Any Cerebral Palsy parents out there :)

[essie0828]

That's very interesting about the EDS. I'm almost positive my DH has EDS as well. The CP clinic doctor said basically the same as you. EDS is very similar to CP and treatment is similar. He did agree after seeing DH that Hayley should have a genetic referral. We have an MRI scheduled Dec. 10 then we go for the genetics counsel. Yes lots of thyroid issues here. Im hypothyroid and have been since childhood. DD might be hypothyroid but hoping another thyroid panel will tell for sure. Lilesmum is hypo I think with high antibodies. Speaking of, I hope her little guy is ok. I'm afraid she has had to take him to hospital again.

Lilesmum hope y'all are ok. Hope Lil Simon is feeling better,

 

[lilesMom]

Hey sorry
We r ok Xx
My phone is,being weird
It keeps sticking
And the notification of these posts are only coming through sometimes

S is still having fits despite sixth med raise, argh
But they are milder
He isn't sick anymore either thank God

Welcome mummy3
U must Google eds, I'm sorry I don't know much x
My lil munchkin has cp, right sided hemeplegia and epilepsy
Had infantile spasms
But now battling focal seizures :-D
He is one and a half and the love of my life :-D

My thyroid is hypo
But last year ish I've had some hyper symptoms at tines
Suspected hashimotos, test had high antibodies
But waiting to see endocrinologist but could take forever :-D

 

[mummy3]

Sorry, I might spam the page, full bedrest and time on my hands

Essie, I see your LO has diplegic CP as well, what therapies does she do?

 

[lilesMom]

Essie when is,the,move,planned for xxx
Best of luck getting the,house xxx,

 

[mummy3]

Sorry, I started my last post, had to go sort out baby and only just it finished!

Essie, what EDS type do they suspect for your DH? I have classical type 1, my hubby def has type 3 but he wont go get tested, men! He's hypermobile and has dislocated, so my kids had no chance pretty much. Genetics are interesting, we certainly learnt a lot from our geneticist over the years, he's pediatric geneticist but he's also the one who confirmed my dx and was the one to direct the genes to be tested Type 3 is a shot in the dark though, there's very little in the way of genetic testing, it remains a clinical dx but genetics should be able to give that

EDS comes with varying degrees of low tone, development delays and internal effects. I think it also is linked with epilepsy as I have complex partial epilepsy, as does my 3 year old but the other 4 all have a low seizure threshold. My 16m olds eosinophilic esophagitis is also 8x higher risk with inherited connective tissue disorder and several of my kids have global delay, autism, ADD. Its seems to have effects all over the place. Are you noticing any of these also?

Lilesmom, I'm sorry your little guy is sick Epilepsy can be hard to control, I'm still working on getting control and I'm 31, I have lamictal atm, my 3 year old is on oxcarbazepine, it seems to be helping a lot, not fully controlled but much better. DO you know where Simion's focus is? Mine is the left temporal lobe found during a 24 hour EEG.

Essie, is this the first MRI? ALasdhair goes on Friday, 1.30pm and we have to fast him the whole morning He cant have anything but his special formula so clear juice etc is a no go! I'm thinking to put some sugar in warm water!

I'm hyper with no antibodies. TSH is unmeasurable but thankfully the rest have normalized on PTU. Thyroid, for a little gland, causes a lot of trouble!!!

 

[lilesMom]

Are u on besrest for long?
How are u coping with kiddies x

 

[lilesMom]

Posted at same time :-D
My lil,man had a stroke at birth
In middle cerebral artery on left side of brain.
Its,where his fits and hemi come from
He is on epilim and,lamactil
Started on keppra
Then sabril
Then,added epilim
Then took away sabril
Then added,lamictal

Pain in the bum :-D
All the changes wreak havoc on his tummy

 

[mummy3]

Been on bedrest about a month now, can go to the bathroom and have a shower and that's it aside from appointments, it'll be until delivery I'm 22+3 now, labour has already had to be stopped twice. My kids come early, my form of EDS gives PPROM, that's why the last 3 have been 2 months early. I have a nanny, my MIL is taking care of that, we are very lucky! No way can afford it ourself as Alasdhair's special formula is $1000+ out of pocket and he cant have anything else. Insurance covered it while he had the NG tube but when he eventually was able to use the bottle they stopped coverage. At his next round of scopes we'll be assessing for a J tube though, he's non responsive to elemental diet. Big ramble there!

Epilim and lamictal are a good combo. I was epilim when younger, its good for grand mal, lamictal is effective for absence or complex partial. Tegratol and oxcarbazepine are also good for them. Keppra didn't have much effect. Sounds like you're being kept very busy!!! Keeping up with medications and then medication changes is seriously challenging on the brain, I can never keep up!!

Was your little guy preemie? How old is he? Alasdhair is almost 17m, 15 corrected. What are Simons main symptoms just now? Alasdhair is low tone mostly but with a lot of tightness in the legs, right leg esp drags. He has left hand curled in for crawl. He gets OT/PT/ST once a week at home and a early interventionist 2x a week at home.

EDS does have huge cross over, you should read into it if you get a min My 6 year old is actually due to get a PT here any min for the final step in getting his electric wheelchair His for EDS but the equipment is so similar.

 

[mummy3]

I just read this whole thread, think I'm pretty much caught up, feel like I know you guys in a way

So many similarities all over the place!! Weird on the thyroid too

Essie, you're the states so we have similar therapy schedules, we get ours at home though which is a lifesaver, can you request this through EI? I know I get because my epilepsy means I cant drive but they're usually pretty good at giving the at home option if you ask.

As for the preschool, this I can help with! My 3 year old has been at school since mid march when she turned 3 and EI swapped to the school district. She is in a class with 8 students and a 1:1 teacher or aid to each child. It should be offered in the school district, although its not well known because of the smallness of the class. Her's is for ASD but she also is a fall and flight risk, with epilepsy and tone issues. Seems similar to Hayley (She's Eilidh, pronounced Hayley without the H lol)!!! If its not in your local school or district, you can ask about out of district, Eilidh goes to a school 30mins ago due to our local school not offering enough. My 6 year old was in a mixed peer class like you describe, he had an aid though and still does in first grade. The thing with the schools is you have to push for pretty much anything

Oh and respite is great!!! I have 3 of mine qualify through regional center and its a great thing to have, even if you don't use it for the respite. The waivers you can get are worth it

How are the little ones doing? Alasdhair is tired, he had OT/PT and teacher today lol, everyone seems to be coming at once with the holidays! So nervous for his MRI on Friday!

 

[mummy3]

Oh and the guy that came about my 6 year olds wheelchair, he chose red and wants yellow lightening painted on lol, mentioned getting a rifton gait trainer for my little guy, any experience of them? He goes to orthopedic specialist in a month to get the process moving.

 

[lilesMom]

Sorry caught up but s awake Xx
Proper reply later

 

[mummy3]

Lilesmom, sounds good

How is little Simon today? And you, I hope you're getting a chance to get some rest and a cuppy tea

Simon is a similar age to Alasdhair right? Alasdhair is almost 17m, very fun age, where they're still so little squishy to snuggle with but not so little they may break

How big are the other littlies? Alasdhair is 0.7 centile for height but 60th for weight and over the chart for head circumference, he looks like a wee buddha

I tried to add some pics of him, there's one he is actually enjoying speech therapy! Another of his campaign running at the biggest softplay here in San Diego!! Be really lovely to see some of the other little ones if putting them up is ok xx

 

[lilesMom]

He is super cute :-D
Yeah Simon is,18 months
So very close in age.
S has vomiting bug today and,bit of a,temp
So it's been a hands full day :-D
Il hve to post,properly tomorrow
I've forgotten what,I've,read :-D
Il,try put up pics
But my phone acts up, it may hve to wait till computer

 

[lilesMom]

No luck. My dumb phone
It used to let,me but it,stopped
No idea why

 

[mummy3]

Ooh I have no clue how to work phones, or any kind of technology really lol, I hope you can figure it out so can see pics!

Poor guy Being ill is no fun, I hope he's getting over his sick bug really fast

Take time to relax and try and keep up your energy while he's got the lurgy

 

[essie0828]

Hi ladies.

My little girl has a tummy bug to. Second one in 2 weeks. I'm thinking it may actually be from her starting solids all over again. When she's sick, she completely abandons solids, then gradually weans herself over a few weeks. I have pushed her feeding issues in OT but this is still the cycle she gets in. She's good height and weight. 98th percentiles for height, 88th for weight. She drinks a formula when she is off solids, it's a little expensive but we get it free through her doctor. Gotta runfor a bit. Be back soon

 

[lilesMom]

He is still,a bit dodgy.
Poor,fella, all he wants is cuddles
Hands full here :-D

Hope hayley is better soon hon x

Hope all's wel l mummy3

 

[lilesMom]

How ye doin ladies?
Mr squish is still sick
Prob take him yo Doc for a third time tomorrow
Unless he improves overnight

 

[mummy3]

Morning guys! Hope all the little ones are on the mend?

Happy thanksgiving to everyone!!!

Essie, feeding issues can be a nightmare to deal with! Have you asked EI for a OT that specializes in feeding? We have someone come by for Alasdhair for feeding on occasion, he doesn't need it just now because he only gets 1 thing and so far no issue with it. My 6 year old and 3 year old though are/were so hard to deal with feeding wise. The preschool programme my 3 year old is at has feeding group there which is good, is there something like that where you are?

I hope Simon is better

 

[mummy3]

Alasdhair had his MRI last Friday, still don't know results but it went really smoothly, he woke up so fast! No hanging around for my little guy!! He has to go get scoped endoscopy and colonoscopy on Wednesday, not looking forward to that. Really dreading that there's been more deterioration internally from his GI condition, he doesn't demonstrate pain appropriately and has a lot of sensory issues so never know with him! Last scope in October we expected a huge improvement an him to get to start food trials but despite him seeming better he had got 4-5x worse with his esophagus starting to break down. The doctors said he should be agony but he doesn't show it!! Do either of your little ones have sensory issues?