I'd have a breakdown but... I can't afford to.

[HeartOfCrystal]

Things just seem to go from bad to worse lately. After finally getting ds a dx for asd, i actually thought things would change.

I thought my son would get the treatment he needed, i thought so-called health professionals would take my concerns seriously, i thought wrong.

After getting dx in april, my ds has still not had any salt therapy at all. He is still completely non-verbal. After waiting months for a pead appointment to voice my concerns,the previous two had been cancelled by the pead( i suspect my ds has epilepsy, gastro problems and his anxiety is through the roof)

i thought finally i can get some help so i made a list of all the things i wanted to discuss with the dr. I had toy cars in my bag for emergency meltdown limitation, gets to the appointment. ds takes an instant dislike to the dr. Starts attacking me kicking, biting and scratching because he wants to leave, dr sits there doing nothing. I tell him my concerns while trying to guard myself from ds all while he is screaming at the top of his lungs. Dr's response, sorry but i can't help you with the epilepsy, gastro issues or anxiety but i will send him for a blood test for common childhood illnesses and put you down for a newsletter about community events.
At that point i asked him if that is all he could do, he said yes, but helpfully added " i don't know how you cope with his behaviour" That was the point i stood up cut him off mid sentence and basically said thankyou for your time, but as you can see community events newletters isn't going to help my situation and walked out with my now very distessed little boy.

Now am worried i acted badly, and also to ask is there really no form of tests to do for epilepsy and gastro issues?

Thanks in advance and sorry it was a long one.

No you didn't act badly don't blame yourself at all. Some doctors don't have much idea on how to behave with people in my experience of them, when I went to them with concerns about my son, who was subsequently diagnosed with ASD I was put on anti depressants for being neurotic.

We got our diagnosis in January.

Can you chase up your paediatrician appointment these are things you could discuss with them.

Sorry you're not getting the support you need, again you really need to chase you paed and make sure all the referals have been made. Are there any support groups nearby you could get in touch with? It makes a difference being in touch with other local people going through the same thing?

xx

Hi both thankyou for the great advice.

I think one of the reasons it is bothering me so much, is the constant worry. I didn't think it would be a magic appointment by any means. I just hoped he would offer some advice and maybe make some referals.

I got a letter today as a result of that appointment, saying ds1 has a medical asses in Jan, and giving me details of where to go for his blood test. I will definately be taking your advice, and writing the pead in question a letter. Just to make sure i haven't missed anything. Ds1 was making it more then a little differcult to concentrate, so it is possible.

I have looked into support groups, but it's quite far away from where i live.

Thankyou both for the advice, hopefully things aren't as bad as i think xx

Very very good advice already given.

You really have to keep pushing to get anything done or offered.
This is very wrong.. But sadly it's the way it is.. Asd isn't like an illness that they can easily treat nor is it life threatening ( as it stands by itself without any epilepsy or associated depressive conditions etc).So you get sent onto the passy passy roundabout.
There seems to be distinct stages surrounding asd..
Fight to get a dx.. Fight to get referred to the right people to access help.. Fight not to get palmed off because waiting lists are long and budgets are rubbish.
Fights to get the right help to access an education.. The list goes on and on.. But just when you think that you have managed to get it sorted you are hit with another issue..

It's figher fighting the whole time... It's rubbish for your stress levels, rubbish for your phsyical and mental health. It's rubbish for personal relationships. Most of all it's rubbish for our dc's.
And when you need a break just so you can breathe and regroup.. You have to fight for that as well.

I'm not trying to make you feel bad.. More trying to let you know it's normal.. It's wrong but I can't think of anyone on this board who hasn't been through it.

And it's IMO this board and support from friends family or groups that will see you through.

Try and find some time for yourself.. Dh and I have a date night once a month.. It might be a m&s meal for two, and a dance to a slow song, when the dc's have eventually gone to sleep.

Eat bananas because they help your body create happy chemicals.. And make sure your eating.

Just to add to my huge post don't be afraid to ask for referrals

just say I'm very worried about 'x' be ause of xyz , who can you refer me to.

I don't think you acted badly. I think you were remarkably restrained considering the level of uselessness he demonstrated. I'm afraid that unless you chuck your toys out of the pram then nothing will happen. So get nasty if you need to - you and your family are worth fighting for.

Stick round here as there's excellent advice aboout.

we had a very disappointing meeting with our paed last year too. he basically said he couldn't do anything for ds's issues. i had to ask for a referral to occupational therapy for him and he did eventually refer us. the o.t. said i was right to ask as ds has sensory processing difficulties. since then, we've had more regular salt and ds has a place at a language unit.

what i'm trying to say, amidst the waffle is, if the paed says he can't help with your ds's issues, ask him to refer you to someone who can.

community newsletters indeed. i applaud your response.

Hi there,
Just to let you know about Cerebra-they have vouchers for Speech Therapy which may be useful for you if you wanted to seek private input.
Do you know anything about Hanen? The "More than words" book is a useful tool to give you ideas re communicating with your child especially if they are non verbal.
Keep posting!

I'd never heard of Cerebra before, thanks for that. x

Hello there Heartof.
I usually just lurk around here rather than posting, but I just have to send you some solidarity. There's some good advice in the earlier posts; keep trying for SALT, OT, Physio, whatever your DS needs,

BUT, for the paed to tell you that he can't help with suspected epilepsy is just plain wrong. You need to write to him, copy your GP in, and outright ask for a referral to a paediatric neurologist as well as the other services. The neurologist might test for epilepsy (if they agree it is a possibility from what you tell them) with an EEG or brain scan. In my experience this involves getting the DC to sit still for quite a long time while lots of electrodes are stuck to his head ( about 28 if I remember rightly). each is attached to a wire, and they record the brain waves while the child is playing, sleeping, watching strobe lights etc.
They may also do a MMR brain scan to see if there is any brain damage or anything unusual about the development of the child's brain.

Your story sounds similar to mine, and many others on here - there's a wealth of experience of epilepsy on here, some posters have DC's with very severe epilepsy, others have mild cases.
I'd advise you to keep written records of any unusual 'episodes' and to video any suspected seizures if you can to assist when you are trying to explain to the doctors.

There is help out there so keep trying if you know there's something wrong

chuckeyegg
You are welcome. They have a fab book lending service with lots of books on ASD. Plus its all free

Thankyou all for the words of support, think am just having a bad year month.

It just seems madess the lengh of time we have to wait to see a pead, who then says "ah sorry, no can do but heres a newsletter instead"

Good news is my new doctor is quite forceful when it comes to my son, he is more then willing to bang some heads together for me.
will hopefully be seeing him this week.

The epilepsy is my main concern, my mum has it (through a brain injury) so i have a fair idea of what to look out for.

I am fast learning to fight for what he needs though, ask the poor woman who rang me up to cancel the second pead appointment, the day before it was due. Not one of my finer moments sadly.

I have only posted a handful of times on mn, it can be a bit snappy in the other areas, so i think i'll stick to sn boards. Everyone has been great xx

How ridiculous! A newsletter?! I hope he was embarrassed.

Not sure what gastro issues your DS has but it might be worth googling GF/CF diets (Gluten and Casein free) as they seem to help some ASD kids.

Good luck with everything.