Hi everyone

[Midnight_Fairy]

How are you and the LO's doing? Lets keep updated xxx

 

[MrsRabbit]

Both the kids are doing pretty well. We have doctor's appts coming up. Then DD has that procedure for her ears in February.

DD is up to tolerating 4 foods - well 3 unless Pear juice is a food - other than EleCare.

 

[Midnight_Fairy]

Good to hear your all ok.

My son is doing well in some areas (stunned teachers with his reading and maths) not so good in other areas- sensory issues getting worse and more ticking. Off to CAMHS next month and it cant come quick enough, Might have to broach the subject of medication which I really didn't want to do! I am so head strong, I dont want people to think I cant cope when I can, you know he is a happy thing but he is constantly ticking and flapping and it really cant go on!

I am not sure what the centre will suggest to be fair? x

 

[MrsRabbit]

How old is he? You may simply have to give him a different outlet for his ticking\flapping.

 

[Midnight_Fairy]

I am at such a lose end! He is 6. He cant concentrate in school despite being very intelligent, he just cant sit still. We do have a meeting with CAMHS, Hopefully they can offer us more support. We kind of got diagnosis and that was it kind of thing! Soo hopefully they can offer me and him more support in the scheme of things first x

 

[AimeeM]

We had a meeting with CAMHS the other week for Kayden and she didn't give a diagnosis as she wasn't allowed to but she said off the record it was an autism spectrum disorder.
We were told Asperger's and ADHD before by his old pediatrician who is now retired, he told us to see how he went on before further investigation at around age 8 or 9ish. He is 7 now. He is being investigated for both and they are just setting up his IEP now.

The lady was really nice and also really thorough with history and details.

Kayden's behaviors have deteriorated lately and is effecting us all a lot more so i hope we move fast to find the best way of dealing with it but the lady said it will be months.

 

[Lottie86]

Hello,

Findlay is doing fairly ok at the minute. He had his plaster cast moulds done on Friday for his AFOs (splints) for his legs to hold his lower leg in the correct position as he has low muscle tone so his legs are far too wobbly. We go back in 3 weeks to pick up the AFOs and hopefully they will make a big difference to him especially when he is in his standing frame
A few days after we pick up the AFOs he has got to go back into hospital for a week long stay for a thorough check over by all his docs, trial of a couple of different high calorie feeds and possibly another trip to theatre for another endoscopy if his surgeon thinks he needs one.

Other than that we are just waiting for a rep to come and see us to trial Findly in a specialist chair and provided the rep, F's usual OT and the social work OT all think it meets all of Findlay's needs the social work occupational therapist will go ahead and try and secure funding for it and then get it ordered Then will come the 'fun' of trying to get wheelchair services to pay for the outdoor base so we can use it outside. Hopefully we won't be waiting too long for the rep or for the chair to arrive as it will make a huuuuge difference to Findlay and us once he gets it.

Still not got the seizures under control so I need to give his epilepsy nurse a ring and see if she can up his meds any more or if she wants to try him on another medication instead of/as well as his current medication and hopefully we'll find something soon that will stop them for him. The current medication seems to be working on the atonic seizures and he's had less absence ones since he's been on it but he's still having a fair amount of myoclonic and tonic-clonic seizures.

 

[Midnight_Fairy]

Hi thank you everyone for replying, I am off to do the kids tea but I will reply later xxx