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Hi Again. Worried.

33 replies

ntt · 16/01/2006 19:05

Hi, don't really know why I'm posting this, I just need to express but I'm not sure what anyone can say as a response. My partner broke down in front of me for the first time today. It was so scary. He's now getting worried about ds, who'll be 7 months old next week. I feel sick with an underlying panic because I've been so so worried about ds all this time and the only thing that's kept me going sometimes is my partner's belief that there's nothing wrong with ds. I was therefore able (on good days anyway) to put my anxiety down to a bit of PND.

I probably shouldn't be posting this in SN, as ds doesn't (yet) have any, but I know that from a previous post of mine a few months ago a lot of you can empathise with feeling like this. We've been through the toughest time of our lives since ds was born. Some of you might remember that his heartrate decreased during labour and shortly after he was born he had a series of seizures.

I suppose I'm wondering if any of you think this list of things I've been worrying about might sound familiar? I don't have anyone to talk to about this in real life. I'm not ready to speak to the paed (who mentioned last month ds might have low muscle tone and is referring us to a physio), because everytime I see or speak to him I come away feeling so depressed:

He falls to the side if sitting (I have to support him) and doesn't automatically prop himself. He can sit on his own now for about 10 seconds if I position his hands so they're propping him, then he'll fling an arm out and topple. He seems to have a problem with balance.

When on his front he can lift his head to look at something, but doesn't push up on his arms. Occasionally he can lift up to his elbows but then will usually topple to a side.

He can roll from his back to his left side, and now almost to his right side too, but doesn't flip onto his front.

Sometimes he flings his arms out to side if startled, (but not noticeably bring them back to chest) - like the moro reflex which should've gone by now.

He moves his arms out to the side and into his chest quite a lot, especially if he's agitated or upset and will kind of grab-let go-grab-let go repetitively, ie my arm while he's having a bottle.

He doesn't make continuous ba ba ba or da da da type sounds, although he does do consonants.

Whilst he doesn't have much difficulty getting his hands or say a muslin, in his mouth, but he seems to "get stuck" if he's trying to bring an object to his mouth and stares at it willing his hand to bring the object to his mouth, but can't.

He doesn't copy any sounds I make, but will look at my mouth as if really concentrating and, for instance, try to purse his lips If I'm saying "oooo" to him

He's only between 2nd and 5th centile for weight and head circumference, 25th for height. This has been constant for months.

On the plus side he smiles a lot, laughs, is interested in toys, turns his head towards noises, and if we pull him up from lying on his back, he will keep his legs straight and can bare his body weight for a good few seconds. He enjoys his door bouncer and tries to crawl with his legs.

OP posts:
anniebear · 17/01/2006 14:39

At the end of the day, if the Neuro asks you to record the movements you will have to go away and do it. It would be better to go with a video tape so no time would be wasted

Ellie had Meningtis as a baby and suffered seizures amongst other things. She then went on to develop other seizures about 6 months later

Hope I haven't concerned you at all. I wasn't meaning to

ntt · 17/01/2006 14:59

Anniebear - crikey please don't think you're freaking me out or anything like that, you're not at all. I wouldn't have posted here if I wasn't prepared for what I might hear. What will be will be, there's no getting away from that and we could have a difficult time ahead of us. I really appreciate your advice. I know certain movements can indicate lesions. However I don't think there's really any need to tape the movements because he does them so often the neuro's bound to see them anyway, but I will ask him what he thinks of them. Thanks again x

OP posts:
Dinosaur · 17/01/2006 15:07

Jasnem I don't know what you were getting at.

Ntt I am sorry but just can't remember enough about any of my DSs to know whether your DS is similar/not similar etc. But I just want to offer you my support in this difficult time. I too had uneasy feelings about my DS1 when he was a baby (due to his appalling start in life) and as you might remember from my posts before, he has indeed turned out to have high-functioning autism, but then again he is doing far far better now than we would ever have guessed when he got his diagnosis, so who can say what the future holds?

I know it is hard but try and enjoy him now for the lovely little baby he is at the moment. Truly, if there is anything very wrong you will know soon enough. Sorry if that sounds harsh, but I wish I had made more of DS1's babyhood myself.

ntt · 17/01/2006 20:49

Hi Dinosaur, he is a gorgeous little baby - maybe the greatest tragedy will be that I couldn't enjoy him. What you're saying is so true and I know that whatever happens I'm going to be furious with myself for being like this. I do sometimes have a lovely day where I (for instance) read on here about other babies that have been a bit slow reaching their milestones and for a few hours convince myself there's nothing wrong and I feel so ecstatic that I have a lovely scrumptious baby, like I would've all the time had the birth gone well. Most of the time I feel about 90 and on the verge of tears. I know I'll get through it, there's no option. And I know I need to get stronger, be more positive and have more faith, otherwise our lives will be wasted. Thanks for posting : )

OP posts:
DebsCee · 17/01/2006 21:55

ntt - My DS is doing really well considering he's only had physio for 4 months and only actually sees her once a month, though we do the exercises ourselves of course. He can now walk holding 2 hands, which he had never done before. He prefers to scoot everywhere on his bum though The difference in him has been astounding, to actually see him standing is really something for us.

My DS doesn't appear to have any issues with fine motor skills, his pincer grip was there from a fairly young age and he loves picking up tiny little things off the floor! I don't know if this is always the case with low tone, but then DS only appears to be affected in his legs/lower trunk.

Our orthoptist and physio are now saying that it looks more like hypermobility than low tone, possibly both, because his joints are super flexible, he can get into all sorts of weird and wonderful positions. The downside is that he doesn't find it easy to support himself on his legs - arms look fine. His legs are so 'wobbly' and bendy that he can almost turn the whole thing around on itself - uurgh! He won't be an athlete but maybe a yoga instructor.

Actually, typing this has reminded me that i wanted to post a message myself about hypermobility and walking.

Just going back to your concerns about cognitive ability, mine were put to rest finally when a dev. paed. undertook a Griffiths assessment on him. I was really nervous as I knew it might identify other areas of shortcomings or problems but happily he scored average or above average for every area other than gross motor. This was conducted by a paed linked to the CDC here who has seen many babies with various SN and she really reassured me about him. They undertook the test because I was stressing to my HV about CP and brain injury and all sorts, and to be honest if they'd said he was behind in other areas too it would at least have given us something to work and focus on. Which is a heck of a lot easier than the "is he, isn't he?" phase that you are going through.

Please let us know how you get on at your next appointment and try to make every day a good day, you are in control of how your day 'feels'. Don't look back and regret this time like I have done on occasion.

ntt · 18/01/2006 18:21

Hi Debs - it's brilliant that your ds is "walking" and has good fine motor coordination. Best of all though must be the good Griffiths result! I need to find out all this stuff myself really, but know what I'm like if I start looking on the net so tend to avoid looking too much up to do with ds.

Lol at him being a yoga instructor! My ds seems to be the other way round - his legs and weight bearing seem ok, but could do with more upper body strength.

I'm a bit embarrassed at my last overdramatic sorry for myself post Sorry everyone, I'm normally (used to be) very level headed and rational.

Thanks again to all of you who posted, I'll keep you up to date. x

OP posts:
ntt · 23/01/2006 17:19

Debs, I've just tried to CAT you, but you're not accepting emails apparently

OP posts:
DebsCee · 25/01/2006 19:02

Hi ntt

I've just sent you a message - please try again!

Deb

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