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

[sequeena]

Thanks essie

Your situation sounds similar to ours. I had a traumatic pregnancy but normal birth. Thomas has sepsis at 2 weeks then a concussion at 5 months (I fell with him) so the doctors don't know if his delays have been caused by the accident, but it could also be genetic as a lot of males on my side of the family had problems reading and writing (my dad cannot read and has lots of trouble writing, my grandfather was the same along with his brothers).

Thomas sat at 8 months, crawled at 11.5, cruised at 14-15 months and finally walked at 17 months. First word was at 18 months.

We're also waiting to see a paediatric neurologist (no appointment yet).

It is very scary, hopefully we can support each other through this

 

[essie0828]

You poor guys have had a tough go of it. He's a trooper to be the doing as well as he is, im sure you are very proud

I had a normal pregnancy with DD. Even worked full time up until 4 days before she was born. I did have morning sickness pretty bad throughout and was in hospital one time a few weeks before she was born for high ketones and dehydration. Just had fluids and monitoring for baby, all was well. Just before she was born, 4days before, my doc says shes not growing well IUGR and needs to come out. C section scheduled for the following Monday. Monday came, get admitted into hospital and then taken to the operating room. Spinal went well, my husband was there filming everything when I started thinking this is taking a long time. I heard a tech say "there's no suction" and everyone got quiet. In the video you can see the suction device come off her head twice. Next thing I feel tremendous pushing and pulling and doc says "fundal pressure" in a very serious tone. A big male tech almost crushes me. Finally DD comes out feet first and her head is stuck inside. He widened my incision and bent her neck straight back until finally her tiny head popped out. She was limp and pale. He took her straight to the other table and started working on her. Oxygen, suction, a fair amount of beating and finally we heard a weak little cry. I heard the doc say "out!"and they started wheeling her out of the room. I told DH to go with the baby and don't leave her. Then I fainted. I woke up a few min later to the anesthesiology guy talking to me. He was squeezing a bag of fluids into me so fast that my arm was numb with cold. I could hear the techs still saying the suction was broke so my doc was closing me up using surgery towels to soak up the blood. They had to tilt me to the side at one point to drain the blood and fluid. It splashed down to the floor in such a horrific mess. In recovery I found out DD was ok. She was still having trouble breathing but they said she didn't have to go to NICU. She weighed 7lb 3oz. I always thought she would have a neck injury from her birth. I constantly spoke with her pediatrician about it and they said she seemed fine. Fast forward to today and everything is not fine.

 

[sequeena]

Oh my gosh that's awful and seeing how LO was such a healthy weight, unnecessary too! I can definitely see your worries around LOs development has any doctor said her birth could be a factor/the cause of her delays?

For me the stress came in pregnancy. My waters broke at 14+6 but because I was so early no-one would do anything to help. I was told to rest as much as possible and drink lots of fluids. It was a very scary 10 weeks as I thought I'd go into labour at any time but thankfully at my 24 week scan I was told the tear had healed. I had Oligohydramnios throughout (low fluid, 3cm and under normal is 12cm and over) but Thomas always seemed to be growing well. I was pressured to be induced at 36 and 38 weeks but I refused and Thomas was born 3 days overdue weighing 6lbs 8.5oz. A very uncomplicated labour thankfully, just a long one (4 days). He was born with 3 thumbs that have been linked to genetic conditions so I think his problems may be genetic. Which sucks.

How's your LO doing now? Thomas has just learned to give kisses and is desperate to say daddy (we're getting addy right now).

 

[essie0828]

Will they do genetic testing on him? It would be worth a look. It will help you know exactly what you are dealing with and how to best treat it. He's a miracle for sure We will find out next week if Hayley gets specs like your little guy. I hope she doesn't need them, but honestly I've known her eyes were bad for a few weeks now. Her dads are really bad, hes worn glasses since he was a child. I'm wondering though, how in the world do you get him to keep them on? Hayley will not wear sunglasses at all. I'm afraid if she needs them this will be a War.

We have had 2 previous fetuses tested for genetic abnormalities and they have found none. This really makes me focus on either birth trauma or ASD as a cause of her delays. Unless her vision is holding her back. But honestly everyone I've shown the birth video to has gasped when he's pulling her out. Her neck was contorted in such a way and she was lifeless. But then it was like BAM she had rallied and was scoring good on apgar and all was "normal". She was colicky for about 3.5 months. We searched every possible cause to be told either, "baby's just cry", or" its colic, it will go away around 3 months". Thinking back now, I think her neck hurt. Her first pediatrician, the one who seen her the day she was born was aware of her birth and was helping me to work with hayleys neck as her head was off shape (mild plageocephaly) sp. We used different exercises and positioning techniques to help keep her off one side of her head. Ok fast forward to hayleys 6month appt and this doc is just gone from the clinic. Wtf. Ok go into this whole spill about her birth and plagio and she's growing good and cooing up a storm but not moving much.... she was about 6 weeks behind. New doc says no biggie, her head will reshape on its own when she's sitting more and shes fine give it time, blah blah blah. Ok so by her next visit 9mos she's sitting well. Needs help getting that way sometimes but can sit unsupported for a lil while. Doc says that's OK. She was standing with my help quite well but her ankles turned in weird. Asked Doc for a referral to a orthopedic and he says she just needs to learn how to control the muscles give it time. Ok. Fast forward to 12 mos, still no walking and needs support to stand. Head shape is getting a little better. She jabbers a lot and has mama and papa down. Has tone and inflection changes but words are unclear. Doc says that's OK. Asked again about the orthopedic referral and after looking at DDs legs for a bit agrees to give me one. Hmmmmm, could have done that 3 months sooner. Couldn't get into ortho until MAY! Ok.... Finally get to the orthopedic and he says after a few xrays that her bone structure is fine and that her ankles are just real flexible still. He says that will change in 6mos but she needs to see a pediatric neurologist for her head shape and speach delay! Hold up! What!? Her pediatrician says she's fine! Omg I realize I've been duped. She's not fine. She's behind like I thought. So her next appointment with her regular pediatrician is coming up.....nope not going back to him. Scheduled her into another clinic, she was diagnosed immediately as developmentally delayed. Doc says continue on with the neurology appointment, start First Steps and show the neurologist the birth video .

But as of now... she's semi running with me holding her hands. She's unsteady and all toes but laughs herself silly trying. She will fall to her knees after about 45 ft. Some times she goes farther. She's trying to draw but most movements are choppy and uncontrolled. She still ends up getting the crayon on the paper and several other surfaces can hold a sippy cup although a bit unsteady, crawls well, cruises pretty good. Is very affectionate with me, papa, her grannys. Hugs and kisses on her terms, lol. Good eye contact. Can't use a spoon and pincer grasp isn't great. She tries like crazy but drops stuff. Honestly I'm so confused. Just hoping the neurologist will shead some light. Sorry for the rant.

 

[sequeena]

Yeah that's what the plan is but it's waiting for everything to happen The glasses were surprisingly not as bad as I thought. They're made of like a rubber material so really bendy and they have a strap that attaches to each end of the glasses and goes round the back of his head. He didn't like them at first but is used to it now (just takes them off when he decides he's done with them rather than pulling them off all the time). I was quite upset when they told me he needed glasses but not surprised because both me and his father have eye problems. They really suit him and they've helped quite a lot with his balance.

Gosh, lots of running round in circles - I completely understand that! Definitely sounds like the trauma has caused her delays funnily enough Thomas also had plaigiocephaly. He still has a slight drop on the side of his head but it has got a lot better.

As for her feet Thomas also walks with his feets pointed out sometimes. I'm not sure if it means there's a problem or if he's just being a toddler. He has flat feet too (god his problems just seem never flipping ending!!!!!!).

Thomas has only just started using a fork properly and spoons are still hit and miss so please don't panic too much about that. She'll get there, she just has to keep trying.

How's your LO with puzzles? Thomas can't do them at all and doesn't have enough patience/attention to do it which his speech therapists have picked up on.

 

[essie0828]

As far as puzzles go she is the unpuzzler. Lol. She will dismantle them but rarely puts them together. Stacking toys are the same. She will unstack them but I have seen her put 2 larger stacking cups on top of one another. As far as stacking 1inch blocks....not yet. She will wave her hands and shake her head no if i push her to hard sometimes to. Like no mom im done with blocks and cups and off she goes to something else. But she will sit for stories for a long time. Sometimes I think she gets frustrated having to try so hard.

 

[sequeena]

Thomas is not good with stacking either, our kids are so similar!

Thomas will bring me books to read to him but as soon as I start he's turning the pages

 

[essie0828]

She's still very mouthy to. She is teething but most everything goes to her mouth. Im sure she ate a bit of crayon on occasion And she will eat paper at any chance. She will be sneaky about it to, just to get a little nibble before mom snatches it away. Lol

 

[essie0828]

Hayley can only "help" with the cardboard books for now. She will rip regular paper and crumple it. I can tell her no and hold the book slightly outta reach and she will just sit and listen. But cardboard books she will get excited and turn the pages fast to. Lol.

 

[sequeena]

LOL Thomas is the same! He's cutting canines at the moment (his teeth seem to be the only things that happen at the proper time haha) and he can't draw for long because they end up in his mouth

 

[essie0828]

He sounds like a fun lil guy Does he point? Hayley will look at something and then look at me like "I want that" She will however follow where I point to an extent.

 

[sequeena]

Yeah he learned to point a few months back. Every morning when he wakes up he points at his bedroom door (as in I want to go downstairs). He also waves when you say bye bye. When it's bedtime I say 'go say night to dad' and he runs over to my partner waving at him

 

[essie0828]

Aww that's excellent. Hayley doesn't wave yet. Still working on that. Thomas is doing a lot of good things, he doesn't seem to be delayed very much. Let's just hope they catch up in their own time.

 

[sequeena]

Aww that's excellent. Hayley doesn't wave yet. Still working on that. Thomas is doing a lot of good things, he doesn't seem to be delayed very much. Let's just hope they catch up in their own time.

You'd be surprised, compared to other kids his age he's very behind especially speech wise.

 

[essie0828]

Hayley had her eye appointment Tuesday and she was diagnosed with mild amblyopia. We have to patch both her eyes alternating days. So like right eye Monday Wednesday and friday. Left eye Tuesday, Thursday and Saturday. Only for an hr a day though. She's doing well with it so far. No specs for now

How's T?

 

[sequeena]

Aw bless! I had patches as a child

He's ok. Not much of an improvement. He did stack a few toys the other day which I was impressed with

 

[essie0828]

Yay for stacking!! Lol. I still have the unstacker on my hands

 

[sequeena]

Haha T still loves that or he'll just chuck everything!

 

[Tegans Mama]

Hiya Tegan has GDD, she was around 18 months behind last september, she's up for another assesment this year and I am dreading it I feel like the older she's getting the bigger the delay. Her speech is quite severely delayed, she doesn't speak as well as my (slightly advanced) 2yr 10 mo old niece and she is five this month.
She also needs glasses, her vision is quite poor. She is meant to be going into year 1 in September, and I really don't think she's ready. I know I'm not ready for her to go into year 1.
Basically when she was born we were told she could be anywhere between cognitively normal, and severely learning disabled. Since she already has quite severe physical disabilities and her health is generally poor (she has spina bifida and is paraplegic, doubly incontinent, hydrocephalus, chiari malformation, two clubbed feet, dislocated hips, muscle contractions in her legs), I was really hoping that she would be developmentally average, but it turns out she's not.
Anyway, I'm really tired but I will be back tomorrow

 

[sequeena]

Oh that's a lot to deal with

Is there a way to delay her going into year 1? I don't think I'd be happy with it either and if T is still delayed by next September I don't think I want him to start either.

Are you getting a lot of support?

We had a bit of a break through today. Thomas finally managed to complete a shape sorter. The triangle and star shapes have been a problem for him but he did them today

It's his birthday next week and he has 2 appointments that day. One with his plastic surgeon and one with his occupational therapist. I hope those go well. We're still waiting for a specialist HV, there's around 20 children on the waiting list.