In this issue of the Guardian Newsletter...
From the President
OH my Gosh what a season!
The kids are screaming my house is a mess why such distress oh my gosh must be the time of year yep that it's Christmas time again. Time to break out the Christmas lights, tree and oh my gosh the traffic, the stores are crowed with shoppers looking for that special something their 3 year old just cant live without, or that their 14 year olds live is dependent on, you rush here and there not having time to care I feel like a rat in a trap you think as you rush from here to there. 'Tis the season for what to be exhausted and stressed out.
This is a special time of year for every one its a time of reflection and contemplation a time to take a look at ones self and realize just how much we have to be thankful for. Unfortunately this time of year is also full of stress and sadness. It is a time for some parents and families to remember ones that are lost to them. There is a place under the tree where presents should be but are not because the child is no longer here or due to finances. Some parents can't afford to place much under anything. These families are under tremendous stress this time of year and need all the support and love we can muster for them. Some parents may not be able to be home with the other children in the family because one of their angels is ill. This too can contribute to stress and depression. Please take time out this holiday rush to make a call to someone you know is sick or has an ill child or who has lost a child. Take a parent shopping or offer to sit with a sick child so a parent can get some off time and catch their breath. Most hospitals are in desperate need this time of year for volunteers to help parents deal with the stress of having a hospitalized child. See if you can fit a few hours this time of year to go to your local hospital. Visit the local pediatrics wing and ask if you could help by reading to a child, or taking a stuffed animal, or just a strong shoulder or sometimes a listening ear. Also, take time out for yourselves as well. This time of year can exhaust even the most enthusiastic person. Take time out and have a nice lunch with a friend or loved one. Don't forget to line up a special day for your partners so they don't feel lost this hectic season as well.
Take time in rushing here and there to sit and read a story to your child before bed, or take a few extra minutes to listen to your teenager, or just an extra 5 minutes in that bath for yourself before rushing to the next sale. This can be a magical time of year for our wee ones, full of wonderment and excitement as they learn the joys of giving and receiving gifts. My favorite thing to do is see my child's eyes light up as he searches for this or that in the mall. That light is just in the right place, to fill his face with wonderment and excitement. Oh the joys of this season and what they can be never seem to delight one more than seen in the eyes of a three year old. From the Christmas play at the local church to taking the kids on a trip to look at Christmas lights. Yes, this is a magical time of year. Just make sure that it's special. Remember the reason for the season as well.
My 'Twas the night before Christmas
'Twas the night before Christmas and all through the house not a creature was stirring not even a mouse, not in my house I exclaim as I rush to yet another store to find the darn turkey I forgot to buy. Reindeer on my house, I wish they could run me out to get the darn turkey. It's Christmas Eve I exclaim as the battery in the car dies. Who's to blame for the hectic reason for this season as I lay my head down and cry?
See ya' next year!
Kimberly Robinstein, President of the Guardian Society wishing you all a happy holiday and joyous New Year.
Secret Angels
We have come up with an exciting idea for Christmas, a Secret Guardian Angel.
Simply put we assign a secret guardian angel for children and families in guardian society to help spread the joy of the season with.
What do we need? Children and Families that want to participate. You can be either a guardian angel or a family that needs some Christmas cheer this season or both be adopted or adopt.
You can chose one child or a family and then send that child or family Christmas cards or little goodies and presents, as little or as much as you feel you want to do for your special family or child.
If you want your family or child to participate just send me an email with the child's name or family name with home address and such so we can help make this holiday special. Sorry, all names and such of our guardian angels are secret so no peeking. Hehe - you can pull my toenails out or torture me to death and I won't tell whose guardian angels are assigned to whom. So don't even try.
I hope to see loads participating in this campaign. Let's make this a special one for our children and families. You get a good feeling this time of year when you allow yourselves to have fun and have a wonderful holiday.
Kimberly Robinstein, President
Prayer List
Prayer List
Tyler Seifert
Alexandra Thompson
Gerry McGregor
Angela Bennett
Kimberly Sizemore
Sami Whitney
Sean Forney
Terran Robinstein
Noah Kohn
Kayla Rosado
Prayers for Strength
Glen Family
Shearon Family
Cooper Family
Woolard Family
Pleasures & Treasures
Too many times in life we sleep.
We forget the things that we should keep.
Our thoughts stray from those we love.
Which God has given from above.
For me this is true.
It is one of the things I do.
Not on purpose with my mind.
To be that way would be unkind.
There is nothing in life secure.
All things in it lose their allure.
What is important is our fate.
I've learned that things are not so great.
Time has a way of teaching this.
We know the meaning of the bliss.
To create our bonds to last forever.
These will go on no matter the weather.
Our experiences differ one to the next.
Some live with laughter & some are vexed.
Life came with no rules for our pleasures.
My family and friends are my treasures.
My poem to you my family & friends. Thanks to you all for the help. Once we're gone the only thing left are memories. Hopefully we leave some good ones.
Thanks Again,
Mel
Special Feature
Child of the Month Zachary Start
Dear Guardian Society,
Thank you for you recent newsletter. It was very helpful. I was wondering if you would like to share our story. Maybe it could help someone else. Our second child Zachary was born Jan.28, 1992. He was two weeks early but over 9 pounds! He looked very healthy but would not nurse at all. He seemed to spit up allot but it was brown. The nurses at the hospital thought it was junk in his lungs so they "pounded" him with a rubber mallet thing to loosen it up. The next day we were sent home with instructions that since he did not pass his meconium to watch him and call our doctor if he had not by noon the next day. That first night home I barely slept. I knew something was wrong with my baby. He cried a cry that seemed to me to be pain and discomfort. The next day I called the doctors exactly at noon, as told because he still did not poop. They took the message and said I hey would call back (yeah right!) At 2 PM my Mom came over and changed Zach's diaper. She called my upstairs to look at his tummy. It was terrible round and hard, bloated. Called the doe again. This time they said come right in with him. Our family doe was wonderful. He broke the news to me that most likely Zach had a disease called Hirschsprung's Disease. He needs to go to the "city" hospital and their NICU right away. That ride to the hospital was terribly long, I feared my baby might die before we could get him to the hospital. But by God's grace, he survived. Zach had a colostomy surgery when he was about 5 days old. Then he spent about 2 weeks in Neo and then came home. Then when he was 9 months he had the pull through. We were told that Zach was now "normal". Go home and live your life. So we tried. But when Zach has 14 months he got the "flu". It was weird because he seemed to feel fairly well but could not keep any food down I called the docs because I was worried about dehydration. They sent me to the local hospital where they checked him over and sent me back home with suppositories to help with the vomiting. If they did not help him by noon that day, I was to call my regular doctor and I was promised he would be seen that day. Well, of course the suppositories didn't work and he was getting sicker and sicker and I was getting more and more worried. So I called the doctor's office and was completely "blown off'. The doctor never returned my call until after doctor's hours and said to keep up what we were doing as sometimes the bowel just needs a 'test". Of course, this is Friday, and my husband and I are frantically wondering if how we are going to make it through the whole weekend. Saturday morning Zach was very lethargic and throwing up green bile. 1 thought it could not hurt to call the doctor again. Praise the Lord, for some reason the doctor happened to be working this Saturday and when they heard about the green bile, they said to bring him in From the doctor's office I was sent to the 'city" hospital again. I was told not even to return home for my purse (which would have only added 10 minutes to my arrival time). I knew that Zach's condition was very grave. When we got to the big hospital hey did an x-ray and immediately found an obstructed bowel, Surgery. Just a small pit piece of scar tissue. No bowel removed. 5 days in the hospital. Home. Things go along rather normally until Nov. 1 93, and then we start the whole thing over again. No Lord, not again. This can not happen. They said the first time was a fluke. They said my child was going to be "normal I have a "normal" child- and this is not "normal." This time I take him straight to the surgeons office who does not like the way he looks so he sends me across the street to the "city" hospital that is beginning to feel a little too much like home. Lots of test. Spinal tap. The flu? Give me a break. I know it's his bowel. No they say, we x- rayed it and I S ok. They almost send us home but thank God again, decide to keep Zach for observation. My husband goes home to sleep. Midnight they take Zach for blood work and I do not see him again until morning. The nurses are asking me if I am o.k. They say maybe I should call my husband. The doctor comes in and says something about Zach being diabetic as his sugar is like 1200. Diabetic? How can this be; my son has bowel I problems, but sugar trouble. My husband arrives at I am. We spend the night in prayer for our son who we know is dying. Finally, morning arrives we are allowed to Zach, He is in a room full of machine and they are all hooked to him. His little tummy is all distended. The doctors said it was a race all night to keep him alive. His body was shutting down. Ultrasound revealed that he was bleeding internally. Gave permission for surgery to find out what was happening in there. Surgery is over, the docs come out. I’m nearly in tears as he tells us the news. Zach's small intestine had become strangled due again to scar tissue. The dead and rotting mass of intestines what was causing him to become so ill. The surgeon had to remove 2/3 of his small intestine. He talked about him being on something called TPN. We had no idea what this was and we did not care we were just so thankful that God had spared Zach's life. Two weeks in the hospital... most of it in intensive care. He was one very sick little boy. But for some reason God saw fit to allow Zach to tolerate food. They sent us home with a little boy with no tubes or bags I wish I could say that things have gone smoothly ever since. Unfortunately, that would not be true. We struggled so much with toilet training. And why I kept asking does he have pain in his bottom all the time. The doctors had no answers so they began to suggest that Zach had psychological problems. Mom and Dad just became more and more frustrated, as what they said did not match what we were experiencing with Zach. We tried enemas, milk of magnesia, propulsid. All these seemed to help temporarily but nothing "stuck". Then he got very sick again. Diarrhea around the clock. Pain, pain and more pain. Upper GI, lower GI, tests, infection. Antibiotics. Gets better. Then the ear infections with the only symptom being diarrhea and pain in the bottom. Get ear tubes. He gets better until February of 1997. Then everything fell apart again. It seemingly started with a cold. He just did not get better His Diarrhea increased until it was constant, day and night. I take hint to his gastro. and she takes stool samples and sends me home. What about the pain? I cry. Try Tylenol and Morton. PLEASE! Like I haven't been practically overdosing the kid on the stuff already. So we go home and suffer and wait. Another upper GI and scope of the colon. This time he has an inflammation of the rectum and anus. His bottom is blood even time he wipes. He lost 1 pound in two weeks and a total of about 4 pounds by the time this ordeal is over. He looks gaunt and tired. We cry and cry and cry. We in the meanwhile have been seeing a psychologist for Zach's emotional "problems" but guess what he says that Zach is emotionally very healthy. He advises us to get to the bottom of his medical problems. From that day on, I am no longer taking anything that any doctor says to me as the truth. I decide hat I am the expert on my child and will go to any lengths to get the help he needs. Finally, we end up in Long Beach, California for motility testing. Seems Zach has hyper motility. That is, he has too many high amplitude contractions going directly to the anus (thus the pain in the bottom.). This is why he has such trouble getting to the bathroom. This is why the chronic Diarrhea. And all this time we had been giving him medicines to increase his motility making him worse!!!!
Anyway, there is much more I could write, but this is way too long already. I guess the only advice I could give is work with your doctors, but never assume that they know better than you do. You are the parent. You are with you child all the time. Keep pushing until you get the answers that make sense to you. Never stop looking for better solutions for these precious little ones. Also never underestimate these kids or hold them back because of their disease. Despite everything he as been through Zach is a very bright child. He is doing very well in school, has lots of friends, and is very athletic. He loves to play chess (and he is only 5), basketball and football: as well as tease his little brother to death! I too am a Christian and so I believe that God never gives us more than we can handle. God put these special children in special families where He knew that they would be loved and cherished and prayed over and encouraged to overcome their trials and come through them stronger little people.
God Bless,
Kids Speak
Explaining God
Written by Danny Dutton, age 8, from Chula Vista, California, for his third grade homework assignment to "Explain God"
"One of God's main jobs is making people. He makes them to replace the ones that die so there will be enough people to take care of things here on earth. He doesn't make grown-ups, just babies. I think because they are smaller and easier to make. That way, He doesn't have to take up His valuable time teaching them to talk and walk, He can just leave that to mothers and fathers. God's second most important job is listening to prayers. An awful lot of this goes on, since some people, like preachers and things, pray at times besides bedtime. God doesn't have time to listen to the radio or TV on account of this. Since He hears everything, not only prayers, there must be a terrible lot of noise in His ears, unless He has thought of a way to turn it off. God sees everything and hears everything and is everywhere, which keeps Him pretty busy. So you shouldn't go wasting His time by going over your parent's head asking for something they said you couldn't have. Atheists are people who don't believe in God. I don't think there are any in Chula Vista. At least there aren't any that come to our church. Jesus is God's Son. He used to do all the hard work like walking on water and performing miracles and trying to teach the people who didn't want to Learn about God. They finally got tired of Him reaching to them and they crucified Him. But He was good and kind like His Father and He told His Father that they didn't know what they were doing and to forgive them and God said OK. His Dad (God) appreciated everything that He had done and all His hard work on earth so He told Him He didn't have to go out on the road anymore. He could stay in heaven. So He did. And now He helps His Dad out by listening to prayers and seeing things which are important for God to take care of and which ones He can take care of Himself without having to bother God. Like a secretary, only more important, of course. You can pray anytime you want and they are sure to hear you because they got it worked out so one of them is on duty all the time.
You should always go to Church on Sunday because it makes God happy, and if there's anybody you want to make Happy, it's God. Don't skip church to do something you think will be more fun like going to the beach. This is wrong! And, besides, the sun doesn't come out at the beach until noon anyway. If you don't believe in God, besides being an atheist, you will be very lonely, because your parents can't go everywhere with you, like to camp, but God can. It is good to know He's around you when you're scared in the dark or when you can't swim very good and you get thrown into real deep water by big kids. But you shouldn't just always think of what God can do for you. I figure God put me here and He can take me back anytime He pleases.
And that's why I believe in God."
What's the reason for Christmas? - This is a question we posed to our kids at our family home one evening.
Our 3 year-old Cephas said "We get to give presents to everyone and get to open them." When asked why we have Christmas, he said "because it's Jesus birthday silly!" he exclaimed in the innocence of a three year-old and went on to say "because Jesus shares with every one that's why we get presents on his birthday."
Amen.
Kimberly Robinstein
Angela's Research
GERD
Gastroesophageal reflux disease (GERD) is a digestive disorder that affects the lower esophageal sphincter (LES) the muscle connecting the esophagus with the stomach. Many people, including pregnant women, suffer from heartburn or acid indigestion caused by GERD. Doctors believe that some people suffer from GERD due to a condition called hiatal hernia. In most cases, heartburn can be relieved through diet and lifestyle changes; however, some people may require medication or surgery.
What Is Gastroesophageal Reflux?
Gastroesophageal refers to the stomach and esophagus. Reflux means to flow back or return. Therefore, Gastroesophageal reflux is the return of the stomach's contents back up into the esophagus. In normal digestion, the LES opens to allow food to pass into the stomach and closes to prevent food and acidic stomach juices from flowing back into the esophagus. Gastroesophageal reflux occurs when the LES is weak or relaxes inappropriately allowing the stomach's contents to flow up into the esophagus. The severity of GERD depends on LES dysfunction as well as the type and amount of fluid brought up from the stomach and the neutralizing effect of saliva.
What Is the Role of Hiatal Hernia?
Some doctors believe a hiatal hernia may weaken the LES and cause reflux. Hiatal hernia occurs when the upper part of the stomach moves up into the chest through a small opening in the diaphragm (diaphragmatic hiatus). The diaphragm is the muscle separating the stomach from the chest. (See Figure 2.) Recent studies show that the opening in the diaphragm acts as an additional sphincter around the lower end of the esophagus. Studies also show those hiatal hernia results in retention of acid and other contents above this opening. These substances can reflux easily into the esophagus. Coughing, vomiting, straining, or sudden physical exertion can cause increased pressure in the abdomen resulting in hiatal hernia. Obesity and pregnancy also contribute to this condition Many otherwise healthy people age 50 and over have a small hiatal hernia. Although considered a condition of middle age hiatal hernias affect people of all ages. Hiatal hernias usually do not require treatment. However, treatment may be necessary if the hernia is in danger of becoming strangulated (twisted in a way that cuts off blood supply, i.e., paraesophageal hernia) or is complicated by severe GERD or esophagitis (inflammation of the esophagus). The doctor may perform surgery to reduce the size of the hernia or to prevent strangulation.
What Other Factors Contribute To GERD?
Dietary and lifestyle choices may contribute to GERD. Certain foods and beverages, including chocolate, peppermint, fried or fatty foods, coffee, or alcoholic beverages, may weaken the LES causing reflux and heartburn. Studies show that cigarette smoking relaxes the LES. Obesity and pregnancy can also cause GERD.
What Does Heartburn Feel Like?
Heartburn, also called acid indigestion, is the most common symptom of GERD and usually feels like a burning chest pain beginning behind the breastbone and moving upward to the neck and throat. Many people say it feels like food is coming back into the mouth leaving an acid or bitter taste. The burning, pressure, or pain of heartburn can last as long as 2 hours and is often worse after eating. Lying down or bending over can also result in heartburn. Many people obtain relief by standing upright or by taking an antacid that clears acid out of the esophagus. Heartburn pain can be mistaken for the pain associated with heart disease or a heart attack, but there are differences. Exercise may aggravate pain resulting from heart disease, and rest may relieve the pain. Heartburn pain is less likely to be associated with physical activity.
How Common Is Heartburn?
More than 60 million American adults experience Gerd and heartburn at least once a month, and about 25 million adults suffer daily from heartburn. Twenty-five percent of pregnant women experience daily heartburn, and more than 50 percent have occasional distress. Recent studies show that GERD in infants and children is more common than previously recognized and may produce recurrent vomiting, coughing and other respiratory problems, or failure to thrive.
What Is the Treatment for GERD?
Doctors recommend lifestyle and dietary changes for most people with GERD. Treatment aims at decreasing the amount of reflux or reducing damage to the lining of the esophagus from refluxed materials. Avoiding foods and beverages that can weaken the LES is recommended. These foods include chocolate, peppermint, fatty foods, coffee, and alcoholic beverages. Foods and beverages that can irritate a damaged esophageal lining, such as citrus fruits and juices, tomato products, and pepper, should also be avoided. Decreasing the size of portions at mealtime may also help control symptoms. Eating meals at least 2 to 3 hours before bedtime may lessen reflux by allowing the acid in the stomach to decrease and the stomach to empty partially. In addition, being overweight often worsens symptoms. Many overweight people find relief when they lose weight. Cigarette smoking weakens the LES. Therefore, stopping smoking is important to reduce GERD symptoms. Elevating the head of the bed on 6-inch blocks or sleeping on a specially designed wedge reduces heartburn by allowing gravity to minimize reflux of stomach contents into the esophagus. Antacids taken regularly can neutralize acid in the esophagus and stomach and stop heartburn. Many people find that nonprescription antacids provide temporary or partial relief. An antacid combined with a foaming agent such as alginic acid helps some people. These compounds are believed to form a foam barrier on top of the stomach that prevents acid reflux from occurring. Long-term use of antacids, however, can result in side effects, including diarrhea, altered calcium metabolism (a change in the way the body breaks down and uses calcium), and buildup of magnesium in the body. Too much magnesium can be serious for patients with kidney disease. If antacids are needed for more than 3 weeks, a doctor should be consulted. For chronic reflux and heartburn, the doctor may prescribe medications to reduce acid in the stomach. These medicines include H2 blockers, which inhibit acid secretion in the stomach. Currently, four H2 blockers are available: cimetidine, famotidine, nizatidine, and ranitidine. Another type of drug, the proton pump (or acid pump) inhibitor omeprazole inhibits an enzyme (a protein in the acid-producing cells of the stomach) necessary for acid secretion. The acid pump inhibitor lansoprazole is currently under investigation as a new treatment for GERD. Other approaches to therapy will increase the strength of the LES and quicken emptying of stomach contents with motility drugs that act on the upper gastrointestinal (GI) tract. These drugs include cisapride, bethanechol, and metoclopraide.
Tips to Control Heartburn
What If Symptoms persist?
People with severe, chronic esophageal reflux or with symptoms not relieved by the treatment described above may need more complete diagnostic evaluation. Doctors use a variety of tests and procedures to examine a patient with chronic heartburn. An upper GI series may be performed during the early phase of testing. This test is a special x-ray that shows the esophagus, stomach, and duodenum (the upper part of the small intestine) while an upper GI series provides limited information about possible reflux; it is used to rule out other diagnoses, such as peptic ulcers. Endoscopy is an important procedure for individuals with chronic GERD. By placing a small lighted tube with a tiny video camera on the end (endoscope) into the esophagus, the doctor may see inflammation or irritation of the tissue lining the esophagus (esophagitis). If the findings of the Endoscopy are abnormal or questionable, biopsy (removing a small sample of tissue) from the lining of the esophagus may be helpful. The Bernstein test (dripping a mild acid through a tube placed in the mid-esophagus) is often performed as part of a complete evaluation. This test attempts to confirm that the symptoms result from acid in the esophagus. Esophageal manometric studies-pressure measurements of the esophagus-occasionally help identify critically low pressure in the LES or abnormalities in esophageal muscle contraction. For patients in whom diagnosis is difficult, doctors may measure the acid levels inside the esophagus through pH testing. Testing pH monitors the acidity level of the esophagus and symptoms during meals, activity, and sleep. Newer techniques of long-term pH monitoring are improving diagnostic capability in this area.
Does GERD Require Surgery?
A small number of people with GERD may need surgery because of severe reflux and poor response to medical treatment. Fundoplication is a surgical procedure that increases pressure in the lower esophagus. However, surgery should not be considered until all other measures have been tried.
What Are the Complications of long-term GERD?
Sometimes GERD results in serious complications. Esophagitis can occur as a result of too much stomach acid in the esophagus. Esophagitis may cause esophageal bleeding or ulcers. In addition, a narrowing or stricture of the esophagus may occur from chronic scarring. Some people develop a condition known as Barrett's esophagus, which is severe damage to the skin-like lining of the esophagus. Doctors believe this condition may be a precursor to esophageal cancer.
THIS INFORMATION WAS FOUND AT
National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Email: nddic@aerie.com
This publication is not copyrighted. The Clearinghouse encourages users of this text to duplicate and distribute as many copies as desired.
Submitted by Angela Bennett, Web Researcher to Guardian Society
lazlo@best.com
In our Mail Box
Hi!
My name is Erika, and I am a 32 yr. old mom of twin 6 yr. old boys, one of which has long segmented Hirschsprung's. His name is Ronny, and his brother is Timmy. Ronny has an ileostomy. We have had the pull through 2 years ago, but it failed due to a development of an anal fistula. We will attempt the closure again this summer. I have been looking for a site like this for a long time, and could not find one until now. I am in the process of designing a web site, which will be called "For the Love of a Child". There is just not enough support for families out there, and I am so glad to have found you. Please include me in your group, for I would love to be a part of your "family", and will contribute whatever I can in any way.
Thanks, and GREAT JOB!!
Hi my name is Leanne. I would love to join your society I just hope that I can do so from S.A.
My son is 2.8 years old and has Noonen's or RSS, a heart problem and Reflux and the doctors want to operate on him. I really would love to receive your newsletter if possible. My e-mail is leatim@globaal.co.za. My physical address is P.O. box 650963, Benmore, 2010, Johannesburg, South Africa.
Many thanks Leanne Kirkman
...
Subject: Response to your beautiful site!
Wow! What a great site! I'm not sure how I ended up here? But I have a three-yr. old with Rett Syndrome and have spent her whole three years dealing with Gastroesophageal reflux. We only found out that is why she vomits so much last winter. We chose not to put a g-tube in her at this point due to our own investigation of this. However we want to try medication for her reflux and constipation. Anyway I wish I had the Internet through the nightmares of medical tests and doctors not knowing what was happening to our littlest angel. I'll be back to your site for sure! It's a very hard thing to deal with all the problems that have surfaced with this disease. Well, I'll be back my baby wants me. Thank you for this site! Michele Rolfe
ShellyR498@aol.com
...
Hi Kimberly,
I've written to you before, and I spend most of my time on AOL, but today I read my mail on GTE and saw you might be able to hook me up with people in my area. I live in Thousand Oaks, Ca but grew up in Bakersfield, so that's funny that you said you know of people there. Please do what you can to introduce us to some people out here.
Thanks,
Tanya-mom to Eddie (14 months HD)
Tanya.Zmitrewicz@gte.net
Meet some new members
I too have a son with Hirschsprung's. He is now 7 years old and a very normal young man. We do occasionally have challenging bouts with constipation, but on the whole he is doing great. Boy could I have used this site about 6 years ago when the pull through was done and nobody informed me of the reality that would bite me later which is: you never cure this disease totally. The worst part was over but the hardest part was just beginning. I would love to be able to talk to
Someone who could understand how frustrating and heart breaking this disease is. Not to mention exhausting. Thank you for the opportunity to vent a little of my pain that has been bottled up for 7 years.
Kristin Guyton
TSJ9113@aol.com
Laugh Break
A little humor to break the gloom
Kim,
The last stay in the hospital for Jennifer was good. Not good that we were there, but good because we played little pranks on the nurses and doctors. To break the gloom one morning before the nurses and doctors made their rounds we put some plastic insects under Jennifer's nightgown. When they came to check her we told them something had been bugging her around her stomach area. They said let's take a look at it. She raised her gown and (BOOM) they were shocked at first, then they saw what they were, and they busted out laughing. It raised Jennifer's spirit so much that day. To know that she had pulled a trick on them, and started the day with a good laugh. Even in adverse conditions we can bring a little humor.
Bye for now,
Mel
...
Warning men - you might want to turn the page on this one but ladies listen up, they claim to have found the male housekeeping chromosome hehe.
I got a chuckle from this, just thought I'd pass it along.
Iona K
Male Housekeeping Chromosome Found
The Y chromosome was once thought to be a "functional wasteland" - a carrier of male-determining genes and not much else. Now researchers have found 12 new genes that suggest that the Y chromosome also carries a second group of important genes known as "housekeeping" genes in addition to those that control gender and fertility, according to a report in Science. Unfortunately, those housekeeping genes govern the regular functions of individual cells - they do not stimulate a man to scrub the toilet or tidy up the kitchen. - Reuters
DARN IT
Medline
Medline Search pays off
J Pediatr Surg 1996 Jan; 31(1): 33-36
One-stage versus two-stage Soave pull-through for Hirschsprung's disease in the first year of life.
Langer JC, Fitzgerald PG, Winthrop AL, Srinathan SK, Foglia RP, Skinner MA, Ternberg JL, Lau GY
Department of Surgery, Washington University, St Louis, MO, USA.
Several investigators have reported good results after a one-stage Soave procedure without a stoma for infants with Hirschsprung's disease. The authors reviewed their concurrent experience with the one- and two-stage approaches, comparing the two groups with respect to rate of complications and clinical outcome. Over a 3-year period, 36 infants with colonic Hirschsprung's disease presenting in the first year of life were treated with a Soave pull-through. Thirteen had a one-stage pull-through, and 23 had a two- stage procedure using an initial stoma. There was no difference with respect to median age at time of diagnosis, median follow-up period, length of aganglionosis, or male: female ratio between the groups. The incidences of major complications such as small bowel obstruction, segmental or acquired aganglionosis, anastomotic leak, and malabsorption were equal between the two groups. However, 13% of the two-stage patients required revision of the stoma. All major complications in the one-stage group were I those who weighed less than 4 kg at the time of surgery. Minor complications such as wound infection, perianal excoriation, and need for repeated dilatation were similar between the groups, but minor stoma-related complications (prolapse or retraction) occurred in 26% of the two-stage infants. When complications were stratified using a more sophisticated scale of severity, no significant difference was found between the groups. The overall complication rate was 1.5 events per patient in the one-stage group and 2.0 events per patient in the two-stage group. This small difference was related to the presence of a stoma in the two-stage group. Overall, 10 of 12 survivors in the one-stage group and 22 of 23 in the two-stage group were doing well, with normal bowel function noted on long-term follow-up (mean period, of 14 and 19 months, respectively). Both one- and two-stage approaches were associated with a significant complication rate, although long-term outcome was excellent in both groups.
The higher complication rate in the two-stage group was attributable to the presence of a stoma. For small infants, it may be beneficial to delay the one-stage pull-through until weight exceeds 4 kg.
Reprinted from Medline
PUBMED is a good search engine for finding information related to a number of Diseases. Full text articles are available from them as well.
Hirschsprung's disease and allied disorders--a review.
Holschneider AM, Meier-Ruge W, Ure BM
Department of Pediatric Surgery, Children's Hospital of Cologne, Germany.
Despite skepticism in the English speaking literature today there is international agreement on the existence of neuronal intestinal dysplasia and other intestinal malformations, which may well be differentiated from classical aganglionosis. In large series of patients with neuronal intestinal malformations it was found that only one fourth suffers from Hirschsprung's disease. Therefore this article presents the state of our recent knowledge of classical aganglionosis and allied disorders which include hypoganglionosis, neuronal intestinal dysplasia type A and B, immaturity of ganglion cells and not classifiable dysganglionosis. We want to emphasize the morphological differentiation of these neuronal intestinal malformations. However, the relationship between morphological findings, clinical symptoms and bowel motility remain to be clarified by further studies.
Eur J Pediatr Surg 1994 Oct; 4(5): 260-266
Reprinted from Medline available on the Internet at http:www.medline.com
HANID
HANID - Hirschsprung's-associated neuronal intestinal Dysplasia (NID)
20 - 75 % of Hirschsprung's patients will have NID
HANID may be a distinct disease compared to isolated NID
NID attained segment may be retained without increased risks or morbidity.
Just thought you may be interested to know that this HANID is a recognized
term. To find out more about HANID contact us for more information
For Your Information
Web Pages
Organization: "Bearable Times" -The Kids' Hospital Network
Subject: Kids Helping Kids!
Hello
I just wanted to tell you about a Website my daughter Alexis created from the take-off of a newsletter she produces. The site is called Bearable Times Kids & Teens Club http://www.tiac.net/users/bearkids
A little note on Alexis, she is 14 and in the 9th grade. She was born with CP and sickle cell trait, later developed scoliosis, and when she was 9 diagnosed with lupus. At 10 she created "Bearable Times" a newsletter for kids that are ill or challenged. She has been in the media, but if your local library has Nickelodeon's The Big Help Book -365 Ways You Can Make a Difference by Volunteering from author Alan Goodman, you can find Alexis on page 91. Children interested in emailing Alexis can reach her at ReesesAMRB@aol.com
Victor Bishop has put together a great site about Hirschsprung's disease and downs syndrome with some great articles as well as good information on what is called TNI (NuTriVene-D) as a way to help deal with some of the aspects associated with Downs Syndrome
Victor J. Bishop
Riverbend Down Syndrome Parent Support Group
URL: http://www.altonweb.com/cs/downsyndrome
E-Mail: bishop@ezl.com
FYI
Information on Resources for the Disabled
The national information center for children and youth with disabilities NICHCY distributes many publications, which are of interest to families with disabled children most of, which are free. The organization also publishes a pamphlet on "Resources for Adults with disabilities" one of their latest is a News Digest which discusses "Parenting a Child with Special needs: A guide to Readings and Resources " For a listing of their publications, including their state resource sheets call 800-695-0285 or 202-884-8200; or look up their web site at http://www.nichcy.org
Gastro-Intestinal Research Foundation
70 East Lake Street Suite 1015 Chicago IL, 60601-5907
Tel 312-332-1350
Mission: supports research and training programs at the university of Chicago medical center, section of Gastroenterology; sponsors education's activities for the public Materials newsletter, and patient education pamphlet
...
Family T.I.E.S network
Parent Training and Information Center
830 South Spring Street
Springfield IL, 62704,
800-865-7842
email FTIESN@aol.com
A unique collaboration among parents and individuals with disabilities, advocates, and professionals which represents genuine diversity their mission is to achieve meaningful change in Illinois through a comprehensive and culturally competent state wide system on parent empowerment, including training, advocacy, and support that will build on the inherent strengths of families roles in accomplish that change
Digestive Disease National Coalition
507 Capitol Court NE, suite 200
Washington DC 20003
Tel 202-544-7497
Mission informs the public and health care community about digestive diseases; seeks federal funding for research, education, and training, and represents members interests regarding federal and state legislation that affects digestive disease research and, health care and education. Materials Brochures and newsletters
...
To submit any organizations please send mission statement, and pertinent information to the society for consideration.
Ask Jennifer
Dear Jennifer,
Hi Jennifer. I am an adult who lives in England. As a baby I had HD which you may have heard of but it a problem with the bowel. I have 4 kid older than you 18,16 do and twins of 13. The reason that I am writing to you not about them or me but I have a great nephew Sam aged 4, his mum is also called Jennifer but we all call her Jenny. Sam has a lung problem called Cystic Fibrosis. I know that is nothing like your problem but he was not eating so they had to put a tube into his stomach so that he can be feed overnight. I understand from your mum that you have to feed through a tube and I was wondering if the feeding was like Sam. I have just been up to see him and his family; they live 300 miles away in the North of England. It is the first time that I have seen him since he has had this method of feeding and the difference in him is amazing. So full of life and so full of himself. Jumping on everyone and being a total pest. Does your mum and sisters like you being a pest to them. Just noticed that one of your sisters is Tina, one of my nieces is also Tina, short for Martinne. She has grown up and now has a girl of her own called Lear but she was also poorly as a girl. She has grown up to be a very pretty young woman so you see being ill at your age does not stop you from growing up from a pretty young girl into a young lady like my Tina has. If your tube is like Sam's then would it be OK to ask you questions about it? Feel free to ask me any questions.
Gerry Adult 45 with HD Husband to June age **
Father to Kristian 18, Emma 16, Claire 13 & Michelle
Hi Gerry
Thanks for writing to Jennifer. Here are some of her answers:
I don't have a tube, I have a button. I have had tubes before, but I didn't like them the button is much better. My button goes into my tummy because I have trouble eating. I take my yucky medicines and my formula in the button. I am on my pumps a lot but I do get to go to school.
I think it is neat that your niece is named Jennifer like me, and you also have a Tina and a Michelle in your family. My sister's name is Tina Michelle. Say Hi to Sam
Mum's PS
Jennifer is also on IV feedings and that is how she gets 90% of her nutrients. We have tried to get her off the IV, but she cannot gain weight on just oral and enteral feeds. Again thanks for writing and hope to talk to you soon
Maritia Sparks
Please submit questions to Jennifer's mom at
Support Parents
Regional support parent contact Sheet
Diane Ippolito
ippolito@genesis.net.net
Diane is raising twins, one with HD and one without and is interested in helping network parents and deal with difficult issues.
David and Michelle Cairns
David is one of our ministers. Both David and Michelle serve as support parents for Buena Park CA. They are the parents of Evan who suffers from GERD and APNEA.
Paula Seifert
Paula and her husband are raising two children, one with difficult GERD. Paula is interested in all aspects of caring for special needs children.
Angela Ogletree
gpaywm@aol.com
Angela is raising a son with Imperforate anus and Hirschsprung's. She and her husband are interested in helping with issues related to raising a special needs child
Karen Higgs
Karen is raising a child with Hirschsprung's and she her self has Hirschsprung's and is a wealth of information in not only raising a child with Hirschsprung's but how it feels as well
Joe and Elizabeth Kohn
Kohns@prodigy.net
The Kohns are raising a child with IA and possibly HD. Elizabeth is my coeditor of the newsletter and they are interested in helping families with what ever needs arise.
Joan Foley
Joan has successfully raised a child with total colon Hirschsprung's and is interested in helping parents cope with raising a special needs child.
Kim Ulacco
kimmer16@juno.com
Kim is an adult with total colon Hirschsprung's and just recently gave birth to her first child. Kim is interested in helping others to understand what the children go through. (Kim is Joan Foley's daughter.)
Carolyn and Paul Rosado
Carolyn is vice-president to guardian and Paul is one of our Pastors. They are raising a house full of kids including several special needs children. They are interested in helping parents with any needs that arise. Carolyn has a sideline business of designing web pages and much more to help cover the family's expenses.
Contributions
Got stories or comments?
send to
Kimberly Robinstein
Notice
This newsletter is intended to report items of interest to persons that may be suffering from motility disorders, we neither promote nor recommend any treatment or therapy. The relevance of anything printed in this newsletter to a particular person should be discussed by the family with their own physician. Our hope is that this method of communication will promote communication between parents and foster support among families
All rights reserved.
This publication may be copied and distributed but not changed in any way as to cause us to void copyrighted articles it may contain.