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How are we all
Thought I'd start a new topic as it's a bit quiet on here at the moment. So how is everyone?
We've got the next wave of appointments coming up, Paul's got to meet with an anethsetist as he's got to have a sleep study to make sure he's getting quality sleep, so no sleep apnia or anything. He does make a lot of noise when sleeping and sometimes does pause for between 4 and 6 seconds some of the time. Weve got ENT next week too to try and clear his ear wax, hoping he'll be ok and that his hearing will improve.
Also I'm booked in for a biopsy which is a bit scary not sure whether they'll take it from my arm or leg yet not looking forward to that really.
We've got the next wave of appointments coming up, Paul's got to meet with an anethsetist as he's got to have a sleep study to make sure he's getting quality sleep, so no sleep apnia or anything. He does make a lot of noise when sleeping and sometimes does pause for between 4 and 6 seconds some of the time. Weve got ENT next week too to try and clear his ear wax, hoping he'll be ok and that his hearing will improve.
Also I'm booked in for a biopsy which is a bit scary not sure whether they'll take it from my arm or leg yet not looking forward to that really.
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We have a family service plan meeting on 5 May, it was supposed to be next week but the paed cancelled it :evil: I am pretty stressed with it all as his paed seems to have done a complete about turn and it telling me there is nothing wrong with Isaac and basically it is all in my head, I told him that nursery are also concerned, the speech and language therapist has identified pragmatic language difficulties, sensory problems and dyspraxia and motor planning and perception problems, topped with that the nursery and early years support teacher have his developmental age as between 16 and 26 months and he is 3 so there clearly is a problem, he just said that he would put his point across at the meeting that there wasnt a problem, it makes me so mad, he has only seen Isaac on about 5 occasions in the last 2 years for about 30 mins at a time, so how he can make a judgement on that and not listen to the people that see him all the time I dont know. He has the eye clinic again on 6 May and they have told me that they will be putting him on the list for surgery which is a pretty scary thought, I know its nothing major but I just dont like the thought of them putting my baby to sleep and cutting him
Sounds like you are pretty busy too, hope Paul gets on ok with his appointments, If they discover he does have sleep apnoea what can they do, do they put him on oxygen overnight?
Good luck with your biopsy too, maybe that will start giving you some answers xxxxx
Hayley1 sounds like your Dr has run out of ideas and want to just fob you off rather than find someone who might know more, did you get a Neurology referal? You can always ask for a second opinion you know, maybe you could speal to P.A.L.S you'd find their number on internet somewere, they can help you with understanding your rights etc. In respect of his surgery, I can honestly say they tend to cope better than us, I'm hoping so anyway as Paul is now beig booled in for grommets to be fitted as the ENT said the was could be a red herring, he thinks Paul has glue ear and because it is impacting him so much (30-40% reduction in hearing, and he doesn't perform well at all in groups or noisy places) he has decided to put grommets in which should help until it gets better b itself. Scary but the procedure only takes 5 mins but its just a case of safety while he's asleep really that I am most concerned about. Hope your meeting goes well, stick to your guns you know your own son.
the horseriding sounds fantastic, I had never really thought of it and now you've mentioned it I think I'm going to try and find out if there is anything like that near me I bet she'll love it. Paul loves Hydro too, we go on a Thursday although he will only go in the pool if I go in too, he always used to go in with the physio but now it's me or nothing haha I enjoy it though.
Hopefully hear from you again soon.
take care x x x
Chriss, Isaac still hasnt had a nuero referral, even after the seizure he had at nursery the paed just said there was no need and to just see if it happens again, it makes me cross because basically he doesnt tick all the boxes of any one thing, he ticks lots of boxes for lots of things they are just at a loss as to what to do with him. My health visitor has been fantastic, she came to see me this week to help me prepare for this meeting, she told me at the end of the day the people in the meeting may all be experts in their field but at the end of the day she told me I am my childs expert and I know more about him than any of them do. She told me that whether or not the paed thinks that his problems are down to the fact that Phil was diagnosed with his tumour when he was a baby are neither here nor there, what Isaac needs is what should be being discussed and she will make sure that it is. I will let you know how the meeting goes xx
Hayley1 you really are the expert on Isaac and hopefully you will get lots of support from the results of your meeting, but what puzzles me about your Paed is why he won't refer you to Neuro I mean if Isaac has unexplained muscle weakness (which can be a cause of hypermobility/extension) why risk just leaving it, with your family history too surely there is a possibility that it's something genetic??? Paul doesn't tick all the boxes for anything either but loads of boxes for loads of different things, this is really common for types of problems like this. Paul's Neuro said that at lease 30% of children seen in his clinics won't get a difinitive diagnosis ever but it doesn't mean they don't have an underlying condition it just means no one can detect or pinpoint it.
sorry if I'm going on, the main thing at the moment for Isaac is your meeting which will deal with all the extra support and care that he will need at nursery and through school which is the most important thing and wouldn't propbably change even if you had a diagnosis which is the same for us really, it's just so frustrating isn't it that your Paed won't give someone else a chance to try and see if they have any better ideas.
oh anyway sorry about that I just get so mad when things don't go our way. We've got a date for Paul's grommets 14th May was quite surprised its so soon and I'm crapping myself, my baby is gonna have to have a general anesthetic and I can't give him anything to eat after 7am, and only water to drink until 11am then he's on afternoon surgery. Thing is they are really strict about no solids but his thickener is Maize starch which is food really and this would go in his water, gonna have to speak to them about it see what the score is. We've got a really buzy month ahead
14 May is really quick, I'm sure your wee man will be fine, I think its worse for us with all the worrying, Isaac has an appointment at the eye clinic this week and they have said they are going to put him on the list for surgery on his squint, part of me wants it to be quick so I can just get it over with and the other part of me just wants to put it off, I hate the idea of my baby having a general so trying not to think too much about it until I have to.
Will post after Weds to let you know how the meeting went. xxx
They have given him a working diagnosis of DAMP which is basically a mixture of dyspraxia (which could explain the muscle weakness although paed doesnt think so) ADD and aspergers, this is not set in concrete however and they will continue to assess him through his group and OT and may change things as time goes on, we will have a review meeting in 4 months to discuss his progress. Oh and he had his eye clinic review yesterday and the patching is working well but they want to leave it another 2 months before they put him on the list for surgery as although the sight is getting alot better, he cannot hold the eye straight yet, they want him to be able to at least hold it a bit as the surgery has a greater chance of success if he has some muscle control.
On the whole a pretty good week for us, and at last we finally seem to be getting somewhere, it is such a rollercoaster of emotions, full of highs and lows. Hope you are all well xxxxx
Would love to have an update from you, see how your lo's are doing
Hayley xxx
Glad you have your Neuro appt sorted albeit later than you hoped I am absolutely convinced that they will have a better idea of possible conditions than the Paed and I hope it goes well for you. They may even have a better idea regarding the absent moments he has too.
Well we are plodding on as usual, Paul is well at the moment but he has these dips where he isn't ill specifically but he's just not himself, lots of fatigue (more than normal) struggling to swallow, eating very little etc it is quite stressful when this happens as he is so thin, he's dipped back down into the 2nd centile again but luckily his appitite is slowly coming back to nromal. He wasn't himself for about 6 weeks recently but I think this is just his normal ups and downs.
He's making good progress, his speach is coming on and he's now got glasses for a stigmatism, he is pretty good wearing them most of the day which is good. He had a grommet fitted which has come out early and his hearing hasn't really improved so we have more ENT appts coming up gto try and sort this out but it is just quite frustrating really.
We've had an assessment regarding his breathing/sleeping and he is now on the waiting list for a formal sleep study but its a long waiting list so not too sure when we will get this appointment.
We're back at Alder Hey in a couple of weeks although I don't think Paul's results will be back from Newcastle, they are testing for some of the rare Myasthenia conditions but it takes wuite a long time apparently, its been 6 months but they did say it could take longer, I'm hoping my results will come back sooner but who knows.
lovely to hear from you x now we just need an update on Liddy
Let us know how the appointment goes xxxx
Liddy's riding is going really well and her posture is improving every week as a result of this. We are about to start toilet training as we think she is able to 'feel' things down there finally and is willing to go on her own toilet which we have to have downstairs as neither her or I can make it upstairs in time!
She has completed her hydrotherapy course which OH has been taking her to and she is becoming much more confident in the water. The scoliosis is not improving and she is being monitored closely for that.
She has just got another pair of boots and we hope to buy a secondary pair of Piedro boots in black as she starts nursery in September where she will go for 2 and a half days, I'm quite nervous about that but at least she has a support assistant.
It was good to catch up on Isaac and Paul's progress, we must just stay strong and keep doing what we do for our amazing children.
Charlotte
xxxx
Charlotte - glad to hear that the horseriding is going really well, I have been looking into this myself and I think we will be getting Paul some sessions in a year or so maybe when we leave our other physio groups. Paul has weekly hydrotherapy which he loves, it is so good for them I love him going. I think he will be going until he's in shcool nursery which is great.
Glad to hear you've started potty training, we've made a start too, Paul has a little potty chair downstairs but he does like going upstairs to the loo which is hard work for us both but I tend to take him up if I need to go not sure how it will go when we get rid of nappies altogether though.
we got piedro sandals for the summer but they look awful not as good as i thought they would, and they are much higher on the ankle too but never mind. We get a new pair about every 3 months is that the same for you? I can't wait to get a black pair for when he starts school nursery, another year down the line for us though
lovely to hear from you both, its really nice to keep in touch
xx
Weve off to Alder Hey tomorrow night as we have mnaged to get a cancellation date for an overnight sleep study so I'm quite nervous and want it to be over really. I'll let you both know how it goes though.
Charlotte