Developmental Delays

[Hayley16]

Hi
My DD has alot of health problems and his development is getting quite behind and is really begining to get to me. All his problems are still being looked into and he is now 11 months and we are no closer to find out whats wrong with him.
He smiled when he was 6 weeks as an average baby would do but since then we have met no developmental milestones. He has never laughed or really made any sounds other than a cry or occasionally a screach. He has just began batting at toys but doesn't pick them up and play with them. When placed on his tummy he cant lift any of his weight up onto his arms and doesn't bare any weight on his legs when held.
Has anyone else had developmental delays with their children? Did they catch up eventually?

Hello Hayley, ds (nearly 10 months) is under investigation at the moment for developmental delays. He can't sit or roll, he can just lift himself up on his arms when on his tummy, and does bear weight on his legs. He has only recently started playing with toys, and does pass objects from hand to hand, but doesn't show much interest in them. We saw a physio and ot last week, who noticed that he has intermittent muscle stiffness and floppiness, he also has some jerky movements. He was first assessed at 7 months by our hv, and since then we just seem to be sent a new paed appointment every other week.

How is your dd at eating? ds was very slow to wean, and even now struggles with anything but puree, and then only small amounts, so he still has a lot of milk feeds (at least 2 a night).

I'm sorry that I can't offer any insight into your situation, but I wanted you to know that you are not alone. It is such a difficult thing to be going through, especially when you see other babies hitting milestones.

His eating is very bad. As a baby he would never drink his milk. He used to scream and i put it down to wind. At 8 week his weighed dropped off the percentiles and he started getting blood in his nappies. He got took into hospital where they told me he had a milk allergy. They changed his milk and he did stop crying on his bottles but still wouldn't really drink any so he was fed through a naso gastic tube for 5 months then had a gastrostomy when he was 7 months which he still has in now. Puree wises its quite hard. He doesn't really open his mouth for his food so is a bit of a struggle. Sometimes i feel like he doesn't understand whats happening even though we've been doing it for 5 months now.
He sees a physo every 2 weeks who is great and does reassure me he will catch up eventually. But like you say seeing other babies hitting their milestones and my baby so far behind makes it very tough.
As soon as my DS was born they told me he had low set ears which can lead to all sorts of problems and is being looked at by a genetics team. We did mention to them that we thought he was showing some signs of mild CP so they are going to do a mri scan to look further in to this

I'm sorry your thread disappeared of my Threads I'm On.

Goodness, it sounds as though you have been having such a hard time. Do you have any other dcs? I've found one of the strange things with ds is when I remember our dds at his age (they are 4 and 5), and just how different they were.

I ask about the feeding, because we saw a dietician a couple of weeks ago, who was talking about ds's lack of babbling, he makes more of a screechy, 'eeeeooooowwww' sound, I guess that not eating solids well is all tied up with developing the muscles to speak. That seems to be the trouble with delays, is the knock on effect.

It is good that the physio, seems to think he will catch up. Do you have a date for an MRI? can I ask what signs of cp he was showing? It has been mentioned with ds, but so far everything is a bit vague, and we are very early on in the journey towards any sort of diagnosis.

Hope you are feeling ok.

My dd has some development delays due to having a stroke before she was born. She has some slight brain damage shown on an mri but not enough for a CP dx. She also has some areas of low muscle tone/hypermobility and slightly increased tone which have affected her physical milestones. She is catching up slowly and is now 3 yrs old. She is walking, talking, climbing, running (of a fashion!) but just finds it all a bit harder than her peers.

If you do suspect any difficulties, OP I can really recommend the physio and also lots of swimming. I can sympathise with how hard it is when other babies the same age are meeting milestones - for me that was the hardest part. Every milestone is a real celebration for us!

my son whos 4.4 had dd/gdd he did not walk till 2,6m old hes has blood tests and mri so far nothings come to light hes also non verbal,some times you may never get a dx ive been doing this since he was 12m old :)

Hi OP.I have a dd with global developmental delay (delay in all areas) due to a brain malformation.I think that the best thing would be to see what the developmental paediatrician and other hcps say when you get fully assessed.They often use the terms developmental delay to cover a broad spectrum of issues and it is oftren a "catch all" term until you get a diagnosis.Hopefully when yuor dc has been seen the ball will start rolling and appropriate professionals will be referred to.You could also self refer to the marvellous portage.org.uk service if you are in England.Honestly I cannot praise these people enough.

Re catch up,sadly for dd she is always going to be delayed quite severely but is progressing in her own way all the time:)It is very difficult to predict what a child will be capable of,I never thought dd would walk but she has tho is a bit wobbly at times.Every child is so unique and there are such a huge range of delays and so on.

Good luck with your son,it is the horrible "in limbo" time waiting to be assessed that is extremely hard xxxx

best wishesxx

Hi Hazeyjane, i do have 1 dd. She has just turned 2 and i see such a big difference between how she was at his age and how he is. Sometimes that makes it harder because im always think what dd was doing and how ds should be doing it.
We have no date for MRI yet. Im hoping it will be sooner rather than later. The reasons i started to think ds had cp was because he holds his hands clenched in a fist and when you try to open them they are very stiff, he also always keeps his legs crossed and are fairly stiff to uncross. Also his inability to feed properly and his developmental delays. I did mention it to the phsyio bt she said she wasn't convinced it was cp bt genetics thort it cud be so will have to wait and see what they find out.
We got a letter thru from our genetics with all the details of our last meeting on it and it mentioned they had noticed ds had horizontal creases in his hands, which i was unaware what that meant so googled it (which is always the worst thing to do!) and i found a website with a list of syndromes associated with this and i came across something call Cri Du Chat syndrome and it had all of ds symptoms listed on there! We tried to contact genetics to see if he had been tested for this syndrome but they weren't there so are waiting for them to get back to us.
Has anyone mentioned doing any tests on your ds to look into weather he has cp?

Hi smashing time, very reassuring to hear your dd is doing so well after the bad start to life :) Its hearing things like that, that make me feel more positive for the future.

Hi ilovesprouts, you say ur son has dd/gdd, sorry if im being a bit stupid but what is that? Must be very hard with him being non verbal. Does he make any noises at all or is there no sounds? I have worried that my ds may never speak, sometimes i feel like he tries to but nothing comes out. We have speech & language coming out to us in a few weeks to hopefully give us some advice as to how to help him communicate.

Hi mavisenderby, our paediatrican mention the portage scheme to us and i did look on there website. What is it they actually do for you? Im glad your dd is progressing :)

hi its global development delay ,he manely babbles he may say the odd word but its very rare he does

Very hard when your dd is so little, Hayley. I have heard of Cri du chat, Jo Wiley ( the dj ) has a sister with it, I think she wrote a book about living with it.

Trying not to google is vary hard isn't it. i have to tell myself not to do it, otherwise I freak myself out with 'what ifs...'.

They have said that ds may have an MRI, depending on the outcome of a meeting that has been scheduled for June2nd, where we meet with his paeds, gp, hv and physio, who discuss what has arisen at all the appointments, and decide on the next step. In the meantime, I am mumsnetting and eating too much chocolate as a distraction!

Hope you are ok, and get some answers soon. x