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Our story so far!

(7 Posts)
jbadgirl Thu 03-Feb-05 13:06:03

Ill try to be brief but this is our story so far!

Ds born 4 weeks early as he had stopped growing inside me, weighed 4lb 3oz. Went home 6 days later and saw the HV who weighed him and he had lost about 10% of birth weight, she left it for a couple of days and then weighed him again, still no gain.
She refered us to the hospital to check there were no other problems and on admission his temperature dropped, he was taken to special care and in there for 2 weeks had a ultrasound of his brain and an eeg. These were not 100% normal but thought it could be the result of his temperature dropping. They were also concerned about some abnormal movements he was having and his nystagmas.

Once home he was feeding well but after a couple of weeks this went downhill and he started crying during feeds. After about 6 weeks of coping with his awkward feeding he was admitted to hospital again as i was worried that he hadnt had much milk in the last 24 hours.
Ds stayed in for about 2 weeks again and had even more tests done...mri scan, chromasome tests, eeg, we also saw loads of specialists...speech and language therapist, development consultant, nutritionist, orthoptist, genetisist.

We have been referred to the child development centre which we went to yesterday for his assesment. They looked at the fact he is not smiling, cooing or following toys etc. He is now 15 wks (11 corrected).

On monday we have an appointment with the pead, so hopefully we will get some answers to all the tests.

I know i have rattled on and i hope you guys dont find it too long! I really enjoy looking through threads on mn and find it so good to get advise and give my advise too!

sparklymieow Thu 03-Feb-05 13:09:07

I would put this in Special needs section, people there might be able to help and give advice

coppertop Thu 03-Feb-05 13:11:51

Welcome to mumsnet.

There's a big group of us over in the Special Needs section if you ever need a place to rant, cry or celebrate.

jbadgirl Thu 03-Feb-05 13:13:35

ok ill pop it in special needs too then! x

Gwenick Thu 03-Feb-05 13:14:02

I don't know much about SN or anything - but it's NORMAL for babies to lose 10% (or more) of their birth weight for the first TEN (10) days.

Admittedly my DS1 did smile quite early - but he NEVER really 'cooed' - infact didn't really make many noises until (apart from crying and whinging) until he started to talk! And he wasn't remotely interesting in toys (following them or playing with them) until he was well over 6 months! - he's now a perfectly normal 4yr old doing extremely well at nursery.

Of course I'm not saying that there 'is' nothing wrong with him - but wanted to assure you that even some NT children have the above things happening to them

Jimjams Thu 03-Feb-05 14:25:36

glad you're being seen so quickly jbadgirl. You might want to think about contacting Bibic We took our autistic son to see them- and I think they would bee very good in your sort of situation..They basically asses the developmental stages that are missing and then teach you exercises to fill in the gaps- so for example they have exercises to encourage tracking (I can't remember what it is as my ds1 could track- my friend's dd couldn't though so she had the exercise- something like a dark room with a uv toy moved slowly from one side of the face to the other probably).

Hope you get some answers on Monday. (I really would recommend BIBIC in your circumstances as I think they do exactly the right sort of stuff for you now, can provide support, and the exercises are relatively easy to do. If it costs too much ask about fundraising (they help you- so for example if yourattled tins for them outside a supermarket for a few hours you may get enough to pay for your account)

jbadgirl Fri 04-Feb-05 19:16:54

Jimjams - Thankyou for that i will look into it!
We have been referred to the local child development centre for an assesment (which we went to on wednesday. It sounds a little like bibic with all the same kinda therapists. Its really good that we have one so close but how it will compare to the one you said i dont know!

Thanks again to everyine for all the support and i will keep you up to date with all our progress and news

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