Developmental disorders/learning disabilities/genetic syndromes & more support group

[bumpin2012]

we're in Canada.

when we were initially seen, she did say that they would wait and see. we've been keeping an eye on his progress using the ages and stages questionnaires which ifs likely very similar to the assessment tool you mentioned. he's always scored low, across the board. she did say that most kids identified as being behind, will catch up by age 3, and it's considered a normal variation in a development schedule, as long as he continues to progress.

he's progressing in all areas except for language and communication, he's now fallen from being 3 months behind, to about 10 months.

 

[nearlythere38]

Hello everyone

Sequeena i recognise your bnb name from when i had my son!! He was born 31st aug 2011 but was due i sept so we probably were in different groups.

I now have another child, Ava is 15 weeks so a bit early for development delays but she is having some problems. She has low tone in her neck and upper body, which is resulting in head lag and flopping backwards/forwards. She protrudes her tongue, which is unknown why as yet. Weve also just found out she has a vision problem, possibly linked to a brain problem and are awaiting further tests. She just smiled for the first time at 15 weeks, is not followin things, grasping or batting at objects etc. All ot which my other children were doing by now. Its a very scary time and such a slow process waiting for tests and rsults. X

 

[sequeena]

Oh congrats nearlythere yes I remember you I hope they're able to give you answers soon. It must be scary especially in such a young baby.

Well af arrived!! Very disappointed but what can you do?

 

[RachA]

we're in Canada.

when we were initially seen, she did say that they would wait and see. we've been keeping an eye on his progress using the ages and stages questionnaires which ifs likely very similar to the assessment tool you mentioned. he's always scored low, across the board. she did say that most kids identified as being behind, will catch up by age 3, and it's considered a normal variation in a development schedule, as long as he continues to progress.

he's progressing in all areas except for language and communication, he's now fallen from being 3 months behind, to about 10 months.

I know it's hard not to worry but can I just say that your lo is still young. At your sons age my son also wasn't talking. He didn't babble at all but by the time he was 2 he was a right chatterbox. My daughter on the other hand has always babbled a lot but she's just never really transposed the babble into words until recently.
Obviously you have other concerns as well but communication is really sure a diverse thing-some children seem to talk really early yet it's still within the normal range for them to only have a few words at 2 years.

 

[bumpin2012]

Thanks RachA, your experience definitely makes me feel less worried. I really do hear what you are saying, I've said it to myself countless times. Worried is definitely how I am feeling, but I am trying not to panic.

He's my only child, and until I had him, I really hadn't much interaction with children. I joined a mom/baby group with all the babies around the same age. I started noticing him falling behind, but I always chalked it up to him being one of the youngest. It wasn't until I started seeing babies that were much younger doing things Gabriel had yet to do, hence getting him seen.

Nearlythere Im sure everyone here understands the feeling of having a sense that something isn't right and waiting. Im in the same state, waiting for tests, and its soooo frustrating!

 

[essie0828]

Sorry AF got ya sequeena.

 

[bumpin2012]

sorry af arrived Sequeena. how long have you been ttcing?

 

[essie0828]

I need a rant. Sorry in advance ladies.

So I have been pouring over LOs medical records and I'm just depressed really. Her birth records are really inaccurate I'm really confused as to why. Her nurses notes say her initial apgar was 2, but the obgyn delivery/surgical notes say her initial apgar was normal. 2 is not normal. The surgical notes say she was delivered in vertex position, but she was not. I was there. That baby came out butt first and her her head was stuck. I am so disgusted at these discrepancies. I feel so guilty. I should have done a thousand things differently I should have went to a different hospital A different OB I should have been healthier

 

[essie0828]

Hi ladies

Lol came on here earlier to rant, got halfway through and my phone ate it. That's so frustrating.

So long story shorter. I'm depressed tonight from pouring over LOs birth records They are so inaccurate. I feel so guilty. I should have done so many things different. I shouldn't have went to that hospital. I should have been healthier when I was pregnant Don't get me wrong, I never drank, smoked, did drugs, but I'm a fatty This has just been a tough week. Thanks for listening.

 

[essie0828]

Omg my phone didn't eat my original rant

 

[bumpin2012]

oh, Essie...Rant away. I know I have many of the same guilty feelings. Im not sure if it helps at all, but your weight likely has/had nothing to do with LO's complications, both during delivery, or as a result of an "unhealthy" pregnancy. Babies are literally mini parasites and suck all the good out of us, regardless of much of the junk we put in.

Major regardless. I dont know about the discrepancies. Perhaps its just a discrepancy in wording? Perhaps they used the word vertex and meant vertical. I am guessing that it would be far too late to get that clarified.

 

[RachA]

Hugs Essie. I agree with bumpin-your weight more than likely didn't factor in your complications. Sometimes you just need to get your frustrations out. And sometimes you can see issues where there are none (not saying that's your case as obviously there are discrepancies in your notes) - when it became obvious that Esther was behind and she was started to be looked at my mum felt so guilty. I'd gad a totally normal pregnancy and my labour was how it was supposed to be. I was freaked out due to the complications I'd had during my labour with my son but I was doing everything I was supposed to. After the birth my mum said that she didn't think Esther cried for ages and so she worried that this was what caused her delay (ie lack of oxygen) but all the notes tally and her apgar etc were totally normal too. I guess what I'm saying is that even when things went to plan you can still manage to blame yourself for your child's lack if development etc.


I was having a crisis yesterday too-Esther is doing well at adding new words but she only seems to be saying one word. She has a couple of sentences (2 or 3 words) but that's it and I was worrying last night that she's only going to be able to communicate in one word sentences.

 

[sequeena]

Essie, it sucks but you did nothing wrong. Seriously, how would your weight affect what happened? The doctors discrepancies are that - theirs! You were in labour which is hard enough without trying to predict what will happen and trying to make sure things are absolutely perfect. Give yourself a break.

 

[annanouska]

bumpin our lows are similar ages and its amazing how quickly they can bounce along.

Essie, I was 99.9% certainly bigger than you in pregnancy, I was told I WOULD have a huge or tiny baby, I WOULD get high bp and pre eclampsia. I didn't get anything, I had a really easy pregnancy but very hard birth due to moo getting wedge, pelvis breaking and I think my pcos somehow prevents me from responding to labour hormones coz I didn't at all!ni don't think any of this in my case co tributes to how he is, I think he is just not eager to develop too quick!

What are your main concerns for her at the minute? She is still quite young I've every faith things will get better

How are the other children and parents doing?

Rach, a family friend's lo is dyspraxic and didn't talk at all until he was almost 4. It improved bit by bit and now as a young teen you wold never know.

I think a lot of it is thE guilt and frustration as parents. It's upsetting seeing other children, other people asking what's wrong or looking at you like your baby has 5 heads and is neon blue

Xxx

Things are ok for us right now, his speech is non existent but babbles a lot. Today he sat up and said dude. Cear as day, no idea how he got to that as its not a word we use but it made me laugh. We are working hard on behaviours and things look a bit better. The feet....different story. Still waiting on his referral. He can stand and semi cruise but those ankles can't stabilise enough for him. I have him bare foot but dunno if he would benefit from boots, still waiting to fi d out. Xxxx

 

[essie0828]

Thanks ladies. The morning light makes things look better. Her records are still a mess but who cares. She's here, she is who she is, and I love her

RachA on days that they stall out with their development it's hard. I'm sure Ester will gain her sentences. It just may take a little while longer. Hayley had a "floppy" day yesterday Those days bother me. Those are the days I can really see the CP shining through. I think another cold or ear infection is coming on. Her development always lags if she is unwell. Maybe Ester is coming down with something to?? Or probably just having an off day.

Thanks bumpin How's your little man doing?? I love the pic of him going after that leaf! Ha! He looks so determined.

Sequeena how's T doing today?? Is his sleep better?? Has he caught a swan yet?? In his pics you can tell he wants to get his hands on one He's too cute.

 

[essie0828]

Anna I think my biggest concern is DD's prognosis. It's so varied. She could be slightly affected or she could be quite impaired. I worry if she is having pain or if she will have pain from this in the future. Ugh just not knowing really.

Anna I was concerned with DD's ankles when she was about 12 months. We saw an orthopaedic specialist who told us that at her age shoes or boots didn't matter. That the young kiddos just need to build their muscles and learn where to put their feet. That being said, I still bought DD a pricey set of high tops hoping it would help. It didn't. Your little man may be different. But I do know that there's no harm in trying them if you want

 

[essie0828]

He said dude. love it! DD has spontaneous words sometimes. I'm sure she said "bullshit" in the car a few months back. I would have totally chocked it up to my imagination if DH hadn't been sitting with her. He heard it to. Plainest word I ever heard her speak I'm blaming DH for that one.

We have yet to hear it again. I'm kinda thankful for that.

 

[bumpin2012]

hahaha, I love hearing random words. I babysit my friend's 19 month old girl, and I randomly hear " oh shit" when something isn't going her way.

Essie, my Sil was close to 400 lbs, ate like crap, did some pretty selfish things during her pregnancy, and her little girl is perfectly normal. her only issue is having idiot parents. ( but that's a WHOLE other rant)

It seems like things would be easier to cope with, if we had something to point to and say " this. this is why my child is struggling" I remember a convo my best friend had with a chi worker, whose son was born with downs. I remember her saying that " God only gives special children to the people who are special enough to earn them" and I really do think that's true.

 

[essie0828]

Aww bumpin that's really sweet. Ty

I was 270 when I fell pregnant with DD. I am 6ft tall and I have always been big but healthy. Had a full athletic scholarship to college, always been able to do physically demanding jobs but always classified as obese. It just sucks. I've always been uncomfortable in my own skin and this makes it worse. And stories like your SIL are everywhere. My husbands little cousin was born addicted to all sorts of drugs and had to be removed from her mother yet developmentally she's normal. I wouldn't even take my antidepressant or anti nausea meds Ughhh. You have to be right. She was born to me and DH because we needed her and she needed us.

 

[essie0828]

Anna it will take me a bit but I will put up some pics of Hayleys feet and ankles when she stands. Also I will try to add a video of her "gait". She has the classic diplegic cerebral palsy walk. You can compare what you are seeing in your little one. He's still very young and likely to just be gaining his strength so you have to use your best judgement. But you are obviously concerned. I diagnosed DD myself at around 15 months by Googling, watching you tube videos and watching for other little kids that did what Hayley did.