Is it "normal" for things to get worse and not better?

[pucca]

I have posted here a few times about my ds (3.10yrs) he has a conductive hearing loss (2 hearing aids) impacted bowel (on movicol) sleep disorder (on melatonin fast and slow release) global developmental delay and fairly sure ASD.

We went on holiday, total mayhem, ds HATED it and wanted to come home from day one, he would only walk certain routes wouldn't alter and was a total nightmare with sand - even when we hadn't been the beach he had to stop every 10 mins and take his shoes/socks off (me wiping his feet even though there nothing there).

He licks everything (remote controls for eg) he smells every morsel of food before even thinking about eating it (even stuff he has eaten lots like certain choc), yet will chew tissue paper, and still eats awful things, i caught him eating ash out of a ashtray on holiday.

He just seems to be getting worse and worse, i feel like i am losing my mind. The local clinic with paed's have now said because ds won't interact they cannot assess him, so have referred him to CAHM's (waiting for appt now).

I could go on and on...is it normal for children with problems to get worse? i just feel so alone atm.

Sorry, but in this corner, I would say that the answer is "yes" - DD1 is 4.6 and is much worse than at 3.10.

Sorry your holiday didn't go well. I find with DS1 4.8 (ASD), his anxious behaviours have increased as his understanding has developed. Have you got access to an Occupational Therapist? Sounds like a sensory assessment would help.

sorry things aren't going so well at the moment.

When dd1 was 3, holidays were a nightmare. she is 5.8 now, and a LOT better, although still reverts to set routines etc when away.

it is a lot of change for her, going on holiday - the place is different, smells different, sounds different, wrong chairs/plates/bed etc.

do you have any intervention at all, eg portage? they can be very helpful with sorting out routines, and suggesting ideas for settling too.

have oyu thought about dietaryintervention at all? sometimes children who eat odd, non-food things can be seeking certain substances. dd1 got a lot better about food/licking/chewign random things once we sorted out her diet a bit.

I know exactly how you feel - the number of times I have sworn we are never going away again, never going to do anything out of the ordinary, going to stay at home and rot (sorry, but it feels that way soemtimes) - dd1 managed a 3 week holiday to australia last summer, and recently, we went for weekend away, and it was dd2 who acted up, and dd1 was trying her hardest to calm her down

it can get better, although I would say the problems don't go away, they just get changed for different ones!

Thanks everyone, the paeds have basically thrown their hands up so we just have to wait for CAHM's now. I know ds had a blood test done to see if there was any deficencies (sp?) and all was ok.

Life is just so hard with ds, i have to warn him a good while before about things like having to go out, to sit at the table (yeah right like that happens) as any sudden changes make him have a meltdown, wen i said it was bedtime last night he smacked me so hard he left a handprint - i just feel exhausted all the time.

Silverfrog - how does the diet change work? not looked into that yet, although everyday he gets worse and worse he just point blank refuses, getting fussier and fussier.

Pucca just a thought about impacted bowel and movical you might have already tried this but we were advised to do this and it really helped. Over course of three or so days we increased the movical dosage until DS's poo was gravy like (sorry to be so graphic) then decreased the dose slowly to get to right consistency of poo. Over about two months we were able to cut movical out altogether now we only use if DS doesn't go for more than two days which is rare.

Does your DS get indigestion? MY DS did/does and this improved when bowel was not impacted but doc said just coincidence.

My ds is also really fussy eater and getting worse. Its really hard to know what to do when they just refuse to eat. Hope someone has some good advice

what sort of foods does your ds end up eating?

does he gravitate towards gluten and dairy foods?

there is a school of thought (if you google Marilyn Le Breton you will find some info) that diet can really affect ASD typr stuff.

Fussy eaters can be completely affected - which is maybe why they are being so fussy - they reject foodstuffs which don't give them the reaction they are looking for (theory is that gluten and/or casein (found in dairy) cannot be digested properly, and the incomplete breakdown of the proteins leaves a substance which is addictive)

IT used to be the Sunderland Autism Research Unit that tested for it, I think they have changed their name now - will try to look it up later.

Anyway, you can get a test done (urine analysis) which shows whether it might be an idea to take glutenand dairy out of the diet.

or, if you read up and think it sounds like your ds, you might want ot give it a go anyway.

dd1 has been gluten and dairy free for 3 yearsnow, and it is the single most important thing we have done for her. she is a different child.

If you decide to try it, and ithdraw gluten/dairy, things get worse in the short term, as they "come down" (literally) from their high - this can be how you tell it is effective, iyswim. dd1 was a horror - lots of screaming and shouting and meltdowns. can last a couplpe of weeks.

but she eats a muchwider range of foods now - still restricted, but acceptably so. and she has changed so much. she was pretty much non-verbal before, and when we withdrew gluten she started talking. she hadno pain response before, now it is appropriate. most of all though, she is now very much in our world - before she was blanked out a lot of the time - very dreamy and trance like.

Kurly...Thankyou, tbh it is a total nightmare to get ds to take movicol at all, he is supposed to be on 3 X a day lucky if he drinks 1 he just point blank refuses, and if i sneak it in he knows.

I did ask if there was a alternative but was told there isn't.

Silverfrog....He is a dairy junkie! he is not as bad as he used to be, all he used to want was milk, yogurt and cheese. He isn't as bad now, but does drink quite alot of milk, and flavoured milk and he still loves cheese and yogurt.

What sort of think did you change to? i think he would just end up starving himself, he is a stubborn mule i gave him hotdogs as a treat once and now all he wants is hotdogs (bloody cows eyelids!) for every meal, he is a total nightmare

Things not thinks

hmm, if he is that restricted, I'd read up on it, tbh.

there'sloads of threads on SN about GF/CF diets, and sunderland protocol etc.

worth looking into, imo.

we swapped evereything dd1 would eat (gluten junkie, apart form bread) for gluten free substitutes. took her off dairy, and gave her rice milk (she won't touch soya milk) we ahve recently tried her out on goat's milk (slightly differetn protein) but it didn't agree.

so she has GF pasta. GF bread (actually, she will only eat bread very recently - would never touch the stuff before, either normal or gluten free). sausages etc, you can get GF ones.

it is quite a lot of work at the beginning - lotso f reading of labelsetc,but you get used to it.

dd1 cannot have any gluten at all (no oats, wheat, barley or rye), any dairy at all (have tried A2 milks like goat and buffalo, but no good), any sweetners, colourings or flavourings (even "natural flavourings" is just naturally sourced MSG)

must go - bedtiem for the dds, but will be back a bit later

Thanks silverfrog, i will look into it for sure...willing to try anything at the moment.

BAck again

Marilyn Le Breton has written a coule of really good books on it - the first one, Diet, Interventions and Autism (or somehting like that) is really worth a read. you can probably get it from the library.

she describes all the ins and outs, and iirc, one of her boys was a really fussy eater, and she was faced with him refusing all food for a few days when she first put him on the diet.

dd1 was easy compared ot some. if I could find acceptable (to her) substitutes, then she mostly went along with it. some things (soya products) she wouldn't touch for love nor money, so yoghurts etc I had to give up on.

others, like substituting weetabix (she used to love it - would eat 3 weetabix fo rbreakfast when she was about 20 months old!) fro rice porridge (same consistency at least) went relativelysmoothly - I had ot bung loads of raisins in to persuade her, but she came around pretty quickly.

she rejects a lot of foods by smell - and if she says no she means it, no persuading her!

she does only eat about 4/5 different main meals, even now, but amongst those are, for eg, spag bol, and I can easily vary the veg I put in, so I'm not too bothered overall.

if you google sunderland ARU, it brings up the pages for the research centre where the rine tests are done - there's a link for the test, and info about it on the left hand side. having said that, there are a few people on the boards who have just tried the diet, rather than testing. I did get dd1 tested - she was off the scale for gluten peptides, and we saw a big change in her when withdrawn. we easily notice now, in her behaviour, if she accidentally eats something she shoudn't - she gets a lot more anxious, agressive,etc.

DS didn't like movical either and wouldn't tolerate whole packets added to drinks so we used to mix small amounts into virtually everything he eat and drank.

Not very scientific I know.

Riven...just want to send you both a hug

I have a district nurse coming on Monday, to give support with the bowel issue...so hopefully she will help with that.

I have also got in touch with a private Occ therapist, who seems fab. It is £250 for an assessment and sensory "diet" so i am going to see her too, i get high rate care DLA for ds so that will pay for it, can't really afford to but what do you do? if it helps ds in any way then its worth it.

look at www.treatingautism.co.uk -loads of info on gluten free, casein free. has made definite positive things for friend son. (went to autism clinic in london - v helpful_

also try to find sensory trained OT to see if can help.

look at www.treatingautism.co.uk -loads of info on gluten free, casein free. has made definite positive things for friend son. (went to autism clinic in london - v helpful_

also try to find sensory trained OT to see if can help.

Do you think the Occ therapist is a good idea? she is trained in sensory integration. I have organised for her to see ds on Thurs, she will observe him for an hour in preschool then come and see me.

Also wanted to ask...is it normal for it to be so drawn out? we have been seeing paeds for 14mth now with no formal diagnosis of anything...how did it go for all of you?

bump

Sorry to hear your problems. Life has ups and downs for us, and especially if we have a disabled child they seem to be bigger ups and downs compared to others. But remember the good bits, they are things to look forward to.

Try to get some help. See my reply to parent who wrote "DD tried to stab me this morning with a carving knife".

Try to contact various people to see what help, advice and training they can give, to both you and school, including your school teacher, School Governors, your local special school(s), local and national autism support groups, the Family Information Service, and the national KIDS charity working with disabled children (www.kids.org.uk).

Good luck.