Panic! I think DS is in the midst of an autisic regression

[sadminster]

DS is 2.9 being assessed for a severe language delay, has a number of 'autistic traits' but he seems to be getting worse very quickly.

A month ago I have video of him grinning, turning to us and pointing out an aeroplane flying over, dancing, laughing, patting his baby sister (saying 'gentle') & laughing when she burped. Now he is withdrawn, more aggressive, looks ill & tired, everything as to be coaxed out of him, only language is labelling. He suddenly has eczema and horrible stinking loose stools. His concentration is definitely worse.

Anyone got any idea what I should do?

[bubblagirl]

sadminster do you have melatonin for him i found when my ds was not sleeping my goodness he was pale dark circles under eyes behaviour was bad , sensitivities were cropping up all over the place that he never had before

to get him out the house well one week we didnt leave at all it was terrible huge meltdowns etc

took him to paed and got melatonin and what a difference his meltdowns stopped the colour returned to his cheeks , his sensitivities lessoned he would walk with me outside instead of being forced into a chair just to get out

he ate more generally was a different little boy and was all down to sleep he just couldn't function poor thing now well come along leaps and bounds none of the old problems are here unless ill or tired

[sadminster]

mrsT the peanut thing was amazing - I ran out of peanut butter when we went GFCF (he usually has it on his toast every morning) & finally got around to getting some more last weekend - within 2 hours of eating it he had 4 awful nappies. Since we've stopped again poo has been normal. I didn't notice any change in his behaviour but he was certainly uncomfortable from a sore tummy.

Sleep isn't brilliant - he's okay at going to bed but is disturbed during the night & wakes up too soon. I think he's be much better if he slept more.

[saintlydamemrsturnip]

Yes you can get floridix that is gluten free or spatone which is an iron supplement that consists of water you add to juice. Comes in a big orange box, Boots always stocked it.

DS1 cannot have peanuts either. You're the first other person I have met who has said that.

His diet sounds fine btw if he is eating at CM's. DS1 didn't eat for years but thrived on it still (never lethargic).

How's his sleep? I would rule out other causes of the lethargy.

[sadminster]

He's had a cold & isn't sleeping long enough - two days with the CM are really tiring for him

Thanks for the floridix recommendation - I don't think he'll go for it but he might take spatone with his juice.

Had some tantrums yesterday which is unusual, tip toe walking is continuing but poo is fine now & skin better.

[morningsuncanslay]

sadminster~going back to basics but have you checked his temp ?..as infections in children present with tiredness and behaviour changes.
has he got a rash or red throat etc?

[juliaw]

There is an iron supplement from health food shops I think its called floridix and i think it may be Gluten free, but you would need to check.

[sadminster]

I just thought I'd update - we're still terribly worried about ds.

He's okay on the GFCF diet (we also found that peanuts seemed to cause problems so have cut the p'nut butter out) - eating pretty well (too much soya thought), having the multi vits & omega oils most days. He's eating really well with the CM - fish, veggies, fruit - but is very restricted at home still If anything he's now constipated - he's pooing only every couple of days, smells less vile.

Skin is looking better.

BUT he looks awful - we're really concerned, took him to the GP last week & are going to take him again asap. He is pale & totally exhausted, dark rings etc. HV is concerned that he is becoming anaemic - we haven't managed to find a iron fortified GFCF cereal. I'm worried we're doing more harm than good.

CM was concerned today that he was spaced out (far more so than his last session on Monday) - his eye contact is good, but he is pointing much less than he has been & having more zoned out moments. He has also started walking on tiptoes which he has never done before (been doing it for three days now) and making strange oinking noises which might be a verbal stim He has fallen asleep on the sofa for daytime naps three times this week which is extremely unusual.

Not sure what to do.

[jabberwocky]

sadminster, I know it must be so terribly hard on you and the whole family. Your dd1 is old enough to be bewildered and afraid of everything that is going on and is probably taking this out on you. Have you sat her down and had a heart to heart talk about your ds? Perhaps think of ways that she can help? Someone just pointed me to a website that looks really good. I haven't explored it fully yet but here's the link It's TACA - talk about curing autism.

[sadminster]

I don't know re the poo - yesterday he had 2 very running ones then a normal one. He doesn't seem in any discomfort. Have a stool sample pot for him now. Had another pretty bad night last night, he's going down okay but then waking a lot. He was subdued yesterday - had a cold - but pretty cheerful (one of those days when I let myself think there's not much really wrong - then I notice the odd stuff & it makes me feel shit again).

So hard to juggle everyone - dd1 i being so argumentative, I feel awful if I leave ds to his own devices even for half an hour (but exhausted by 1pm after hours of 'interacting'), dd2 has terrible colic & is pretty much ignored.

The things that I was feeling better about - ds is pretty good at taking turns with playdoh/drawing seem to have turned into obsessions & are now on the list of 'odd' things. He's so quiet it is unnerving - I hate this time of day with 12 hours of on my own stretching out ahead of me. HV said the sn nusery is almost certainly going to be closed because of swine flu.

The lack of diagnosis is so hard - I thought I'd got to the point where I'd assume he had ASD (even if he doesn't his language problems are so severe that the therapies are pretty much the same) and I'm determined to just get on with it then I read something (yesterday it was PEACH's 2-5% of autistic people are independent) and I want to start crying again

[jabberwocky]

sorry for the double post

[jabberwocky]

weird how common impaction is with our kids isn't it? There is finally a study going on looking at the gut/brain/immune triad. I am really looking forward to seeing the results.

[jabberwocky]

weird how common impaction is with our kids isn't it? There is finally a study going on looking at the gut/brain/immune triad. Finally!!!

[saintlydamemrsturnip]

We had impaction too!

Actually ds1 won't eat breakfast either. He usually has one or two apples whilst running around and that does him until snack time.

[jabberwocky]

So sorry the weird paradox is that our kids need sleep even more than others but have a much harder time getting it. Ds1 always had a terrible time going to/staying asleep. At one point out of sheer desperation I set up a dvd player in his room and put on the most boring dvd I could find (baby einstein, lol) and that helped a bit. Melatonin has worked very well for us but I don't know if there is an age factor there or not.

DS1 also had a thing about not eating until around 10 am. Can you get him to take some juice and maybe a gluten-free cereal bar? Something that is more on-the-run vs having to sit down and eat an official meal? Ds1 would eat in the car sometimes when he wouldn't touch food otherwise.

I would also really try to push for something for yeast like diflucan or nystatin. Are you sure he doesn't have an impaction? That can also creat weird-looking stools from the seepage around the impaction. A little too much experience with that one but not in a year so it can be fixed!

Is there any way someone can watch him for a few hours while you do something special with dd1? That might help her to feel better.

[lingle]

Oh I am sorry.

Lack of sleep changes everything doesn't it?

[sadminster]

We had a terrible night with ds - he flipped out at the drs, went to sleep late then woke every hour pretty much. He whining downstairs now ...mornings are really difficult. He'll refuse to eat anything until mid morning & be in a vile mood the whole time. Don't want dh to go to work It is so difficult to be continually patient & good humoured.

There's a sn nursery here that they can be referred to without a diagnosis, will try & speak to someone about that today. Apparently CDC referral has been sent.

dd1 (nearly 9yo) is starting to react to all the stress too.

[saintlydamemrsturnip]

It in part arises because so much testing and research is done away from the child's natural environment. So the child is seen at their worst. All the research I do is naturalistic ( it sort of has to be for the most severely affected) and a big theme is unexpected ( in terms of the research literature) competencies. But there's a lot of it! My view of autism at the severe end at least is that many children ( and presumably adults) work very hard to communicate despite their very great challenges.

[sadminster]

mrsT thank you for saying that ... I think it was one of the most upsetting things I've read. I really hate the way medicine/science talks about people with autism.

NHS SALT manager called at 6:15 - wants to come & do home visit (her & the original SALT) next week. She sounded v. defensive re our second opinion.

[saintlydamemrsturnip]

Oh my that shared attention as an implement thing is rubbish. I carry out research into children diagnosed with severe autism and without wishing to downplay the challenges ( there are many of course for the kids) I see plenty of moments of shared attention for enjoyment and for referencing and for lots of other things the children are not meant to be able to do.

[TotalChaos]

sorry it continues to be a stressful time and you are still in the dark about referrals/timescales etc.

agree completely with the saintlydame about childless friends - you don't get the "oooh look at darling Johnny's wonderful telephone manner/pretend play" forced upon you, and IME childless friends don't tend to underplay things, as they will trust your judgment and will respect that if you are concerned, you will have good reasons.

[sadminster]

thanks izzie, I'll mention it to the GP (for all the good it will do).

DS has had a great couple of days - CM yesterday, at home with us today. We did playdoh, drawing, Lego, bubbles (his favourite things) then he & dd1 played in the paddling pool for ages & then played rough & tumble for an hour. No language at all - he's babbling constantly & lots of shrieking. Had a major strop when I tried to do a puzzle with him this morning. No longer bothered when dh leaves for work - used to signal 20 minutes of sobbing.

I was totally depressed by something I read about shared attention in children with ASD 'just' being another way to use you as an implement. Panic is subsiding though .. kind of grim sadness now. Totally doubting our ability to organise an ABA program too.

My SALT is on holiday for the summer, HV is off sick so I haven't managed to find out what's going on with the NHS referral. God knows how long the paed will take (choose & book).

Poo is just as horrid as always [pretending I wasn't hoping for a miracle]

[izzie123]

One thing that hasn't been mentionned that you may want to talk to your GP about is the possibility that it is linked to epilepsy. Somes types of epileptic syndromes don't necessarily present with what is normally thought of as epileptic seizures and because the brain is constantly having epileptic activity it can lead to the child withdrawing and losing skills. Have you noticed hime staring, or seeming absent/day dreaming for a a few seconds/minutes or going into states of altered awareness? These could be absence or partial seizures. If you think this may be the case, then ask for an EEG.

[fanjoforthemammaries7850]

that must be lovely...all my friends/acquaintances/relatives have NT children..

[saintlydamemrsturnip]

Honestly it's my friends in the same situation who have kept me sane. I have another friend I met online, then I moved by coincidence just around the corner from her. She has a child with a similar level of difficulty to my own and we talk almost every day on the phone, and of course get together sometimes. She's a very very good friend and 'gets it' because she's living it. We often say we keep each other sane.

[fanjoforthemammaries7850]

good plan, must sign up for CAT.