Special Needs Chat and Support Group

[maz]

Now please, please dont think im being *****y but I am a bit confussed atm.

ive justt gone into Children's Medical Conditions and seen quiet a few postings and stickies in there about Lactose intolorance and now its in here?

Isn't that confussing to people who are looking for help and seeing it as a medical condition rather then a special need or disability, as a disability is something that cant be 'fixed' with a simple diet.

I know that its not an easy thing either but it seems so low down to the special needs of member who has a child with a cleft palate disability or no sight.

I dont want others to feel like they cant come in here and chat about their children with their disabilities and feel uncomfortable. I just think that the topic should stay in one section so member know were it is.

[christy]

Beautiful Maz. I will endeavour to explain my take on it The sticky in Medical Conditions is about how rare lactose intolerance actually is .

One thing with my kiddies is its not a special need, nope I would never put their milk allergy in that area. Medical condition, yes I would. The allergy thing, for both my girls it has caused reflux. In Matilda, ear infections, tonsilitis, low weight gain, speech development delay (which you know could be her other issues as well). In Jovie, ezcema... but we caught hers early at 11 weeks.

Some kids with it also have issues with their gastrointestinal tract, so they have ongoing issues with anorexia, weight loss, abnormal poos, stomach cramping, IBS, and I'm sure a bit more. While I think we got away relatively easy with the milk allergy, I also think some have had it worse off and had to tube feed their children etc... which can make it a special need. With Peta's little girl in the above posts, she's been labelled as disabled with everything going on with her... I think milk allergy/lactose intolerance can sometimes just be the tip of the iceberg with these kiddles.

In Medical Conditions there are different things which range from reflux to newborn's snotty noses. So I guess we could moderate it a bit better? Moving some questions into the general baby discussion ... I will have a think about that one mate. I know you weren't meant to be *****y at all.

[maz]

Understand fully and thank you for not thinking of me as a biartch! I truely try not to be but I just wanted to voice what I think others would be questioning and disbelieving in themselves IFYKWIM

SN is so broad and yet still put into the smallest box that we can be squeezed into.

I honestly couldnt understand why lactose intolerance was put in here in a mild case when it was discussed else were. I have seen and know of BB members that have children with Lactose intolerance on a higher level to were they need tube feeding ect and I see that as SN...I just though the milder cases were a change of formula, slight medication and diet was a medical condition rather then SN.

Having 2 children with SN..both completely different to each other, it felt almost like a slap in the face to read something so little compared to what my babies go through on a day to day basis. Im sorry if I have offended anyone but Im a black and white person and if I dont say it it will build and you dont want to see me then

SN is a very sensitive subject..and I suppose we just need to have a step back and think of others in their own situations before putting it on the big screen.

[alioops]

Thanks Christy, You said what I wanted to say in a much more eloquent way

Maz, When Em was little she was on an NG, until she got back to a weight the hospy were happy with, then we had to figure out exactly what had caused the FTT and she gained and lost for quite some time until it was figured out. There are pics of her with it in my gallery. She still cant handle any dairy other than her formula. I agree that SN are so greatly different and it does have such varying degrees. I think you deserve a medal for all the stuff you deal with.

Em's LI has lead to a few issues, which are still being ironed out, and we are waiting for a developmental assesment.

[maz]

when will you have the developmental assesment done matie?
Educate me woman. lol. No honestly are there special things you guys have to do for IC eg physio, I gather diet, medical ect? what is the on going treatment for her?

i just checked our calender and we have the physio back next week. I cant wait cause Mateauz is virtually sitting by himself and trying to pull himself up. I dont find that he is as weak on his left hand side anymore. Dont get me wrong, when he is tired of having a bad day I notice a bit of slack in the energy he creates with this side and tends to drag his leg when he cant be bothered.

Only 3 1/2 more months until we go back to the pead's adn then of to the Royal Childrens for another MRI to see if we can see any clot's still and what brain damage is left.

[alioops]

She sees the DAP at 18 months hun.

The LI mainly affects diet but she gets oral thrush and ear and chest infections, because she isn't able to get the good bacteria from things like yoghurt. She sees a dietician as needed, and we have been lucky that we havent needed to see her for a little while, but when her formula script runs out we will need to see the dietician again to work out other options for the fat and calcium levels in dairy. We may need to see a speechy at some point but not sure at this stage. Thankfully she is doing really well at the moment, except for when she manages to steal something from Sarah, but we have had a bit of a break for the past month. Occasionally she still refluxes, but not as badly as when she was tiny. We are still working out some of her issues. Sometimes finding all the issues can be like putting together a puzzle, as you know.

Mateuz is doing great hun. I think he wants to prove to the whole medical profession that he is superman

[lexi11]

hi guys.
can alex be special needs?? lol.
it is so broad, and i feel it sometimes too.
alex not only has a burst ear drum, now its also infected grrr.r so more meds. grrr kids lol.
learning makaton now, speechies happy to have alex learn so im happy to teach with her guidence. have special school tomorow and meeting with dsq.
ali whens the ultrasound???