Waiting for a Growth and Development referral - feeling panicky...

[hazeyjane]

..Ds is 7 and a half months. He was born at 39 weeks, but it seems he was actually a few weeks premature. He was in SCBU for 8 days, with breathing difficulties.

Last week the HV did a Growth and Development assessment on him, and he came out as being at 6 months in 3 areas, 3 months in 4 areas and at the level of a 1 month old in active motor skills.

She has referred us to a paediatrician and a dietician (weaning also not going too well as he still seems to have the tongue thrust reflex).

I am just panicking as to what it all means, and can't stand the wait, even though I know it is probably going to be a long one. I know it is stupid to speculate, but I switch from thinking that it is nothing, just a lag in development, to worrying that this is the start of a long road of problems.

I'm not even sure why I started this thread, I have talked to friends about it, but no one I know has been through anything like this, so everyone seems a bit non plussed as to what to say.

Thankyou for listening

Thankyou so much for your reply Pixie. It sounds as though you have had a long journey with your dd. I am glad that she is doing so well.

It is good to hear that even with developmental delays that go on for a long time, children can still 'catch up'.

I am normally a very optimistic person, but I keep just thinking about it all in a very negative fashion. I think it is partly because, since ds was born, I haven't been able to shake of this feeling that something is wrong.

It is good to hear from someone who understands.

Hi hazey,
I'm pretty sure I have talked to you on here before as I have a dd who has mobility difficulties due to oxygen deprivation at birth. Sorry you are feeling so stressed - I can totally relate to the anxiety too

Like Pixie said, some babies just are behind others with milestones and they can catch up in time. I've had friends with babies who didn't make certain milestones like sitting unaided, crawling, talking etc but have absolutely no problems now.

Early physio could make a HUGE difference to your ds so is good if they can make appropriate referrals. My dd fought against all the odds to become mobile but got there in the end!

I hope you don't have to wait long to see the paed and that they can reassure you. It is hard with friends who have NT children - they mean well but is very hard for them to know what to say or what you might be going through. Hope all is well and do let us know how your ds is gets on

Thankyou Smashingtime, yes I remember your posts about your dd on another thread I started panicking about ds

If it was one area that ds was delayed in I probably wouldn't be so anxious. Dd2 didn't walk until she was 21 months, and although we saw a physio,I don't remember feeling this level of anxiety. But with ds it seems to be a whole package of delays, and I can see the look of concern on the hv's face.

I think doing something positive like physio would make a huge difference to me as well as ds. I hate this feeling of being in limbo.

My son was born full term, but at 8 weeks he was diagnosed with a large VSD (hole in the heart) which required him to have open heart surgery at 5 months old. Because he was so poorly for the first few months of his life, he couldn't put on any weight, had no energy etc, and at 5 months he was only 10lb. He was behind on all of his milestones, he never even tried to roll over which worried me no end! After his suregry he recovered well, but because of his chest scar, he still wasn't keen on tummy time, so he never crawled, and he just got further and further behind with everything. Eventually at about 15 months, he started bum shuffling, then at 23 months he finally startedpulling himself up. At 26 months he decided to get up and walk, but only after having physio and special boots made for him (he had bum shuffled for so long that his ankles hadn't developed properly). The doctors and physio have all said that while it will take him a while to catch up, by the time he goes to school he should have caught up with his peers completely. It is worrying, but as OP's have said, your DS will catch up eventually like mine is doing (albeit slowly), and the trick is to go with the flow, try not to stress too much, and to not compare your DS to other children. Easier said than done I know!

Thankyou, itstheyearzero, how terrifying for you and your ds, i can't imagine how scary the heart op must have been. Thankyou for sharing your experience with me. I am trying so hard not to get too stressed and to focus on having a lovely time with our dds (3 and 4), but I just feel distracted all the time and have become obsessed with checking the post!

It is hard not to compare with other children, I took ds to a baby massage class, where he was 2 or 3 months older than most of the children and twice the size, and was struck by how little he could do.

But he is the smiliest, happiest little boy, and he laughs all the time. I know that I need to focus on that, and enjoy him for who he is.

hazeyjane, as long as he is happy and healthy that's all that matters. He will catch up, in his own time, and by the time he is 2 or 3 you will have forgotten about all this and he will be running you ragged . Let us know how you get on with the paediatrican/dietician. x

Good luck. My twins were 8 weeks premature and were massively delayed. Took 2 years to catch up.

Just thought I would update you on how the hospital appointment went today.

The consultant was concerned about the big lag in some of ds's gross motor skills (mainly sitting and rolling), he had a stiffness in one of his legs and she was also concerned by the fact that he has episodes of 'blankness' (I kind of petit mal, I suppose), where he will slump and not blink, and that this is sometimes contrasted by a jerkiness in his movements.On the other hand she said he looked physically very well and there were no obvious signs of 'disablility'.

She was very good at answering my vast list of written down questions, the main one being about cerebral palsy, which my stepbrother has. She said it would be the obvious thing to look at, but that she feels if ds has got cp then it would be very much at the mild end of the spectrum.

She referred us on to a specialist paed, to look at her areas of concern, and has referred us for physio, to encourage ds in the areas where he is lagging. She also said that further down the line they may consider an mri scan, thyroid testing and chromosomal testing (I know nothing about any of these things, so am utterly freaked out by the idea).

It would have been nice to go in and be told that we were silly, overanxious parents, but we both have known that something is up, so I am glad that we are now on a path which will hopefully become clearer the further down it we go.

Sorry for babbly post, have had a glass of cheap sparkly wine!

Thanks again for holding my hand, whilst going through this.

Aww

Even if it is the worst case scenario and your lovely boy does have some disabilities he does sound like a star and he has the loveliest Mummy.

I agree the waiting is the worst part

dd has quite profound LD's.It was f*ing hard the diagnosis and waiting bit but I wouldn't be without her for all the tea in China:)

Thankyou so much MavisEndersby.

He is a lovely little boy, and dh and I feel truly blessed to have him in our lives. We thought we would never have children, so to have 3 (we have 4 and 5 year old dds as well)is a miracle to us!

I can't stop worrying about why this might have happened, and whether it is something I could have had control over. Did you know with your daughter? Did it seem important to you? I only ask this because when I mention it to people, they just say, it is not important. But it feels important to me, and I just wondered whether this is normal!

I am not good at waiting, but I think having the physio to focus on, will help.

Hazeyjane,
dd2 was born missing her left hand, and my first thought was what had I done/could I have prevented it.
It was important for me to know that it was "one of those things" that has no known cause and there was nothing I could have done to prevent it.

I agree though, the hardest thing was the waiting after we found out at the 20 week scan.

Hazey - thanks for updating us! Sounds like your ds will be in good hands and glad you will have referral for physio. Early physio can make all the difference

It is really hard not knowing the reasons 'why' he might be experiencing difficulties, but I'm sure it was a reason out of your control. I have similar thoughts myself so know it can be something to dwell on.

Hope your ds is doing well. I know nothing about thyroid or chromosome testing (they might on sn board) but my dd had an mri which wasn't a stressful experience and was helpful.