Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

1 2

Original poster

Really freaked out - please help!

26 replies

Pages · 26/02/2006 17:07

Hi everyone

Haven't been on mumsnet for ages - sorry. But after having DS2 6 months ago, have been through the hardest time ever in my life trying to cope with the demands of having a child with SN and a new baby, not a minute to myself, crying with the stress of it all almost daily, was just beginning to feel things were looking up and I was getting my life back a bit. DS1 is now walking and making progress every day and although it is slow was feeling okay about it until this week.

Just had a week long assessment for DS1, multidisciplinary thing, hated it last time and wasn't looking forward to it this time. Paed told me that DS1's to be tested for Retts Syndrome, which although normally only occurs in girls can very rarely occur in boys and the reason she thinks he could have it (although she says it is only a small possiblilty) is because he keeps handwashing/handwringing - basically clasping his hands together a lot. It is one of the main manifestations of Retts for those who didn't know.

Please please can anyone tell me if it is something other children go through at all? If you don't know what I mean, it is basically clasping his hands together a lot, he also puts his fingers in his mouth a lot too. I had noticed it but had actually thought it was good because he has always been very right hand dominant and not used his left hand very much. Now he has started using it a bit more and I thought the hand clasping was him getting used to the fact that he has two hands and getting the sensory feedback that he so needs to develop his fine motor skills which are probably his worst area.

When I got home I looked up Retts Syndrome on the computer and because nothing else matched his problems or developmental pattern I dismissed it and didnt really worry. Today I am tired, drank too much last night and feel hung over and really anxious. I can't stop looking at DS1, he is holding his hands together or putting them in his mouth almost constantly when he is still. It is a fairly recent development I think, although as I said I spotted it before but wasn't worried, so maybe didn't notice it as much.

Please can anyone reassure me - I don't think I will sleep tonight for worrying.

OP posts:

Blu · 26/02/2006 17:14

Pages, Hi.just wanted to say how very difficult life sounds, and how very sorry I am that a new worry has snuck in just as you were beginning to find your life again. This is very unfair.

I know nothing at all about Rett's - but this does sound a very long shot, doesn't it? Medical people do have to eliminate things, just to be sure.

Keep bumping until someone a bit more knowledgable comes along.

Blu · 26/02/2006 17:15

PS congratulations on your baby - and DS1 starting to walk.

sparklymieow · 26/02/2006 17:17

I have a friend whose daughter has retts, I have also met a boy with Retts. He has mosic retts because its very uncommon for boys. how old is he?

anniebear · 26/02/2006 17:20

sorry you are having such a tough time

xxxxxx

choccywoccydoodaa · 26/02/2006 17:23

Such a difficult time for you. I haven't got any answers but just wanted to post to say hang on in there. x

tamum · 26/02/2006 17:25

Pages, I'm really sorry. It is a classic symptom of Rett syndrome, but I would be amazed if it is completely exclusive to Rett. The thing is that regression is the big feature of Rett, and he clearly doesn't have this if he is making such good progress. The thing is that if he does have Rett syndrome, he would almost certainly be mosaic, and that will mean that no-one can tell exactly how affected he will be. It is very rare in boys, but I know dh has met at least one boy with it (he works on Rett and goes to parents meetings sometimes).

macwoozy · 26/02/2006 17:26

Pages, sorry you're having such an awful time.

coppertop · 26/02/2006 18:00

Pages - sorry you're having such a tough time.

I know nothing at all about Retts but I do know of a little boy (with ASD) who spends most of his time with his hands in his mouth or clasping them together.

MeerkatsUnite · 26/02/2006 18:19

(((((((((((((Pages))))))))))))

Am also very sorry to read that you're having such a hard time of it all.

Original poster

Pages · 26/02/2006 18:31

Thanks everyone, he is 3.6 and although his progress has been slow it has been progress all the way along. He was unable to move at all a year and a half ago and progressed to crawling, walking and his fine motor skills are improving all the time. I had read that regression usually starts at around 1 year of age but development is normal up until then.

Has anyone else got any advice?

OP posts:

Original poster

Pages · 26/02/2006 18:58

Sorry to bump this but I'm still feeling panicky.

OP posts:

r3dh3d · 26/02/2006 19:21

Hi there Pages - so sorry to hear about your worries.

DD1 has been tested for Retts (but doesn't have it). She spends a lot of time with one hand in her mouth. She gets some sensory buzz from sticking stuff in her mouth. She doesn't clasp her hands overmuch, but then the left one is pretty much useless to her. I know of ASD children (of 5 or 6) who are so oral-fixated that they do their lessons with a chewy toy in their mouth: allows them to concentrate on what they are doing rather than picking everything they see up because compelled to mouth it.

So - doesn't necessarily mean Retts at all. I found there is a stage you get to with Paeds where, if they don't know what is going on, they feel the need to run a new batch of tests. Happens to us about every 6 months. Of course, as she gets older and they rule out obvious things, the things they're testing for are less and less likely. It's amazing the number of things you can test for these days - you can't worry about all of them, you'll drive yourself mad.

chonky · 26/02/2006 20:20

Hi Pages - sorry to hear you're so worried.

My dd (about to be 2) spends most of the day with her fingers in her mouth. We have no 'formal' diagnosis, but no-one has mentioned Retts to us so far.
Like r3dh3d's dd I think she gets a buzz from it, and finds it soothing. She has CP and a visual impairment, so has been really slow to bring objects to her mouth, she's only been able to work it out in the past few months. However, she hasn't struggled to get her hands to her mouth too much, so I think where other babes would have 'mouthed' an object, she 'mouths' her hands.

monica2 · 26/02/2006 20:34

Pages so sorry you are going through this, do you have access to any counselling service? Could you re contact the team involved and ask for more reassurance/advice, they really shouldn't have dealt with it in this way leaving you feeling so panicked and in limbo.

Original poster

Pages · 26/02/2006 20:49

Thanks so much all of you, you have really helped. I am starting to calm down now. I am also really sorry to be so negative if anyone reading this does have a child with Retts, I just wasn't expecting all of this. I had actually been feeling really good about DS1 lately, and getting so much pleasure from seeing him trotting around the house and running into my arms when I pick him up from nursery and he has been understanding more and more of what I say to him. There have been so many little achievements on a daily basis, even if he isn't reaching the standard milestones that quickly, he is unrecognisable from the child he was at the last assessment. I just hate seeing the paediatrician. You have all made me feel a lot better, I feel guilty for leaping onto the site to seek advice when I haven't been around for ages, but do really value you.

OP posts:

Original poster

Pages · 26/02/2006 21:11

PS - R3dh3d, why doesn't your DD use her left hand? And Chonky, my DS is the same in terms of not having mouthed things at the right age - he never reached out for toys or did anything much with his hands until well over a year old, didn't develop the pincer grip till 2 and a half, and I just thought all this mouthing and "playing" with his hands was him revisiting that stage so that he can move on...I can see now that it may be more of a comfort thing, but he's been through other stages before, ie head shaking and hand flapping and he has stopped doing all of that so I thought it was just another phase.

OP posts:

JakB · 27/02/2006 09:48

Pages, I thought DD had Retts for a while and spent FAR too much time on the net- the US sites are particularly distressing when you haven't got a firm DX. She used to move her hands in 'strange' ways (we used to say she was doing her 'Thai dancing')and wring them together when she was around a year. It seems it was just a sensory 'stim'. She goes through phases of having her hands in her mouth almost constantly and still taps surfaces. All part of her autism!

r3dh3d · 27/02/2006 13:45

Pages - good question. Probably she has Hemimegalencephaly and the right side of her brain doesn't work. Possibly she has just had a stroke on the right side during one of her seizures. Waiting for results of an MRI (brain scan) we had done to confirm this. Shouldn't think either has the remotest bearing on your DS, bless him!

heartinthecountry · 27/02/2006 14:07

Hi Pages - I think quite a lot of children with SN 'play' with their hands a lot. As others have said, a sensory thing I guess. I really really don't think it is exclusive to Retts.

Original poster

Pages · 27/02/2006 16:52

Thank you, thank you, and bless you all! It will be months before we get the genetics appointment and I am not going to spend all that time looking on websites and freaking myself out. We have been through this so many times (when they did CT and MRI and then when they were testing for Willams Syndrome and various other syndromes) and nothing has ever showed up. And yes, it is like Thai Dancing Jak B! He seems to be playing with his fingers more than anything. Thanks so much for the support.

OP posts:

Original poster

Pages · 27/02/2006 16:54

Oh and I hope the scan results help R3dh3d, sorry to hear that.

OP posts:

dizzy34 · 27/02/2006 17:46

Hi, sorry to hear you are having a tough time. DS3 was tested for Retts, but he didnt have it. Dont know what made them test him for it cos he doesnt move at all, i think they were just testing for everything. The results for retts took an age to come back as well.

Original poster

Pages · 27/03/2006 21:31

Just an update to let you all know that DS1 and I saw the genetecist today and he refused to even test DS1 for Rhetts, after watching DS1 trotting round the room and playing for 30 mins said he did not have Rhetts or any other syndrome - said his movements were normal, development normal (though slow) and although DS1 obviously has learning difficulties he didn't believe that he has any syndrome at all. He said the hand playing stuff is by no means exclusive to Rhetts and children do it for various reasons and it is likely just a phase while he is mouthing things including his hands (cos he didn't do it at the normal age)

Pretty much everything you all said in fact, you wise bunch!

Feel so happy and relieved and having two littl'uns is getting easier every day (hang on in there Thomcat!)

OP posts:

chonky · 27/03/2006 21:34

Aaaah that's great news Pages. Glad things are getting easier too :)

JakB · 28/03/2006 06:51

Glad things are getting easier, Pages! I had DS when DD was 22 months and it was all 'kicking off' in terms of assessment etc. It's really hard combining a new baby with everything else

Flip

1 2