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Need advice about my son. Any thoughts or advice appreciated.

14 replies

fourisfine · 05/12/2010 23:42

Hello, I'm sorry, this is enormous! Blush

I've not been in this section before and I've namechanged to shield my usual name from anyone in rl who will recognise me from my description of my son/ the situation.

When my ds was born everything seemed fine, good weight etc, etc.Pregnancy had been fairly straight forward, a few incidences of decreased movement, one incident caught on hospital recording equipment where they said the baby had been squeezing the umbilical!??

Had a natural labour, all seemed good.

Noticed a problem with my ds's ears within a few days, they had a cup deformity ( top part of the ear rolled down) and stuck out at right angles from his head. I was told he would need surgery to correct them at some point because it was quite extreme. Hoping to avoid this we used ear buddies to reshape his ears and it has worked brilliantly.

I noticed before we left the hospital after he was born that his right foot was twisted so that his sole was pointing towards his left foot whenever it was in a relaxed position. I was given a refferal to get him checked out but it was a long way off so spoke to a relative who happens to be in the right medical field. She gave me exercises to do to his whole leg and it improved lots over the next few months, when we finally got to see a doctor at the hospital he was really pleased with the exercises and said to continue for another month or so, but otherwise it was as good as it was going to get and very unlikely to cause any probs.

Developmentally at 1 year he was ahead of where he would have been expected to be, I can remember him doing the tune to twinkle twinkle.

Then at about 1 year old, my ds started outward breathholding. If he hurt himself or got really distressed he would scream outwards, fight like mad to try to breathe in, go blue, pass out, and then I would wait for him to start breathing gain. I have lost count of the number of times i've had to make him breathe again. I've now been told not to wait and to begin resuss as soon as he is unconsious.

At 20 months he had a febrile convulsion.

The tantrums, completely blank stare whilst screaming, throwing himself backwards, bashing his head on things if I couldn't catch him quick enough. It has been really difficult, from when he started breatholding (roughly) his development pretty much stopped, very few new words. Completely attached to me, very 11month old like in his separation anxiety.

I was on the verge of speaking to the gp about developmental delay when I started to noice a change. He gained a few words, a few new noises, started to play alongside other children again. etc...

He's now nearly 3 and as far as I can tell his development is pretty much normal for his age. He very rarely breathholds, very rarely tantrums at all. The difference in him from 6 months - 1 year ago are as though he is a different child.

My dp describd his development as though he suddenly went on a tangent for 2 years.

But I'm worried. Why did he stop developing so drastically? He has started singing Twinkle twinkle in the last few months. Its like he has picked back up where he left off.

My relative who gave the foot advice has admitted she thought it may have been caused by a bleed in his brain. Could a second bleed have caused the change in behaviour/developmental delay? If so could it happen again?

I know that ears and brain develop on the same day of gestation hence why i'm mentioning it.

Is there a link between cup ear deformity, hypotonia,developmental delay? I've been googling and I can't find anything that seems to fit.

I 'm so sorry that is so long, thanks if you made it to the end. I just don't know what to do next. I don't know what questions to ask where.

Thankyou

OP posts:
daisy5678 · 05/12/2010 23:54

I don't know either, but think it's worth checking out! First port of call would be a paediatrician, via GO, I would think.

Good luck.

fourisfine · 05/12/2010 23:59

Hi thankyou for replying, ~I'm sorry, but what is GO? Or do you mean GP? :)

OP posts:
daisy5678 · 06/12/2010 00:12

That's the one! Sorry!

fourisfine · 06/12/2010 00:18

No Its fine. :) Thanks again for replying. Its nice just to have someone else say yes gp check it out!

OP posts:
fourisfine · 06/12/2010 00:49

Has anyone else experienced anything similar?

OP posts:
bigcar · 06/12/2010 10:22

no similar experience but I would second what giveme said, if you're worried about development delay get referred and stand your ground that this is what you want.

StarlightMcKenzie · 06/12/2010 13:01

This reply has been deleted

Message withdrawn

fourisfine · 06/12/2010 19:45

Thankyou all, I've managed to get an appointment for wednesday morning DP is going to take morning off work to come with me and I've got childcare so we won't have to take any children with us.

I don't want to discuss it in front of ds1, if the gp wants to see him I'll happily take him back any time they want, but I feel as tho dp and I need an opportunity to discuss what has happened and I don't want him listening.

Once the dc's are in bed tonight I'll write down everything I can think of behaviour wise, I'm now wishing I had kept a diary.

Thanks for your advice. I'll be back with an update. :)

OP posts:
mariagoretti · 06/12/2010 19:52

Looking at old photos can help jog your memory. On the computer they're date stamped as well. Only problem is that most people only take piccies on the good days though Grin

fourisfine · 06/12/2010 21:23

Good idea mariagoretti! I've got 4 dc's under 6 so its usually a good day for one of them!! I've got literally thousands of photos I average about 300 a month Blush. I'l write down everything I can think if and then start trawling through the pics.....

OP posts:
fourisfine · 08/12/2010 02:42

Been going through lots of photos of the last 2 years..The date of his 1st outward breathold which we (and the hospital) thought was a seizure to start with seems to be the beginning of the developemental delay etc..

OP posts:
bigcar · 08/12/2010 09:36

hope all goes well this morning

fourisfine · 08/12/2010 10:25

Thanks bigcar, I think it did!

I took a big sheet of notes with me and dp and we went through everything with the GP he accepted my relatives diagnosis of the twisted foot as mild cerebral palsy straight away, so it makes me think that was also his assesment when he saw my son and referred him.

He also agreed that although taken individually my sons problems seem small when you look at the big picture it could add up to something worrying. He also felt that there was a possiblity of 2 brain events already combined with the breath-holds and behaviour there was theoretically the possibility of a reoccurence with a less positive outcome if he is older.

He wants to see my son himself so we have another appointment and he will then refer him to the hospital and suggested an eeg / MRI to rule out future problems as far as possible. As he said, there is obviously something going on and it needs further investigation.

Thanks everyone, I'd been really stressing about whether I should even speak to the GP. I really appreciate the advice and support. I kind of felt as though I was making a fuss based on minor things that could of been a lot of nothing, but I do feel vindicated now iykwim?

If anyone should think of anything that might help, I'm open to any info that could help.

Thankyou again :)

OP posts:
bigcar · 08/12/2010 10:32

that sounds really good, referral to a developmental paed, mri and eeg is a very good start. The results of those will give you an idea of where to go next.

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