Undiagnosed!

[LJ1981]

I am not sure what to say as have never really posted on a forum like this before...however I found myself reading a lot of message boards with the endless googling I have done over the last few months and realised I needed to 'talk' to others in a similar position so here I am!

A bit of background, I am mum to ds (8) and dd (14 months). Dshas no health/development issues. I was first aware that something wasn't right with dd at about 8 weeks. She didn't move her head to look at things or try to bat at objects etc. I didn't think too much of it at the time. I became concerned really at about 5 months when she was making no moves towards rolling and wasn't bearing weight on her legs. We first saw paediatrician at 7 months, and at 13 months she had an MRI scan, hip x ray, and genetic testing. The hip x ray was clear. The consultant said the MRI was 'essentially normal' but the radiologist noted "periventricular white matter hyperintensities extending into the optic radiations". I am a health professional myself working in neurological services so I am confused as this doesn't sound normal to me.

At 14 months my daughter is a happy sociable little girl but is still not moving around independently or weight bearing although she can sit. She is developmentally delayed in other areas too.

I find it very difficult to be around other children of a similar age if other parents comment on her abilities. I have also found the endless well meant, reassuring comments from family and friends upsetting. I worry about my daughters future and want her to be happy and not have a difficult life. I hope I can find some other like minded parents here who won't mind me saying it like it is, I am tired of pretending she and I are ok!

Hi.

I wonder if your daughter has been referred to Portage. We used to have weekly 1:1 sessions with a Portage worker and also attended a toddler group every week - I found it really helpful to chat to other parents of children with additional needs.

Does your daughter have a physio?

Have you come across SWAN (Syndromes without a name). They have quite an active Facebook group and regional groups who organise social events).

My son has global developmental delay but no cause has been identified for his delays. He makes continual progress but remains a long way behind his peers. I know what you mean about people's well intentioned comments. One of my main concerns about my son is his lack of growth (in height) and people are always saying to me 'hasn't he grown' and when I say he hasn't and it's being investigated they still maintain that he has (so presumably the medics and me have got it all wrong!)

Hi

Thanks for your reply...no portage in this area unfortunately but she does have a physio. I have found Swan on Facebook and it is useful so far. Glad to hear I am not the only one who finds others comments upsetting...saw a friend the other day who kept saying "at least she can..." and then referring to another friend's child who has much more severe difficulties, made me feel like a fraud!

How old is your son now...how do you deal with talking to friends about his difficulties?

He's 3 1/2 now. At fourteen months he wasn't weight bearing - just rolling and sitting. He had an explosion of learning at 20/21 months when he started crawling, cruising, took his first steps and used his first proper words. He has come along more slowly since then.

To be honest there are some friends/family who I've realised I can't really talk to about my boy. They mean well but they don't really get that it is okay for me sometimes feel down and wish that you could make your child's life easier. And yes a lot of sentences start 'at least....' or 'he's such a happy boy' (which I agree is the most important thing but doesn't mean I don't worry - especially whether or not he's still happy when he goes to school).

One of my best friends has form for this. When I told her that my Dad aged 60 had been diagnosed with terminal cancer she said 'at least you know that he is dying and you can say a proper goodbye'

I have a SWAN too who's 2 in the spring. 🤗

I found it very hard in her first year t0 stay in touch with my nct friends and their "normal" babies !

Hope you are OK

Dimples...I think people want to say the right thing and that leads them to say something positive, it is very difficult to grasp that just saying "that must be difficult" is ok!

Penguina thank you for replying-funnily I haven't found staying in touch with some of the nct friends difficult, perhaps because we were all at the same stage I felt they could empathise with worrying about development when they are so young. It is actually friends I have in relation to my older child, who have forgotten what this stage is like!

Is your lo still undergoing investigations or have you got to a point where you have been told you will never get a diagnosis?

Hi, I noticed something unusual about my Baby at three weeks old. Despite everyone telling me I was wrong. He started to have seizures when I introunced solid foods just around 6-8mths old. Despite endless assessments and tests, MRI at 15weeks old and EEG's, dietician for different milks etc, the Pediatrician could not find anything wrong. He was also meeting milestones but much later than his peers. At 8mths of age I realised he was waving hello or goodbye (he was my first child at the time, & I used to teach children.) As pre-school started he experienced S&L delay and had difficulty communicating with peers. I started to suspect Autism however EVERYONE told me I was wrong including his Nursery Nurses', my MIL (who was a SENCO, etc.) I pushed and pushed, started the ball rolling towards him having a SAP, (otherwise known as IEP,) changed his Nursery (as previous Nursery was now under new management but not as good as the old Manager.) The new Nursery kept up to date with his IEP's and through pushing through our own Private assessments, pushing the Pediatrician as well as our GP, we finally got a refural to CAMHS. We were on the waiting list for just over a year but finally my charming, gorgeous son has been diagnosed as Autistic with Sensory Processing Disorder and Dyspraxia! He is in mainstream School and they are FANTASTIC with him. I know my In-laws thought I was being "dramatic." (they have little resect for me unfortunately.) They still find it hard to accept even now that it's in black and white! They still expect us to attend huge family events, parties etc but it's difficult for my son in such a busy environment - it's not that the don't understand but they choose not to! However any advice I can offer is have you considered Dyspraxia? Push, push, push and follow your instinct despite the odds! You are fighting to get the best support for you child. Good luck and best of luck for the future. XX

sorry, "introduced" and "WASN'T waving goodbye/hello."

Also my friends, our families, Nursery staff just kept saying, "he's a Summer Birthday Boy." ARGH! I knew there was something else. I now have another son who has met all milestones before and right on time. He's very supportive of his older brother and tries to kiss and cuddle him but of course my older son finds this very difficult because he doesn't like to be kissed or cuddled by anyone apart from me. XX

I love my beautiful boys! You do have to push for a diagnosis though. It's exhausting at times.

You feel like no one believe's you or has faith in you and what you think.

Hi all.
Ds 13 months has gdd plus a handful of medial conditions.
The doctors are desperate to slap a lable on him. I personally don't care about a diagnosis. It doesn't change anything. We're having full genetic testing at the moment but I'm confident they won't find anything. The genetic Dr and neurologist told me as much.

Ive gone through alot of ups and down but I feel like I stay the most sain when I stop thinking about the future. Worry won't change anything. I concentrate on the small things. I ignore most of what people say as they don't know what it's like to have a disabled/sn child and if the boot was on the other foot I would probably be the one with my foot in my mouth.

My 19 month old son has been diagnosed with global developmental delay has low muscle tone and an above average head.
He started bum shuffling at 15ish months and has only started eating solids in the last month.
I can only honestly manage one baby group a week as my son is the only one not walking and doesn't talk point wave clap etc.
I have coffee usually with a few mums after the group but when I get home I find myself bursting into tears on and off for the rest of the day and it usally takes untill about Thursday when I can feel positive again.
The comments about him being adorable or happy and have you tried this are well meaning but do sting.
One women said to me recently leave him with me for a week I'll get him walking a talking?!

leave him with me for a week I'll get him walking a talking?!

What an actual twatt.

I know how you feel. I have ups and downs but sometimes just seeing another baby sat in a supermarket trolley (something my ds can't do) has me depressed and tearful for the rest of the day.