Faqs

 Growth Disorder
 
 
 Thyroid Gland Disorder
 
 
  Noonan Syndrome
     
 
 Turner's Syndrome
     
 
 Puberty
   
 
 Childhood Obesity
     
 
 Vitamin D
     
 
 Diabetes
     
 
 Polycystic Ovarian Syndrome
     
 

Diabetes Insipidus

Q1. Is diabetes insipidus permanent?
A. Yes, almost always. However, in rare cases, following operations at the base of the brain, diabetes insipidus may develop which is only temporary.

Q2. Are any special precautions needed for travel?
A. When traveling to a hot climate, extra fluid intake will be needed due to extra loss of fluid as sweat. Your specialist will need to advise you about this. Usually your normal dose of vasopressin will be sufficient. If you are in a hot climate you will need to store your drops or spray in a cool place (but not in direct contact with ice as it shouldn’t be frozen). If you don’t have a cool bag, don’t worry. Try wrapping the bottle in wet toilet paper and keep it in a plastic bag. Vasopressin tablets can be kept at room temperature.

Q3. Will any adverse effects occur if I leave the medication out of the fridge?
A. Intranasal drops and sprays need to be refrigerated. If they are left out for a long time, they may become less effective and a larger dose of vasopressin would therefore the required to achieve the usual effect. Tablets of vasopressin do not require special storage requirements.

Q4. Are there any adverse effects of drinking alcohol?
A. Normally, there is an interaction with alcohol which reduces vasopressin secretion so in individuals with partial diabetes insipidus there may be the need for additional treatment. In patients who are deficient in their own vasopressin there will obviously be no interaction. However, drinking large quantities of fluid, even in the form of alcohol, after taking vasopressin could lead to the risk of water overload.

Q5. What happens if don’t feel thirsty?
A. If you have the problem whereby you lack the sense of thirst, please read the section on page 10. However, if you are unwell and have difficulty taking fluids or solids then you should seek medical advise as temporary inpatient care may be necessary. In addition, in very hot weather, heat stroke can lead to sleepiness and a reduced thirst. Particular precautions will therefore be needed.

Q6. What happens if I miss a dose or the does not get absorbed?
A. If this happens you will notice that you start passing a lot of urine and getting thirsty at a time when the vasopressin treatment would normally be working. If this occurs within 2 hours of the time when you normally take the dose, and you are pretty sure that you’ve missed it or something was wrong with the administration, then it is safe to take half the dose again. If, however, several hours have elapsed, it is probably safer to drink yourself out of trouble. Take a jug of water and keep up with the fluid losses until you would normally take your next dose.

Q7. Is it dangerous to take too much vasopressin treatment?
A. Yes, This will cause the retention of too much fluid in the body and will result in an increase in weight, swelling or puffiness of the limbs, and increase in blood pressure and headaches. The increased fluid retention causes a lower concentration of substances in the blood. Hyponatraemia, or low blood sodium, may result in fits. This can be a serious condition and generally it is safer to give too little vasopressin than too much.

Q8. Is it important that I carry notification about my condition?
A. Yes, An older child or adolescent will need to have an SOS Talisman or Medic Alert necklace or bracelet. Details about these are available from the Child Growth Foundation.

Q9. If I have a cold, will this affect my treatment?
A. It may do if your vasopressin treatment is by intranasal spray or drops. If only one nostril is blocked, the other one will be adequate for treatment. If, however, you nose is totally blocked, you may not absorb enough medicine and you will need to consult your doctor. In these circumstances, it may be necessary to change your treatment to tablets, however, such a change will need careful monitoring of fluid balance.

Q10. What extra care will be needed if my child develops diarrhea and vomiting?
A. In young children, diarrhea and vomiting can very easily upset their fluid balance and this may require special precautions and, possibly, admission to hospital to make sure their fluid balance is adequately controlled. If you have any doubts with a young child, you should take them to the nearest Accident and Emergency Department Explaining the situation and asking to see a doctor immediately.

Q11. Do all my child’s school teachers need to be told about his/her condition?
A. Yes, Each teacher who sees your child needs to be informed and told that you child needs free access to both drinks and the toilet, even during examinations. Children with diabetes insipidus cannot hold their urine for long when they want to go to the toilet. If teachers ask the child to wait for a convenient time, it can cause the child great discomfort as well as embarrassment if they wet themselves.

Q12. I am deficient in other pituitary hormones (hypopituitary or multiple pituitary hormone deficient (MPHD)). Can this affect diabetes insipidus?
A. Yes, if in addition to your vasopressin insufficiency you have cortisol insufficiency as a result of your adrenocorticotrophic hormone (ACTH) insufficiency. Cortisol is important in enabling the kidneys to excrete large volumes of fluid in the urine. Thus, when you start receiving cortisol replacement treatment, this may unmask your diabetes insipidus because you start excreting the large quantities of urine associated with this diagnosis.

 

Puberty

Q1. Is there anything wrong with me?
A. Constitutional delay of growth and puberty is a condition and not a disease. The body clock has slowed down physical development and maturity is delayed. If no treatment is offered then puberty will progress normally, it will just occur at a much later age than average.

Q2. Do I need treatment?
A. This depends very much on the individual adolescent. Some are severely affected by their relative short stature and delayed sexual development. If the adolescent is experiencing psychological difficulties, particularly if they are being constantly teased and physically bullied, then treatment should be offered. However, the decision to accept any treatment should be discussed openly between the specialist, the adolescent, and his/her parents.

Q3. Will I grow up to be as tall as my friends?
A. Yes, with or without treatment. In constitutional delay, the timing of your growth spurt will be extremely delayed. Although you will reach a height appropriate for your parents heights, it will take longer than in your friends. Indeed, you may be growing until your early twenties. Your specialist when he/she has seen the X-ray of your hand and wrist, will be able to tell you how tall you should become. Whether treatment is accepted or not will probably make no difference to your final adult height.

Q4. Why has this happened?
A. Remember there is nothing medically wrong with you. It is just unlucky that the start of your puberty has been delayed and will commence at a later age than in most of your friends. The condition tends to run in families and it is likely that your parents had constitutional delay when they were young. However they may have forgotten this! There is nothing that you could have done to change your body’s “time clock” for starting puberty.

Q5. Are there any side effects from treatment?
A. Both anabolic steroids and testosterone have been used for more than 40 years for the treatment of constitutional delay of growth and puberty. This experience has shown that there are very few side effects. Of course, you may experience mood swings, behaviour changes and minor acne – but this is more a complication of the start of the adolescent years rather than the result of treatment.

Q6. Will I have normal sexual function?
A. Yes, It is just that reaching adult sexual maturation may take a little longer than in most of your friends. In constitutional delay of growth and puberty, your sexual drive, sexual function and fertility should be entirely normal once you have matured.

Q7. Will treatment alter my final height?
A. No. Your final height will be neither increased nor decreased. It is just that you will be able to achieve your final height with treatment at an earlier age than if your had received no treatment. In other words, it should keep you in step with your friends.

Q8. After the start of treatment, what changes will I see and how soon will they occur?
A. You will notice that you have started growing faster within a few months of starting treatment. In addition, with testosterone treatment, your penis will grow and you may have more frequent morning erections

 

Hypothyroidism

Q1. Did I do something wrong in my pregnancy which resulted in my baby having congenital hypothyroidism?
A The answer is most certainly NO. In the vast majority of cases, no cause can be identified and no link has been found with drugs, smoking or any particular toods.

Q2. I am worried that I might miss giving my baby a dose of thyroxine. Would this mattle?
A. Fortunately, thyroxine lasts in the body for quite some time and so even if a day’s dose is missed, your child will still benefit from the previous day’s dose. Clearly it is important to maintain a regular daily treatment and it will certainly matter if several days are missed.

Q3. Are there any side effects of thyroxine treatment?
A. No. Thyroxine is identical to the natural hormone produced by the thyroid gland and is a relatively simple chemical substance. It is really a replacement hormone treatment rather than a drug, so any side effects only occur if the dose is wrong. If too much thyroxine is given, symptoms of hyperthyroidism will occur. If not enough is given, the hypothyroid symptoms will return. Thyroxine tablets can be stored at room temperature, last a long time, and are widely available throughout the world.

Q4. What is the risk of having other children with hypothyroidism?
A. In the commonest form of hypothyroidism, i.e. when the gland has not developed properly, the risk of having another affected child is small, perhaps about 1 in 100. When the cause of hypothyroidism is due to a block in the production of the hormone, rather that normal development of the gland, the risk of having an affected child is much higher and is usually 1 in 4 in each pregnancy, with boys and girls equally affected. The late onset from of hypothyroidism also has an increase risk of brothers, sisters and other relatives having thyroid problems.

Q5. If my child is at risk of developing hypothyroidism, for instance they have Turner or Down’s syndrome, how often should they have a blood test?
A. Probably every one to two years, but your specialist will advise you on this.

Q6. How long will treatment last for?
A. We must assume that the treatment is for life as the thyroid gland will not grow again or recover, but the treatment is easy and well tolerated. White temporary or transient hypothyroidism does exist, it is uncommon, and most children will need to continue on thyroxine through adulthood. The dose will need to be increased to match their growth, but by the time adult life is reached the dose usually remains stable with the need for only an occasional blood test.