babies/children with complex or special needs

[MrOrange]

Hi all,
Just wondering if there are others out there whose little ones have complex needs?

She is 2 and has a few (sight, uncontrolled epilepsy, global delay, cerebral palsy).

Looking forward to hearing from you.

/j

[yzftat]

J

I dont have experience directly but have seen many kids with SP in my line of work. (i design wheelchair seat belts).
I might be able to put you in touch with some companies or indeed help you myself with things to make life easier. Just get in touch through this forum.

Andy

[RichJackson]

Hi.

My youngest (19 months) has recently been diagnosed as epileptic and we're currently trying to settle her onto her second different type of medication for it. (apparently it's not working too well as I'm currently sat with her following a fit!)

She has both full convulsive seizures and abscences. Unfortunately she is mirroring her older sister (8 next month) who was eventually diagnosed as epileptic at 2 and was then diagnosed with Autistic Spectrum Disorder at 4. We're hoping that the mirroring will finish soon!

[Goonerplum]

hi Rich,

My word you sound like you have gone through the wringer with your two. We have some articles on the site around Autistic Spectrum Disorder which you may find useful (though you may know most of it already) article 1, article 2, article 3.

I will ask Mags to log in and talk a little about her experience with epilepsy - she was diagnosed with it when she was born.


Gooner

[mags]

Hi Rich

As Goonerplum mentioned I was born with epilepsy (my 1st fit was at 3 hours old I am told), I was on daily medication until 21 to control the grand mal fits. After a time they reduced to petit mal fits and now (fingers crossed) I am OK. I am told though that since I was born with the illness I will always have it - it worries me when I can't remember things or don't seem to hear someone even though I am aware they are speaking to me.

I have to say although I wouldn't want my life to be any different, my childhood was ruled by my illness. I wasn't allowed to swim or ride a bike until I was 12, I attended hospital every 3 months for EEG's and hated taken my medication ( a very thick gloopy syrup called Epanutin). My fits were triggered by lights in the main but very often had no trigger at all. As I got older I became more aware of the signs of an impending fit - although everyone's warning signs can be different - a strange pear drop smell and a pounding headache were enough to get me to sit and wait for the inevitable to happen. As would be expected I rebelled big style, seeing my siblings out with their mates "enjoying" their childhood made me really mad. I could not hold a driving licence until I was 32 as the rules stated you had to go 5 years clear of all fits- including night time ones ( which went on for several years), then 2 years, then a year ( at which time I applied). My only ally was my dad who also had epilepsy and understood how I felt and what I was going through, my mum & dad tell me they felt incredibly guilty that they had "given" me epilepsy - a ridiculous thought really but as a parent now I can understand it.

It took my doctors a long time to get the medication sorted, there are so many different types of epilepsy and medication combinations but they will get there with your children.

When I became a parent they told me I had a 1 in 4 chance of having a child with epilepsy, all was good until my 3rd child who started fitting at 6 months old. Luckily they were only febrile convulsions but the stress was incredible.

As a glimmer of hope I am now 40+ (age not ever to be disclosed) and have held a driving licence for 11 years. particularly as a female it has been very difficult because there are some medications ( namely Tegretol, that you cannot take when thinking about getting pregnant because of risk to the baby)

Your daughters are lucky to have a father who is willing and able to support in the way that you obviously do. Go Dad Carry on the good work, if you want anymore insight, help or advice you can always message me privately. I would be more than happy to help

Mags

[anderzon]

at least mag you are ok now and so are your children. But for sure you miss a lot with your childhood. Are you planning to have another baby at your age?

[RichJackson]

Hello everybody.

Nice to hear a few different views on the problems the kids could and will have throughout their lives.

Fingers crossed everything goes well with the meds, especially after we see the new consultant for my eldest. (he is currently seeing our youngest but is from outside the health authority)

[mags]

Hi Rich

I hope I haven't scared you, as I said I wouldn't change my life if I could. One huge benefit was I managed to have a very successful education as I protected from the normal hassles - and consequently I have gone on to have a reasonably successful career.

It's really good that both your daughters will be seeing the same consultant - my dad I both did and it gives the docs a real insight into family history and methods of treatment.

Best of luck with everything and let us know how you get on.

And BTW Anderzon - 3 kids is way enough, I come from a huge Irish catholic family ( I am 1 of 11 kids) so rectified the will I won't I have kids again many years ago So that is a definite no way !

Mags

[RichJackson]

3 kids is definately enough!

I too come from an Irish Catholic family. My mum is 1 of 11, but only had 2 (she was told she'd never be able to have any), so I think I've done my bit!

And Mags, nothing could scare me anymore than I have been already! It's an experience living here!!