Hi I'm bel my DD is dx PDD-nos and is about to turn 4 and my DS is dx Autism and is about to turn 3.....
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10-04-2011 18:38 #11Senior Member
- Join Date
- Jun 2006
10-04-2011 19:19 #12
I'm Kieran, mum of Bree 8mo dx Spastic Quadraplegia CP, Infantile Spasms, GDD, GERD and we use an NG for supp feeding. We are currently in line for a button and fundoplication. Bree is my 4th child and my only SN one. I have so much respect for those mums who have more then one child who needs extra care. Some days are such a struggle just juggling meds, physio and appointments for 1 SN bub.
My biggest problem with Bree is basically that she's not a happy baby. I understand why I just wish I could make her life more enjoyable. I read something so sad this weekend that made me cry. On another forum a mum was saying that she was worried about her CP son having surgery to release his adductor muscles, she didn't want her son in pain. A 40 yo man with CP stated mother of factly "CP is painful". Do you know how many countless medical staff have assured me that CP is uncomfortable, not painful?!?
Sehan what is this therapy that you are doing with your son? Would it be appropriate for Bree?
Does anyone know what I can do to help her enjoy life?
Also mummys of ASD kids can you tell me what tipped you off when they were bubs and what you did/do to help them be happy?
Hmm thats probly enough for a chat lol I do get carried away. This really is the only place I feel comfortable in RL and online
10-04-2011 19:34 #13on a bubhub break
- Join Date
- Aug 2008
Kiz *hugs* is that bree in your avatar? just beautiful
i guess the big big signs for me, where my son was terrified of everyone. the thing that kept him the calmest and the happiest was being in my arms pretty much. as time has gone on there are other things, but when he was little, it was me, and it was music that put him in a better mood.
try to trust your dr's, that man might have been in a bad mood, or might have other things that contribute to his pain. if your bubby isnt screaming all the time, she probably isnt in pain.
*so many hugs*
10-04-2011 19:46 #14
Have finally got a minute to come in and introduce myself, DS & DD.
My DS (4.3yrs) has ASD, but we have been quite lucky with outside support out of the hospital/paeds so he is thriving at the moment. We still have our super challenging day - read today, but we keep going.
DD (13months) has unconfirmed cystic fibrosis, (last stages of testing) has been tube fed through an NGT since January. Has a mild oral aversion, SDD, CMPI, GORD, she is failure to thrive (7.1kg's at 13 months) She is also allergic to all dairy, lactose, soy and eggs. She was tolerating yogurt for a couple of weeks, but suffered another set back health wise and is now having trouble with it again.
We are just going around in circles with her lately. Coming back from another chest infection and also lots of teeth, plus a viral cold has really made things difficult around here lately.
Have had some hard hard weeks, where I have isolated myself from the world, but hoping to come out of my hole soon. Doesn't help I'm 11 weeks pregnant and the m/s is bad!
Hope to get to know you all soon. xx
10-04-2011 19:57 #15
Forevermine I have been following your story. You have done such an amazing job fighting for your DD after all those 'health orofessionals' have told you it was nothing. I use the term health professionals very loosly in your case because there is nothing professional about them.
Congrats on the pregnancy. Hope the MS passes soon
10-04-2011 22:11 #16Senior Member
- Join Date
- May 2007
I thought I should introduce myself
I'm Rachael I've got 3 little boys 2 which have Special/additional needs
DS1 is 5yrs, he has SPD, Mild GDD's with the worst area's being Speech and Language.
Where currently doing weekly speech session with EI (even during the holidays).
his a energetic ball of energy but in the last 6-12mths has made huge progress
and is a different kid
where just about to start getting everything organised for school next year
DS2 is 3 1/2yrs, he has some Sensory Issues, Moderate GDD
in all area's with gross motor and speech being the worse areas,
Ear and Hearing Issues, possibly Mild CP,
DS2 on the other hand it often feels like where just plodding along at a snails pace,
and I feel like I'm in getting the help he needs
his due to have his 2nd lot of grommets in July
(1st lot at 18mths due to fluid and hearing loss)
11-04-2011 11:48 #17
Just lost my post argh!!! We had a quiet weekend but have just seen the OT. There are some amazing ladies on here- I couldn't imagine how hard it would be to have more than one SN child I have my hands full with DS. Kiz we have a very grizzly boy too, not sure what to do to change it but he can be very resistive to do anything and is vey stubborn. The therapy (Feldenkrais) we are doing has helped him a little he is calmer but has also started sitting. The therapist moves him into different positions and provides feedback between his body and brain so that he can learn to achieve different movements and is more aware of his body's positioning. It s hard to explain but I found some videos of it on youtube thats how I found out about it. Type Anat baniel method in and you will see what I mean. Anat Baniel is a lady in the US who trained our therapist (our therapist also trained in europe) and she works with kids with CP, autism, behavioural issues, ADHD etc checkout www.anatbanielmethod.com It probably doesn't work for everyone but it seems to be helping us if anyone wants more info pm me. Not much else happening hope everyone is having a good day.
11-04-2011 11:51 #18
Ask and you shall receive
The thread is now stickied for you lufflies, if you need anything else, just holler. Using the report button is the fastest way to get a mods attention.
11-04-2011 12:28 #19
I have a 22-month-old with Down syndrome (as well as two big kids, and two big step-kids).
We don't have alot of HUGE issues with our Supergirl right now - I think they'll mostly come later as she gets a bit older. All her milestones are delayed (walking, talking etc), but that's really not a problem.
The main thing problem we are having is health-wise. She was pretty crook last year, with various respiratory viruses. She was in hospital for a fortnight, home for just over a week, then back in for another fortnight. Since then, I am constantly stressed that she's going to get sick again - every time she's a little bit off, I think we're going to end up back in hospital. There have been various tests done to investigate the cause of her getnig so sick. Currently, the theory is that she's aspirating when she drinks, so she is on thickened fluids to prevent this. She still sounds awful, really rattly breathing, and a terrible cough, so it doesn't appear to be doing much yet. If she's still the same at our next follow-up with the paed in June, she'll be referred to a respiratory specialist.
But generally, she's good!
ForeverMine, I'm another one who has followed your story, and really feel for you. What a journey you've been on with little Willow
11-04-2011 23:13 #20
Well we're in hospital
Bree had a tonic clonic seizure today so I guess it is more then infantile spasms.
Her EEG is still highly abnormal and she has started doing erratic movements for hours on end.
We're in Townsville Hospital which is our closest major hospital. We have a great paed and excellent facilities but the presentation of her seizures ( many different types now) has everyone puzzled so they're moving us to Brisbane Women's and Children's on Wednesday for further analysis :O
OMG I never thought I'd be one of those mums in and out of hospital with a sick baby
Anyone else had a bad start to the week?!
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