Late walking and talking

[eslaymum]

Would just like to hear other mums advice & experiences with this,my daughter who is 2 at the end of March,is not yet walking or talking.She is seeing the hospital paed & having physio & speech & language therapy.She has progressed on the walking front & is now pulling herself up on the furniture & walking along,but cannot stand un-aided.No progress on the talikng though,which is a worry,she just grunts & points abit!!She is going for chromosomal abnormality bloods & a hip x-ray next week & if no improvement in 4 months,the paed said she will have to have an MRI scan at AlderHey.I am so worried,but she is a very bright girl otherwise(her social skills are spot on!!).Any other mums with this problem,I would love to hear from you,thanks!

[loggedout]

Good luck with paed, sounds like they're trying to eliminate poss causes.
Keep up the physio and SALT - there's lots of help on mn for those.
We found mri didn't help much as our child's eventual diagnosis was so rare that scan was not interpretable.

[TinySocks]

Agree with Fio, there is no point in waiting for 4 months. When I had concerns about my DS we were also told to wait 4 months to see how things developed (he was 10months at the time). I took him to my home country and the neurologist there told us that he needed a brain scan ASAP.
In our case the MRI scan clearly indicated the reason for his developmental delay. Sometimes the scan doesn't show any visible problems, sometimes it does.

It is great that her social skills are spot on, that is really wonderful. Are you happy with her SALT?

[Nat1H]

I agree with the others about pushing for the scan sooner. Why wait 4 months? Honestly these paeds have no idea about the worry that this sort of wait can cause for the parent
It's good that she's making progress though!

[slightlycrumpled]

eslaymum My DS2 was the same, he didn't walk untill he was two and hadn't been weight bearing for long at all before that. He also wasn't making any noise at all let alone speaking. Crying, laughing, occasional grunting was as far as he got.

He does have a chromosome abnormality and we didn't find out until he was 4. Push for all the tests now, it really is hard waiting for a diagnosis.

Good luck.

[vjg13]

I would also push for the tests. I found it easier when my daughter was little with hospital appointments especially for some of the blood tests and she will have less memory of them. The MRI for my daughter showed no abnormalities and did not help explain her delay but was useful to get out of the way.

Good luck to you and your little girl.

[bsac15]

Hi eslaymum!

My DD is 21mth, does not weight bear or crawl - she has hypotonia - low muscle tone - in her lower body and legs- so we see physios.

Awaiting SALT appt.

She does have a rare chromosome abnormality (established at 18mth) and they are saying this is the reason for her hypotonia, lack of speech and all the other little 'quirks' she has.

Very sociable, happy, cuddly little girl tho!

I agree with slightlycrumpled - PUSH FOR THOSE APPOINTMENTS!

Ring the docs secretary and see if the scan referral letter has been sent - if it hasn't, ask for it to be sent.
If it has, chase for an earlier appt.

Good luck.

[Phoenix4725]

intrestingw ehad none of these tets for ds at all he been given dx of GDD,MLD,SLINhypertonia and hypermolity last 2 have come from the physio and the SLi from salt but rest was devlopment paed ,I know and accept he does have these but no ones looked into the whys or wheres of it

[Phoenix4725]

oh ds did not walk to 21/.2 either and still has moblity issuesand is still non verbal at 3.8 but he is using his own form of makaton which i would recommend has given my Dsa voice

[Phoenix4725]

yep i did ask but was told finding outwhy would make no dieffrance to his treatment Like what treatmnent/therapy we dont get any or therapy other than 3 monthly reviews no excersises plns etc ohw edo get 6 weekly salt

Ds is number 4 inline

[anonandlikeit]

Hi Eslaysmum.
I would agee with the others & push for the tests sooner, my ds2 was/is very delayed & its good that they are giving your dd the therapy & support.
However as you have posted this on the sn board obviously we all have children with sn,but it could just be that your dd is late in walking & talking.. I'm sure that if you posted similar message on non sn board you would get plenty saying that their dc was equally late but fine now.
Not trying to be dismissive because I know how important the support on the sn board can be but just wanted to offer an alternative opinion if that makes sense.

[slightlycrumpled]

phoenix Ds wasn't tested untill he was 4 and I totally lost it with the GP who finally referred us to someone decent.

He had been tested for CF and duschennes muscular dystrophy as a baby but nothing since.

It was only when we saw the consultant instead of reg etc that we got somewhere. I was told that they hadn't thought of genetic screening earlier as he didn't have any major heart defects!

As is so often with our children it can often be just seeing the right doctor that makes all the difference. Our lives, (whilst still tricky somedays!) are immeasurably improved since diagnosis, if only because he is now the correct medication.

[goldenhair]

my dd is now 10y but she didn't walk until 21m or talk until 3y. she has hypermobility and didn't weight bear until about 18m.

She is very long sighted and had supra ventricular tachycardia as she had 2 pathways going into the lower ventricle of her heart. This has been corrected. We had no mri scans or blood tests etc at all.

We now struggle with her behaviour as she is extremely aggressive and we are doing cbt, yoga and a listening programme for sensory defensiveness. We are exhausted.

Otherwise she is very bright, active, normal sociable girl.

Has anyone else experienced this group of symptoms together and been given a diagnosis?

[Arabica]

Hi. I have a DD aged 2.7 with GDD. She has had 4 MRIs (including one when I was pregnant) and various genetic investigations but we haven't got a diagnosis. I think the reason we have had a lot of investigations is that we were in the system from before birthtoo much fluid was discovered on her brain, and that meant various tests needed doing to discover a cause (they didn't find onethe result of the MRIs has been, 'we can see stuff we can't explain but we don't know if it's of clinical significance)
Every child's GDD is different, but DD's gross motor skills are pretty good: she walked at 18 months, but is only now delighting us with the occasional word, and her cognitive skills are equally delayed. Push for portage if it is available in your area. They know everything (well, they do in my area!)

[Phoenix4725]

fio fio

no luckily I dont figure 4 done my bit for population.And ds needswas final straw to my marriage as well , but that wa sno bad thing .

yeah im hoping to drag more from devlopment paed am going ask forsecond opion,The hypermoblity im sure is Gentic as have older dc with it midly and i do to

[Phoenix4725]

eslaymum

have they talked about peidro boots these helped my ds a lot

[ilovesprouts]

hi my lb 27months has gdd he does not talk just mmm/ddd hes had all the basic blood tests and they are all fine we are waiting to see a gene doc 9months waiting list ?? he goes to cdu playgroup/portage once a week but i feel its not enough i have just got him in to my local pre nursery twice weekly he has sn (which i pay for)but portage pay for his one to one and hopefully he will get early entry to a sn school ,he has a pair of piedro boots wich help him as he can walk holing on things but not on his own but then he can get/stand up on his own so its just a case for me of whats next ?? in a way eslay im like you in your situation

[ilovesprouts]

ps forgot to add we asked about a mri scan and was told its not an option at the mo me and my dh would go private if we could afford

[Phoenix4725]

there is no places at the cdc here they only do assments and no portage in this area we do get 1-1 in ms nursery but its member of staff not specially trained in any areas not eveb in makaton.But onplus point everyone seems to be supporting our place forsn school for next year but will see what panel say