are interested in volunteering, you will find information on that on the site.

Sunday, April 22, 2007

Zachary to Mad World by Michael Andrew & Gary Jules

Zachary set to Mad World. Zach has a tooth that has to be pulled because there is not enough room for it to come in. It' s triggering his pain disorder. He's very brave. The video lost quality when it was compressed. Technically, it's a mess but I still like it....... Isn't that so typical Jippy?

Saturday, April 14, 2007

What is a mitochondrial disorder?

Basis of the Disease

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

Thursday, April 12, 2007

A trip to the emergency department





D 10 ( That is just sugar) AND A NAP



Wednesday, April 4, 2007

April is Autism Awareness Month

Originally uploaded by jippyjabber.
April is Autism Awareness Month

Friday, March 2, 2007

Zachary moved his toes!

I saw his toes move!
Originally uploaded by jippyjabber.
Happy Feet. I saw his toes move. As you look at this photo it's the foot on the left. Actually his right foot. He can't move his toes do to the complex regional pain syndrome and the foot drop. I was rubbing lotion on his leg the other day and I thought I saw his big toe move. Last night I was rubbing his foot and his toes moved! He can't do it himself yet but the nerves are healing! This happened about a year ago and he's able to walk around the house on his own. He's limping and it hurts but it's great to see him recovering some use of his leg. We still need the wheel chair. Is this a sign that it might be out of life completely one day?

Tuesday, February 20, 2007

Response to Primetime Outsiders Kids getting shocked

Originally uploaded by jippyjabber.

In response to Primetime The Outsiders, "aversive stimulation" skin shock therapy on autistic and other special needs kids. Please tell people about Zachary' s success story. I want people to know that kids that hurt themselves might be in pain. My son gets helped from the MAGIK clinic. He stops hurting himself. He isn't a zombie everyday.
It's a miracle in my life. He still has autism and other problems. It still happens. But we can manage it. I am sure that shocking him would not help him get over this in any way. I am sorry for those kids and the families that need help. I worry that people saw the Primetime and think it' s horrible but their only hope. Please tell them to check out 20 seconds of pain. Tell them it's nothing compared to how far it went. To being bloody and breaking doors and windshields. Tell them we are better.

Tuesday, February 13, 2007

Zachary doing a three day EEG study at Children's Hospital Los Angeles

Originally uploaded by jippyjabber.
This is Zachary doing a three day EEG study at Chlidren's Hospital Los Angeles. He has partial frontal lobe seizures and maybe bigger seizures at night. They are hard to catch. The neuorolgy department set us up for this study. Thankfully, Dr. Joseph from the MAGIK clinic came to check on Zachary. He had figured out how much of Zach's meds to scale back on so this test would have a chance. I wish I could raise enough money to do some of these studies in a more home like setting and in combination of other tests. What a mother wouldn't ask for....

Zachary in the hospital with laptop for distraction

Zachary in the hospital
Originally uploaded by jippyjabber.

He is so cute. I try to make him do something educational. He often watches movies and playes games on his laptop to distrac him from pain, panic, and boredom. This picture is actually from a dental procedure he had done. I never know how Zachary's body will respond.

It was after a dental procedure that Zachary had his first rabdomyalosis. Basically, his muscle protien is released into the blood stream and it damages the kidneys on the way out. It was also hard on his liver. The second time it happened, it was triggered by the flu. Both times he spent two weeks in the hospital. Because he has had it twice, we were referred to the genetics clinic, to look into the mitochondrial disorder.

The good thing about belonging to a regular clinic like the MAGIK clinic is that I knew Dr. Joseph would stop by to check on Zachary. He would interpret the medical information for me. He also knew Zachary so well he could rule out things that were being considered and validate things other doctors weren't at first willing to accept just at my word. Now, everyone is gettting to know that Zachary is one medical rubiks cube. Especially when it comes to pain.

Monday, February 12, 2007

Why Zachary Wins Again!

Michael H. Joseph, M.D.
Department: Department of Anesthesiology Critical Care Medicine,Division of Anesthesiology
Anesthesiology; Pain Management

Jeffrey I. Gold, Ph.D.
Department: Department of Anesthesiology Critical Care Medicine
Clinical Psychology; Pain Management

I will put more medical information up soon. Although, Zachary has many issues that are not well understood. Starting with Autism but that was the easy one for us. My brother was autistic. Zachary developed out of order as an infant. He screamed from day one. He walked/sort of ran from one place until he crashed into another at seven months. We started seeing doctors early on. Zachary was in an infant program through the march of dimes. I have been with him every step of the way. I had a hard time finding doctors that would treat Zachary for pain. Even though they would tell me that he was in pain. I was so relieved to find the MAGIK clinic at Children's Hospital Los Angeles. I was completely ruined by the time I got there. I resorted to showing them a video of one of Zachary's pain episodes. If you watch my You Tube video 20 seconds of pain, magnify it, add blood and open wounds to his head and hands. You'll have some idea of what I showed them. The only thing I could do was wrap us up in sheets and hang out in my homemade padded cell. You can find a picture of that here too. If that is not enough to show how terrifying this was to live with. Email me and I'll tell you the story about Zachary busting the windshield of my car twice. None of that mattered because he was suffering so much. I was so scared. To call Dr. Joseph and Dr. Gold heros is an understatment. They gave us a life. This is just the story of how we got to them. Next I'll post about what they do for him. I don't know how to thank them. Perhaps this will at least show them that I have the desire too. I hope to post more about the MAGIK clinic and what they do for other children. So this is why Zachary Wins Again!

Friday, February 9, 2007

Animal Assisted Therapy
Originally uploaded by jippyjabber.
It's a photo of a poloroid picture. They give it to you when you get a vist from a therapy dog. Imagine being in the hospital or a clinic and you get a visit from 'Valencia" or another sweet dog. This is the exact type of dog that Zachary loves. Imagine how happy he was even though he was at the hospital. The MAGIK clinic gets creative! MAGIK

Thursday, February 8, 2007

Finally Out of the Closet

Originally uploaded by jippyjabber.
This is the closet that I lived in with Zachary wraped in sheets with pillows nailed to the wall. My own padded cell. We used it before Zach was treated for a pain disorder. He had a large egg like contusion on his head that he would reopen when he would hit his head against the wall. We used to call him a unicorn. Later we used this closet for puppets. I supose it's time for a new door. You can see it's filled with toys and games now. You can barely see a prayer taped to the door. Probably why I still have that door.