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Our story so far!

(12 Posts)
jbadgirl Thu 03-Feb-05 13:14:27

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 13:16:07

hi again, I hope yu get some answers on monday, I take it you haven't had any rdesults for all those tests yet. Fingers crossed for you, and remember whatever they tell you, DS is still the same little boy and nothing changes that!

jbadgirl Thu 03-Feb-05 13:21:24

I know he is still a gorgeous little cutie pie!!!!

The only thing they said from the scan is that they are not "normal" and they think his temperal lobes are damaged? They were waiting for a peadiatric nuerologist to look at the scan pics to interpret them... its only been 3 weeks since he had the scan and we may not get and real answers anyway, just have to wait n see!

JakB Thu 03-Feb-05 16:26:50

jbadgirl, I bet he is! (a gorgeous little cutie pie!). Good luck with the whole process. It's tough, I know, waiting for the results of numerous tests and being quizzed by professionals all the time. You'll get lots of support on here. Thinking of you, JakB

chonky Thu 03-Feb-05 16:57:41

Hope Monday goes OK, will be thinking of you. I've found this board brilliant for support, a real life-line at times.
My dd has nystagmus too

Merlot Thu 03-Feb-05 20:34:24

Wanted to give you an official welcome

Hope that everything goes well on Monday, will be thinking of you.

Merlot Thu 03-Feb-05 20:34:26

Wanted to give you an official welcome

Hope that everything goes well on Monday, will be thinking of you.

chonky Fri 04-Feb-05 09:13:44

jbadgirl - I found this book helpful in terms of exercises to do to help with vision:

show me what my friends can see

I have a spare copy, which unfortunately is on loan, but I'll try & get it if you want it (you can have it). If I can't get it back, I've got the address to write to to order one. The book's produced by the neurodisability dept. of GOSH.

jbadgirl Fri 04-Feb-05 18:33:45

Thanks guys for all your posts!
Chonky - would love a copy of that book if you have a spare one if not im sure i will find it somewhere.
Did your dd have nystagmus from birth? Did it delay her development at all being unable to focus properly etc?

chonky Fri 04-Feb-05 20:00:10

Hi, will try & retrieve it for you on Monday, will CAT you if I have any joy.

My dd's nystagmus was late onset - it started at about 4 months. We were told that it would be at it's worst between 6-9 months, and then it should get better (although she will always have some degree of nystagmus I think). DD has cortical visual impairment, so she appeared blind at birth. She can now follow & track brightly coloured objects from about 2 feet away, so it is getting better (she didn't track anything at all until 4 months - she first showed interest in a black & white target shape).

jbadgirl Mon 07-Feb-05 14:40:07

Hi guys,
Well just got home from the hospital and the doc said that the mri results had come back but there is nothing that jumps out at them as to what ds has wrong. His results may go to holland to have someone else look at them, we also may get an appointment to go to a bigger hospital and have another mri scan. The doc suggested upping his medication as he has been really jittery again over the past week and a half, hopefully this will help his feeding as we have also had a bit of a step back with this too. We have now started him on a little baby rice to see how he gets on in view to this giving him extra calories in the future!
Hope everyone is well x

Merlot Mon 07-Feb-05 20:01:15

Nice to hear from you jbadgirl. Glad that the MRI scan didnt show anything awful, but sorry that you still haven't found out anything conclusive. Hope the change of meds helps your dd.

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