Predicting Problems With Writing

[boolifooli]

DS has just turned 3 and has ataxia. His Physio. said that sometimes children with ataxia can take longer to pick up writing. DS holds a pencil with the tripod grip and can use scissors, he can draw small circles and lines. Is there anyway that even with this ability established that he will go on to have difficulties when forming letters?

Not sure. DD1's OT has said that they are trying to educate schools in general to focus on gross motor skills for children struggling with writing, because until gross motor is developed, fine motor skills will lag.

DD1 is 3.9, and as yet can only draw vague circles, not lines yet. At her last paed appointment her paed said she has an ataxic gait. I think it is going to be quite some time before she can write.

it sounds pretty promising to me if he already has a good tripod grip, and is doing small circles and lines. my ds has had difficulties but he still struggles with tripod grip at 7.

I agree with lou though, gross motor is really important for fine motor too. We started out with working on gross motor skills before pushing ds with fine motor and it really helped a lot.

I do remember dd3's teacher saying that the best thing a parent can do to help their kids get ready for writing, particulary boys, is to get them down the park as much as possible.

Sounds like he is doing really well drawing circles and lines and using sissors - my nt ds couldn't hold a pen or use sissors when he started school!
I guess it is about having the right pressure to form letters but like I say, many nt children struggle with this initially. Like pp said gross motor skills have to be in order first to develop fine motor skills.
I know dd will have problems with writing as she's still clutching her pen and has damage to her basal ganglia which apprently usually means problems with fine motor skills....

sounds brill so far - dd2 is 6 and is likely to be a keyboard user (also basal ganglia damage - athetoid cp and ataxia) but is trying enormously hard with pencil work at the moment.

a tripod grip and able to make purposive marks, use scissors etc is really very good at just 3 - not sure what the 'developmet rules' say lol, but most of the nt classmates in dd2's reception class last year were at that point!

i tend to take most of what profs say with a pinch of salt tbh. according to various professionals, dd2 should neither walk nor talk (she does both), and our newest gp thinks that she might 'grow out' of her brain damage in her teens.

he sounds as though he's doing great - and you sound as though you are doing your best to give him all the opportunities he needs to keep on developing and learning/ practising new skills.

Madwoman is right... take it all with a pinch of salt but don't 'switch off' the support right away. Fine motor and gross motor are very different but it is vital that all professional involved with your child have a wide scope lens on when they decide what is and what is not NT... therefore they NEED to spend time with many children, not just the special ones... I see this as a huge downfall within my field learning support) and can often skew what we think.

Madwoman - I'm really interested to hear that your new gp thinks your dd might 'grow out' of her brain damage. I read a study which said something like 50% of children diagnosed with CP in the first few years have no signs of it by age 8....this keeps me going in my darkest moments but I have never heard of it happening to anyone directly!

My ds had ataxia, so when I found out that there is a research that gluten-free diet could help, we went on the diet and the balance/neurology has thankfully reversed. Some ataxias are linked to nutrient deficiencies (like vit E or D) others could be to do with physical brain damage.
(Agree with lou on motor skills.)

Just curious what type of ataxia do your dc have and what have you tried so far?

Hi all

DS developed typiclly until summer last year when he went from being able to run to not even being able to walk. CT scans, blood tests and numerous appointments with a pediatric neurologist at Addenbrookes later and he was diagnosed with Cerebellitis. Basically a virus that he had in the summer had travelled up his spinal column and rested in his cerebellum. The body then attacked the virus which caused inflammation. He didn't walk at all for 3.5 months. He is now walking but he resembles a child who has been walking for a few months, which I guess he has in a way. He is about to have a block of physio and is getting special shoes to help improve his gait.

He is actually about to have a gluten intolerance test but that's down to him falling of the height chart. Hubby thinks it might come back positive and that his walking may improve on a GF diet but I'm not convinced because he had no problems with ataxia before although it doesn't always affect coordination does it. Anyways, will find out soon!

booli, i don't know anything about cerebellitis (hope you don't mind me asking) - does it leave long term damage, or is it a case of re-teaching/ learning the skills again, and then hopefully the delays gradually reducing? or does the inflammation cause permanent damage, and the ataxia/ delays will be ongoing? it must have been really scary for you last summer...

scottie, i think dd2's new gp is nuts tbh . she's 6 now, and whilst she is doing lots of stuff that we were told wouldn't happen, i think the chances of a 'cure' (lol) are fairly remote (she's a wheelchair user for distance and stability, piedros for balance, statemented for 1-1, squint etc. she's blardy marvellous, but she definitely has cp lol ). she had a repeat mri a year and a half ago, and the areas of damage are very obvious (the neuro is really very pleased with how able she is, but pragmatic about how it affects her).

i do know that with children who are dx very young, there is a really good chance that some of the damage can be 're-wired' (technical term lol) and certainly lots of dd2's initial problems are a thousand times better. looking at the darkest days of special care and the oxygen and transfers for more tests etc, i can honestly say that i saw no chance of ballet lessons or skiing on the horizon. these days she e-mails her auntie, and winks at her teacher (i saw her do it this morning, minx). so, i try to maintain the 'you just never know' line, as there just is really no way of knowing the extent of any child's future capabilities. i'd love to know which study you read, though. it sounds v interesting, and i do like to keep on top of what's out there!

Your neuro is very on the ball booli, we didn't get the gluten test for 10 years as everybody we met till then had said there was no point as no hope. I now know they were wrong, they probably still think that as I haven't gone back to educate them all (exc our dear paed who never gave up on us).
I'd love to hear your result re: gluten.

Hi Mad. You know what Drs are like, they don't like to make concrete predictions but the general concensus is that he 'should' make a 'good' recovery.

His physio says from looking at him and the history that he will be able to run again one day but will not be the most athletic of people. But it's so difficult to know what she means until we are 'there'.

Having done extensive Googling myself his chances are good, there are some children that haven't even recovered as well as he has so far, and then there are some that have recovered completely in a matter of months so he is definitely one of those who have and are experiencing a much longer recovery.

His problems are undoubtedly partly down to confidence too. It was clearly very upsetting for him to go from being able to run to having his legs not do what they should in a matter of weeks. Progress is frustratingly slow but it's progress all the same.

And yes last year was very bleak, even when the Docs kept saying they'd ruled this and that out it wasn't until he took some steps again that I dared to believe that what he had wasn't something that he would die from in the near future. I now know what fear is.

Nightcat - It's the general pediatric consultant at my local hospital that has ordered the gluten test due to DS falling off the chart. I did mention the link between ataxia and Gluten to him after he mentioned the gluten related growth problem but he seemed sure DS's ataxia unrelated to diet. Yes I'm keen to get the results back, but am dreading the blood tests. My boy has had about 6 in the last 12 months

Booli, for us the standard gluten antibodies test was negative because we went gluten free a week before it was offered. I would have been still fumbling in the dark, but when he improved on the diet, we begged for a specialist genetic test (also blood) to see whether he had celiac or gluten-sensitive gene - turned out gluten-sensitive. This explained his improvement on the diet.
You said your ds had a virus, was it not long after any jabs? MMR? I have read that some children react like this after a jab.
A few years later my ds had electronic test that picked up that he had active measles virus in the system and I do recall him being very ill with very high temp and hallucinations within a month or so of the jab, then it all started with ear infections and he was poorly for ages although walking was not as severely affected as your ds.

What made me think his ill spell was possibly linked to the jab was when I became ill after my flu jab a few years ago and I am still suffering from after effects (ears).

So, even if the blood test your ds has proves inconclusive (they told me that celiac test can be negative/inconclusive in children anyway), don't give up the idea that going gluten-free can help - it has worked for us.

Hi nightcat. I think he had a jab about a year before his problems but he did have a virus 6 weeks or so before his walking nosedived. It was an odd one. He had a full body rash that started off red and then went purple. We were backwards and forwards from the health centre and they just prescribed him aqueous calamine. He wasn't REALLY ill, just a mild temp and went off his food. he just looked really bizarre.

oh, booli, you've both had a rough time. hopefully the next year will be a bit easier for you both and maybe a gluten free trial will be beneficial. fingers crossed his confidence picks up and allows him to trust his body to make some progress, it must be so difficult for such a little one to understand that it was a one-off...