Special Needs Chat and Support Group

[alioops]

Hi all,

I decided that we need somewhere to ask questions, vent about things happening with our SN kids, and whatever else is happening in our lives because with SN kids, everything is impacted by their health.

I am Ali, i have 1 non SN kid - Sarah 22 months, and 1 SN kid - Emma 6 months. Em had faliure to thrive at 5 weeks caused by lactose intolerance, and although she has caught up I am always searching for lactose free recipes and products. we are not allowed to challenge any dairy until 9 months, except for her formula which is Karicare DeLact. She is having allergy testing at 12 months so hopefully we will get some more definitive answers and freedom. they may also provide some recipes that suit her needs.

Please come chat with me and lets form an incredible suport network.

[MistyFying]

Hi Ali...how is Emma doing now? There are so many lactose-free foods available now. My sister has a 14yr old who is allergic to dairy (and a few other things also). When he was a toddler she had difficulties finding supermarket type foods that were lactose-free. Now there are quite a few ranges to choose from. There are a few posts about dairy-free recipes on BB...I shall try to track some down for you

ETA: this thread has dairy-free choc-chip biccies
This one has bread-stick recipes
Zucchini bread
Cupcakes, pancakes and Muffins

[alioops]

Thanks Christine!

Em is doing great now, Christy has been a huge help with things that her girls can eat as they can tolerate most things that Em can. we have 2 months till we have to start challenging her with custard and yoghurt, and i am not looking forward to it coz it will more than likely mean more yukky nappies. i should be onto cloth by then too. i think we will keep some sposies for that stage coz it is gross at the best of times, so i am not going near it when she is sick! I am finding more and more in the shops that she can have and i am lobbying for places to make dairy free rusks as they are not that easy to make IMO.

[christy]

Ali *hi!* I'll send you some info if you like, PM me your email addy & I can send some recipes I am working on.... dairy free & hidden veges.

Matilda's been off cows milk products since August and we trialled some biscuits somewhere & yep... even cows milk solids cause issues. But goats milk doesn't.

Jovie, we've given cheese with yucky consequences. So we just don't use it anymore.

I guess we've resigned ourselves to not having it in our diets anymore. I do miss lasagne.... but its all good. With the girls, we ration portions every few weeks so their allergies don't get worse.

[lexi11]

Hi guys. Im new around here, but ali knows me from bh. Well, i have one little monster, her name is Alex (alexandra) and shes 2. Alex has multiple medical and developmental issues and has just been registred as disabled.

HI!

[alioops]

Hi Peta!!!!!!! was wondering how long it would take you

Has Alex gotten any better through the day?

[lexi11]

hey ali. yeah shes perked up a bit, im so relieved. took her to the dr though and its indeed full on malabsorbtion. they worried cause shes got so much wind, now this, something is going on. god, i hope brissy work it out in december!

How are you guys?

[alioops]

Oh no!! not Malabsobtion!!! Maybe you should ring Brissy tomorrow and ask if they want to see her sooner? something is not right. Glad she is happier though!!

We are all our usual selves. Em had been eating sultanas though so she is being rather regular, 2 today usually only 1! but that's not too bad.

[lexi11]

omg lol. i have to laugh...or i'll cry lol.

alex stacked it off her play equipment and has perferated her ear drum. yes im serious. we just got back from the hospital. shes being dosed up on pain stop for a while lol. and gotta go back tomorow to try and see if her grommit survived

[alioops]

OMG Peta!!! She is in the wars lately!!! You know I am here if you need a shoulder to cry on.

[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???

[jesscook08]

i just throught id pop in and say hello. my 2 year old daughter faith is also a sn child she was born with fluied on the brain sorry i cant spell the true name hydro caferles it is mild and she has just been discharched from dr wallace at melb royal childrens hospital but she still is under the eye clinic ent and auitology up there seems to be some hearing and sight loss but only on her right side at the moment still undergoing testing to see how bad. at 10 months old she could sit if u put her in a sitting position but she couldnt pull herself to sit up until she was 12 months old she started crawling at 14 months by 22 months she had started to walk at the moment her speech is still about 6 months behind but in all other areas she is basically up to where she should be at her age. she is in an early investergation program where she does physio and speech.

ps you can get lactose free yoghurt faith loves it. faith also had a minor lactose issue but luckey for us she has grown out of it. she also has asthma and up till i moved house 7 months ago she was going to the hospital 2 or 3 times a month in the last 7 months she has been 3 times 1 of those times was because she had a confoshion.