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

[Vampire Mom]

We are in Nebraska. UNMC is our usual hospital/specialist group. They're really nice, treat Hannelore so gently, and do work with each area. Some NS therapy is contraindicated in EDS for example, so they work to find therapy that helps her versus harm.

But there's only a few EDS experts in the US. Two wouldn't take her as she's got NS. Yet the one with a cardiac background refused her because of NS cardiac risks. Dr F is in Baltimore, so it's quite the trip to see her. I called to set up an appointment, sent pictures and her history. Dr F called me that day and said to let her office know when we could get to Baltimore, she'd get Hannelore in that day no matter what.

But if it's seen in EDS hypermobility, Hannelore shows it. She's dislocated 9 joints in one seizure. Her upper body is better since she pulls herself around at least.

But we have an appointment with Dr F in November. So we'll see what she says. I honestly think this may be her limit. She's tiny, 23" and 19 pounds, and can't independently support her weight. She's just going to get bigger, making this worse. Plus, she badly wants more mobility, but has melt downs because she can't.

But, I still feel like we would be giving up. Doesn't feel like there's any good answer.

 

[sequeena]

I know some of you have experience with seizures/epilepsy. A nursery nurse at the children's centre thinks Thomas may be having absence seizures. He went into a trance lasting around 10 seconds and she couldn't get his attention. She asked if he does it at home and he does several times a day but I thought he was day dreaming. I'm going to monitor him and ring his paediatrician but does anyone else's child have this? I know that the majority grow out of it but it is managed with medicine.

 

[Vampire Mom]

Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.

 

[sequeena]

Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.

Oh no that's awful

 

[Vampire Mom]

Yup, Hannelore has those. Unfortunately we haven't found a medication that controls those without negative side effects.

Oh no that's awful

Her new protocol seems to reduce them and they're short (10-15 seconds) and 2-3 a day.

Tegretol did stop them, but she was extremely violent - husband and I both have scars from her - and we found out the violent fits were seizures. So not worth it.

Cocaine and methadone do not do nice things to developing fetuses. The seizures are from that, so they appear stable and not getting worse. But we haven't yet found whatever is 100% effective for her.

But under 60 seconds of minor seizure activity daily is better than 90 minutes daily and usually one 30+ minute seizure that warranted an ER trip.

 

[essie0828]

My little cousin has absence seizures as well. We all thought the same about him, that he was daydreaming. They were very short and until he had a really bad one no one knew. That's a bummer that T might have them. Medication for it is tricky, some of it makes kiddos really tired. I do have to say that since starting the meds for epilepsy my little cousins speech improved a lot.

 

[Vampire Mom]

T has sleep disorders, correct? I want to say it's Keppra that helped Hannelore most with absence seizures, but she's on three drugs (phenobarb and gabbapentin) so I'm not sure which does more. But any of those have helped her to rest at least. Some nights are not sleeping, but she stays in bed.

 

[Vampire Mom]

Today was pretty decent. I was testifying in court suddenly - supposed to be Monday. Bribed Hannelore to get dressed and moving, then she sat with her honorary grandpa Papa Mike and watch videos on the tablet. But she was quiet and calm for 4 hours. Then dinner with Mike and Sandra, and Hannelore fell asleep on the way home.

I was expecting toddler tantrums, but she didn't have any.

 

[annanouska]

I would request an EEG though your paediatrician or gp tho id imagine gp may tell U to go to paed!

My sister had them untreated and was ok, just a bit slower learning Marcus has them and obv his night seizures too. The tegretol has been great for him and calmed him a lot but obv didn't work for vampire.ive heard terrible things about keppra but that seemst be helping them so the drugs are so individual.

Absences aren't in general too dangerous so can be managed just waiting them out but the can really impact learning so if offered a treatment it may be worth seeing if it helped Thomas developmentally? U would need to be guided by the EEG and MRI too.

They a terribly hard to pick up on, I hardly always notice half his absences

 

[Vampire Mom]

All anti-seizure drugs have the risk of pretty vile side effects. I honestly don't believe any is worse than the rest in a general sense, but based on individuals, some are great and some are dangerous.

Suspicion on why Hannelore has difficult to manage seizures is because it's from induced epilepsy vs idiopathic. Cocaine exposure is known to induce seizures, but every child is different on how good or bad they respond. We hope she'll outgrow the seizures, but her team feel it's permanent because she does have other disorders which aren't consistent from person to person, so she just has too many things going haywire.

Yes, we'd love her to be healthy and with fewer issues. But she isn't and she's been ours from the day the nurses let me kangaroo care her at 9 days old to try to soothe this tiny, sick baby who had no one. I broke down during the Tegretol fits because we couldn't handle her, the violence was to the point we were looking very seriously to institutionalize her, but I couldn't stand losing my child. Dr ordered an EEG then, fearing the epilepsy was getting worse, but everything looked like her normal until she started an attack. And then I broke down again because we had let our precious, beloved baby suffer for weeks and not done something sooner.

Today's news -

Orthopedic doctor voted wheelchair. So we're ordering once Dr F recommends one.

Vascular system looks good. Yay!

Got a new car seat. She was in a Britax Advocate, but not enough leg room with her braces. The favored US leg room seats were dangerous for her. So went with a Diono Rainier as she can put her legs over the sides comfortably. She loves it. So I love it.

We're moving this weekend, so I'll be away mostly. But yay, fully accessible house vs lots of stairs.

If you're in the US - Zinsser has a no VOC primer and Ace Hardware has Valspar Optimus which uses liquid colorant, yet is a true no VOC paint. It's a godsend! Most true no VOC paints use powder colorant that's horrible to use for even color. These are crazy $$$$$ for paint, but it's safe for me now and Hannelore with her fun. And the colors are GORGEOUS and glow in the light. And the flat works as chalkboard paint!

 

[RachA]

Can I just say Vampire Mom that your lo's name is do cute .
Did you get to choose it?

Glad about the wheelchair

 

[Vampire Mom]

Move is 75% done. Just need to unpack, but really that's not important. All but two boxes are totes we just had for storage so they can stay. Last two are random stuff I'm not sure we need.

Unpacked only as I am not allowed to move stuff, so got a load dropped off and Hannelore and I unpacked until next load came.

Someone LOVES this house. It's all one floor so she's gone crawling all over. Plus, all solid floor which all of us like better. Some princess didn't like crawling on the rental type carpet, it hurt her hands and was unfortunately permanently dirty. She wears gripper socks inside so she can still pull to stand well and do her shuffle steps around things ok. I like that it's easy to clean.

Her room is very very purple, it's a Valspar color called Hatter's Plush. The lower wall is flat for chalkboard, upper has a beautiful rose damask print metallic stencil from my sweetest mother in law, with a metallic picture rail so someone can change pictures to her desires with some help. Plus, we have a new big girl bed with a canopy. And a fluffy Star Wars rug from Think Geek. She ADORES her room. She drags the rug around to sit on to draw on her walls. She's played happily, alone for 3 hours.

Yes, we did get to pick her name. It's a family name, which was important to us. DH's family have considered her family from the day we got the call. We were going to lunch with his parents when we got the call about her. We cancelled lunch as such, his parents had a teddy bear for her within an hour. Someone is a bit spoiled by Grandma and Grandpa.

 

[RachA]

Your post made me smile Vampire Mom. Sounds like she loves her new room
It's a really cute name-it's nice you got to choose it. And it's great that the wider family see her as family because actually she is. It doesn't matter that you didn't carry her or labour with her-you choose her


All fairly uneventful here with us. Esther is getting on well at school. I had a bit of a wobble last week when homework was sent home. Esther didn't get any so I queried it with some of the other mums (we have a Facebook page for the reception children at the school) and some of them posted a picture of the sheet that was sent home. Esther definitely didn't get any because she's just not able to do what they are asking.
It's also her birthday on Saturday. She's got a party next Monday-I only know 1 of the other parents so I'm going to find it hard. And unless any of the children have said anything then none of the parents know that Esther's got speech problems. I really don't want to have to explain what's going on with her but I expect I'm going to have to. Actually makes me want to cancel the party but I won't because it's not fair on Esther.

 

[annanouska]

rach meeting the parents will be ok the main thing is Esther has a nice time and is happy which im sure she will be its great to hear how she is doing and settling in, I think we will be in the same dilemma as you were regarding mainstream or special. Right now I feel he's not needy enough for special school but not forward enough for mainstream going to play it all by ear I think.

I'm bored of limbo had two meetings today with the inclusion person and hv both agree lots of ASD tendencies and deff has something going on but still can't get a diagnosis. I heard some Info from a mum whose son is quite severely autistic we know from salt and she said they are keen to not diagnose ATM due to funding

I'm majorly struggling with this "language disorder" how he can say such long sentences but can't say basic words eg milk toast mummy food etc. he can't verbalise his needs but we had again "oh no where's daddy gone. Oh look there he is" it's not perfectly clear but could be understood by a stranger. I just can't u der stand how its "normal" / just part of disorder not a wider issue.

I am going back to work next week after my couple months poorly. They said I HAVE to go to a meeting with occ health tomorrow but can't nderstand why its so hard for me to Bring Marcus.they know his issues but they can seem to grasp how he will struggle to cope.ive nobody to have him so I've made a now and then board and I'm embarrassed to say ill be taking an iPad and also sweets.

iPads....the specialist hv inclusion person seems to thinkipads are great for social communication issues? I try to avoid it but he does love it x

 

[Boo44]

Rach - I feel for you with Esther's party. There have been a lot of times I've felt like not going to things or avoiding J's friends because of glaring differences, but I suppose each time I go I do feel a bit better actually. I think I build it up in my head that he is so far behind, then the reality isn't often as bad. I do really hope Esther has a great party. I'm not sure about school and homework but surely they should speak to you to make sure you're aware of the 'usual' homework and perhaps have some individualised version for Esther?

Annanouska - how exactly does M speak? Sort of day-to-day? Does he have multiple long sentences or just the one? How does he communicate his general needs?
J loves the iPad too. Our SLT gave us a list of apps that are often used for speech therapy I can copy it out if you like. At the moment J likes to play puzzle games and colouring games on the iPad

 

[annanouska]

I'd love to know about apps! I kind of thought iPads were evil to toddlers so never really offered it before.

how does m speak....well....he doesn't really. We are at a point where he does say a few random things now but he does t really talk. He will periodically point to the cat and say cat, door, light. He doesn't ask for anything, the only basic need type word he can say is anna for banana. Then we get to sentences...


Other ones he will say"oh where's it gone. Look there it is" "daddy gone be back soon" "where's dads car" it seems like random learnt phrases rather than an ability to actually put words together. He can say them often in context too as i would normally say things like where's dads car etc when we go on tot eh driveway. It just drives me insane as even nursery say ohhh his speech is coming along he's saying huge big chunks that's great isn't it

 

[Boo44]

So frustrating when nursery etc think they're progressing yet as their mums we can see exactly what they're NOT doing. For ages Jack just seemed to say the same few things and everything else was a noise. Now he will say words but only if I encourage him, not so much on his own. It is so worrying waiting for them to progress isn't it...

Ok so apps...

Articulation station
Talking Ginger
PCS flash cards
Bla Bla Bla

I haven't actually looked at these yet so do let me know if they're any good!

 

[Boo44]

I'd love to know about apps! I kind of thought iPads were evil to toddlers so never really offered it before.

how does m speak....well....he doesn't really. We are at a point where he does say a few random things now but he does t really talk. He will periodically point to the cat and say cat, door, light. He doesn't ask for anything, the only basic need type word he can say is anna for banana. Then we get to sentences...


Other ones he will say"oh where's it gone. Look there it is" "daddy gone be back soon" "where's dads car" it seems like random learnt phrases rather than an ability to actually put words together. He can say them often in context too as i would normally say things like where's dads car etc when we go on tot eh driveway. It just drives me insane as even nursery say ohhh his speech is coming along he's saying huge big chunks that's great isn't it

Is that like echolalia possibly? Or not...

 

[RachA]

Anna-he sounds a lot like Esther with her speech. For the longest time she wouldn't say many single words and we've only had short sentences in the last 6 months. But she would repeat verbatim some songs and nursery rhymes and even some sentences that she learnt but didn't necessarily understand totally.
It's something to do with the way the pathways work in their brain. Children obviously learn by repeating anyway but with children like Esther it just takes longer for things to sink in. She's very visual so if there is a visual clue to the word she is more likely to learn it. Even so lots of things don't sink in (like i can't for the life on me teach her to say 'a, b, c.....'.


Boo - yes the school are going to be sending us Esther specific homework. The reason i queried it with the other mums was because the folder that her homework is sent home in came home but with nothing it it. But Esther had been playing with it so i wasn't sure if she'd lost it lol.


Thanks for the comments re the party - i'm sure it will go well. Esther won't be bothered by the fact no-one understands her!! After i'd picked her up from school we were waiting for her big brother to come out and she was playing on some steps near the school office. This little girl comes running out and says hi to Esther, all smily and stuff. Esther just smiled back at her and didn't say anything but the girl wasn't bothered by it - i managed to establish that she's in reception with Esther but not in the same class. I do find it amazing how easily children accept each other - wish adults were more like that.

 

[sequeena]

Hugs for everyone x

Thomas is a massive fan of Gigi (what he calls our tablet). Unfortunately all he's interested in is Youtube. He watches cartoons, nursery rhymes etc.

Thomas is doing so well with playdoh I'm really pleased. He doesn't like to mix colours though he will only play with one colour at a time.