Aspergers/Autism/Sensory Integration Chatter #3

[Early Kids]

Sally!!!

have 3 main concerns for Brendan right now. 1) his ears, it's infection after infection atm and we are still yet to hear from the ENT about an appointment. 2) his weight and bowels, he has been the same weight for 12 months now and has never really had a firm poo (sorry for the tmi) I am under the impression that he has some kind of intolerance, but again the Dr here has said the paed is the best person to talk to, which is not till May. And 3) School.. I'm concerned that because he is already well behind his peers, he is going to be left further behind. And I realise that school is not for another year, and a lot can happen between now and then, but enrolments are in Aug!

I nearly dropped to the floor when I read that....

Matilda did not gain weight between 12mths and 24 months. She lost some weight before that as well. She did not do a formed poo until she was over 3 years old. At 3 yrs old, she was diagnosed with a cow milk protein allergy, and we went off all milk in our diets and... a month later she started doing normal poos and gaining weight. Maybe while you wait try to go off milk? See if that helps, at least drinking milk... Cook milk can change some proteins not all, but that often is all that you need to do. It can't hurt!!!

Thanks Christy! You actually got me thinking... Brendan had gastro end of May last year and lost just over a kilo in about 3 days. Two weeks later he had another bout of gastro and lost another kilo, but in that 2 weeks in between Brendan gained back most of the first kilo, so at the end he was only about 1.5kg down in the month. BUT he was taken off milk in that month and for about 2 weeks after and while he never had the formed poo, he did re-gain his lost weight. Then at around Aug he had another bout of gastro which saw him loose close to a kilo again, same thing happened came off milk and re-gained weight. Dec another bout and same thing happened... except he was put onto lactose free milk for 8 weeks following the clearing up of the gastro. I don't know how this wasn't put together sooner! Now to take out all milk... fun fun. Does the protein go through into powdered milk? He only has milk first thing in the morning now, and he doesn't really drink much of that anyway.

In regards to toilet training, we are taking it easy. We've found there is no use forcing the issue with him because that always leads to him going backwards. Brendan will go to the toilet, but it has to be on his terms, no one is allowed to be there with him he does it totally alone.

We've been meltdown free for about 5 weeks now, but in that time we've started a weekly group speech session and recently joined a kinder gym too. Brendan has also been ear infection free for about 3 weeks, so yay for that too!

[christy]

Sally!!! Matilda had 4-5 ear infections a year until she went off milk... since then she hasn't had any just when you mentioned ear infections it got me thinking about how the allergist said that milk allergy causes thickening in sinus' which block ears causing multiple infections. I sort of ignored him at the time, but she's not had any since coming off milk....

We have rice milk in our house, DD2 is allergic to soy, so we don't have soy milk, just rice milk. The Vitasoy protein enriched rice milk is out favourite so far...

For Matilda we had to take EVERYTHING out. And only now, 2 years later are we trialling cooked milk (when its heated up to a certain degree it changes the proteins) so this week we are starting on milk arrowroot biscuits (one every other day). I'll let you know how she goes.

DD2 who is allergic to milk as well, seems to tolerate cooked milk fine. She actually can tolerate heaps more than Matilda. She is worse with soy than milk products now. She can have small amount s of cheese with no ill effects, but we haven't tried anything else yet...

[*Efjay*]

I bought rice milk today to try Evan on. While we don't have major issues with his bowels I have noticed he rearly has a formed poo. Its always soft/runny. I have also noticed this with Isla. Dh can't do cows milk. Isla likes soy but Evan does not, so will try the Rice milk & see how we go.

[Early Kids]

Wow Thanks! Will def get onto some rice milk then, if I can avoid seeing the ENT altogether then I'm all for it! Makes me kinda mad thatb the Dr's here wont do anything other than keep giving anti biotics for ear infections... Generally Brendan gets a throat infection at the same time...

[christy]

Yep we had tonsilitis.... even to the point that our GP suggested we get her tonsils out and grommets in with a referral to the ENT. We were dealing with all the behaviour as well.... and then DD2 was born and I went to a LC who said that she was allergic to dairy... and took one look at Matilda and said "I can bet you that she is allergic to dairy as well" . We went on a waiting list to see an allergist who was a GP as well, he did heaps of tests on Matilda and found she was severely allergic to cow milk protein... 4 weeks later, no more ear infections, no more throat infections, her faeces became normal and her speech improved. Her speech stalled at 2yrs 5mths for 7 months.

We were nearly convinced that we would see everything disappear and that it was only a milk allergy, not ASD or sensory... but we were wrong, the milk allergy was responsibile for a lot of things, but not her ASD stuff. Having said that, her meltdowns went from 6 hours a day on average to 3 hours and even missing the odd day. It was a HUGE improvement. So much so that DH went on a "milk is evil" kick and tried to convert everyone . I still suggest it to breastfeeding mums who have reflux issues or multiple ear infections because really, what does it hurt to avoid milk for a while?

ETA: theres a huge movement amongst the ASD community that gluten and milk intolerances are common. Most of the kids are allergic or intolerant to one or both. In fact there's heaps of autistic T-shirts that people wear that say GFCF C=caesin protein that is the main allergen (not lactose which is commonly thought). This is also why A2 milk is suggested.

ETA2: if you google gluten free/caesin free autism you will find heaps of info out there, some of it is quite... ummm..... antagonistic? I don't necessarily believe it all, which is why we went through all the testing, but I promise you it works for us.

[tan32]

wow ladies I am learning so much.
Hamish is dairy intolerant and it causes upset stomachs, he prefers soy milk and will only have one type of it...
He has a lot of bowel problems but his is the opposite where he actually becomes extremely constipated, he has to take parachoc every day to stop the problems.

I had a question to ask, I am wondering if you find charts and reward charts on any benefit. I have seen how Hamish reacts with the homework chart in class and he loves placing his sticker on the spot.. Am thinking of setting up a chart at home to put a sticker on for when he completes his routines.like taking lunch box out of bag , doing homework, etc

We have our first appointment with the peads this week and I am still extremely nervous.

[Lulu]

Pead appt today. It went really well, I LIKEY this woman!

She agreed he sounds borderline ASD and wants to do the next lot of testing - hearing, IQ, psych x2 to confirm.
She is booked up till 2501 but says she will see him in her lunchtime to make sure we can get a fast dx and access the funding.

I also love her because she has a Childrens Foundation in India