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

[bumpin2012]

We finally have an appointment in the developmental clinic... April 1st. Hopefully it will be a good appointment. G has come so far in the past few months. Really hoping they will tell us that he will eventually catch up.

 

[nicki01]

Hi all, hope we all ok, I've not been on just lately as been mega busy. Sorry to hear of T's fall. I will catch up on everyone one evening this week hopefully!
Preparing to move and very little sleep is taking its toll. Been really poorly just lately but hopefully getting over it now.
Having an emotionally tough day today, I'm angry at the world, its stupid but I just want the very very best for my girlie and after a chat at salt today I feel like I've been kicked in teeth and had my heart pounded! It's all things I already new but to have it broken down and explained has really gotten to me.
Having a rant and feel sorry for myself day!

 

[sequeena]

Hugs nick we all have our down days. Sometimes it does just get too much.

bumpin that's fab I hope his appointment goes well

I got hold of my physio today and Thomas will be assessed for soft ankle braces

 

[essie0828]

Awesome news bumpin! I hope his assesment goes well hun. He seems to be doing great Hows little lady doing in there?? Kicking up a fuss much? Just over 2 months left and you will be a busy momma of 2!

Nikki I understand how you feel hun. We have had our 6month review through our early intervention services and, well it's hard to swallow. DD communication level is around that of a 12 month old and her gross motor skills are around the level of a 15 to 18month old. Its an improvement but she still has so much more to catch up on. I worry that she won't be able to function well in a school setting

Sequeena glad to hear that T will be getting checked out for braces. I think you will be amazed at the stability it will give him in his entire body. Hope you can get them soon Lol the downside is he will be super fast now. He will probably run you silly

We got good news Friday, our DLA was approved! Its actually called SSI over here but we got it! The full benefit! And backpay from January of this year. We start her full therapy schedule back up next week with the addition of hippotherapy soon Now if I can just quit throwing up all will be well MS is kicking my butt in a major way. I was really sick with DD as well and hoping it's a good sign. ray:

 

[sequeena]

Oh that's fab news essie it will make such a difference Sorry to hear about the MS though!

Thomas had a bad day yesterday joints wise. He face planted the floor more times than I can count but has been better today. He always goes through these patterns, 1 good day = 2 bad days.

 

[essie0828]

My kiddo does the same. One day she will be all over the place walking in her walker, cruising, and taking a few independant steps and the next day is a struggle to get her up off her knees. She has had a couple falls lately that have dampered her confidence in walking on her own

 

[Peanut78]

Big hugs Nick

Bumpin good luck at the appointment, it sounds as tho things are going well

Sequeena/ Essie - our Theo falls over a lot as well. For him his issues with motor planning mean he has poor control over his movements and coordination. We also have the "good" and "bad" days. I've come to realize for Theo as well that he gets so exhausted because he literally has to expend double the amount of energy on trying to balance and coordinate his movements It does get better all the time tho and OT really helps him

 

[bumpin2012]

Thanks ladies he scored well on his last assessment, so I'm hopeful. He's really coming along. Very hit and miss on his words, one week he's got so many words, then weeks of nothing...

Essie, little miss is becoming an active little monkey... she's still transverse, and persistently so. My Dr isn't worried yet, but I sure am!

YAY for back pay! I guess going back to work is on hold for a bit?

 

[essie0828]

Thanks ladies he scored well on his last assessment, so I'm hopeful. He's really coming along. Very hit and miss on his words, one week he's got so many words, then weeks of nothing...

Essie, little miss is becoming an active little monkey... she's still transverse, and persistently so. My Dr isn't worried yet, but I sure am!

YAY for back pay! I guess going back to work is on hold for a bit?

I bet she will turn soon. She's still got some wiggle room left for a few weeks. And yes mam work is on hold DH is going after a better position at another company and he has told me he would prefer if I stayed with DD a little longer. I still miss the interaction but I may be able to get back into online classes and finish up a degree in the meantime. If the new bean makes it I'll probably be a SAHM and student a little longer. There's a great OT program in our town and I already have a lot of credits that will transfer. I have met most of the psychology credit requirements and have 2 semesters of anatomy and physiology that will transfer. Still need quite a few math credits though.

 

[essie0828]

Peanut my kiddo has motor planning problems as well. And she is definitely more wobbly on days she's tired. She has to really think hard about every movement so after just a few hours of regular activities she's brain drained and tired.

 

[sequeena]

How is everyone?

I am becoming increasingly frustrated. You know the issues with Portage she's very unreliable. Last week she was meant to come at 11:30am. I rang at 12pm and was told she wasn't working that week I was told she'd ring me about this week's session and she hasn't. Today is the day she's meant to come and of course she didn't turn up. I rang her office and can't get hold of anyone so I've left a voicemail. This is a waste of both mine and Thomas's time I could do other things to help his development.

I finally FINALLY got a urine sample from Thomas. It wasn't easy and I've no doubt they'll want another (it wasn't 'fresh' I kept it in the fridge overnight) but it was the best I could do. Thomas is terrified of having anything near his genitals and it's been so stressful trying to get the sample from him.

My SIL gave birth to a gorgeous little boy 2 weeks ago. His name is Noah Thomas Sean loves him and seriously wants another child. I am torn. What would you do in our situation? There's a possibility Thomas's problems may be genetic. I admit I am very broody and all my friends are now pregnant or just had their second children but I am very wary of passing on a possible genetic condition to another child

Thomas is his usual self. The falling has been less frequent recently which is good news. He's started parroting 'love you' which is so incredibly sweet. He can only say uh oh and ready steady go independently. I hope he starts saying other words by himself very soon

He has an ophthalmology appointment next week and the week after we're on holiday!!

 

[bumpin2012]

Im assuming that T has had he genetic testing started? Any idea on how much longer the results will take?

TBH, I think in light of the genetic component, I would be inclined to wait until I had those results before TTCing. Had we been seen by a pediatrician and had known there *might* be a genetic issue with G BEFORE we were pregnant, we would have waited.

On the flip side, If this were to be a genetic issue, would you and Hubby be content with having an only? Would the risk be worth having another? That's something only you and hubby can truly decide. Would adoption be something you would consider?

Im sorry your in such a tough place.

As for the portage, I'd be beyond irate.

 

[Peanut78]

Portage are such a joke - I mean this is getting ridiculous! Please tell me you are going to file a harsh complaint!

Yay for the "I love you"

Ya, the whole genetic thing is a big question on my mind as well. Three times I've raised it was various doctors. First the paed who said he didn't think it would lead us anywhere and that genetic does not necessarily translate to hereditary (not so helpful perhaps!). Secondly I asked two independent paediatric neurologists who equally both said they didn't think it would lead anywhere and that you have to know what you are looking for in the genetic test and in our case we simply don't know. The last paediatric neurologist we saw said she DID think he should have some genetic testing (but to be honest I didn't have much faith in her or how competent she is...). We'll be trying to see a private paediatric neurologist when we visit the UK this summer - will be interesting to hear what they say.

I was already 26 weeks pg when we had confirmed through an MRI that T had a neurological condition. It was awful I spent the rest of pg petrified our second baby would too. I also spent the first year of K's life on "milestone watch" constantly. The day he sat and crawled within the time-frames he was supposed I began to breath. I was all set to go ahead and ttc number 3 without a genetic test, but am now leaning more and more towards having genetic testing done (especially if we indeed do go ahead and TTC - not decided on that one). I guess you need to ask yourself whether you would ttc anyway depending on the outcome...? You also don't want to spend your entire pregnancy with mega anxiety about potential outcomes. How soon do you expect to have some answers?

Bring the holiday

 

[RachA]

It's a really hard one to work out Sequeena. Part of me would be tempted to wait but then you could be waiting ages and then the gap would be so big between the two that they don't get on etc. I guess i would have to look at if i could cope with two children with the same issues.
I know it isn't quite the same but to some extend most parents go through the issues of 'can we cope with another one' even if their children don't have any other health issues. I know that we did because DS was such a nightmare with his behaviour from being 18 months old. I was already pregnant at that point on wondered what on earth we'd done. However if we'd of waited before TTC in order for his behaviour to get better than we'd of more than likely ended up with in excess of a 5 year age gap which i wouldn't of liked at all.




Things with Esther are just drifting along. We've just been away for 5 days and left the children with family - both of them coped well although apparently Esther was a little more clingy at playschool that she usually is. Her speech is improving. I've noticed since we've been back that she is using the odd linking word here and there

I don't know if i should be reading anything into it but this morning when i dropped her off at playschool i had a chat with her key worker to find out where we are with regards to the reports we need for her Statement. We are still waiting on the one from the Educational Psychologist but apparently the Inclusion Officer person has said that it's looking hopeful that a Statement will be in place by the time she starts school in September. To me that sounds like they think she will be given a Statement but i don't know if i'm reading too much into it.

 

[essie0828]

Congrats on your new lil nephew sequeena It's a hard decision that you face in adding to your family but I do want to say that genetic conditions are so complex. Depending on the gene, what chromosome its expressed on and other factors another child born to you and Sean could be totally normal. There will always be that risk though. And it may have nothing to do with your or Seans genetics, sone genetic syndroms are caused by environmental influences. Also I don't think that all of T's issues are genetic, has he had a brain MRI? Since he was a pprom baby and he had a head injury as an infant I'm inclined to believe some of his problems are from those events. It's a hard choice and being newly pregnant myself I can tell you that it is stressful and I worry that something may go wrong with this baby. But I look at DD and our lives, we're different than most but we love this life. Being parents is what we have decided to be, even if that means our kiddos are special or different, they are ours and I know we can cope. I'm actually a bit worried about how to deal with a typically developing child as all my experience comes from DD

 

[essie0828]

Girls I am exausted and the bed is calling. Want to catch up with everyone soon. Rach, peanut, bumpin, Been reading about the kiddos and keeping up with them but just too busy to really reply. Hope all you ladies have a wonderful weekend and upcoming week

 

[essie0828]

Btw, about the urine sample, did they give you one of the bags to try? He may not allow it but they have sticky tape that holds them around the genitals until he pees in it. You may be able to trick him into thinking its a part of his normal diaper change by trying it a few times. It tucks into a diaper nicely. Other than that they may want to do a cath on him. That really sucks. Hope you don't have to go that route.

 

[sequeena]

Thanks for the advice everyone. It really hurts that we can't just decide to have a baby and have all the fun/frustration of TTC I am so annoyed with myself, I am so thankful to have Thomas, he should be enough but we want another and I desperately want him to have a sibling close in age to him. I remember when TTC him that people who moaned about having more when they already had children were nuts and ungrateful. I have to eat my words!!

His pediatrician has said that his head injury at 5 months has had no affect on him. It may have done at the time but it's had no lasting effect and certainly hasn't caused the problems he has now. I'm not so sure she can confidently say that when he's not had an MRI but who knows she may be right.

Adoption is something I would consider but I know we wouldn't be accepted for various reasons - my history of depression, self harm and overdose for one. It's completely behind me now (unless I ever get PND again) but that puts us straight out of the running because of the stigma. My aunt's SIL is fostering 3 of her nephews with the hope of adopting them and they are having to jump through so many hoops it's unreal.

Genetics wise his pediatrician has warned it will take a long time. We've not even met the geneticist yet we've just had the initial tests. I've not heard anything back. I am really hoping it's not genetic and all this worry is for nothing but there's that part of me that thinks there's just too much coincidence for it to not be genetic and since finding out Sean's nephew has autism it makes me wonder are the problems even on my side of the family? It's a coincidence... maybe too much of one for both grandchildren to have such similar disabilities and they're only 5-6 weeks apart in age. They haven't seen each other for a year so it's certainly not learned behaviour (not that I think you could 'learn' these sorts of things anyway).

It's just so confusing I feel ok right now but I have days where all I can think about is having another child. I know exactly when I'm ovulating (I get pains) and also get loads of EWCM and it just feels like we're constantly losing the chance to have another child.

And then of course there's the worry I'd PPROM again.. I don't believe we'd be so lucky I still can't believe we have him here and for the most part healthy.

Basically I can't win either way

I'm so glad Esther's speech is getting better! It's so wonderful when they master a new word.

Oh the urine sample - no I got nothing for it. It's so frustrating everyone I asked said they don't have the pads or bags anymore. Eventually I got it by plonking him in the shower for 45 minutes and catching it with a bowl. It was diluted and had to be stored in the fridge overnight but I am NOT doing it again without some sort of aide. I'll tape a bag to his genitals myself if I have to. The moment he saw the bowl he started screaming but thankfully I managed to catch some urine (and shower water!).

Almost 1 week until we go away. Woo!

 

[bumpin2012]

That's tough hun. I would think, the best thing to do would be a discussion about how you would handle another baby like Thomas. In a way, it would be easier as you are ARE handling his difficulties. But having 2 could be very difficult to juggle. A developmental normal baby might be more of a challenge...

I think I would be inclined to wait, but I might be a bad example as I DIDN'T wait, knowing that G was having difficulties...Lol.

 

[nicki01]

Haven't had time to catch up with everyone. Although I have been reading the posts just no chance to reply!
Sorry your havin a tough time sequeena, my 2 have a 31 month age gap, had I have known Charlie is autistic I think I would have waited, I struggled alot at the begining as for the first 6 months Charlie hated tori, she would scream an hysterically cry every time tori did which was alot as tori is a high needs baby! She is clingy and cries alot! We also had feeding difficulties at 4 months when she was loosing weight and that was hard managing them both, however having said all of that, I'm so glad to have tori. They love each other so much now, tori smiles and giggles at her all the time and Charlie wants to give her lots of cuddles which is normally a no go!
I think my mind says I would have waited but in reality I had an ectopic of twins and 2 Miscarraiges before tori and had I not have got pregnant when I did I probably would have even knowing Charlie has her problems! Its a hard one!
Neither of my girls get left out, they do have to wait a little whilst I sort one or the other and as hard as it was I managed and still do! When you don't know any different you just do it, Charlie's bad days are a battle and I'm exhausted by the end of them but what's a bit of hard work! I'm super scared as to whether tori is autistic as i have declined a blood test for charlie and do find myself milestone spotting and questioning every little thing she does but no matter what age gap I would be doing that anyway! I will worry about that when the time comes.
I hope you make the decision you are comfortable with for you and your family! Xx