Paed appointment today, can I offload please?

[lou33]

Hi all.

I had an appointment for Ds2 today and just sort of need to write it all down, wonder what you all think. I don't want to discuss it with most people I have around me, and you lot would be perfect!

I was going just for a review , but last night I had a lot of questions whirling around in my head so decided to take the risk of looking like an obsessed over paranoid mother and write them all down to discuss. She was really really good about it, didn't make me feel stupid or anything negative, and in fact took my concerns a bit more seriously than I anticipated, which has left me feeling a bit odd iyswim.

First of all I mentioned that ds keeps collapsing onto his arms as I have already mentioned here, so she had a quick check but couldnt find a physical reason for that, so that will be observed. Also very recently (liike the last few days) ds has been slurring his words on occasion like he has been drugged. Then he will snap out of it and carry on as usual, she said this has to be watched too. Then I mentioned all these problems he has with people, repetitiveness, focusing on one thing etc, and asked her if she thought he might have sensory problems, as suggested here. She started questioning me quite closely and observing him, communicating with him etc. And she agreed he did seem to be showing certain signs that would not necessarily just be down to his age. then she started talking about it possibly being mild symptoms of ASD. She wants to continue to observe him through the opportunity playgroup (which is based in children's opd) and his interaction with children of the same age. She said that it could be sensory probs instead, but that the symptoms of ASD can often overlap with SI. So I was a bit unprepared for that. He does communicate with strangers from a distance, or even close up if he thinks he is not going to be touched, and is quite easy to talk to if the environment is not too loud or busy. However change this and he retreats into his own shell, playing repetitively with the same car, or talking about the same thing over and over. I guess she is just saying be aware for now and take note just in case it develops, but it might not isn't she? I thought she would say oh no everything he's doing is completely understandable because blah blah blah....

It was a very thorough appointment. She talked about statementing, and we agreed to wait until december, when we have finally decided where we want ds to go for nursery and when we want him to start. She's going to chase up the Bobath funding too, and referring him to Portage. And she's upped his lactulose as well as giving a stimulant in case it still doesn't work. I won't use it until all else fails though I think.

Sorry if this is a load of unintelligible waffle, I just wondered what you all thought? Well done if you read this to the end though!

Sorry I don't know the background to this, Lou33.

Would just like to say, though, well done for approaching the appointment as you did and then putting all your thoughts on it's outcome down on paper the way you have.

No matter what the circumstances, these two things are excellent ideas and a good way to deal with contacts with medical professionals, as well as to reassure yourself that what you thought happened actually did.

Many could use these, and adapt them to their own circumstances.

Hope you get some results with the particular issues surrounding your own son. Best wishes.

Lou - first of well done for going so prepared to the meeting. I'm sorry she didn't say 'no, no that's all fine' but she was just tkaing your concerns seriuosly and that was the right thing for her to do. oh God, I'm rubbish at saying the right things. Other Mums are going to say stuff that'll make you feel so much better - JimJams, Doormat, 2Under2, Fio2, Edisvold, all you girls where are you??!!!!
Lou I don't really know what to say, what I want to say is It'll all be OK but I know you must be really worried.

Umm, lactulose - I know about that! Lottie has had hers upped too and it's only suger water. At the end of the day if it stops her screaming in pain every time she goes to the toilet that's good enough for me. I don't want her having a poo to become a traumatic experience and would rather her have lactulose, double the amount, if it stops her from 'holding on' to her poo because she's scared to go. The consultant gave me a laxative as well yeasterday and said it may well give her stomach cramps but I'd rather it all be out than in so i'm going for it.

Lou - don't know what I can say about other stuff, wish I did. Think you're lovley though and hope you're not sad and wish I could give you a hug in person.

Lou - feel like I've let you down by not knowing what to say. You always cheer me up - why can't I do it back. can't even think of a joke to make you smile. I'm useless but still think you're lovely if that helps at all!!!!!

Hi Lou cyberhugs coming to you.I know you feel a bit down but what a wonderful paeditrician you have, so thorough and willing to take your concerns on board (even if she comes up with things you weren't expecting)and taken seriously as a mum.Our paed is the same wonderful, cannot fault him at all.
Lou being the brilliant mum that you are, if your ds does develop ASD at least you are not going to be shocked.You have been prepared in advance. Dont forget the paeds always tell us this, that and the other is going to /might happen. They dont really know themselves until it stares them in the face or the test results come back positive as they dont have a clue really.Do they? So until the time comes just plod along as usual and do what you do best and that is being a mum to your children.
Sorry for the rant.

Thanks for your kind words Butterflymum, I'm glad I made sense to you .

Tc don't be silly! You are not useless at all, you replied even if you didn't know what to say. I appreciate that.

I know lactulose is harmless, and the paed said I could give him gallons at once with no ill effect, but it's a nightmare giving it to him. As soon as he sees a medicine bottle he's off, wailing, covering his mouth, crying etc. I have to give him 30mls a day now, and he hates the syringe more than the spoon (can spit it all out using a syringe). It's just a battle of wills.

He was very good today considering how long we were there. We went early so he could try Opp Playgroup again. Freaked when one of the helpers tried to pick him up, but let another one get him out of the swing no probs. Then we were in the appointment for well over an hour. He was shattered at the end. Fell asleep in the car at 2.15 and is still asleep now, despite being transferred to bed! Don't kids look fantastic when they are sleeping?

Lou, happy to hear that you've got a good paed but very sorry that you may be looking at ASD, even to a small degree. Some years ago I heard a wise person say that its a terrible thing to tell a parent their child has ASD/(fill in gap) but much worse not to tell them. You did the right thing to think through the issues and get them out in a clear and coherent way but its gutting when you think there'll be a different response. SO know what you mean about not talking to usual circle. Reading up the thread is the Lact... for gut probs? At the Royal Free they clear out gut first with parafin oil (yuck) and then go on to regime of pro-biotics, maybe this would help? Acidopholus seems to be the key one. Sorry if this is no help. You ARE a good mum for approaching the appt like you did. GOod luck with Bobath, hear its good.

Sorry Doormat posts crossed. Thanks for that. I wouldn't say I was brilliant in the least but really nice of you to! Of course your advice is spot on. I guess I just need to hear some words of wisdom and sanity.

Lou,

I hate lactulose, but when recently in hospital nurse told me that it hides reasonably well in milkshake, which tends to cover the oily texture (which is what i really hate). Otherwise try strong orange squash, which cant cover the texture, but will improve the taste

worth a try ?

Posts crossed again Davros!

I agreee with whoever told you that, they were wise.

The paed did offer to give ds something to clear him out and start again, but I said I wanted to only go that way as a last resort. She has given me a stimulant for his gut if I want to use it in a couple of weeks, if the lactulose doesn't work.

I am trying to form a wait and see policy in my head, but it isn't that easy.My head is now swimming with questions (I need a pensieve like in Harry Potter!). Dh came with me and thinks this is a good idea too, though he does tend to try and block things out more than me,so that isn't surprising. The paed didn't say he did have asd/si, just that he was showing some signs/symptoms associated with them , although she said that he doesn't show other signs.Like I said to dh, whatever happens to ds we will handle it , but the possibility of cp and asd/si seems a very hard path to me. I sound selfish don't I?

And I agree the paed is wonderful. I wasn't sure up until today, as I have only seen her 2 or 3 times, but I've definitely been lucky being allocated her.

Thanks Easy. He hates drinking milk! Will try orange juice though .

don't believe it, typed out usual long response and lost it, 2nd time today.
Wanted to say understand about medicine, takes 2 of us to pin Lottie down and lots of cruel tactics like pinching nose but none of it really works and v stressful.
Also can sympathise with hospital, got here at 10.45 yesterday and left at 2.30. Too long!

Have you got wine or any alcohol at hnad? insist you and DH vcuddle up with a drink, bar of chocolate, and big brother or maybe one of the rubbish films I sent you!

Sending you big biog love - XX

OH lou - sorry to hear that you had a rough time of it today. I am glad though that you have a paed who is prepared to listen and to try all avenues before jumping in. Hopefully just typing it out helped. I find that sometimes works for me.

I used to try and remember all the things I wanted to ask and used to end up forgetting so I always go in with a list of questions. Have learnt not to care what the medical staff thought - my child; my right to ask as much as I wanted.

I think - from reading this that the paed. wants you to be aware and perhaps if it is something in particular that causes this behavious it might be highlighted rather than just making a sweeping judgement. I think she might also want to be better informed herself ( through her own observation etc) and your observations SO it might be nothing ... I am not sure about you but I have learnt the lesson that I will deal with it as it needs to be dealt with.

Be aware but not to fret about it - Sure easier said than done. Esp. for a control freak ( of sorts) who finds it difficult for things to be beyond her control. This for me was the only way I could deal with things I have faced over the past year.

And take Thomcat's advice re wine, chocolate, movie etc.

Oh Lou, so sorry to read this. It sounds like you prepared so very well for the appointment and the pead sounds fab.

The problem is though - you wanted her to tell you were wrong about any chance of ASD - and she couldn't. My heart goes out to you, but you have totally done the right thing as a parent in hilighting the 'possibility' of the condition.

Have no experience of this with ds, but only comparison I can draw is with current situation with dd. All I wanted is to be definitively told by the medical profession that I was wrong and neurotic , but they just couldn't do that.

I think a bottle of wine and a cuddle would be good medicine tonight. Give ds a cyber hug from me. xx

oh lou sorry Im a bit late replying but am poorly today just wanted to say I know how you feel my dd seems to have overlapping symptoms to her problems and I feel it all quite daunting TBH. I always feel like you after an appointment, its like you're living in a bubble and then someone brings you down to earth with a crash. Just remember how well your ds2 is doing, his speech is marvelous-I cant say that about my dd. He also is able to move around, crawling etc some of these things aren't ever acheived by some kids. He is doing really well dont forget that. Sorry this message might sound a bit melladramatic Im always like this when Im ill!!

And also glad you have a good paed

Thanks girls! You are all of course completely right, and just what I needed to hear.

Fio I think you have hit the nail on the head, I always get so down after an appointment. I just want to hear things are great etc , (don't we all?), but know deep down it isn't, yet still feel down. How silly is that!

Dh has been despatched to get me a pack of Tampax (which probably isn't helping matters) and Eight Mile to watch on video (need something unsoppy). And he has taken 2 of the kids with him to give me some peace.

Thanks all again ladies, you are stars!

Hi Lou-

Don't worry too much! The reason SI and ASD overlap is becuase the sensory problems are at the root of autism iyswim. A great book is one by Stella Waterhouse called "a positive approach to autism". It may be worth borrowing from the library to flick through - just becuase she goes into how sensory problems affect children with ASD's but also other conditions such as dyspraxia. Her view basically is that if you have sensory problems then you will act a bit autistic- anyone would with sensory problems. It's a great book and she's a lovely person- really understanding of the sensory stuff. Paeds don't really get the order right - they tend to say "oh look that child has an ASD- lets see if they've got some sensory problems" when in fact the sensory problems almost certainly came first.

A lot of these conditions do overlap- and it's all just labels. Ds is still ds!

Hope you don't feel too bad. I hate these appointements - they're so draining. Take care and veg out tonight.

Jimjams, thanks for that.I will try and get the book at the library.

I don't think she was saying he has ASD, but was unwilling to rule it out. Tbh I expected her to laugh when I told her about the sensory problems, but she said children with cp do often tend towards sensory problems for some reason. I think she was just trying to say maybe it is but maybe it isn't.

Just putting it all down on paper and having all these great responses has helped loads, so am feeling a lot better now.