what special need does your child have?........

[anniebear]

Have just been looking at the photo's of some of your children, they are all gorgeous!

I just wondered if anyone would like to share what special needs there child has.

Yes, I am nosey!!!!

Just thought it would be nice to know what others have been through and some may find that their child has similar illnesses or needs, especially any new people.

I know that some of you already know one another well.

Apologies if this has been done before?


I shall start!!!............

My Daughter Ellie (a twin) aged 3 had Phneumococcal meningitis when she was 8 months old.

She was critically ill and had to have two Operations on her brain.

She went onto suffer brain damage to the right hand side of her brain, Hydrocephalus and then 8 months later was also diagnosed with a serious form of Epilepsy (Infantile Spasms)

We were told she was be severely brain damaged and disabled, but she is doing really well and is walking, running and stringing up to 5 words (we just need her to sleep now!!!!!!!)

[misdee]

she is georgeous mieow. so so lovely. and she has really picked up recently. couldnt belive the change in her when i saw her the other week.

[mieow]

my friend has a daughter with retts, and she is the most lovely child I have ever met, She is smiley and reconises me when i walk in.
I have been through the rare symdomes testing too, DS was tested for Angelmans symdome when he was 2. Its a stressful time so don't say sorry.

[SantaFio2]

FWIW they test all girls with significant development delays for Retts

[milge]

hi, we too are about to go through genetic testing, got an appt with them on tuesday next week. Welcome to mumsnet Mulsey, my daughter sounds v similar to yours - you will find lots of support here.

[jakbrown]

mulsey, welcome to mumsnet . I'm really sorry to hear you're going through such a difficult time. My dd had alot of genetic tests, including one for Retts and waiting for the results to come back was one of the hardest times of my life. Sending lots and lots of hugs and let us know how things go {{{{hugs}}}}

[chonky]

Mulsey, just wanted to send {{{{hugs}}}} We too are going through genetic testing for rare syndromes, agree with SF2, it's very stressful!!! Got to dash, but just wanted you to know that I'm thinking of you.

[SantaFio2]

mulsey, they thought my daughter had retts at one stage, infact they only ruled it out a few months ago even though they had tested her when she was 2! my daughter has very similar problems to your dd. they are now testing for rare syndromes, very stressful isnt it? and dont apologise

[coppertop]

Mulsey - definitely no need to apologise. This is where we all come for a moan, rant or even a cry. Welcome to mumsnet.

[heartinthecountry]

mulsey - if you read my link you'll know that my dd has a reduced life expectancy. So I know where you are coming from... CAT me of you want to.

[mizmiz]

Mulsey, just want to send you my thoughts and sympathy. Yes, it must be hard, but you will also have so much love and fun with her. Once you have a proper diagnosis, you will be able to sort out what help and support you need and life will become much better for all of you.

I have worked with many girls and young ladies with Rhetts Syndrome (as a SALT) and they have all been real characters and very much enjoyed and loved by their families.

You will also get so much love and support and practical help from the MNers here. I have only just discovered this, but if I was still working (am abroad now) I would tell each and ever one of the mothers I worked with to get on this and fast!!

You are not alone!

[blossomhill]

Mulsey

Please do not apologise. Everyone on here can completely sympathise and it must be so, so hard.

{{{{hugs to you}}}}Blossomhillxxx

[mulsey]

I just read my posting, and Im sorry, I think that you can tell that Im feeling alittle sorry for myself and my daughter at the moment.I really didnt mean to offload on anyone..... My husband and I both cope with our daughter differently, he would rather not deal with speculation and does not want to know anything until we have a firm diagnosis. Unlike me, who attends all the appointments and has to cope with all the information. Are we the only disfunctional family who use this board?
Ive just smiled at that = see, I feel alittle better already...ty

[mulsey]

My daughter aged 3yr and 9 months, still is undiagnosed. She has hypotonia and is not walking or crawling. She has a gdd, and as yet is not talking or finger feeding or even drinking from anything apart from a babys bottle - I really dont think that she feels hunger.... She is sensory defensive.
I saw the doc the other and he told me that he thinks she may have congenital rhetts syndrome. Which basically means, that the she, unlike the majority of girls with rhetts, started to exhibit problems at birth and not later on. It can also be life limiting..... I cry everytime I think about it. Just hope that we dont have too wait much longer for the tests.

[Posey]

I don't normally post on the special needs boards because I really don't ever think I could add anything useful, but this thread caught my eye. I really still can't add anything useful, but the messages were uplifting in many instances and the photos adorable.
Thank you for sharing them.

[rivers]

My DD was born at 26 weeks (weighing 1lb 11oz). Due to a floppy airway she has a tracheostomy and is fed via gastrostomy. She communicates through Makaton and is meeting most of her physical milestones. Wonderful, strong little girl who has battled so much in the first few years of her life but remains so happy!

[mieow]

DS has spastic diplegia CP and DD1 has SD CP, speech and language delays, learning difficulties, and behaviour issues

[Saker]

Ds2 doesn't have a diagnosis but has global develomental delay. He is aged three and language is assessed at 28m, and motor skills at 18-24m. He has difficulties processing information and with motor planning.

[jakbrown]

ps Pixel, our children sound like soulmates!!!
Wait until they get together in the unit (they will be the same year if Dd gets a place)...
He sounds like such a sweetie

[blossomhill]

Thanks Jakbrown xxx

[jakbrown]

Profound And Multiple Learning Difficulties, I believe, Blossom

[blossomhill]

Being my usual nosy self jimjams but what does PMLD mean??? I know it's XX learning difficulties!!! Thanks

[onlyjoking9329]

glad to see you got a place for him Jimjams, i am sure he will be happy there, keep us posted.

[Jimjams]

DS1 is autistic. At 2 he was diagnosed with mild language delay and we were told that he "definitely isn't autistic." At 5 and a half he is still non-verbal and is clearly fairly severely autistic. He's currently in mainstream but will be going full time to an SLD/PMLD school from January.

[onlyjoking9329]

i have twin girls aged 10 both have autism and learning disabilities, they were DX at 4 years 4 months, my son is seven, he was DX at 2 years six months with autism, so we had three DX in 14 months.

[pixel]

My ds is 4.5 and has autism and severe learning difficulties. He is non-verbal, still in nappies and has various sensory issues. He is also cheeky, funny, loving and sweet-natured. Oh, and extremely handsome!