Little S update…or why we’re going milk free…

When I started my blog, long before I realised I was a ‘mummy blogger’, I told myself that this blog would be my therapy, my place to tell all and be anonymous at the same time. Recently,  Little S has seen a consultant psychologist who basically has been assessing him for autism, if that is the right way to put it. I haven’t hidden this, but I also haven’t blogged the outcome of this appointment. I’m not sure why. I think we’ve just had to deal with it as a family first. Even though it’s nothing really bad. In fact some may say it’s a good thing. But I just felt that I wasn’t ready to put it out there. I hope you don’t mind…

So we went to the appointment expecting the same as what we’ve had before – lots of questions about S and what his problems are, followed by little ‘tests’ followed by a vague outcome, usually that he has autistic traits but they can’t be sure if he’s autistic or not. We get lots of recommendations, mostly stuff we have been doing for ages. So we nod and say, ‘yes we’ll do that, thank you’ then we go home and wonder what exactly is going on!

It was a bit different this time. After the last appointment in Oxford, when we got lost and were late (that was his hearing tests a couple of years ago) we left with plenty of time to spare. We got there, parked and even managed to pop into the shop beforehand. The appt was at 11.30am which as many parents would sympathise with, is the worst time to have a 90 minute appt – right over lunch. Luckily it was a day when I normally work so B was at the childminder. We bought S some crisps and a drink to tide him over. For some reason we always feel the need to treat him when we’re taking him to one of these appts. Call it guilt if you will but to be honest, he is usually so well behaved that we want to reward him – there was also a trip to Toysrus and McDonalds afterwards…I think we went overboard on the treating!

So we got there and we were in a waiting room full of children. This is going to sound terrible but they all looked normal! I was sitting there wondering if we were in a room full of autistic children. I wanted to compare them all to S. Some of them were playing imaginatively so I thought, ‘no they must be here for some other reason.’ I hated myself for thinking like this. But this is how it has become lately. Everything that S does makes me wonder if he’s doing it because he’s autistic. i think I’ve come to the point where I need closure so we can move on and start dealing with it.

Unfortunately, the appt coincided with S having the first of 2 urine infections he’s had recently (something else to worry about, I’ll save that for another post!) so as sods law would have it, he needed the toilet right at the moment the doctor called us in. We had put him in a pull up that we have for emergencies because he’d been having a few accidents (he didn’t want to go because it hurt so much) but he didn’t want to wee in the pull up. He’s a big boy now Mummy! So once he’d braved the loo we went in.

I had a good feeling about the doctor from the off. He started off by saying, ‘I know you’ve probably been asked this before but tell me the history with S.’ We told him, cue lots of understanding nodding and note writing (normal) plus questions about the point at which we started to notice a difference (not so normal). We tell him that at around 9-12 months we start to notice a difference. It coincides with the time I went back to work and S went to a childminder. She was going through a break up with her husband. We didn’t know at first but after a while she told us and gave up childminding. We hadn’t been totally happy with her so it came as a bit of a relief. 

The doctor seemed to think that this may have had something to do with S’s problems. I had never thought that that period of time would hold so much significance for him. He also linked his problems to the time when I stopped breastfeeding and gave him cows milk.

When we first gave S milk, he did have some rather horrible nappies. We went to the doctor who said it was unlikely to be a milk allergy but we had to keep an eye on it. It seemed to get a bit better over time so we just dismissed it as ‘one of those things’. We didn’t really give it much though after that, even though myself, my sister and mum have all had problems with milk. I pretty much hate milk although I love clotted cream, especially when on scones ;) I know I can’t have too much dairy but just thought that was because of my general aversion to it.

Anyway after the initial questions, the doctor did some activities with S while we filled out a questionnaire. It asked some weird questions like, ‘does he have red ears?’ and ‘does he have bad breath?’ We answered the best we could. Just as we finished, the dr was arranging 4 blocks into different shapes and asking S to do the same. He did pretty well but at some points he really had to force himself to take part in the activity. He would move his chair away then bring it back to the table. All normal for him!

The doctor told us his observations about S, like the fact that his voice rises at the end of a sentence (sometimes typical of autistic children), his movements can be a bit slow and he can become avoidant under stress or when tired. This is very true. Sometimes we can be right next to him talking and he just shuts down and we may as well be talking to a brick wall.

Although he said that S did display some autistic traits, he has been moving away from the autistic spectrum in his opinion. He no longer head bangs, he is far more communicative and he is very cheeky! While we were talking serious grown up stuff, S snuck round and pulled the lever under the doctor’s chair! He sank right down almost to the floor! I couldn’t stop laughing after that!

The doctor said that in his opinion, S isn’t autistic. Just to hear someone say those words was amazing. He explained to us that S has ‘low frustration tolerance'. Basically he gets easily frustrated and shuts down, which has in turn affected his social and language development. It’s like a vicious circle. He also tends to be very OTT with his emotions. He’s usually either really happy and excited or crying and upset. S is an introvert and when under stress he reverts to very introvert behaviour, which can sometimes indicate Aspergers. This is why doctors before have thought S might be on the spectrum.

There are many reasons that children behave in this way, but the doctor thinks that it may be because he’s lactose intolerant. There is a history of this in our family so it seems a logical explanation. In fact, we recently started giving B cows milk and her nappies have been terrible, although the doctor said if she’s intolerant too then it will manifest itself as stroppiness and tempers, due to her more extrovert nature. S apparently shows signs of an allergy because he sometimes has red ears, he has itchy skin, he has chubby hands and pockets of fluid under his eyes, amongst others. In truth, W and I were gobsmacked. We’d spent ages thinking that S was autistic, then to be told that he isn’t and it could be because of milk! We came out of the hospital in a daze, not really believing it.

Our next step was to do a food diary which we have been doing for a few weeks now. 2 weeks on normal food, then 3 weeks of a milk free diet, finishing with a week gradually reintroducing milk products to see what the effect is.

We are now on the exclusion part. He has been milk free since Friday. It hasn’t been too hard because we don’t really eat a lot of milk products. We’ve noticed a few differences in S, but I must admit to being sceptical. It could be a coincidence. I think maybe I think it’s too easy an explanation. Since going milk free, his speech has been clearer, he has been slightly more cooperative at times and has played more imaginatively. But he has also been a horror! All day today he has pushed and kicked B. He refuses to do what we say and his eye contact has been just as non existent.

We were told that the first week would be the worst, so we’re expecting (and hoping) that he will improve. At the end of the diary we have to go back to report our findings. I really hope that it is as simple as having a milk intolerance. But something at the back of mind tells me that it’s not going to be. Believe me, I don’t want S to be autistic at all…it’s difficult to explain how I feel.

I think W is content with the doctors explanation, or should I say he’s excited and hopeful that we can finally rid S of his frustrations. I know I should be the same. I’m not sure why I’m so reticent about it. I know I’m too impatient to learn the outcome and I’m expecting him to magically transform into a well spoken, well behaved child over night! Maybe because there hasn’t been a drastic change straight away, it’s making me doubtful.

I’ll keep you posted…