A warning to anyone worried about their child's growth

[user1473855260]

Hi
I'm wanted to share my experience with the NHS regarding child growth to avoid other families going through the same trauma.

Please ALWAYS ask to SEE the results of any tests. I mean actually see it on paper. I wish I had done this as the consequence of not doing so has been huge.

I won't go into details, but my child was monitored for many years, but as their growth remained just at the bottom of the excepted familial height, and the various base line tests showed no issues, we were discharged and advised it was due to familial short stature. I always felt they thought I was just an anxious mother, but they confidently explained that there was nothing to worry about. At this time bone age was reported as in line with actual age.

Fast forward several years of continuing growth and we were leading a normal life. But then growth appeared to come to a stop. In fact, on examination, bones were fused without reaching adult stature. No one could explain why this happened and why bones were 2 years advanced, so I bought the medical records. That's when I knew a grave mistake had been made, as bone age was reported as a year advanced before we were discharged. But we were told it was in line with actual age.

We have since been told the Doctors didn't realise one year advanced bone age on a child on the 0.4th centile was significant. I would like to think that no one else has to go through what we are going through. Not reaching adult stature is life changing, physically and mentally.

There are treatment options but you need to start before bones are fused.So please make sure you see those results for yourself.

[PotOfYoghurt]

I'm sorry for what's happened, and I have no experience to add but perhaps you would be best to get this moved to a different topic where more people will see it and learn from what's happened to your child, perhaps children's health?

If you report your own post you can ask MNHQ to move it.

[DawnMumsnet]

Hi there user1473855260,

And a warm welcome to Mumsnet.

Thanks for posting this thread. We're going to move it over to our Children's Health topic now.

We're really sorry to hear what your child is going through - hope you both have plenty of support.

[user1473855260]

Unfortunately there is no support. No one wants to get involved once a mistake is uncovered. You just get discharged and they want you to just go away. No explanation. No answers. No support. And total resistance to your concerns and questions.
The thing is, if your child is around the 0.4th centile and their bone age is at all advanced, even 6 months advanced, there's no chance of them reaching adult stature without treatment. And bone age can advance further without any outward signs. Only an xray can tell you if bone age is advanced, and if the clinician doesn't tell the parents, or worse still, tells you it's the same as actual age, you won't find out until growth ends and you won't be able to do anything. It's very important that any short child with advanced bone age gets specialist attention quickly.

[flutterby77]

How old is your child? And do you now have a diagnosis? It sounds like Russell Silver Syndrome which my son has although he is only 2. He is way under the normal percentiles though so his lack of growth is picked up and monitored by a growing group of specialists. Yes you are correct there are options for growth hormone therapy and delaying puberty to enable the child to reach a normal adult height. There are many support groups on Facebook and the child growth foundation who might be able to support you but if growth has now ceased I agree it is probably sadly too late to add any more height.

I am so sorry that this wasn't picked up and monitored earlier. If it is any comfort to you, since my son was diagnosed and I have realised that even with growth hormone treatment he may not be a tall man I spend a lot of time looking for short people in crowds. It's surprising how many people, men and women, are significantly shorter than me and I am not very tall.

[youcantgoback]

Thanks fluttery
My DC doesn't have a diagnosis although the doctors did suggest it could be Dwarfism And You Can Imagine how a young teenager would cope with that. After a lot of pushing, they agreed to do tests which were negative, but it all added to the stress for DC.
I really hope your DS gets all the help he needs to live a happy life.

Remember to check the bone age results yourself! If a child is on the 0.4centile, and bone age is one year advanced, take off 5 to 6 cm from the final point of the growth line and if it's 2 years, take 10 - 12 cm. That helps to get a true picture of the future.

[flutterby77]

My sons bone age is very delayed at the moment but it can advance rapidly as they approach puberty. Russell silver is a form of dwarfism but a treatable type, it's such a shame that it wasn't picked up in your child. It's child growth awareness week coming up and you are quite right that people should be very aware of their child and their growth potential and anything which affects it.

[youcantgoback]

My DC was just under the 0.4th, after the first year of being on the 50th, which is why I originally pushed to be referred.
DC was discharged about 2 years before puberty.
We were attending the Endocine clinic once or twice a year, sometimes more.
When we found out about them telling us the wrong bone age, they basically expelled us from their service stating there was nothing they can do now! I had to go private to get an explanation of what had gone wrong, by sharing DCs medical records.
It's caused so much mental damage and I don't know where it'll end but they say they don't offer services that can help. The door is firmly slammed!
It seems the most likely diagnosis is familial short stature with untreated advanced bone age. Lots of kids get treatment to slow bone age when normal statute is at risk, but we put our trust in the clinicians to give us the facts, truthfully and accurately.
That's why I feel an strong moral responsibility to try to inform others.