The Guardian
Who We Are
The Guardian is a support group that is just recently getting on its feet. Our goal is to offer support, encouragement and resources to those who have Hirschsprung's Disease, GERD or other motility disorders as well as to parents of children with these disabilities. We also want to support our members and readers in other areas of their lives. We realize in most families there are more children than just the ones afflicted with these anomolies and many times there are many other factors in life that can add tremendous stress to an already stressful situation. We hope to share information, educate, and support everyone as much as we possibly can. Feel free to contact any of our Board Members for further information or assistance as well as any questions you might have.
Helpful Information
Bulk forming products are the recommended choice as initial therapy for most forms of constipation. Their action is to hold water in the stool, causing distention of the intestines and stimulation of normal peristalsis. These products most closely approximate the physiologic mechanism of evacuation and are considered the safest of laxatives. Products include psyllium seed, cellulose derivatives, polycarbophil, and malt soup extract. I know about all the products mentioned except malt soup extract. I have never heard of this. It may be the cure-all I have been looking for. Wouldn't that be great!!! I wish there was more info in this article about it, but this is it.
FYI:
There is a section about mineral oil that I found interesting and here is
that...Patients taking mineral oil should not take docusate products.
Mineral oil may be absorbed, provoking a foreign body reaction. Mineral
oil can easily be aspirated into lungs; do not administer at bedtime or to
very young, elderly, or debilitated patients. Mineral oil may impair the
absorption of fat-soluable vitamins, A,D,E, and K. Decreased vitamin K
absorption is particularly significant for patients taking oral
anticoagulants, as their effect may be increased. Impaired vitain D
absorption may affect the absorption of calcium and phosphates. I didn't
realize that mineral oil had these effects. Who knows, this may not apply
to GI children anyway. We basicaly have to do what ever is necessary to
clean them out. Take this for what it is. Info that I am passing on to
you. I don't claim to be any expert in anything. This is just something I
found in a pharmacy journal. By Connie
Ask Our Parents
These are questions concerning our children regarding their various anomolies. Questions presented will be answered by Our Parents. Here are a few that have been asked prior to our publication.
How was Hirschsprung's discovered for those facing this disease? Nancy mother of Ross 5yrs with Tethered Cord and Anne and Ben also
Just out of curiosity, is there *anyone* out there who has had
successful long term treatment of vomiting/reflux/retching??? It seems
like with all the posts I've read lately, we're all stuck in this sinking
ship without much hope. Just wondering if I've missed some positive
stories! Sue, Mom of Jamie, Tyler, Will, and ????
Ask the Doctor
Unfortunately the questions submitted to us to ask Dr. Michael Skinner
were too general to be answered here. If you have a question for the
doctor please submit it to maniac@rnet.com and please be very specific. If
we receive questions we will post them in next months newsletter. Sorry
about the confusion.
News
There are currently bills being put through Congress to "slash" SSI benefits for disabled children/adults and retired senior citizens. If anyone would like further information on what is going on and what they can do to prevent these changes that will negatively affect many familys please email the secretary (bette@thevision.net) or the president (maniac@rnet.com).
SUPPORT THE $24 BILLION SENATE BILL IN THE CONFERENCE COMMITTEE There's a bill trying to go through that will provide better child health. For more information again email the secretary or president of The Guardian Foundation and a copy of the letter and pertinent information will be emailed to you.
Meet a Member
I am the mother of a seven-week old who had the pullthru operation at five weeks. I have read some of the mail (on PTN) and learned much. If there is anyone who can share with me what to expect over the next few months it would be appreciated. He was diagnosed with HD at a week old. I irrigated 2x a day to avoid a colostomy. Loisa and her son are new members. If anyone wants to respond to her question regarding what to expect in the future please send the response to and I will forward the information to her.
Funny Things Kids Do
This next one has nothing to do with her GI problems, but it is still medically related and quite funny.She is basically blind in her left eye, and it also is "lazy". I don't remember the medical term for it. At her appointment on Monday, she was supposed to reading the eye chart with her left (bad) eye, and as usual she was struggling. Then all of the sudden, she was reading them lickety split, the dr and I looked up at the same time in amazement and saw that she had scooted her face over and was reading with her right eye. We both just laughed. At least she knows how to compensate when needed. by Connie
My older son, who is not afflicted with a motility disorder was so cute one morning. We were getting ready to go on a trip. He had just woken up and was looking his mommy up an down, kinda like a man would check out a woman. Finally I said, "WHAT!" He smiled his cute four year old smile and said to me "Mommy, you are very beautiful" That really touched my heart. by Bette Culver
Since we deal with poop issues freely here I thought I would share some funny stuff: my Terran who is 11 months old on the16th just loves to take his custom made diapers off and run in the nude.Well, the other day while his 3 year old brother was making mud pies Terran decided to take it off in the yard. Not thinking anything of it I let the kids play. Terran enjoyed the mud so much I did not have the heart to stop him. A few minutes later my son Cephas came up to me, "Boy kid," I said "you smell bad what you been up to?" He said, "Oh, Mom I was just mixing Terran's poop with my mud and made poopy mud pies. Want some?" hehehehe by Kim Robinstein
A Grandparent's Point of View
I'm the grandmother of 4 wonderful grandchildren; one who happens to be an Hirschsprung's Disease baby. I'm sure your support group is for parents of children with HD, but there's some grandparents very involved in these children's lives too. My daughter and her children have lived with us for most of the children's lives, so we are very involved in their lives.
When my daughter was pregnant with the kids, we were thrilled-and I was there in the hospital as her support person. Very wonderful to be part of the birth of your grandchildren! But when it was my grandson's turn to be born, there were difficulties and he was born with surgical help. Mom was really great and I saw them shortly thereafter and held Braden and helped clean him up to show his mom. Then a little later I went home and returned to the hospital the next morning,the nurse was in the room trying to show her how to feed the little guy ( as if she hadn't already done this with another one), but he was not interested at all. Ok, so a bit later the nurse came back again, tried again, still not interested. But a few hours later, after I had gone back home to brag about our new grandson, we got the call-my grandson and his mom were being medi-flighted to a city a few hours away, there was something wrong with our newest grandchild!
Heart stopping stuff to receive those kinds of calls! So off they went, her having just had surgery, and my grandson who still had not had any kind of nutrition-what could it be? We were shortly to begin increasing our vocabularies with words like Hirschsprungs Disease (oh gosh, whatever is that, we'd never heard of anything remotely like that frightening word.)
He went through several surgeries and procedures and of course all this testing and needle poking my daughter went through the "what do I do? I just had surgery and my older son is at home and needs me" kind of stuff. Us grandparents were keeping her older son and answering all the relatives' questions as best we could and keeping up with a son and daughter-in-law who also presented us with a grandson 3 days after our other grandson's birth. So we were a little busy here, along with my husband's mother living here with us-as she was preparing to die and having hospice coming out and a real live doctor who made house calls (can ya believe it?).
Anyways, my grandson eventually came home and was really sickly, scared us time after time.We would think "he may not make it till tomorrow" and we'd love him a little more and figure out another experience that we could let him have-a lot of first tastes, first touch, first whatever kind of experiences. Because we knew his time could be very limited and we wanted him to see, hear and experience everything that he could, while he could.
And now our grandon is 2 years old and running everywhere on his good days, talking, walking, tasting, touching and driving us all wild at times. But he's our miracle baby and we know God has special things ahead for him, since He has brought him this far. So many people praying for him and wanting to know how it goes for him. Thanks for letting me share a bit of our experiences with you.
Feel free to e-mail me : fireglo@thevision.net Betty Sr.
Sib to Sib
On the internet as well as within many support groups there are places for siblings of children with health problems. One of these problems is called SibNet. Below you will find some information about it and how your child can become a member. It's important for us to remember the stress that our special needs children can create in their siblings. They need support too so they know that they are not alone and have a better understanding of what is happening to them and around them.
THE SIBLING SUPPORT PROJECT of Children's Hospital and Medical Center in Seattle, Washington, is pleased to announce SibNet. SibNet is the first and only listserv for and about brothers and sisters of people with special health, developmental, and emotional needs. Most of us are brothers and sisters, but parents and service providers also subscribe to SibNet. WE ENVISION SIBNET as a place where brothers and sistersof all ages can share information and discuss issues of common interest. We hope it will also be of interest to parents, service providers and others interested in the well-being of siblings.
SibNet, at the very least, is a place where subscribers can: Connect with their peers. Many brothers and sisters have never talked to a peer about growing up with a sibwho has special needs. SibNet will be a place to share the good times, the not-so-good times, and everything in between with others who "get it." Connect with others who are running programs for young, teen, and adult brothers and sisters. Seek information about local services. Many adult siblings find that they are increasingly involved in the lives of their brothers and sisters, even though they may live in another state. On SibNet, subscribers can inquire about services, programs and policies in the communities where their siblings live.
This was an excerpt of an email to a person who subscribed to SibNet. I believe this is a very helpful organization for the siblings of our special needs kids. Anyone interested in obtaining further Information can contact SibNet by:
Sending a message to: majordomo@chmc.org Important: leave the subject
line blank Type the follow text in the body of the message: subscribe
SibNet (your first name your last name) Within three days, you will
receive a message welcoming you to SibNet and confirming that you have
subscribed. You may then send mail to the entire list by sending your
message to: sibnet@chmc.org
Prayers and Support
Felicia Johnson's son Anthony is currently in the hospital with sever colitis. Prayers, emails, cards and such are much in need for them right now. You can email her at FGJOHNSON@aol.com We encourage everyone to contact them and let them know they we are thinking of them and keeping them in our prayers.
Thank you,
The Board of The Guardian Support Group
Article of the Month
TCA
Total colonic aganglionosis (TCA) is a variety of what is commonly known as long segment Hirschsprung's disease plagued with delay in diagnosis, higher morbidity/mortality and controversial management. The colon is aganglionic sometimes involving a variable segment of distal ileum. Clinically, infants presents with small bowel obstruction, persistent obstipation, distention, or poor weight gain. Early diagnosis depends on clinical awareness of the condition in neonates with intestinal obstruction, diarrhea, or both.
Barium enema changes may easily be passed as unremarkable. Radiographic findings of a shortened colon of normal caliber or the presence of "jejunalization" of the colon suggest TCA in patients with a suggestive history. However, free ileal reflux during the examination with a transition point in the ileum and retention of barium in the entire colon after the examination may be diagnostic.Diagnosis is confirmed by rectal biopsy, and the extent of aganglionosis documented after multiple intestinal biopsies. Management consists of initial enterostomy in the proximally ganglionic bowel (a source of fluid/electrolytes losses, prolonged hospitalization, and nutritional deficiency), followed by a pull-through (Soave or Duhamel) using a side-to-side anastomosis between a segment of the aganglionic colon to the ganglionated small bowel. The procedure provides a greater surface area for absorption and fecal storage.
Diarrhea and distension are temporary after the pull-through, but most patients ultimately tolerate normal feedings.
Edited by: Humberto L. Lugo-Vicente, MD, FACS, FAAP- P.O. Box 10426,
Caparra Heights Station, San Juan, Puerto Rico 00922-0426. Tel
(787)-786-3495 Fax (787)-720-6103 E-mail: titolugo@coqui.net Internet
Address: http://home.coqui.net/titolugo University Edition:
http://www.upr.clu.edu/psu
Internet Links
Great news!!! The Guardian Support Group has just gotten their listserver running. To join it all you have to do is send an email to Majordomo@avenza.com and in the body of the letter put subscribe Guardian-L your@address.com
I hope you all will enjoy being linked to other parents of special needs children. Happy typing!
The Guardian web page can be located at: http://wg.rnet.com/maniac/guardian.htm
Understanding GERD
http://www.acg.gi.org/gerd/word.htm
http://www.acg.gi.org/gerd/stop.html
http://www.acg.gi.org/gerd/info.html
httP://www.acg.gi.org/gerd/talk.html
http://www.acg.gi.org/gerd/press.html
http://www.acg.gi.org/phyforum/gifocus/2evi.html
Quote of the Month
There's a lot of controversy over a line in the movie Men in Black by parents of kids with certain diseases I thought we should include the quote from the movie. Let's try to take it in the context in which it was meant. It's a movie made for entertainment purposes, not intentionally made to offend parents or children with motility disorders or anorectal malformations....
The coroner is dictating her report and she says, blahblahblah, and when i tried to take a rectal temperature, i found there was no rectum. This is odd."
NOTICE
This newletter of The Guardian Support Group is intended to report items of interest with regard toHirschsprung's Disease, GERD and other motiltiy disorders. We neither promote, nor recommend any therapy, treatment, etc. The relevance of anything printed in this newsletter to a particular person should be discussed by the family with their own physicians. Our hope is that this method of continued up to date information will promote communication between parents and foster support among familes. All rights reserved