There is no scientific evidence that anyspecific diet improves the condition of people with Hunter syndrome. Such symptoms as diarrhea, alas, can not be mitigated by any diet for all patients with Hunter syndrome. However, some parents find that their child's specific diet may attenuate symptoms such as increased slizeobrazovanie, diarrhea or hyperactivity (the child is extremely mobile, restless). The point here is, most likely, in the individual and individual tolerance of certain products, and in no way associated with the manifestations of Hunter syndrome. However, it has been observed that the reduction in the consumption of milk and dairy products, and sugars, as well as to minimize the artificial food dyes and additives help some patients. This, too, is no surprise, because intolerance to dairy products is quite common among healthy people, the consumption of foods with a high content of artificial food additives and dyes to anyone else for the benefit did not go.
If you are planning any changes in the dietYour child, please consult with your doctor or nutritionist to make sure that the planned diet takes into account all the basic needs of the child. If your child's problems are expressed slightly, you can try to enter questionable foods one by one to check whether this product really is not suitable for your child.
It is important to note that there is nono diet that can prevent the accumulation of mucopolysaccharides. Thus, reducing sugar intake or other dietary components can not reduce their accumulation because mucopolysaccharides are not consumed by the body from the outside, they are produced by the body.
tube feeding diet
This method of feeding infants and adults, theyThey can not receive food in the usual way. Many people suffering from Hunter syndrome in the last stage of their disease have serious neurological and physiological problems that do not allow eating in the usual way. Chewing and swallowing occupy given them more and more difficult, the time required for eating can become unacceptable. If this happens, the patient may suffer from suffocation or speak with a gasp, as due to difficulty breathing or fluid power products can get into the lungs. Feeding through a tube may prevent weight loss and improve the quality of life of the patient Hunter syndrome and others.
The decision to move is very difficult to tube feedingand it should be done only after consultation with the pediatrician, geneticist, gastroenterologist and nutritionist. Controlling food intake, time of its adoption, change in weight, asthma attacks and episodes of pneumonia, experts make the conclusion about expediency of transition to tube feeding.
food can be obtained by tube feeding orthrough gastronomy tube (g-tube) or through eyunostomicheskuyu tube (J-tube). G-tube enters the stomach through a surgical opening in the abdominal wall. The tube of special form can be inserted through a procedure called endoscopic gastrostomy subcutaneous. J-tube can also be surgically inserted through the abdominal wall of the small intestine in a part called the jejunum. Overlooking the outside flexible silicone catheter clamped between serving food to prevent stomach contents leak. food supply via T-tube portions can be made at a certain time or slowly by gravity drip or via a special pump is fed for a few hours. Each of these methods has its advantages and disadvantages, so the decision should be made with your doctor, taking into account a number of factors. food supply through the J-tube must be continuous because the jejunum is sensitive to pressure.
The hole through which the tube is inserted,It called a stoma. It is a long healing after surgery. To avoid infection or irritation of the gastro-intestinal secretion will help correct hygiene area of the skin around the stoma. This site should be closed patch, which should change in a timely manner in order to remain dry. The skin around the stoma should remain clean. Swimming in water bodies should be avoided because of the likelihood of infection possible.
T-tube is fixed inside the abdomen viaa small balloon at the tip. Balloon can be destroyed or blown away, and the tube can fall out. It can be changed to an alternate, following the instructions given by your doctor. J-tube may be re-inserted by a doctor. In addition, the replacement of the tube may be required for blockages. Caring for the sick should have the appropriate kit and be ready for replacement procedures (for T-tubes) and cleaning the tubes in advance. If the patient uses the G-tube, there must be a special kit to replace the tube. Since this device is not sticking out, it is unlikely that it will fall. Stoma can be easily covered by clothing. A special connector allows you to delete all the G-tube feedings between meals.
After the decision to insert a tube doctor shouldx-rays of the gastrointestinal tract to determine as to which is better suited to the patient tube. the patient must be examined for gastro-esophageal reflux, because the use of T-tube may give complication. In this case, use is preferably J-tube. J-tube may be chosen, if there is a very poor motility of the intestinal wall. Since the tube mounting operation involves anesthesia, before it should consult with an anesthesiologist.
The optimal schedule of serving food allow a patientmaintain a healthy weight, make the process more comfortable feeding at a convenient time. Caring for patients should be regularly discussed with the patient's diet dietitian. Specially designed products for enteral nutrition Pediasure type, Resource, or Kindercal sufficient to meet the needs of most patients. Special additives can help with chronic diarrhea, which is very common in patients with all types of mucopolysaccharidosis.
A convenient patient posture is especially important when the probenutrition. At the uncomfortable position the patient may have discomfort or shortness of breath when eating. The patient should not sit too low, since it increases the burden on the stomach. If the patient is unable to maintain an upright position to host it is necessary to use a special chair.
If you have any difficulties it is important to startcontrol the amount of food consumed, and weight of the patient. This will help you choose the best method of serving food. The decision to go to tube feeding - is not easy, but for many patients it can help.