Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Recent 'diagnosis' of pvl spastic diplegia cerebal palsy

3Mamabear3Mamabear Member Posts: 15 Connected
Morning, 
I have 3.5 year old twin boys, 1 of which has been 'diagnosed' with very mild pvl spastic diplegia cp. He had an MRI at the beginning of September and the consultant rang me to give me the results/diagnosis over the phone just over 2 weeks ago.  I'm sure she said a 'report' would be sent to our GP, his physio and ourselves. On Thursday we'd still hadn't received anything so I rang the secretary. She told me there was a typing backlog but she would fast track it for me. Friday she called to tell me the 'letter' was in the post. Yesterday we recieved an extremely brief letter, literally saying thank you for taking my call to discuss E's results. As discussed we found damage to the white matter of his brain. The medical term for this is leukomalacia. It could be described as mild cerebal palsy, we discussed what this means. On going physio may be all he requires or he may need other procedures should it get worse....  Throughout the letter they misspelt his name quite a few times. So clearly it was a rush job. I don't know if I was wrong to expect something a little more substantial? I thought the MRI report would be detailed, explaining what the images showed, where exactly the damage was, using a medical terms and then what this could mean/meant for E,  with more of a formal diagnosis. In the phone call she definitely referred to spastic diplegia cp but this wasn't specified in the letter. 
Am I wrong to have expected a little more? Is it unreasonable to ask for something more? I now feel like he was given a diagnosis over the phone but it's a bit non committal in the letter. 
If anyone can give their opinion I'd appreciate it :) 
Thanks (worried mama!)

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Hello @3Mamabear.

    Welcome to Scope. When is your next appointment with this specialist? Show the doctor this painful letter and explain how you feel. Have a pen for note taking. Take a short list of things to discuss etc. 

    I certainly feel your anger and pain. I’ve attended appointments in the past that essentially wasted my time and left me frustrated as well. Two things I’ve learned are to always carry a pen and ask questions. Ring the hospital and ask the consultant to clarify things politely to you. Or you can send off a email to the head of the unit or team. I take notes for my own record keeping. 

    Some doctors are shockingly bad. Can you find another specialist or not? It may be time to obtain a new opinion on your son’s medical issues. And your sons sound uncannily a lot like my son and daughter in terms of personality! 
  • 3Mamabear3Mamabear Member Posts: 15 Connected
    Thank you for your reply April. I definitely will ask lots of questions when we next have an appointment. We should hopefully see her in next 6 weeks but no firm date yet. 
    We're seeing his physio on 16th October so he can have some splints fitted so I will have lots of questions for her too. I will probably ask her about the whole thing too. I understand the department is really under pressure, we had to wait 6 months to get his first appointment after referral and then a month for the MRI. Just seems a little off to be so sketchy after giving news like that over the phone, and not following it up properly. 

  • chiariedschiarieds Community Co-Production Group Posts: 8,037 Disability Gamechanger
    edited October 2019
    Hi @3Mamabear & welcome to this supportive community. I can only echo April's thoughts.

    As your son's advocate, you were certainly not wrong in expecting to get a letter correctly identifying his problems. I've received Consultant's letters where the gender of our child was incorrect; their medical history had many inaccuracies, etc., & in my own case where a condition was mentioned when I saw a specialist, but this didn't appear in a copy of the letter I received. So, the letter about your son may not necessarily have been rushed; my personal experience is that Dr's. letters are like 'the curates egg;' only good in parts.

    One thing I have done in the past is to ask a Consultant to email me a copy of the letter that they intend to send to my GP which would then become part of our family's medical history. One consultant then amended his letter; another asked me to correct all of our letters (myself, son & daughter....as we have a genetic disorder) after I emailed his secretary about our daughter, underlining incorrect information, & putting in brackets the correct information. Sometimes consultant's secretaries may be helpful.

    Definitely take a short list of questions you need answering when you next meet your son's Consultant; if she is unwilling to answer them, then find another.

    I sincerely hope your son's physio appointment goes well, & that he/she might have more time to explain your son's issues. Please let us know how this goes.
  • April2018momApril2018mom Posts: 2,869 Member
    We had a OT assessment appointment today. It was with a new therapist as he has not had physical or occupational therapy for over a year now as I decided he needed a break. So we have requested new therapy assessments. His physical therapy evaluation is tomorrow.

    I have made a list of questions, another of goals and a third purely of my concerns. I was asked a lot of questions today. One thing I recommend doing is to have a short list of your concerns and questions to ask etc. Always obtain a copy of the initial report afterward, this is very important as well. In the beginning I sometimes forgot to ask questions of the therapists and deeply beat myself up afterwards. Make notes during the evaluations. 

    Taking a break is crucial. 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,953

    Scope community team

    Hello @3Mamabear and welcome to the community. I'm going to tag @Richard_Scope, our resident CP information officer in here as he might be able to offer some advice about the process.

    As this diagnosis is quite recent, you might also be eligible for our Navigate service. Perhaps @Matt_Scope can advise?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Richard_ScopeRichard_Scope Posts: 2,732

    Scope community team

    Hi @3Mamabear
    Unfortunately, the letter you received is your son's official diagnosis. You have every right to request more details about his diagnosis. Have you discussed the diagnosis with your G.P. and asked if they received a different letter? 
    We have some information about Cerebral Palsy and PVL that you might find useful. 
    As has probably been mentioned, I would make a note of any questions that you want to ask the medical professionals. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Mum1490Mum1490 Member Posts: 23 Connected
    @Mamabear hiya,
    i have a little girl with spastic diplegia too, they gave us the results and just said white matters. How is your little one doing? X
  • 3Mamabear3Mamabear Member Posts: 15 Connected
    Hi all, thanks for your replies :) 
    @Richard_Scope I've not got in touch with our G.P. tbh we don't have a consistent G.P. and have rarely had the need to see one. We were originally referred to the physio by our health visitor when E was about 6 months old. We've been under a physio since then and it was them that made the referral to the pediatrician/neurologist. Should I be talking to a G.P? 
    We had his follow up appointment through for second week of November so we'll be able to get some answers then. 
    @Mum1490 when was your little girl diagnosed? E is doing really well thank you x
  • Mum1490Mum1490 Member Posts: 23 Connected
    @3Mamabear hey, my daughter was diagnosed last year. Hope you get some answers this is all new to me too! If you want to talk am here 😊
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @3Mamabear, I just wanted to welcome to the community. I too have mild cerebral palsy so just wanted to say hi. :)

    Please let us know if we can do anything else to support you. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
Sign in or join us to comment.