No matter how much your little one eats, does he/she say, "I'm not full, I want more?" Have you ever seen him/her constantly thinking about food, looking for food, and sometimes sneaking food when no one is around? This can be a big problem and a source of sadness for a mother or father who sees it. Most of the time, we think that this is a child's greed for food. But that's not always the case. The cause of this excessive hunger may be a rare genetic condition called Prader-Willi Syndrome . Today, we will talk about this, the excessive hunger that comes with it (`hyperphagia`), and its treatment in a simple and friendly way.
What is Prader-Willi Syndrome?
Simply put, Prader-Willi Syndrome is a rare genetic condition caused by a change in our DNA. Sometimes, it can also be caused by a severe head injury.
This condition mainly affects the hypothalamus, a part of our brain. Think of the hypothalamus as a switch in our body. When we eat and feel full, this part sends a signal to us that "Okay, enough is enough." But in the brain of someone with Prader-Willi Syndrome, this "switch" does not work properly. Therefore, no matter how much food they eat, they do not feel full.
This is why these children are always hungry. It's not their fault, nor is it greed. It's part of the disease itself.
Because of this constant hunger (`hyperphagia`), they are constantly looking for food.
- They eat much larger amounts of food than the average person.
- They hide food to eat later.
- In some extreme cases, you may be tempted to eat frozen food, perhaps even food from the trash.
If this condition is not controlled, the risk of developing obesity and other related health problems (such as diabetes and heart disease) is very high.
Is there a treatment for this extreme hunger?
Yes. There are medications that can help control this excessive hunger. Vykat XR (diazoxide choline) is one such medication. This medication works by affecting the hormones and neurotransmitters in our brain that control hunger and appetite, reducing that constant feeling of hunger.
But this is not a medicine that can be taken on a whim. This treatment should only be started under the supervision of a specialist.
How do you use this medicine?
This is usually a pill taken once a day. It can be taken with or without food. However , the tablet should be swallowed whole without breaking, crushing, or chewing.
Your doctor will start you on this medicine at a very low dose. Then, every two weeks, they will gradually increase the dose. This is called `titration.' This is done to find the maintenance dose that works for you and that best controls your symptoms. If you are unable to take the medicine for a week or more, your doctor may start you on a lower dose again and gradually increase it.
How do you know if the medicine is working?
As this medicine starts to work, you or your child will notice that things like constant food cravings, food cravings, and excessive hunger will gradually decrease. Since it takes some time for this medicine to take full effect, don't expect a big change in the first few weeks.
However, if your appetite is still not improving despite taking the medication, be sure to talk to your doctor about it. He or she may be able to stop the medication or suggest another treatment if necessary.
What are the most common side effects and what can be done about them?
Like any medication, it can cause side effects. But not everyone gets them. Let's look at the most common side effects and how to manage them.
| Side Effect | How to manage |
|---|---|
| Excessive body hair growth (hypertrichosis) | This is usually manageable. You can use hair removal methods if necessary. However, if it is too uncomfortable to control, talk to your doctor. |
| Swelling due to fluid accumulation in the body (edema) | If you experience symptoms such as swelling of the legs, ankles, or feet, or difficulty breathing , tell your doctor immediately . Your doctor may need to temporarily stop the medication, reduce the dose, or prescribe other medications, such as diuretics. |
| Increased blood sugar levels | This is something to be aware of. Your doctor will check your blood sugar levels regularly before you start taking the medication and while you are taking it. If necessary, you may be prescribed other medications to help control your blood sugar. |
| Skin Rash | Use unscented, mild soaps. If itching occurs, ointments may be applied as directed by a doctor. If the itching increases or does not subside, inform your doctor. |
Severe conditions that require special care!
We've been told that this medicine can cause high blood sugar levels. In rare cases, this can lead to a very dangerous condition called Diabetic Ketoacidosis (DKA) . This is when harmful substances called ketones build up in the blood because the body doesn't have enough insulin. This is a medical emergency.
Symptoms of high sugar levels:
- Feeling unusually thirsty
- Frequent urination
- Feeling hungrier than usual
- Unintentional weight loss
Warning signs of Diabetic Ketoacidosis (DKA):
- Nausea or vomiting
- Stomach ache
- Extreme fatigue or confusion
- Difficulty breathing
- Fruity smell on the breath
- Having very high blood sugar levels (e.g., greater than 300 mg/dL)
If you have any of these symptoms, see a doctor immediately without delay. Or, go to the Emergency Department (ETU) of the nearest hospital. This is very important.
Be aware of interactions with other medications.
Other medications you take can affect the way Vykat XR works. Some medications can increase the side effects of Vykat XR, while others can decrease its effectiveness.
Therefore, tell your doctor clearly about all the medicines you or your child are taking (including prescription medicines, over-the-counter medicines, vitamins, traditional medicines, herbal products). He or she will adjust the dosage or change the medicine if necessary. Do not start or stop any medicine without asking your doctor.
Take-Home Message
- Prader-Willi Syndrome is a rare genetic condition that causes a loss of the feeling of fullness.
- Understand that your child's excessive hunger and food seeking is not his or her fault, but a symptom of the disease itself.
- Medications like Vykat XR can control this excessive hunger, but it should always be done only under the supervision of a specialist .
- Always be aware of side effects, especially signs of high blood sugar. If you develop symptoms of Diabetic Ketoacidosis (DKA), go to a hospital's Emergency Department (ETU) immediately.
- It is very important to inform your doctor about all other medications and supplements you are taking.


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