Son referred to GOSH, I'm scared! Any experiences to share please?

[confusedofengland]

DS2 is 10 & recently diagnosed with inattentive ADHD & autism suspected. We saw paediatrician in late July who diagnosed ADHD on the spot & he has medication (Xaggitin).

When we saw paediatrician she remarked he is very skinny & no muscle. She weighed him & he is underweight. He has always been skinny like his dad, who is 6'3" & 11 stone, at age 44, having recently gone up a clothes size.

Anyway, paediatrician referred him for blood tests. All came back clear except creatine kinase, which is slightly elevated- level of 406, she said normal is 40-320. She said cause for concern is usually thousands, but due to his build & muscle tone too, she wants GOSH to check him out to make sure all is ok. She said if he was sturdy she would not worry.

I have been googling & am absolutely petrifed! I keep coming up with Muscular Dystrophy & limited life span

Does anybody please have any knowledge or experience they can share? I can't stop thinking about it. Is there anything I can do?

For info, he eats very well & always has done. He has a good off switch & will stop eating when full. He has put on approx 2 kilos since July, bringing him close to 3rd centile weight & not technically underweight. He can swim & ride a bike, surprising everyone, but he is not strong in sports. Although PE teacher says coordination is improving & also listening skills & teamwork.

I don't know but he sounds similar to my son. Underweight due to hyperactivity, ASD causing sensory issues with food and undereating. He has a slim build and fast metabolism.

I'm not worried about my son and obviously if he was referred as yours is I would be panicked too I just want to say that because the doctor just because the doctor is being thorough doesn't mean your son is at risk. Better to check 100 children to catch one important medical condition than not.

My other daughter had a v minor health condition and it led to further investigations for very serious conditions. Ultimately all was well but it was a very scary time.

Take it easy.

That's the trouble Glogirl, my DS eats very well & is not fussy, so maybe that concerns them. Although he will not overeat & usually chooses healthy food over fatty food!

Glad to hear your daughter's issue was resolved.

I can understand your worry but step away from google and thank your lucky stars that you have an attentive doctor. It is probably nothing but they are double checking that is good. It’s better than anything missed.

Logically, I know you are right Mrs Pear, but it is easier said than done! Tbf we have always been lucky with the care & education for DS & have never had to fight for anything, so I am pleased we have such good support.

Just wanted to add as well that by being sent to GOSH you are on the gold standard Rolls Royce path to diagnosis so you are in the best place. Thank god you got that referral. Also wanted to add did you know if you get a black cab to GOSH London Taxi drivers have an agreement where your fare is waived - when my driver did that I went to pieces getting out of the car and didn't know what to do and my poor DD - the patient!! - had to help me calm down! I was so grateful for any kindness at that stage.

Also with regard to Google, this is a hospital where they are happy to answer any questions, nothing is considered too off the wall unlike other places where you are considering a poor parent for daring to use the bloody internet. So be reassured. Have they said how long the current waiting list is for your son's appointment?

Thank you Staplescorner, that is very reassuring. I hope your DD is well now.

We haven't been given any idea at all as to how long we will have to wait for his appointment.

Echoing what Staples says about GOSH. My child was in their adolescent and child mental health unit, Mildred Creek, for nearly ten months.

No other NHS service we have experienced has come anywhere near how they operate.

Not likely that your child will be needing residential care, but they are the best. I saw a lot of very poorly children going in and out of the main entrance and met others in other departments. All the parents I spoke to were happy with how their child was being treated.

My child got their ASD diagnosis there and was supported in other areas too. As a family we were supported too, and I think that's one area where they shine.

Hope you get seen soon, and have your mind put at rest.

PS, I had no idea about the black taxis! It cost us a lot with all the trips to and from GOSH. There's a fund called the Family Fund who do give grants to help but we ended up selling all our vinyl to cover costs as well. Our journey wasn't as bad as some people's. Just a heads up in case you end up doing a lot of travelling. Staff will tell you how to claim.

It's so good to hear another positive experience of GOSH. We have been incredibly lucky so far & not had to fight for any help or diagnosis at all, which I understand is rare.

I wonder if it's partly due to the prescription of stimulant medication for adhd causing loss of appetite and weight? My son is the same age and takes medikinet xl for inattentive adhd, the paediatrician is very thorough with checking growth and weight regularly so possibly they are double checking the medication is the right type for him? My friend's son was switched to a non stimulant medication when he experienced growth issues. (Apologies if your son's medication is non stimulant, I'm not familiar with that particular name,)

Slightly elevated creatine kinase can mean something very simply like a mild, unnoticible muscle injury or bruise...so do not start panicking! In diseases like DMD it's HUGELY instantly red flag level elevated!

My DD1 had raised levels a few times.. (also ADHD and ASD and on meds interestingly) at the same age. She was also incredibly skinny both before, and on, medication. Still is as an adult (still on meds) but quite healthy. They are simply being cautious, which is a good thing. Step away from Google :)

Thank you both, that's really reassuring. I don't think it is due to the meds as he hadn't started taking them at the time of the blood test. That said, they don't seem to be helping his attention much, so they may need reviewing.

He has always been skinny & is particularly so now. I had put it down to shooting up in height (5cm in a couple of months), but it might not be I suppose. In addition to DH being very slim, I was a skinny child, although not any more & I do think that contributes to it. Our 7-year old is a couple of CM shorter & almost the same weight, so we are not a heavy family.

I am trying to feed him up & he has put on 2kg in 3 months, I don't know if this is just standard gain or good. But he will reject unhealthy food & will stop eating if he's full - which I would think are good habits! He is not fussy at all, there are only about 5-10 foods he will not eat. The boy asked for snails for breakfast the other day (he has had them a couple of times & loves them)

Update: we have been given an appointment for mid-January. 90 mins physio followed by consultant.

I was expecting to wait a lot longer, so am trying to reassure myself that it is just efficient & not because he is deemed an urgent case 😬