Hi Again. Worried.

[ntt]

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.

[Piffle]

My dd sounded very similar to yours at that age, she had hypotonia or low muscle tone which meant her core stability (ie her lower back and tummy) culd not support her.
We went to physio for exercises
I must say that it is still very early to be worrying, but you obviously have some instinct that something is justnot quite right.
Go with it. Talk to your GP and ask for a paed referral, they may ask you to wait a little longer though.
The moro reflex can linger for years, my dd certainyl startled like that until quite recently in her sleep and she is 3.4y
My dd could not prop herself onto her hands or even roll at your sons age.

It is way early to be worrying about speech and vocalising, my daughter has only now a very mild speech delay and she did not babble until 12-13 mths and certainly no continuous strings of ba ba ba ba
They do not generally refer for speech until 2 yrs old. Mimicking is usual at about 16 mths onwards I think, my dd has only just started repeating parrot like.
She is also very low weight and height - on the 2nd for weight and 25th for height.
Worth a chat with your GP but tbh still very early, they may ask you to come back at 12 mths...

[Jasmum]

Hi ntt,

I noticed you didn't have any reply's so thought I'd post back to you I hope thisis a real post.

Is this your first baby? I have a seven month old boy and alot of the things youre saying your ds doesn't do mine doesn't do either - but I have no doubt that my ds is healthy.

My ds doesn't sit up by himself yet and falls to one side, and around 8mths is average to sit up unaided.
My ds does go on his tummy a lot and can push himslef up with his arms but my dd who is 3.3mths hated being on her tummy and use to look like she was swimming the channel.

My ds can only roll to the left......

My ds is currently patting everything, including me - I feel beaten up after a day with him!

I could go on and on....why are you so worried? Have you spoken to your helath visitor about your concerns?

[ntt]

Piffle, thanks for your post and reassurances. We spent 8 days in SCBU and are under a paed already who we see every 3 months. He's a general paed but he's just referred us to see a neurologist and a physio for an assessment. My HV has cancelled all tests locally because she thinks the paed should sort all those out. GP's aren't interested - they just say "speak to your paed".

Jasmum, thanks for your post too. Why do you think mine doesn't sound genuine? Do I really sound like I'm raving? I just don't know, I'm in a mess. I wish the scbu/seizures thing had never happened, I might be like you and not worried at all. I just wanted the paed to tell us to go home, enjoy Christmas, not to worry and he'd see us in a few months' time, but he didn't now we have to see a neurologist and a physio and my mind's in bits.

[ntt]

Piffle, meant to say thanks for posting before on my exercise thread and it's great to hear how well your daughter is doing

[foundintranslation]

If he's following his centiles it's OK, surely? I speak as one whose ds, 8 mo, is on the 3rd centile for height, a bit higher for weight). Someone's got to be in those couple of percent of smallest babies!
ds doesn't go ba-ba-ba or copy my sounds either. Think 7mo is way too early to be concerned aout that.
He doesn't sit up properly either - when he sits he leans far forwards.
I'm afraid I can't help much on any of the rest of the stuff and am far from an expert anyway. The only way you are going to get some clarity, though, is probably going to be going through the paed. Could you speak to your HV if she's sympathetic and you don't want to go to the paed yet?

[foundintranslation]

ntt, my post wasn't intended to sound flippant. Sorry if it came out that way. Suppose I am trying to reassure without much idea whether I can.

[misdee]

I wish i could say, try not to worry, but you obviously are. dd3 spent 24hrs in SCBU (just to get her sugers back up) abd it was awful. there was a little niggle in the back on my mind for a while, but she is fine.

dd1 was my 'slow' baby, sat up around 7months (with me helping), comando crawled at 9-ish months, proper crawlign soon after, cruising at around 11months but didnt walk till 16months old. dd2+3 are definatly faster on the mobility scores than dd1 ever was. which is suprising as dd2 has low muscle tone, but she walked at 10months.

probably confused you now.

sorry.

[foundintranslation]

Oh, and just seen what you said about HV (crossed posts). Sorry. Hope someone'll be along soon who's more use than me

[chonky]

ntt I'm so sorry that you're worried like this. I agree with Piffle, it's definitely worth speaking to your GP, they should be there to support you and your dp as well as sorting out referrals to the paed.

Are you and your dp getting much support from family and friends? I know that having people to talk to doesn't take the worry away completely, but I found that it did ease the burden that my dh and I were placing on one another by feeling we had to be strong all the time.

Just going off on a tangent - I can't find that book with the exercises for you. I'm really sorry, but hopefully you can amazon a copy.

[ntt]

not flippant at all - dp is back, I'll have to post later, sorry x

[Aloha]

He sounds a bit like my ds who has dyspraxia (a motor planning problem) and quite low muscle tone. Neither are by ANY means the end of the world. Ds is just over four and is very bright, can read, do maths, all sorts.
Your ds sounds bright, alert and that's fabulous. Talk to your HV about your concerns. If there is a problem - and I think a mother's instinct is usually good - it really doesn't sound like a very serious one. Not sitting well at 7months isn't unusual.

[Aloha]

He sounds a bit like my ds who has dyspraxia (a motor planning problem) and quite low muscle tone. Neither are by ANY means the end of the world. Ds is just over four and is very bright, can read, do maths, all sorts.
Your ds sounds bright, alert and that's fabulous. Talk to your HV about your concerns. If there is a problem - and I think a mother's instinct is usually good - it really doesn't sound like a very serious one. Not sitting well at 7months isn't unusual.

[ghosty]

ntt ...
I read your post really carefully and have had a think about my two very NT children and what they could do at 7 months ...
Obviously your DS' distressing start to life will make you worry and only the paed will be able to make it clear to you but my two really didn't do much more than your DS at that age.

DD could only sit up unaided for a short time at about 7.5 months ... prior to that she was very very wobbly. DS was a little earlier but not much.
Neither of my two could roll ... at ALL ... DS learned to roll when he learned to crawl at 10 months. DD learned to roll at 13 months (she bumshuffled at 10.5 months)
Both of mine hated being on their tummies and rather than push up just lay there and screamed ...
DD didn't copy sounds until she was at least 10 months ... she was really quiet.
Like others have said it is so early to know but your instinct is what counts and if you and your DP are getting so worried about it you really must go and see your paed and get some answers ...

[getbakainyourjimjams]

Hi- he's little for copying etc, and tbh there's really no reliable way of assessing social indicators/speech at such a young age (18 months yes, but not now). I can empathise with how that feels as ds3 (now 1 year) is at high risk of autism and there are days when I convince myself he is. I just keep away from babies roughly his age, then I find I'm less of a fruitcake.

Given his birth history I think that regular check ups with a paed are sensible (which it sounds as if you are having anyway), and otherwise enjoy him, do whatever you have to do to be able to achieve that (for me it means avoiding other babies- no great hardship).

Sounds like his weight bearing etc is good. I wouldn't waste too much time worrying about something that may well never happen.

It is better that your husband is on side as well- really-

[anniebear]

when he "flings his arms out to the side" does he just do that just the once or does he do it more than that?

I agree that I would go back to your DR. Do you know how long you will have to wait till you see the neurologist?

[anniebear]

and why on earth would this not have been a real post??????

[anniebear]

sorry, no point going to DR I supoose if you are waiting for a neuro appointment.

[ntt]

Thanks for your posts - had to get off the pc for a bit. Sorry.

Found - you didn't come across as flippant at all and I appreciate your posts, it's great to know not all babies at ours' age are sitting properly yet!

Misdee - thanks again for posting on one of my threads. That's amazing how your 10 mo with low muscle tone walked so early!!

Hi Chonky - we are too "raw" to talk to friends about any of this and we have no family within 200 miles unfortunately. It would be great to have a bit of practical support, but we knew we wouldn't have any before we had ds, Thanks for looking for the book, I'm going to order one x

Aloha - Dyspraxia was mentioned (along with cp) at our last paed's appointment, so I suppose I'm preparing myself. Thank you for your post.

Ghosty - thank you too. I don't want to approach my paed though - it's him that makes us go like this! These days I just sit in his office and don't ask anything - we call him Dr Death lol. Hopefully the neuro will be more positive, although I'm scared of meeting him.

baka/Jimjams - I avoid other babies like the plague!! Thanks for posting - I always keep a look out for your "he's pointing!" post and I hope he won't keep you waiting too long x

Anniebear - he does it just the once if he's startled - but does it in a more subtle way throughout the day, not really a "fling" - just kind of grasping movements towards his chest. Haven't had the appt. through yet for the neurologist. Are you familiar with this kind of movement? He's done it since he was born.

[DebsCee]

Hi ntt

Oh you sound so much like me when my DS was the same age, and I think I can safely say that I know how you feel and what you are going through. I replied to your previous post about physio.

Firstly, your DS sounds like mine at the same age, BUT he also sounds like other babies at the same age that don't have any physical/low tone problems - so it may all be fine.

Secondly, you HAVE to find the strength to make another appointment to see a pead urgently, so that you can discuss all of this, honestly, with them. I found out that my HV could refer me to a dev. paed. linked to her healthcare centre outisde of those we were already seeing at the hospital following DS's birth - maybe this is an option for you?

I think your fears are similar to mine - that the birth and the seizures mean CP or something similar and that you can't handle knowing that or dealing with it, because actually you don't know that and that's actually worse, right?

Every time I have felt like this my DH has very bluntly, and quite rightly, pointed out that your fear changes nothing, he will still be your son, you can't take him back, exchange him or get a refund. When I ask DH if he's 'worried' about DS he says - "what's the point, he's mine, i still love him, whatever his problems may be, and as far as I'm concerned he's perfect, low tone or not".

Right now I think you need support to handle how you feel and someone to share your concerns with about your DS. I broke down on the phone to my HV and they managed to get me an emergency appointment to see the paed where for the first time I dared to mention CP. It was a great opportunity to talk about how i was feeling, how scared I was, what it would mean for my DS and so on.

At this point I don't know if he does have CP, I know that physio has enabled him to do things I never thought he would do and in every other respect he seems 'normal'. I can accept that actually CP isn't the worst thing to face, many have to deal with so much more. And as we nearly lost him when he was born, I have to be grateful that I have him at all. I'm finally accepting that CP can mean 'just' a physical impairment, nothing more, and if that's what it is then so be it.

I really want to be able to help and reassure you and this message feels very inadequate. It's been a hard journey getting to this point and I wish I'd had someone to talk to that really understood my fears, groundless or otherwise.

If you feel you can CAT me then please do, I am more than happy to listen and help where I can. You just sound so much like me some months ago, you're not being irrational or silly, really. (DS is now 17 months).

[anniebear]

Hiya

My DD had seizures when she was a baby she kind of flung her arm up and over and fell if sitting up, my friends baby had the same kind seizures but he flung both his arms out.

It doesn't really sound as though your DS is doing these now you have explained more.

Ellie used to do them in clusters one after the other.

I really hope I haven't alarmed you, It isn't my intention. It sounds like you are worrying enough already and I am sure your baby is jut doing things that most babies do

At the same time I wouldn't wait too long for your Neuro appointment and would chase them up if you don't hear anything soon, more than anything to hopefully put your fears at rest

[ntt]

Hi Debs, your dh sounds like such a great bloke, you and your ds are very lucky. My dp has been great too, but over the past week he's been getting really down, but wouldn't admit why. I knew he's been worrying about ds, and he cried yesterday morning. It broke my heart, he never cries. He said he looks at our beautiful boy and feels so bad that he might never reach his potential. He also said he can't face meeting up with friends next week who had a baby the same time as us.

My worst fears are for his cognition, Like Aloha said, I know dyspraxia and cp doesn't have to be the end of the world. Our paed knows how scared I am. I had a bit of a breakdown a few months ago and sent him a detailed list of everything I was worried about. But like he says, it's a waiting game. He doesn't have the best bedside manner to be honest. so I'm just going to wait until we see the neurologist which should be in the next few weeks before we go through another consultation.

Thank you for your support and your cat offer x

Anniebear, ds does do this occasionally with one arm - even with the arm that's propping him if I've sat him up, so he falls over, so only gets to do it once. If he's sat on my knee he sometimes does it a few times consecutively - like he's swiping at something, usually he arches his trunk in the opposite direction.

[DebsCee]

Hi ntt Hope you're feeling a bit better about things today. I know what you mean about not wanting to see people with babies the same age, we were like that for a while. Then we realised that it was pointless and it limited where we were going and who we were seeing. Actually, when we did start mixing with friends & their babies again it wasn't so bad because although DS wasn't as mobile we saw that he was doing other things that other babies weren't, like clapping or chatting away to himself or even turning the pages of his books, which other parents were amazed at! I think it actually helped us. Even now my DS may not be doing everything that his peers are but then they aren't doing all that he can.

I can see why you are worried about the seizures. We were told that DS had a suspected seizure immediately after delivery but they weren't sure?! We watched him like a hawk and every twitch made me nervous, but again started to see that other babies did similar things. It seems like it's very difficult to describe the movements your DS does that worries you, could you video tape it to show to your paed or neuro perhaps? The problem with avoiding other babies is that you don't get to see what is normal for them too IYSWIM.

I think my DH has been wonderful but it's all gotten to him too at certain points and it's only really in the last 6 months that we've both accepted that what will be will be. It's just taken time I guess, and although I hope and believe now that cognitively DS is NT, he's just a real cutie who rarely stops beaming and chatting all day, and I wouldn't swap him for the world

[anniebear]

yes, I agree to record any of the movements that you have described and take it when you go and see the Neuro. Just incase.

[ntt]

Debs, your ds sounds lovely. I'm sure the movements I've tried to describe aren't seizures - they just seem to be a bit odd sometimes. As far as I know he hasn't had any seizures since a couple of days after he was born.

Dp seems to be a lot better today, thank goodness, if fact he seems in a more optimistic frame of mind than he has for quite some time. I hope he can stay like this for a while, although it sort of reminds me of how weirdly euphoric I can be sometimes after I've had a particularly bad day - it's like a hormonal reaction to save my sanity or something, but doesn't last long.

People are so strange round babies I find - they seem to examine them and can't help forming an opinion. Because ds is so small, I can see in some people's eyes their minds ticking over (I even posted a thread about this). Even dp's family do it. Lord knows how I'll deal with the "looks" if anything unusual manifests.

How's your ds doing now with his motor skills. Do you know if low gross motor skills impact on fine motor skills?

[ntt]

Hi Anniebear - I couldn't do that because I don't want dp to know that I'm worried about those movements, I don't think he's noticed/concerned about them. Can I ask if your dd has had a dx?