Will DS Ever Walk Or Talk?

[chinchi]

DS was born at 29+5 by emcs. After birth he was starved of oxygen for a short period of time, and as a result, a cyst formed on the right side of his brain, which overtime, has become the apparent cause of some developmental delays that DS is having.

DS who will be 2 next month, is still not walking. He has had AFOs since January and Piedro Boots since April. He was recently turned down for Botox injections as we were told that he could possibly correct the problem himself without the need for injections (he is able to put his right foot flat whilst standing holding on, but as soon as he cruises, both feet go up onto tip-toes.) The stiffness is predominant in his left calf, and although is able to put his foot in a 90 degree angle, the physio has noticed slightly more stiffness as he has grown taller. He is now also wearing night splints.

DS also had an appointment with a speech therapist back in June, and she said that his understanding is great, but I need to speak in simpler terms to him and use signing. He can say Daddy, and will say 'namnam' for food, but says very little else. He mimicks the sounds he hears for example when I talk to DH, DS will try to copy and raise and lower the tone of his voice almost like he is trying to speak like we do. We dont have a follow up appointment with SALT until September.

Cerebral palsy was mentioned by his paed at an appointment last year, but not mentioned again until I was asked what I told people was wrong with DS if they asked, at his consultation for botox. I told that doctor that my suspicions were CP, and he said that he would expect that to be the case.

DS is getting to that age now where people can often look and wonder why he isnt walking or talking, and its starting to worry me even more. IN every other aspect of play and development he is doing fine, but I cant help but worry.

Can anybody share experiences or advice? I would be very grateful.

Hello chinchi - sorry, i don't have experience of prem birth or CP but just wanted to say hi. My ds1 has Down Syndrome and was quite slow for a child with DS to walk - in fact he was 3 before he did, so my experience is that not walking at 2 isn't necessarily a sign of never walking. He had Piedro boots although now i can simply buy a shoe with sturdy back heel (he's 12). We had some basic physio tips but basically he walked when he was ready.
That's good news about the understanding - sounds very encouraging.
I'm sure you'll get more replies soon

Hi Chinchi, my Ds was born at 29+2 and has CP, we knew this was a possibility from very early on but it was only diagnosed officially after an MRI scan when he was 1. His was following a PVL (brain bleed).

Ds' language is quite good however I have always signed with him and really recommend that, Signalong is a really good method but any will do. DS's first spoken words were the ones he signed most frequently. At your next appt push for more SALT input, that frequency is really not enough. If the NHS won't provide it I would think about paying privately for it, I think it would be worth it, and more important (in my view) than paying for private physio.

On the walking side - well - DS is now 4.7 and in the last couple of months has taken his first unaided steps, he walked across his bedroom tonight! We have a long way to go and I think he will always need his wheelchair but he is making progress. At the moment most of his walking is done either with a Kaye walker or with tripod sticks. He is good at both and they are used at different times as they serve different purposes.

We have had 3 lots of Botox and each time has been a great success, the tightness will increase with during growth spurts so that is to be expected, ask again for Botox soon as keeping the feet down is so so so important! WE have day and night splints also and they do help. Botox only works with the physio to back it up so make sure that you have that in place.

I have lots more I could say but I'm not sure what would be helpful. We have had very good support here with physio, OT and Salt but we have still chosen to pay for extra physio ourselves.

I understand exactly where you are coming from and it can be so hard. Take care.

Hi chinchi, DS1 was born at 31w (now 3) and has diplegic cerebral palsy. He had AFOs from 19mo and piedros from Jan, and we were always told he might walk by 4 or 5, with a walker.

To our surprise and delight, he took his first unaided steps in Feb at 2y 9 mo and now 5 months later, he is able to walk fairly steadily and even walks the 1/4 mile to and from nursery with me! He's still quite non-verbal but is starting to do directed babble so we're pretty hopeful for his speech too.

Chinchi, I'm a SALT.
What you say about your ds's pre-verbal skills sounds great. Noone can predict whether a child will talk. However you can and should be doing a great deal yourself to facilitate understanding and expression. You also need to know that due to scarcity of SALT, it is highly unlikely that on NHS you will get more than a skeleton service.

The best chance you can give your ds is to get active. First port of call should be Makaton websitee. Read it carefully and I suggest buying some of the music and singing dvds. Do you watch CBeebies and the 'Something Special' segment where Makaton is used? If not, start asap.It's excellent. Also great fun.

Chinchi

I can honestly recommend makton it has given ds a voice and saved a lot of frustration as he can make him self understood..

Know what you mean about people notcing till now ds has used a sn pushchair aand small enough to look like atoddler dnd he just got a wheelchair and all of a suddern people are realising he has a problem ,But he loves not being a baby

Ds has GDd hypertonia and hypermobile.He did not walk till he was almost 3 and i had lots of doubts that he would evenDrsthought not but remember ds dont read the books

hi chinchi
My ds2 was born at 28wks & hoas mild CP (Spastci diplega) and autism.

He was late with all his physical milestones, only just rolling over at 1yr etc at 2.5 when he started playschool not talking at all.

It is impossible to say if your ds2 will walk or talk BUT he sounds from the brief discription as if he is doing very well.

My ds2 (6) does now walk very well & talk but at 2 he was very mucha s you describe, up on tip toes but weight baring, ds2 wears DAFO's but has had pedro's & splints of varying types.
Over time his foot position has improved he has more stiffness in his left leg but his right leg is the weaker.
Not really telling you much in all this waffle am I except to share my experience of ds2.

Thankyou for your replies.

When we went for his botox consultation, the new paed was going to push for an MRI scan, and told us that although DS didnt look like he needed botox just yet, they would review in 3 months.

We have an appointment as CDU on Tuesday, and I feel I should have 1001 questions to ask them, yet don't really know what, and I dont want to come away wishing I had the answers when I hadnt asked!

I feel as though I am trying so much with DS, and although he has the determination to want to walk, its almost like he thinks 'well I can get around by crawling, so why bother walking'.

The novelty has worn off with his Kaye walker, and he loves his VTech walker, but tends to push it around whilst on his knees.

HairyMaclary- could you please give me a little more information about the extra physio you pay for? Your situation seems very similar to ours.

Hi Chinci, just briefly as I must go to bed but we go regularly (3 times a year) to Footsteps. It is sometimes hard to tell how much extra they have given him but it's definitely worth the time and money for us. It is very expensive, and may not be practical at all depending on where you live, but I think it's worth knowing about.

Will probably be around more on Monday but not tomorrow and can answer any more questions.

HTH

chinchi I know it sounds twee, but try not to worry, one day your DS will just decide and start actively trying to walk. With our DS, it was the birth of his little brother that got him going (possibly to get more attention?) but it will happen.

We actually refused an MRI with DS1 as DH doesn't want him under GA and we didn't want to be told for sure what he wouldn't be able to do, as we can encourage him better when we don't know the outcome IYSWIM?

Thanks HairyMaclary. Will take a look at the link.

Laumiere- I can completely agree about wanting to copy younger siblings. I have a 7 month old DD who has this week, started pulling to standing. This in turn has seen DS increase his want of someone holding onto his hands from behind whilst he tries to walk Just hope he carries on this way!

I understand your reasons against the MRI too. I guess that being in the dark sometimes has its advantages.

Been trying to think of things I should be asking at the CDU appointment on Tuesday, but my mind is a blank

It is true about the motivation but it is in our case we have found it necessary to get and keep DS in a physical situation where walking was a possibility and then wait for the motivation to come. Both needed active encouragement from me. In fact Ds took his first steps after I told him about HBOB's DD who was very like him and had managed to take some steps by herself. He listened but showed no signs of wanting to do anything and then 2 days later said I can walk by myself like that other girl and did it! However he needed the splints, botox, and physio to get his feet flat enough and legs loose enough to make that a possibility.
My DS2 is 2 years younger and his development in gross motor skills was so far ahead of DS1's that there was no comparison and no intermediate steps for DS1 to copy.

I should point out though that DS1's problem is hypotonia, rather than hypertonia, so a lot of our work is strengthening. We might need to consider Botox in the future to keep his hamstrings loose as he's going to be tall like his dad!

After almost 2 years of uncertainty regarding DS and his development, we were finally given a diagnosis today of cerebral palsy.

Although it was expected, it is still a shock. When we arrived at the CDU, he happily set about playing with his physio whilst I sat and chatted to the paediatric specialist at the centre. She pulled out a booklet about cerebral palsy before she even said anything about it, and looking at it there in front of me knocked me for six.

All throughout the meeting I just wanted to burst into tears. Silly really, as we knew all along that the muscle stiffness would be named as CP, yet having someone telling you that after having glimmers of hope that his problems may just one day disappear, really did shake me up.

I was given lots of information regarding help we may be entitled to, and have an appointment to see his consultant on DS's 2nd birthday. He will discuss having a MRI scan (although it technically wont change anything, we will at least have an idea of what happened at birth).

I have texted family and friends and told them, and I want everyone to still treat DS as they always have. He is still the same gorgeous, charming, determined little boy today as he was yesterday or last week.

The physio was very impressed with how the splints have been helping, as he managed to put all his weight onto his left leg and get his left foot flat with minimal fuss. She thinks a lot of his tip-toeing boils down to habit, because as soon as DS realised he was weight bearing on his left side, his rose up again onto his toes.

So, next steps. A hearing test on the 12th to rule out any problems that may be affecting his speech. Consultant appointment on 27th to discuss his progress over the past few months and to arrange a MRI. He will have another eye test in September just to double check that there isnt a squint in his left eye, as he wasnt very co-operative at the last appointment! Finally another appointment with the speech therapist to again check progress.

Ill do whatever I can to help my little man. Im in shock, but determined to fight on for him. Oh bugger... Im now in tears

(hugs chinchi) Oh hon, I've been there. Give yourself some time to get used to this, and I can tell you the things that got me and DH through:

1. CP is non-progreesive so your DS will always be able to do what he can do now.

1. Just because it's a lifelong condition doesn't mean it's limiting, a squint is lifelong if you think about it.

You do need to ring the DWP right away though and explain you have a DX, when they calculate your Disability Living Allowance they can back-date.

Hi Chinchi, I remember that feeling, you are spot on, he is that same little boy!
At least now physio, OT etc will be able to put together a long term treatment plan rather than just plodding on with a short term view which can sometimes be the case without a dx.

Take care of yourself it is normal to feel as you do. x

Thankyou

Although I am shocked, I cant let it get to me, as if we hadnt have had the diagnosis today, he would still be doing the things he is doing now, next week and the week after!

We have already been claiming for DLA and were awarded the lower care component. Would it be worth phoning them to update them on the situation?

Despite only being told this afternoon, I have already had some questions from friends, not necessarily upsetting, but maybe ignorant- if that is the right word. Part of me wonders that if I hadnt have told them about the dx, would they think any different about DS? Why should a 'label' change anything?

I have been waffling alot this evening, so Im sorry if not of that makes sense!

I would push for at least middle level care (we get this for DS) I think they put everyone on low to start with!

we get high mobility, mid rate care.