Time to introduce myself -DS with ASD and epilepsy

[Widemouthfrog]

I have been following the special needs threads for a while, but have yet to post. I am feeling so low and overwhelmed today that I thought it was finally time to bite the bullet. I have a 5 year old DS who has just been diagnosed with an ASD and epilepsy. I have given him his first medication today and dragged him to school screaming and kicking - after all, if he has to take medicine he must be poorly and therefore shouldn't be going to school! I can't fault his logic. I came home and cried. It is difficult to admit my own vulnerability to family and friends, as I am so used to being positive so that they will stay positive around DS. I know you folks will understand.
I'm looking forward to joining in your threads, rather than just reading them

Hi Fatzak. Ds's seizures are night ones too. He is always exhausted at school but we attribute that to his ASD. We have already had an MRI scan -that is another trial in itself. Fortunately for us this came back as normal, but DS has an abnormal EEG. I hope we don't get too much problem with the meds as DS is already a complex little boy to handle. Good luck with your scans and appointments.

Hi Brioche. Yes, dentists are another minefield - fortunately we haven't needed treatment yet - DS is happy to open his mouth and have his teeth counted. That is as far as we have got. Good luck for next weeks appointment - I often get frustrated at how appointments never run to time - difficult with any child but torture with a child with behavioural issues.

Hi, widemouth frog, mumsnet is fab, even a bit addictive but very helpful. I have three boys - DS1(10) a bit spectrummy but has never come to the attemtion of the authorities, DS2(7) working DX of AS, was identified when starting school, had a very bad first year, significantly better now, more stamina etc.. DS3(4) NT (but copies his brothers' shouting), I am constantly caught out by his ability to tell porkies and bend rules as his brothers don't do this!

Hi there WMF, and welcome aboard the Mumsnet SN Special... I've got 2 LOs - DD1, 4, with a wealth of diagnoses, including Epilepsy, and DD2 who is 2 (a diagnosis in itself, imo).

What meds is your DS on? Some of them (a lot of the common ones and if he's just diagnosed it's likely to be a common one) come in more than one format - possibly he would be happier with a tablet ground up and disguised in a favorite food than whatever-it-is via spoon/syringe.

Hi widemouthfrog and welcome to mumsnet. I've found this board so helpful and friendly. I've got DS (7) who's NT and DD (nearly 2) who has global developmental delay and Cheeky Monkey disorder.

I wonder if the chemist can put something in the medicine that will improve the taste but not alter what it does?

Welcome widemouth. I have 3 DD, the youngest has Downs and ASD. I am impressed by your son's logic re the meds and going to school.
My girl doesn't have such an advanced intellectual capacity. Her strengths lie in other areas, such as chucking objects across a room with lethal accuracy. And an ability to get by on less sleep than Mrs Thatcher

Hi Widemouthfrog, Sorry to hear you're having a tough time - hopefully ds will get used to the meds soon, I suppose it will probably take a while for his body to adjust to meds too??

Hope today is a better day.

Hello Widemouth. How was school run today? I have DS2 who is speech delayed and disorded with ASD tendencies - and we've had some horrendous school runs. A lot of shouting all round! Hope your day is better.

Thanks for replying everyone. I've only just got in as I have been to an NAS branch meeting. School run was horrendous this morning. The instant he woke up he told me he wasn't going to take his medicine because the doctors weren't here and they wouldn't know! Again, I can't fault his logic. Swiftly administered (dad restraining him) and a slightly shorter tantrum, but he imploded on the way to school. I don't think it will matter how we present the medicine - it is the fact that he is being made to take something in his mouth that isn't by choice. His food control is so strong anyway, and I've thought of disguising it, but I know he would spot it -which could lead to further food refusal.

I'm feeling a lot more in control today, but I got a better nights sleep which always helps. He is on tegretol (carbamezidine?) - could it be causing behaviour changes already? He is only on a tiny 20mg dose 2x a day as we build it up gradually. It is so hard to tell because of his autistic tendencies, but he is particularly difficult at the moment and trying to run away at every opportunity. He has even told me himself that he is having a tricky day! His TAs will earn their money in school today I think (he has 1:1 support). Anyone ever experienced side effects with these drugs - ASD children tend to be very sensitive anyway imo.