Well..SALT has just told me Jack has GDD as well as severe epilepsy....nice of consultant to tell me!!!!!!!!!!!

[caitlinnjacksmummy]

Well first apppointment with SALT today and she was going thru letter Jack's consultant sent her and mentioned "Jack having Global Developmental Delay", I know he is behind developmentally...but kind of a shock, Jack still not sucking bottle or a cup, been more than 2 mnths, but I am managing to get correct amount of milk into him by squeezing teat into his mouth, but SALT never really had any great ideas about wat to do, she sed hiding it in food etc...which I know, but sed t try a sports bottle, he still sucks his dummy, but will not entertain a cup or bottle

[Ryobi]

bloody hell, she sounds great use

Hope you are okay x

[desperatehousewifetoo]

Was this salt supposed to be doing a feeding assessment? Did she not try out a few things with you?

If it was an appointment for communication it might be that she has no experience with feeding.

How disappointing for you after making the effort to attend.

[caitlinnjacksmummy]

Hey, I know, tell me about it, my day has just went from bad to worse, Jack had physio at house, first appointment, and wasn't good news , he is hypotonic, very low muscle tone, she told me not t expect Jack to walk by 2, and more realistic by 4 or 5, if at all, and that he will need a special buggy when he outgrows buggy, also talked about moving house, not in near future but if Jack cannot walk, cannot take it all in, am soo sad . But she sed Jack is very motivated and al signs are great, she sed he looks like he is crawling commando in slow motion, and that he is gorgeous, anyone have similar experience? Worried for his future,

[TotalChaos]

DS problems are pretty much language related so I haven't got relevant personal info, but how awful that you have had 2 such pessimistic appointments, and I bet noone ever thinks of what support you have after they leave after throwing their bombshells It is often said on here that it's very very hard for even the experts to predict how a very young child like your jack will get on, so these "doom and gloom" prognoses aren't set in stone, and hopefully your jack will confound them all.

[Ryobi]

They told me my child wouldnt walk either fwiw. They also had GDD/hypotonia/hypermobile joints. They walked at 2 albeit compromised but walking all the same

try not to read too much into it. Children do suprise even professionals x

[desperatehousewifetoo]

I agree with Totalchaos, it is very difficult to make accurate predictions - although I can't say I am a physio expert!

I think many professionals tend to err on the pessimistic side to try to make expectations realistic. Not sure if that helps parents or not.

I do remember (many years ago) when my parents were told that my brother may never learn to walk. They were devastated. But of course, he did walk and now takes part in disabled sports - trampolining, swimming, water skiiing.

I'm sure there are lots of other postive stories on here.

[ACL]

It sounds as if you need to have another chat with the consultant now that you have had these assessments to see if there is a cause to GDD issues. Are you due to see him soon? Do you know why he may have GDD? Could there be something in the family? My children and I have hypermobility - www.hypermobility.org - and were all floppy from the beginning. I used to feel down after physio visits as we often did not get many positive comments. Having two appointments on one day is very emotionally draining. It is great you are posting here - I wish I had known about this as I would have valued writing posts as you can feel on your own with it all. It is great news that he is commando crawling - that is fab!

[caitlinnjacksmummy]

Thanks everyone, I am soo upset, just can't take it all in.......in deep shock, all yr success stories are encouraging, and I really hope my wee Jack proves them wrong, he is my little hero, makes me soo proud to be his mummy

[caitlinnjacksmummy]

ACL Jack has brain damage, apparently his left and right temporal lobes malformed in first few weeks of pregnancy, causing the GDD, Epilepsy and Hypotonia, also have a dd, nearly 7, she is fine

[wrinklytum]

Hi Caitlin Jacks mummy,I am sorry you are going through this.I have 2 children,my first is 4 and totally NT My second has GDD and hypotonia,very limited speech,and delayed mobility.She bumshuffled at 15 months,crawled at 2 and recently has started very wobbly walking at 2.5 with aid of a frame.She cannot talk but we are learning Makaton signing,simple signs from c-beebies something special-she loves Mr Tumble !! She had her MRI on monday that showed her brain did not develop properly hence her delays.How old is your little boy?As others have said no one knows what your child may have the abiltiy to do,never give up hope.Do you have access to the portage service where you are ??They are truly fab.

Hugs,Wrinkly xxx

[ACL]

I am pleased you know the cause of Jack's GDD, Epilepsy and Hypotonia - some people never know the cause. It should also help the therapists in their planning - I am surprised that the physio was giving you so much varying info re future.

I was desperate to know how my floppy son would be but realised that we had to take one day at a time. I took on board the physio at home - exhausting to do but it really helped him develop. You can apply for DLA if you do physio at home.

Time was spent looking for suitable toys which would make therapy fun for us all.

I do know how it can feel after therapy appointments - quite an emotional rollercoaster - I used to feel down for a while - progress was slow but each little skill he learnt was great.

Do you see any other therapists? Are these your first therapy visits?

[caitlinnjacksmummy]

hey. Yeah first therapy visits...what is portage? No one has mentioned it.....and, he gets higher rate DLA and carers allowance, still reeling, the physio went into so much detail as I asked her her opinion , starting to wish I hadn't

[wrinklytum]

Hi cjm portage is early years intervention,therapy through play.I am crap at links but if you type it into google you will get the info.Our portage worker is fab,very helpful.DD started it at about 2.

Hope you are feeling better today xx

[wrinklytum]

Just ggogled and if you go on the portage websute and click on about us and scroll down there is a portage by region bit,if you click on your region it will give phone numbers .You can self refer your child.HTH

[caitlinnjacksmummy]

Hey, portage don't cover my area, I am in Scotland

[2loudboys]

Hi CJM - just wanted to let you know that my little big boy (now 8) has undx GDD with hyptonia & hypermobility of joints, no speech that is intelligible to anyone who doesn't know him well, behavioural issues etc etc. He had an MRI at 1 which showed no abnormality. He had portage and intermittent physio when little, and walked at 2.2. He pulled up to stand at about 17 months and started cruising soon after. But really he is the happiest, sunniest character, who manages to interact with people in spite of all his difficulties (and in spite of being pretty crap at Makaton because of fine motor issues). He is doing fine at mainstream school and has far more friends than I ever did at the same age . Your little boy WILL constantly surprise and delight you. And I have to say, that if you can get him into a swimming pool, it is the greatest exercise for hypotonic kids - improves their tone no end.