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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.



  • Hiya, we have been pretty hectic, Isaac had a really bad bug before easter that caused him to throuw up and he had a temperature of 40.3 which resulted in him being admitted to hospital and put on a drip, then over Easter Megan had tonsillitis, apart from that Easter was good and fairly quiet for us. Last week Isaac had a seizure at nursery and was again admitted to hospital over night, his paed doesnt want to run any more investigations as the EEG he had in December was normal and he thinks he has done enough tests!
    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 :cry:

    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
  • We're all fine here too, Lydia's walking is so much more stable and she is growing in confidence. We've had the OT assessment in the home which was extremely useful and we now have a handrail out to the back garden and they will be putting one in up the main stairs and getting her a Tripp Trapp chair for her to eat and play at the table. She has also got a place at riding for the disabled to strengthen her trunk muscles. She is currently really enjoying attending the hydrotherapy sessions at the hospital which are for six weeks. We're going to try toilet training during spring bank but still not sure if there's enough muscle control for bladder. Oh it's all good fun!! Hope your biopsy goes okay and that Paul goes on alright with his appointments, keep in touch. x x x x
  • I tried to post here the other night and the whole thing was lost grrr never mind start again...

    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.
  • I'm really glad Lydia is walking more steadily now, how old is she now then? We're getting a handrail fitted to the main stairs but luckily we have a patio door which is like lower level so he dopesn't have to step to get out into the back. We've also got one of those chairs, but its called a Breezy (nursery have Teesy breezy as its a lower version) but it looks very much like the trip trap chairs. one thing to mention, if Lydia can't bring her head back up easily if she let it go backwards, make sure you ask for a high back attachement, we didn't have one at first and if Paul had a tantrum in the chair and threw his head back, he couldn't get back up, not good.

    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
  • Sounds like Lydia is getting on well, the horseriding sounds like it will be really good for her.

    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
  • Liddy will be three at the end of the month, how time flies! She does struggle to lift her head back up, she has to roll onto her side to get up when on the floor/bed and this is the same when on a chair so I'll make sure they give us a high headrest, thanks for that. We're supposed to be getting a handrail up the main stairs in the house too, one which goes around the corner as our stairs are like an L shape on to the landing. We bought her a pair of 'normal' Clarks shoes this afternoon as she wondered why she always has to wear boots so OH and I decided she should have some shoes that she chose herself and she absolutely LOVES them! She looks so grown up in them.
  • Ahh that's lovely, I tend to buy little trainers or pumps for Paul and he loves having these, some days he is too tired to wear his boots all the time as they are quite heavy. Paul really struggles to get up from floor/bed anything like that, he rolls over to his side too and often even uses his head to help push himself up, he leans really heavily on his elbows too they're always bruised.

    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
  • Isaac gets up off the floor and bed like that too, he rolls onto his belly then walks his hands up the floor to push himself up, either that or he crawls over to grab something to pull up on, he cant get himslef from a lying to a sitting position either, he is still crawling up the stairs and he doesnt like coming downstairs, he either cries at the top till I go and get him or he turns around and crawls down backwards, he does the same to get out of our front door, he cannot come down forwards.

    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
  • hope everything went well today hayley 1
  • Hi sorry I've not updated before now, been a bit manic, anyway to update, as I walked to the meeting I actually felt physically sick and couldnt stop shaking, thankfully we were the first ones there so I had time to calm myself down and get a grip :roll: Anyway the meeting went really well, much better than I could have hoped, the paed and the SaLT agreed to put in an urgent OT referral for Isaac to help with his sensory issues and in the meantime he is going to start attending a group session on Weds mornings to help him to communicate and interact with other children. Then the Paed mentioned that he still shows a lot of signs of muscle weakness which he is concerned about and that with the fact that he had a suspected seizure the other week and him having a very large head (off the centile charts and almost the same circumference as mine) he wants to do a nuero referral AT LAST image the SaLT argued with him about him and said it would be beneficial to wait until OT are involved but he disagreed and is going to do it now.

    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
  • That sounds great a long time coming but you are so much further ahead now because of this meeting. The OT will be great for Isaac, not just for sensory issues but all things including his low muscle tone they are really good. Your Paed sounds like the pressure of the meeting has made him turn back to his original thoughts??? don't worry about the Neuro referral coming before the OT referral, it won't make any difference in fact I would say it was better, it will probably all come around the same time anyway. better to get the Neuro sorted they take ages.
  • Hi all, how are you, seems like ages since we have 'chatted' anyway thought I would give you a quick update on us, Isaac has made massive progress and has finally learnt to get himself downstairs forwards image he is still slow and still struggles but he is definitely moving in the right direction, he is also potty trained which was not nearly so bad as I thought it would be. He has OT assessment on 4 Aug so hopefully we will get more of an idea of what is wrong after that, his nuerology referral also came through but unfortunately we are on holiday for the week it came and the next clinic is not till end Oct beginning Nov so another 3 months to wait for that. He has been having several vacant moments just lately and the question of epilepsy has reared its head again, hopefully we will get a more conclusive answer when he eventually sees the nuerologist.

    Would love to have an update from you, see how your lo's are doing

    Hayley xxx
  • Hiya yes it seems to have been ages wow I'm so glad Issac is making good progress and I'm sure at your OT assessment you'll get some more positive steps to help him come on even more. We've just had handrails fitted for Paul and he is now attempting to get upstairs himself.

    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
  • Sorry Pauls not been well, it is so stressfull when they are poorly, especially when they dont eat. Isaac has a hydrocele now too, at first drs thought it was a hernia but he has been to see the urologist today who confirmed it is a communicating hydrocele, it is similar to a hernia but the opening is smaller so only fluid gets through the gap, hopefully it wont get any bigger as there is a danger that it can get bigger and then a hernia can develop, there is also a chance that it can close on its own so they are going to review in 6 months and if no change then they will consider surgery but for now they would rather leave it and see (me too, I dont like the idea of surgery). Hope you get the results when you go up to Alder Hey, all the waiting is just awful, I think waiting is worse than knowing, at least when you know you can accept it and move on.

    Let us know how the appointment goes xxxx
  • Hello there! Sorry have not been on for such a long time, life has been busy.

    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.

  • Oh Hayley1 I hope that doesn't get any worse.

    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
  • Yes we get a pair of boots as and when she needs them and because she's so tiny, she doesn't grow that much! I would definitely recommend the riding but if RDA is anything like ours near you they can't do it until they are 3yrs old for insurance reasons. Make sure your physio gives you a referral when the time is right, it's amazing!!
  • Yes I think 3 is the youngest here too but I'll get on it soon as.

    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.

  • Hope it goes well and it gives you some insight. xx
  • How did it all go with the sleep study? Was it helpful in any way?

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