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

[essie0828]

Hi ladies.

Well our fears and suspicions were confirmed today. My beautiful baby girl has diplegic cerebral palsy We have an option to get an MRI but it won't change the diagnosis, it will only help me prove a malpractice claim should we choose to go that route. The neurologist diagnosed it very quickly. I have always suspected that these doctors knew what was wrong but wouldn't tell me. She had X-rays taken of her skull today and we are waiting on an appointment with the plastic surgeon for a helmet to help with the plagiocephaly.

 

[sequeena]

Hi ladies.

Well our fears and suspicions were confirmed today. My beautiful baby girl has diplegic cerebral palsy We have an option to get an MRI but it won't change the diagnosis, it will only help me prove a malpractice claim should we choose to go that route. The neurologist diagnosed it very quickly. I have always suspected that these doctors knew what was wrong but wouldn't tell me. She had X-rays taken of her skull today and we are waiting on an appointment with the plastic surgeon for a helmet to help with the plagiocephaly.

Oh honey. I am so sorry, I don't know what to say did they explain what can be done to help (apart from the helmet)? I am so angry for you that it's taken this long to get a diagnosis and a straight answer!!

 

[sequeena]

Who has facebook? We could keep in touch more that way I think/offer more support. This is mine if anyone wants to add me; https://www.facebook.com/sarah.woolcock?ref=tn_tnmn

 

[essie0828]

Sequeena thanks for the support dear.

The neurologist said the helmet probably wouldn't improve her symptoms. It's an aesthetic thing mostly. The treatment for CP is basically what we have already started doing on our own with the First Steps program. Therapy to improve her cognitive function and motor skills is our best bet. The more the better. CP is basically brain damage but children have an amazing ability to "rewire" their brains. The damage will always be there though. Since she is now technically disabled we qualify for more help and have access to more programs. That's a good thing but it's sooooo hard to even say that my daughter is disabled That word literally chokes me. Seequena I have Facebook I will add you soon. Btw. None of my family except my mom know Hayleys diagnosis yet. We are kinda keeping it on the down low for a while.

 

[essie0828]

You should be getting a friend request from Hayley soon .

 

[Feathers]

Oh I'm sorry to hear that I suppose the only bright side is that you have a diagnosis and hopefully they can move towards helping your LO properly now. Early intervention can be a massive help with these things so hopefully they support all falls into place for her and can make as much difference as possible in these early years.

I'll send you an add on FB Sequeena so you'll get one from Ariana soon.

 

[sequeena]

OK you cry, hit pillows whatever. Tomorrow is a new day. Now you know what the problem is you know how to combat it. She will still lead a good, full life

Hi Hayley :wave: Don't worry I don't comment on fb unless someone mentions it themselves x

 

[RachA]

Did she go fully to sleep for the MRI or just sedated? Her consultant told us she would just be sedated? I suppose...it needs to be done though.

Esther went fully to sleep for hers. Tbh I think I'd rather that than the sedation. Esther came round pretty quickly afterwards. There was a little boy who had one done and he was sedated. Because the sedation is for x number of hours-I think usually around 4-he was out of it for ages. He went down before Esther and was still sedated for about 2 1/2 hours after we got back and when he came round he was really doppy still.

 

[RachA]

So sorry Essie
Honestly don't know what else to say.

 

[RachA]

I tried the link you posted sequeena but it didn't work.

Eta-done it now. There should be a request from Rachel

 

[essie0828]

bet you are so chuffed with being called mummy

Appointments are fun here I still have weekly physio from my broken pelvis and nerve damage in labour with nobody to watch lo so its just a nightmare he gets so agitated. Then add n his appointments too

Hope the neurology appointment goes ok xxx

Broken pelvis! Omg you poor thing. I had physio when I was younger, I can't imagine adding in DDs appointments on top of that. Most of your days would be spent in a car

 

[essie0828]

Sequeena loving the pics of Thomas. He really is a doll! When he takes off running from you in the park I then ran in and showed DH. Ha! I love that.

 

[sequeena]

He's a flipping loon!

Today we had a new sort of tantrum. Screeching, going really stiff (but standing up) and digging his fingers into his palms

 

[essie0828]

Aww. He must of been pretty agitated over something. Hayley does something similar if I don't let her have my phone

The last few days she has taken to biting I have no idea how to make her understand that it's wrong. Although I'm probably encouraging her by laughing hysterically when she gets DH . Man she can leave a nasty mark if she gets angry though. Ouch! She played with a beautiful little boy at the X-ray place yesterday She tried to pet him like she pets our dog though That's an improvement though, she usually ignores other little ones.

 

[bumpin2012]

Following

My little guy is showing signs of delays. He's only 15 months, so they wont see him for "official assessments" until he's 2.

He's been consistently behind his peers by about 3-6 months with the most significant delays in speech and communication. I managed to get him seen for a hearing assessment at 13 months, which he 'failed' We are waiting for auditory brain response test which is scheduled for September.

At almost 16 months, he doesn't have any words. In the past 2 weeks he's started babbling "da da" but never in context. He doesn't know his name, or have the ability to follow any simple commands.

I am hopeful that his hearing test will reveal something to blame his delays on, but I am prepared to hear his hearing is normal.

DH, on the other hand, is not prepared for any of this. He's still trying to ignore the signs.

Does anyone have tips for getting DH to take his blinders off?

 

[essie0828]

bumpin and welcome. That's horrible that they won't assess him until 2. How's his walking/ crawling? If he's coming along nicely with those it could just be his hearing I'm sorry you are so worried without answers. Been there. Horrible feeling I posted a website quite a few pages back. I think it's Teachmetotalk.org. I could be a .com tho. But that site is great! I used stickers and taught Hayley to point to my nose in no time The site was given to me by a speech language pathologist friend of my sister in law. She said it was the best online resource for speech therapy she knew. It's a little technical and there's TONS of info there. Btw I found out that stickers are magical toddler currency for speech therapy from that site There are tons of things you can do with your little man at home that will help loads! Hayley has developed a couple new words in just a few weeks of me implementing what I have learned from this site. But honestly her gross motor and fine motor skills are her worst areas. She's definitely GDD from the CP but speech is improving. She's also over a dreadful ear infection so Im sure her ears were playing a roll in her speech delay. Keep seeking treatment for his ears as adamantly as you can. That may really be an issue.

 

[essie0828]

Oh and as for your OH. Oh lord hunny, men freakin baffle me I had to just let my OH start asking questions and then we researched it together. If he's totally refusing to see an obvious problem, it's probably denial...best leave him to it. That's a part of the grief process dear, which means he Does see something is wrong.

 

[sequeena]

T is a biter too. It's really frustrating. He will bite me even when he's not angry. I have a lot of bruises!

Hello bumpin, welcome to the thread x sorry to hear your LO failed his hearing test hope it improves by his next test! Keep pushing for testing if you can. T had his GDD diagnosis before he was 2 as he was delayed in everything and also has eye problems/genetic abnormality problems.

 

[bumpin2012]

thank you so much, ladies. it's so nice to have someone to talk to. dh just isn't in the same page as I am.

Gabriel sat at 9 months, crawled at 11.5 months and is currently standing for several minutes unaided. he's attempted a few steps, but falls after the first. socially, he's a flirt, and he was seen for an initial assessment at 10 months. he's being followed, but the wait list for a developmental pediatrician is over a year. if his abr comes back perfectly normal, w e will likely be pushed ahead for assessment.

I feel like we're in limbo. I don't know how to help him along, I keep doing the normal stuff wondering if I should be doing something else, but have no idea where to begin

thank you, Essie, for the webpage. I'll have a look at it, maybe it will help me learn a few ways to maximise his communication.

what kind of testing did you ladies have to diagnose GDD? I don't even know what's coming down the road beyond this hea ring test. were any of the tests painful?

 

[_Vicky_]

thank you so much, ladies. it's so nice to have someone to talk to. dh just isn't in the same page as I am.

Gabriel sat at 9 months, crawled at 11.5 months and is currently standing for several minutes unaided. he's attempted a few steps, but falls after the first. socially, he's a flirt, and he was seen for an initial assessment at 10 months. he's being followed, but the wait list for a developmental pediatrician is over a year. if his abr comes back perfectly normal, w e will likely be pushed ahead for assessment.

I feel like we're in limbo. I don't know how to help him along, I keep doing the normal stuff wondering if I should be doing something else, but have no idea where to begin

thank you, Essie, for the webpage. I'll have a look at it, maybe it will help me learn a few ways to maximise his communication.

what kind of testing did you ladies have to diagnose GDD? I don't even know what's coming down the road beyond this hea ring test. were any of the tests painful?

Just wanted to jump in - my son was about 6-12 months behind they did nothing but watch and wait he had a bit of Physio as he had double jointed ankles but other than that nothing. Sam is now 3.5 and behind in gross motor still (he didn't walk till just over two) but everything else he has caught up. He is fine - so sometimes they are just taking their time.

Sam has had assessments called a schedule of growing skills which if you are in the UK your LO should get - these cover nine areas and give you an overall picture they are all play based and not invasive at all let alone painful (like stacking blocks, drawing a picture, doing a puzzle etc)

Xx