I think that meeting altogether is definitely the way forward, it's what we do in school and works well. There is no point having ten separate appointments as you seem to bounce ideas around which conflict other trains of thought, it is best you all come together and thrash it out until you reach a common outcome.

I have to say, I have given up on the potty training as it wasn't working for us at all, she doesn't even know that she needs to wee. Completely pointless and it was really upsetting her. It seems it is just something else we will come to later. Lydia will be 2.5 years at the end of November; will the appointment for a review be sent to me or do I have to make one?

I am also going to have to phone the team at Leeds as we have heard nothing for months about the results of the DNA etc. I just feel I want to know what is going on. Also need to contact Lydia's paediatrician as her spine seems to be curving even more and she can no longer stand up straight.

Hope you are all well.

Charlotte
x

Good luck with getting everyone together, we manage a group session at nursery but the consultants don't go, they're too busy its just nursery, physio, speech and language and occupational therapy.

It is frustrating though not knowing exactly what the condition is, just saw a case on the news, the baby that is on life support and parents have gone to court to see whether his life support should be turned off, that's one of the conditions they're testing us for conjenital myesthenia gravis. It's got a varying affect for each case and obviously if that's what we've got it's a milder case.

Paul's doing ok at the moment, he's a bit weaker the last few weeks and isn't eating much at all, the other day he has toast and a jaffa cake all day i was beside myself as he's so thin. if it stays like this any longer i think i'll have to see the gp to see if there is any nutrition suppliment or drink as I'm quite worried now. he's having plenty to drink but even so he's hardly eating. His reflexes seem slow at the moment too, he's not chewing great and is tripping more than normal. we've got the winter coming so think he's just run down.

Hayley1 - can you telephone the paed ad leave a message with his secretary to try and get them to refer you for an assessment on the basis of what the physio etc have said regarding autism etc? maybe the HV can get your gp to refer.

tobyt200 I think you're right about the potty training, I've given up, I'm trying to get him to think doing a poo is good as he gets upset if i ask him if he's done one he just says no no no and gets really upset so don't know whats going on there.

Hi ladies, Charlotte you are completely doing the right thing with the potty training, I gave up with Isaac and really don't know when I am going to start again, he was so upset by it that it really put me off trying, you should get an appointment for your 2 1/2 year check but I chased mine up as I just want it done before he goes back to the paediatrician in December. How long is it since you had the dna tests, someone told me it takes 3 months for the genetic/chromosome tests to come back but I would phone and chase them anyway, sometimes I think the quieter you are about things the more likely they are to forget about you.

Chriss, sorry Paul isnt eating so well at the moment, thankfully that is one thing I dont have to worry about with Isaac as he is generally a good eater although he does go through phases of not eating, but becuae he is quite big for his age it isnt a worry. I am seeing the paed in 4 weeks anyway so I am not going to ring at the moment, if his appointment had been a few months away then I would have phoned to see him sooner but as its quite near theres not much point.

I am not looking forward to his 2 1/2 year check, I thought I was going to be ok with it but now it is looming I feel a bit low about it as I know they are going to pick up things, he doesnt hold a pencil correctly, he has no preference between left and right hand, he cannot draw circles lines etc and he can't build a tower of blocks or do simple puzzles which are all things they look for at the check, part of me hopes he is having a good day and he does at least co-operate a bit but the other half of me hopes he has a really bad day and then they can see what he is like.

He is at the hospital seeing the plastic surgeon and ent on Thursday for his ear, he has something called a pre auricular sinus which will need removing, it's just a case of whether they do it now or leave it till he's older, I will update you on how both the appointments go

Take care xxxx

Hi Just a quick update, Isaac's 2 1/2 year check went well, although he didnt do the puzzle or thread the beads onto the string and he wouldnt copy the drawing of the circle, the hv said that she couldnt see any major cause for concern, I am a bit confused as at his age they are supposed to be doing all that but she wasnt at all concerned but she did say she would ring again in a few weeks and review him surely if there is no cause for concern she doesnt need to. His appointment with the plastic surgeon was great, it was a bit fo a nightmare to start as he was running over 1 1/2 hours late and our hospital have removed all the toys because of swine flu, however the sugeon says that as the sinus is draining on its own and not becoming infected there is no need at this stage to remove it and unless it does get infected there will never be a need, although he did give me the option of having it done, I decided not to, there is no point him having to have a general anaesthetic and a surgical proceedure if it is not necessary, so that was great too all in all a good week for us

Oh that sounds good Hayley1 I don't think I would do anything unless it was becoming a problem with infection.

maybe the HV sees kids who aren't interested rather than iunable and is thinking along those lines, maybe stress to her if she rings back what the physio said,

good luck with your next appt anyway in Dec

Paul seems to have picked up a bit this week, he's eating a bit more and I'm trying not to worry about it all that much either. His speech has come on lovely this week too he's attempting loads of words it's really cute.

we're not back at Neurologist until February but we have physio twice weekly and every 4 weeks or so at home, speech and language are due in Dec and Ear nose and throat regarding his hearing and possibly his high arched palate, so we have a busy time really. getting measured for new boots too next week I keep getting the timing wrong, had to buy him some little normal boots as he's at the end of his Piedros, must try harder next time to get an appt before he grows out of them, naughty mummy

Really glad Paul has picked up this week, I knw what you mean about the hv, she did say he was at least trying, it was just that he didnt manage it so I guess that means she is not concerned so much about the social side, more about the physical side, I am over the moon he doesnt need the op on his ear I was so convinced that he would after what had been said earlier I could have kissed the consultant when he said there was no need.

Definitely get the timing of those appointments right shoes cost a fortune, our orthotics dept have a waiting list of about 6 weeks, its so difficult to work out when they are having a growth spurt how long they will last. Great about his speech too, how old is Paul now? Isaacs speech came on realy well all of a sudden just after his 2nd birthday, it was as though something had clicked.

I know what you mean about appointments, just had one though and should get the boots next week but apparently we are only able to get a pair every 3 months now anyway hadn't realised that. I managed to get a lovely pair of boots until then from TKMax they are a size 22 which you can't actually get in uk sizes.

Paul will be 2 at the end of the months and like Isaac he just all of a sudden started to talk loads, he's even more chatty now its fab, we have to repeat everything he sais or he gets really upset, and if I don't understand he tries even harder to let me know using signs or even showing me, soooooo cute.

got next speech and language visit on 7th so I'm really looking forward to it, hoping he doesn't do his usual quiet act when she calls though haha

Ahh, he sounds like hes doing brilliantly, Isaac made a major step forward today, he actually managed to come downstairs without me holding him, it was backwards and he was on all fours but he still did it, I nearly cried and I was shouting for hubby to come and see, isnt it amazing how every little achievement is just so wonderful to see. Got Isaacs paed appointment on 1 Dec and hoping to get some sort of answers, will keep you posted. xx

Oh that's amazing, that's probably the way I'll teach Paul to come downstairs, it is much safer for them. at the moment we bump down on our bottom but i have to help him down.

yes good luck with the appt, I'd be pushig for a neurology appt now as it seems that the Paed has exausted all options/tests available to him now

anyway hope it goes well, speak soon