AIH ... Schooling advice

Hi my name is Audrey and I'm in Glasgow - my son was diagnosed with AIH in Februay. It's been a roller coaster ride for us all since diagnosis...he turned 13 in March and the hospital staff have been amazing testing diagnosing and treating him so quickly and bringing his liver under control but of course those meds brought their own problems ... A few months down the road the tiredness and exhaustion is the biggest problem for him and he misses a huge amount of school it really stresses me. I'm meeting his guidance teacher soon to discuss and plan for the new school year in September but good to know if this is normal to miss so much school and any advice on what works best for schooling would be greatly appreciated thanks x

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  • Hi Audrey, I am Elaine and I also live in Glasgow and my Daughter Kayla was diagnosed with AIH & PSC in December 2015 and we are attended The New Hospital For Sick Children In Glasgow. Kayla is only (7) and will be (8) on June 26th and the school made a care plan and have totally amazing with us, including supporting us and keeping us informed, fased schooling etc etc etc. I would be willing to talk more via e-mail if you wanted too via Elaine.mcculloch@icloud.com. I realise there is a age gap between them but they have the same symptoms and probably take a lot of the same medications with the same side effects and all and maybe we could share information that may be helpful although I am new in the journey also with only 6 months into diagnoses. X

  • Hi Audrey. My daughter is 14 & has PSC & Alpha-1. She has an immune issue problem which came to light 12mths ago. She gets extremely fatigued and has a lot of time off school. The main thing is, do not worry. Health comes first, education second! Our daughter has had an attendance rate of 62% this year. She goes in 4 days a week and those days she's on a reduced timetable. When she doesn't go to lessons, she's in a quiet room to rest. We've also got an arrangement with the school that work can be sent home. She starts her GCSE's next year. We've dropped some of them and just concentrating on the core subjects. She also gets extra time when sitting exams and tests. We keep in constant contact with the school and have built up a good relationship with them. Your consultant would also be able to write to the school to support your son's case. Hope that helps x

  • Hi I know you are doing a great job at a really difficult time. we have a daughter with liver disease who thankfully is well but our other child has medical issues which impact on education. We are lucky we have a great hospital and outreach service which co ordinate with education and come to the house to teach. We have also got the relevant revision books for her academic year Letts, CGP but we have found w h smiths own version most helpful for her learning style. We use online ixl maths etc as well so she does a bit then rests etc. Do school use an app (maths whizz) you could access at home which they can set work which he can do as an when he feels well enough or will they Skype during lessons so he can rest but still listen and feel involved ( we found this was great for still feeling part of the class peer group). Home schooling sites/clubs can be accessed on good days. We have just found pacing herself and just doing what she can when she can the best. Health always comes first. Education catch up is available later.

    Take care and good luck with it all.

  • hi Audrey, sorry to hear about your lad, it is such a tough path our young ones are on, our son is now 16, and has PSC, diagnosed last year. He hasn't attended school since December, and before that he wasn't managing his part time reduced timetable. He now gets 2hrs per week home schooling. He didn't sit any exams this year. I hope school will be supportive to you all, and come up with suitable options. We got a letter from the consultant, detailing PSC, and gave it to school. I think this provides the medical info for the home teacher referral. We are in Edinburgh, so there are 3of us not too far away from each other! A mums get together might be good! Elaine has my contact details! Yours Mhairi x

  • Hi Mhairi, I've been in touch with Elaine and said the three of us should try and get together but I never followed through on it, I think it would be really useful, I'll email Elaine again and see if we can find a date that suits us all. Best Audrey x

  • hi Audrey, that sounds great! Sure we can find a place to suit us all to meet up! M x

  • Thank you all so much for your quick replies it really does help to know we aren't alone and that there is so much help and support out there it's such a difficult time getting our head around it all and the affect it has on our lives knowing its for life and learning how to cope and deal with it. I feel better informed going to the school thanks 😀 are any of you going to the conference in September? We are booked to go Audrey x

  • Hi Audrey, I'm not sure if you know of Children's Liver Disease Foundation and the work we do to support families who have a child with a liver condition.

    Please let me know if you receive information from us, we have education packs which you can give to your school nurse, teacher or SENCO.

    If you wish to receive information you can email me at fso2@childliverdisease.or or phone me on 1021 212 6028

    Best wishes

    Jacquie

  • Hi Jacqui

    Yes I have had all the information from you which is brilliant thanks and was really helpful when I spoke to the school.

    Best

    Audrey

  • Hi,

    My daughter was diagnosed 3 months ago but we are a home schooling family which helped our situation immensely. There are lots of education sites you can use to top up/make up school work. We use TES a lot, all lesson plans are done for you and every subject/age covered. Khan Academy is widely used (and free) and like someone mentioned there's always books , we use Schofield and Simms which are excellent!!

    Hope that helps :)

    X

  • Thanks very much for your response, homeschooling is great when faced with illness. Our school is being very supportive and sending home work and keeping an eye on things but great to know there are other options. Thank you.

  • My son is 9 and was diagnosed with the same in October 2015 he also struggles with being so tired but his school have made him a comfy corner where he can have a rest and nap during the day if he needs. Speak to the school and see what they can put in place for him x

  • Hi Laura thats great that your son can rest and nap through the day what a brilliant idea. I've spoken to the school and they are great, feel so much better about my son missing school with their support.