Concerned for DD3 - behaviour and development

Hello!

As some of you may know, remember, we have had quite the journey so far with DD3: from her threatening to evacuate the uterus early, to her developing seizures from about 4 months of age (at one stage 100+ a day).

We are on 3-6 monthly visits with her neurologist and for the last two visits have hoped that it would be the discharge visit lol...no such luck, she keeps changing up her seizures aka 'moments of quirky' as we like to call them. But that is an aside...

Basically, I have, for quite some time now, held a pretty quiet concern for her social development. rationally i can see that at her worst, she was just so so tired and had nothing left to give in terms of communicating and playing: she went from a babbling, belly laughing baby to a baby that would just lie there and wait for the next seizure. during the hellish 4 months of repeated attacks she went from sitting and trying to feed herself to not doing that and not rolling etc (i posted about that ages ago).

Anyway, each check up i have with the MCHN and the neuro they all tell me that she appears to be on track. On many levels i agree: she is a super happy toddler, that wants to play. However my worry stems from the fact that I *think* she beats to a slightly off kilter drum. And I wonder if it is the after effects of what she has gone through?

Some examples:

Hates to have her body restricted in any way and it is especially apparent at night time (when most of her seizures have happened in the past). we cannot for love or money have her in socks, sleep bags or footed onesies. and it's apocalyptic if we do.

Does not interact with people that are not part of her inner core. I have noticed as she gets older that her seeming compliance and gentle behaviour when being held by friends is in fact, sheer terror. she freezes up, tries not to blink and will not, for love or money, make eye contact with them. Once they pass her back to me or put her down she then bursts into tears.

She doesnt babble. She used to, but now only 'speaks' occasionally. she loves our dog and calls out to her and to myself and DH, but shows no interest in other words. Although on this i think she is fairly within the realm of normal development when i see kids in her peer group she appears to be really behind ITMS.

It hit me yesterday as we went for coffee with friends and a lady came in with her 14 month old DD. Instantly i was talking, smiling and interacting with her DD and she was interacting back...it hit me that my DD3 just doesnt do that. It's moments like that when i get out and about and see other kids around her age that i really start to raise some flags of concern. if i live in my bubble and stay at home, it is a bit of a struggle but I can see that she is awesome and playing and gorgeous, but when i get out, she is just a bit different ITMS.

This is a novel, i know. first time i am kinda putting it out in words rather than just mumbling to myself about it all.

I honestly do not think that she has displayed any spectrum signs ITMS. this seems to me that she is really socially unconfident and unsure of herself. She is still rattled by the seizures when they do happen (they happen less frequently but she is beginning to protest against them much more).

I'm just unsure of what is going on and who to ask and even if there is anything that i can do....or is it just a waiting game for her to 'catch up' or gain some confidence?

Perhaps dyspraxia related to her muscle tone/development? Can you see an OT?

Huge hugs hun :hug;

Hope you find an answer soon x

I think any concerns you have are best addressed by a health professional - a different one if those you are seeing might overlook stuff (everyone tends to focus on one particular area, so won't necessarily see other stuff, you know?)
I reckon if you feel something's not right, then you're probably right, you just need some professional guidance to get to the bottom of it. It may not be anything serious, but it's just better to know.
Really, after everything she's been through, this might just be the way she's dealing with it. I dunno and have nothing actually helpful to offer.

Interesting Cass and yes you can go a few ways with it. Everything you have mentioned definitely falls within the spectrum of normal. But you are thinking something is up which tweaks my concerns. I do believe that like percentiles. For there to be a average there has to be a perfectly normal 99%er and a perfectly normal 1%er. No idea if I am making sense. Is she different to her sisters? So what? Is she different to your friends child, thank goodness we don't all behave the same way in social gatherings. She may always be shy.

But again you feel 'something' is up. Are you happy to wait it out or are you asking for advice on who to see next?

Also her neuro concerns would have a hangover effect on you all. Sounds like its been a terribly stressful time. Are you over analysing everything? Are the drs missing something?

Hugs hon. I'm always interested to read more if sharing helps you muddle thru your concerns x

I agree with the others that yes if you are worried you should see a health professional, and possibly one who you don't see regularly for her other check ups.

However, form reading what you wrote, I wonder if her behaviour is directly linked to the seizures in a type of response or reaction to them and what she has been through, combined with her normal personality type.
Like, perhaps the dislike for having restrictive clothing is linked to the feeling of seizures and that tightness of being held? Or that she trusts her inner core of people because they are the ones who keep her safe when these things happen (plus if she has a shy personality, that wouldnt help any). The lack of talking or babbling could be a phase?

I have no clue really about seizures though. Just my rambling thoughts on why she could be acting or reacting the way she is?

In all honesty, if you are concerned about her even in the slightest way, I say get her checked out. It could be nothing. It could be something. But I believe the stress of not knowing can be worse than the knowing itms. I don't have any real advice besides that, I know how it feels to be worried about your child's development :hug:

I agree. There's no harm in seeking an opinion from a health professional. Just a regular gp would be a start.

There are things like Early Intervention. Weather there is something there or not, they can help. Even just little things like helping her deal with social situations.

DS was very much like your DD when it came to others touching him. He'd freeze & cry. So we avoided it if it was possible. He still struggles now with adults outside the immediate family, but he's getting there. Very slowly.

She's your daughter. Only you really know her. She has been through a lot, but that's no reason to ignore your gut instinct.

Good luck :)

I'm going to agree with everyone and say if you have a feeling something is going on, then it is best to seek some kind of professional opinion. Even if the most that comes out of it is some reassurance that things are OK and some strategies to help her feel more comfortable with others. Never discount the value of reassurance and peace of mind!

As others have said what you've described sounds with in the ranges of normal, but just to put another spin on things, little ones development can be impacted quite heavily by health issues. My DD2 has had a few issues that while haven't been too serious have caused many long periods of just not being 'well', you know just not running on all cylinders. She has some slight delays in some areas, most notably speech, which her specialists are partially putting down to her body prioritising fighting the bugs or having enough energy to keep breathing and feeding and just putting the speech/movement development stuff on the back burner until she has the energy to put into them. And when I consider that she was affected but heart issues up to 9 months and spent I reckon 6 months of last year sick, it adds up to a lot of lost 'development' time. And she is getting there, once we got to the bottom of the health problem and took action and had a few clear months of good health where she was free to develop she started catching up again. It may be that when the seizures have been at their worst, they have set back her development time line a bit.

But I totally understand where you are coming from, even though we are making progress and things are getting back on track and we are catching up I still do have in the back of my mind that there could easily be something going on there that we just haven't found yet. At 2.5 she has a quite a few words which she uses to label things (mummy, duck, shoes etc) but there are still so may words that she just won't say - everyday things like a word for 'water' or 'drink' - and I never really know if it is a case of her mouth and throat not able to form the sounds or the problem is more on an intellectual level. I get that doubt sitting in there somewhere - no matter how much on a rational level the evidence says there is nothing to doubt!

But what you say about her beating to a slightly off kilter drum.....think that is something that could be caused by her experiences, or it could be her personality that has just shone through more due to the age she has reached. There are levels of quirky that are not a syndrome or a disorder or on a spectrum, just some people see the world differently. You may or may not find a name for her brand of quirky, but either way some expert help should help you navigate the tricky bits and give you strategies to guide her in a positive direction.

thank you all for your replies...and because you are all awesome you all are on my wavelength and getting what I am trying to say despite my rambling :lol:

i suspect that alot of it is hangups from the not so great times of the last year. As you, Sagres, have mentioned, she just kinda didnt have the energy to really get out and play. play was something she stopped doing during her really hard times. her energy was so zapped.

I have always noted that she seems to be playing 'catch up'. and it is beautiful and gorgeous to see her blossom but also is confronting when we (both DH and I) realise just how much she wasnt doing ITMS.

And I suppose what i am trying to work out is the level of what is really her needing to be further nourished and what is our fear of it all falling apart again (not likely by the way!). And that is why, i kinda havent put too much emphasis on my concerns at appointments...because as far as the charts are concerned she is all on the normal path.

I'll have to pop back on...gotta pick the kids up, but yeah, this is good...I love being able to bounce it all off you guys :D

The catching up really does take a long time, way more than you would think. My DD1 (who also had the same heart issue) had stopped growing taller and putting on weight and wasn't getting any new teeth before her operation, but then she cut a molar in hospital and got 6 teeth in the 6 weeks afterwards, she suddenly shot up and started putting on weight. So then she was so busy growing and getting teeth she was still leaving the developmental stuff on the back burner. It took MONTHS, maybe even a year to 'catch up'. I don't know what age your DD3 turned a corner with the seizures but she is still pretty young, there is plenty of time to get there. Now DD1 is 4.5 and at kindy and is a star pupil and you wouldn't know that I once wondered if we were ever going to get 'there'. I just need to remember that DD1 got there and DD2 probably will also. I do the same thing though, see other 2.5 year olds and feel all woah we are sooooo delayed.

Goodluck with your progress from here :)

Cass, definitely talk to someone if you feel she isn't developing right but I would tend to agree with sangres.

From my own experience, none of my kids were babblers at that age or would go near strangers. She might just be of a different nature to your other kids - I know I am always surprised at how different my third is.

I am pretty sure that A is delayed from the chronic sleep restriction as a baby - she was always red eyed and grizzly, staring blankly and not interactive, and she has developed slowly. I totally know what you mean about them seeming just dandy at home, then you see them next to a kid the same age and the difference in ability hurts :( she is getting there though. It seems to be snowballing now and I really hope she is at age level development by school start next year.