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Dear Jessica, First of all, Jessica, you did the right thing by sharing your concerns on the International Adhesions Society (IAS) Message Board with others, who suffer from adhesions. Adhesions are NO respector of age--and so you see your concern about your little brother was entirely appropriate. Your voice in behalf of Dylan was also entirely appropriate. In your first message you said, "Hi, I feel bad sending you a message because I don't suffer from your condition but my baby brother does. At the moment he's in a childrens hospital and has been there for the last three months (yeah all over christmas and everything). The problem is he just doesn't seem to be getting any better and I was wondering if you could enlighten me a bit. I really don't understand everything about his condition and especially not the problems that have happened prior to surgerys!"
I'm not sure if your questions were answered concerning the problems your little brother, Dylan, is having with adhesions; but there are a few things I can tell you about adhesions to help you understand the problems Dylan is having now.
Adhesions are the human body's way of healing and protecting itself following a trauma such as surgery! After a surgical procedure has been completed, adhesions begin to form in as little as 3 hours and as long as 7 days. The body sends out its army to encapsulate any blood and other foreign debris that may remain in the abdominal cavity. The result is adhesions that attach the surfaces of the affected internal body organs to each other--and at some time later these adhesions begin to interfere with and prevent the natural movement of the internal organs. This is a completely normal and natural response that causes a lot of problems for people, who have had surgery.
Jessica, I am sharing this letter with your friends at the IAS website. The IAS is an international support and education website for anyone, who suffers from adhesions...and also for members of their family who also are in need of support and education. So now you know that your parents are also welcome to seek support and education here too. Right now I want to refresh the memories of your IAS sisters with Dylan's case.
Jessica (age 19) posted the following message of deep concern for Dylan, her little brother, who is only 3 years old:
" Dylan was born 17th sept 1999. he's just gone three and so far he's had at least a dozen major surgerys and at least two dozen minor. when he was born they couldn't diagnose what was wrong for 11 months and we only found out then because he got dehydrated while on holidays in magaluf and a specialist spotted it then. he was given a colostomy bag and had a large part of his intestines removed as well as part of his bowel. he was great with the colostomy for a year and then they tried to reverse it but that failed so we were back to the colostomy again." Dylan had been diagnosed as having
X> Hirschsprungs disease (Note: The ending of the Url is ( hirschsprungs.html )
http://www.keepkidshealthy.com/welcome/conditions/hirschsprungs.html
" Hirschsprungs disease (also called congenital aganglionic megacolon) is an uncommon condition that occurs in 1 in every 5000 births and is more common in boys. It is caused by a lack of ganglion cells (nerve cells) in the end of the colon and rectum, causing it to be contracted and blocking the passage of stool out of the colon. This causes constipation, which is the classic symptom of this disorder.
" Many children with Hirschsprungs disease develop chronic constipation later in the first month of life. This can cause an intestinal obstruction, which may then lead to abdominal distention, vomiting, poor feeding, and poor weight gain " Treatment of Hirschsprungs disease is by surgical repair, which consists of first creating a colostomy and then later removing the part of the colon without the ganglion cells and connecting the healthy parts back together."
Then Jessica continued by saying: "We nearly lost him a couple of times, we're extremely lucky he held in there and is still with us but now the adhesions are causing big problems for him. he's had about 30 surgerys since birth over a dozen of these were major surgery, he's been revived twice, been on a ventilator and life support more than twice and had collapsed lungs among a heap of other problems and i just don't understand it at all. why does this condition cause such severe problems and why are there such limited options??"
Jessica, as you are well aware, adhesions can cause horrific problems for its victims; and there are very few doctors / surgeons, who have any idea as to how to help an adhesion-suffer. That being the case, many doctors do not want to deal with the frustrations that adhesion-sufferers present with--and these uncaring doctors begin to look for a way to dismiss such a patient.
Very few doctors have received the training so necessary to treat chronic pain!! Medical school curriculums offer their medical students very little about the treatment of chronic pain. Only medical students, who have specialized in anesthesiology--with an additional specialization in chronic pain--have the knowledge that is required to titrate pain medications and to tailor these pain medications to patients, who have differing pain medication needs.
The following is a more complete list of the known causes of adhesions: Adhesions can develop any time there is internal bleeding (from an injury or surgery), from the pinching of blood vessels or from inflammation. Commonly, adhesions result from the most routine activities of surgery including cutting, coagulation and suturing, according to the Confluent Surgical Learning Center (CSLC). Foreign materials such as sutures, lint from sponges or powder from surgical gloves can cause an inflammatory response that can result in adhesions, the CSLC notes. Finally, adhesions can form from anything that causes an inflammatory response, such as endometriosis, radiation therapy, pelvic inflammatory disease, infection and even from a seat belt injury as the result of a car accident!!.
Because Adhesion Related Disorder (ARD) is not recognized as being either a disease or a disorder; and this is the source of the problem!! If a doctor does not recognize that adhesions can and do cause severe problems for its victims, then it becomes very easy for doctors to discount their patients, who complain about chronic pain, by telling them that adhesions do NOT cause pain!! When doctors make a statement like that, their ARD patients can soon expect to be told that their problem is psychological by telling them: "It's all in their head!" The ARD patient needs to get a mental health evaluation. Or doctors will give their ARD patient other unhelpful reasons for their pain!!
Surgery for adhesions (adhesiolysis) is one of the most difficult, most time consuming and most risky surgical procedures that a surgeon has to perform!!! To make matters worse--because adhesions are not recognized as a disease or disorder--surgeons are very poorly reimbursed for performing these procedures. Surgeons are well aware of the risks involved in adhesiolysis procedures; and for that reason they really do NOT want to take a chance--considering they could be sued for malpractice, if they should inadvertantly cause harm to their patient.
It is the mission of the International Adhesions Society to do whatever is necessary to create awareness of adhesion related disorder (ARD); and one day---as a result of the International Adhesions Society and all of its members throughout the world (including Ireland)-- One day ARD will be granted the recognition needed for ARD to be included with all of the other recognized diseases and disorders.
Jessica's parents are now faced with having to make a decision regarding little Dylan's care. Two surgeons, who qualify as being adhesion specialists, would like to offer a second opinion regarding Dylan's case. Should Dylan's parents accept this offer of a second opinion? If they want to, do they have the strength to insist that Dylan be given a second opinion? Are Dylan's medical problems becoming a real burden for them? Do they have the financial resources--including some kind of health insurance--that a second opinion could entail? Is their respect for Dylan's attending physicians making it too difficult for them to even consider a second opinion? These are some of the questions that Dylan's parents may be facing at this time.
Jessica, you have been able to share your feelings about your concern for your little brother, whom you love so much!! Hopefully, you will continue to post messages--and allow your many friends at the International Adhesions Society website to help you through this very difficult time!! It is okay to be angry. It is okay to be sad. It is okay to express your true feelings!! Please continue to seek support with your IAS sisters. If there is a way for your parents to do the same, they will certainly feel welcomed. I'm sure they have many questions about what has happened to Dylan--and this is what the International Adhesions Society is all about!!
Since I am from the United States, it is difficult for me to know how the health system functions in other countries of the world--such as Ireland; but is possible that most health services are provided free of charge for low-income groups (and at moderate charges for others) through local and national agencies under the supervision of the department of health. A nonprofit, contributory, voluntary health insurance scheme is administered by an independent statutory agency. Public insurance and assistance programs are administered by the department of social welfare and include pensions for the aged, widows and orphans, children's allowances, unemployment benefits and other social security items.
Lack of financial resources may be making it difficult for your parents to accept a second opinion; but hopefully they will be able to get the financial help needed to allow Dylan to have the second opinion that could at least help these two surgeons know if they can find a way to help Dylan regain his strength and his health--and eventually the possibility of going home. ALL children have a right to be healthy so they can enjoy their childhood!!
Jessica, if you or your parents have questions that have not been answered, please either post them on the IAS Message Board or send them to me at: olddad66@runestone.net and I will do my best to answer them.
All IAS members: Please keep Dylan and his family in your prayers.
In peace and friendship,
-- Helen Dynda (Hoffman, MN) ARD Patient Advocate Founding member of the International Adhesions Society