Autism/asd

[logi]

Hi ,my son had his first visit to paed. today and i thought more would be discussed.
My son 5 had a dx in sept. so this is still new to us and he had a blood test due to a poor diet and at this visit we were told he needs iron supp. also paed. wants a chromosone (sp) blood test though we were told before he wont need this.
But apart from this all that was asked was what he was like as a baby but all this was asked before and if we had accepted dx.
Im not sure what i expected but i could have been given iron level results from GP or a letter.Is this usual?

anyone please?

No idea what follow-up paed visits are like post-dx as DS isn't that far down the road, but i would expect a bit more than a few questions re: early development

I am sure someone else will post with some experience to share.

thankyou for your reply,yes id thought there would be more and i wanted to ask things but ds was playing up.

Visits to the Paed post-dx for my two (ASD) usually consist of the Paed asking how things have been since the previous visit. He then goes through each issue and asks more questions, and then usually tells me about strategies that might work.

Personally I would be expecting something a lot more useful than the appointment you had.

Morning Logi, i think the service you get from Paeds varies greatly. My own ds has been under pediatric care since he was 2 years old (he is now 5.5) we have never seen the same one twice, so our appointments consist of covering history (they seem unable to read their notes)

The Paed should be responsible for referrals, has he made any?

Do you have anyone who can go with you to appointments, so you have the opportunity to have a chat without your ds?

hi,thankyou all for replying,
claw3,my oh was at appointment with me and i was going to suggest my son going out with oh but i wasnt sure if she wanted to see ds as its all new to me,my son still attends a child developement unit and ive just dropped him off ,they asked about paed. and i dont think they were impressed they said i should of been seeing someone else so they are going to speak to the doc at the unit i think.
when we were going over the past i felt it must be all in his notes we only started this in feb.

My dp came with me to last paed appointment and i told paed, that i would like to have a chat without ds being present. Dp waited outside for a while, so we could chat, then we went and got dp and ds, so Paed could see him. Paed was happy to do this, dont be afraid to ask.

Perhaps next time write yourself a list of questions to ask and ask to chat without ds being present. Highlight what your concerns are and ask what help is available.

For example my ds has a extremely poor diet and is anemic (food phobia and orally defensive) Paed's in the past have referred to OT, CAMHS, Dietitian and we are currently waiting for a referral to feeding clinic.

Obviously what referrals are made, depends greatly on what problems your ds is experiencing.

my ds the same poor diet anaemic,they are trying to get him to try food at the unit but he wont he gets very distressed,we are waiting for his perscription for iron medication but i know it will be difficult/impossible to get him to take it.

Logi, my ds took sytron iron supplement, I had to disguise it in drinks, although i did taste some myself and it does have quite a pleasant, sweet taste.

I have recently been advised to stop this supplement because ds's iron levels are back to normal now, even though they wont stay that way because he doesnt eat anything with iron in it. Apparently too much iron can damage internal organs, so we have to stop his medication until his iron reserves drop again!

Our first referral for the eating problem was to a dietitian, just to rule out any physical causes.

Dietitian has now ruled out any physical problems and has made recommendations to Paed for referrals to CAMHS and a feeding clinic, which we are now waiting for.

Im not sure if this would be the right route for you, but it wouldnt hurt to ask at your next paed appointment about dietitians, CAMHS and a feeding clinic, if you havent already.

I write down anythign I need to tell the paed that I can't discuss with ds there, and give that to them to read. It helps too for them to have a paper copy of what I've said on record.

They should be identifying areas where support is needed and making referrals - that is what follow up appointments should be for.

claw3..sytron is what the paed. mentioned so maybe we will get that,i always suffer with anaemia,im given tablets then wait until im feeling ill before another test then more tablets ...its a pity they coudnt keep on top of it with a low dose iron med. my ds like yours has a bad diet so would need something long term really.We are to see a dietian which is good(i hope),what do they do at a feeding clinic??
Chopstheduck i think i will write things down next time as if ds plays up i get too flustered and cant wait to get home.

Dietitian is good, if there is a physical reason stopping your ds from eating ie not being able to swallow properly etc. Other than that they didnt tell me anything that i didnt already know ie brown bread has more nutrients than white etc and try to change to brown bread. Ds is extremely resistant to any change in his diet and has eaten the same 5 foods since he could eat and would rather starve than accept change.

Feeding clinics, look at the physiological reasons for children not eating ie phobias etc

Good luck with your next appointment, hope it goes better than your last.

Theres no physical reason why he doesnt eat i think its about textures (sensory) he tends to eat beige food waffles,smiley faces chips,bread,plain spaghetti....the only fruit is raisins and chocolate and haribo sweets (only the blue pack).
He will move if you sit with him with a "normal" dinner and makes you wipe your hands if you are eating and need to touch anything of his.
Hopefully things will go better next time,thanks for your replies

Logi exactly the same as my ds, we have bread, chips, ready salted crisps and honey hoops without milk. No mixed textures and food has to be cold and he has to be able to eat with his fingers. If anyone touches his food but him, its contaminated and he wont eat it. If anyone elses food goes near him or is spilled he will run away!

I would ask paed about OT as well.

Now i must get on with some housework!

Good luck again.