Are there any way restrictions of people with Hunter syndrome? This article will answer this question.
Content
Food
There is no scientific evidence that any specific diet improves the condition of people with Hunter syndrome. Such manifestations like diarrhea, alas, can not be mitigated with a diet for all patients with Hunter syndrome. However, some parents find that a certain diet of their child can weaken such manifestations as increased mucus formation, diarrhea or hyperactivity (the child is extremely motivated, restless). The point here is most likely in the individual characteristics of the body and individual tolerance of certain products, and is not associated with the manifestations of Hanter syndrome. However, it was noted that reducing the consumption of milk, dairy products and sugars, as well as minimizing food with artificial additives and dyes helps some patients. This is also not surprising, because the intolerance of dairy products is quite common among healthy people, and the consumption of products with a large content of artificial food additives and dyes has not yet benefited.
If you plan any changes in your child's diet, please consult your doctor or nutritionist to make sure that the planned diet takes into account all the basic needs of the child. If the problems of your child are expressed rapidly, you can try to enter dubious foods one by one to check whether this product is really not suitable for your child.
It is important to draw attention to that there is no diet that can prevent the accumulation of mucopolysaccharides. Thus, the reduction in the consumption of sugar or other dietary components cannot reduce their accumulation, because mucopolysaccharides are not consumed by the organism from the outside, they are produced by the organism themselves.
Proteid food
This is a method for feeding children and adults when they cannot receive food in the usual way. Many Hunter-suffering syndrome at the last stage of their illness have serious neurological and physiological problems that do not allow eating the usual way. Chewing and swallowing occupy is given to them everything is more complicated and more difficult, the time required for meals can become unacceptable. If this happens, the patient can suffer the suffocation or talk, because due to difficulty breathing, food or liquid can fall into the lungs. Feeding through the probe can prevent weight loss and improve the quality of life of the patient with Hunter syndrome and his surrounding.
The decision to switch to probe food is very difficult and must be done only after consulting with a pediatrician, genetic, a gastroenterologist and a nutritionist. Controlling food consumption, time of its adoption, weight changes, attacks of suffocation and episodes of pneumonia, experts will make a conclusion about the feasibility of transition to probe food.
Under the probation of food, food can be obtained or through a gastronomic tube (Mr.) or through the ejunomatic tube (J-tube). Mr tube enters the stomach through a surgical discovery in the abdominal wall. The special type tube can be inserted by means of a procedure called subcutaneous endoscopic gastrostomy. J-tube can also be inserted surgically through the abdominal wall in a part of a small intestine, called a cister. Fitting Flexible Silicone Catheter Between Food Feeds He clamped to prevent abdomen leakage. Food through a g-tube can be carried out by portions at a certain time or slowly sambeck, through a dropper or using a special pump is supplied within a few hours. Each of these methods has its advantages and disadvantages, so the decision must be taken by a doctor, taking into account the large number of factors. The supply of food through the J-tube must be continuous, since the integrity is sensitive to pressure.
A hole through which the tube is entered is called stoma. She can heal for a long time after surgery. Avoid infection or irritation from gastrointestinal secretion will help the right hygiene of the skin area around the stoma. This plot should be closed by a bandage that should change in a timely manner to stay dry. The skin around the stoma should remain clean. Swimming in water bodies should be excluded due to the probability of possible infection.
Mr. inside the abdomen is fixed using a small balloon on the tip. The balloon can collapse or blow up, and the tube can fall out. It can be changed on the spare, following the instructions given by your doctor. J-pipe can be re-inserted only by a doctor. In addition, the tube replacement may be required when casting. Caring for the sick should have the appropriate kit and be ready for replacement procedures (for M-tubes) and cleaning the tubes in advance. If the patient uses a M-tube, there must be a special kit for replacing the tube. Since this device does not stick out, it is unlikely that it will fall out. Stoma can be easily closed with clothing. A special connector allows you to completely remove the Mr. Between Food Fees.
After deciding to insert the doctor, the doctor should make the gastrointestinal tract x-ray to determine which tube is better suited to the patient. The patient must be examined for the gastrooforous reflux, because the use of a Mr tube can give a complication. In this case, the use of J tube will be preferable. J-tube can be selected in case there are very poor mobility of the intestinal walls. Since the operation of the tube installation is associated with anesthesia, you need consultation with anesthesiologist.
The optimal feeding schedule will allow the patient to maintain normal weight, make the feeding process more comfortable at a convenient time. Careful patients should be regularly discussing with a dietary diet of the patient. Specially designed products for probe food type PediaSure, Resource, or Kindercal are sufficient to meet the needs of most patients. Special additives can help with chronic diarrhea, which is very often found in patients with all types of mucopolisacharidosis.
The convenient pose of the patient is particularly important under probing. With an uncomfortable pose of the patient may have an unpleasant sensation or difficulty breathing when taking food. The patient should not sit too low, as the load on the belly increases. If the patient cannot maintain a vertical position, it is necessary to use a special chair for its placement.
In case of difficulty, it is important to start controlling the amount of food consumed and the patient weight. This will help choose the optimal food supply method. The decision to switch to probe food is not easy, but many patients can help it.
