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Daughter hasn't been diagnosed, but I know something is amiss

smithy74smithy74 Member Posts: 3 Listener
edited June 2018 in Parents and carers
i have signed up in the hope someone can relate to what im saying.

my daughter (6) has not been diagnosed with anything but i know somethings a miss, she has major anxiety with everything and anything( food, people, places, school) she has coeliac symptoms yet blood tests come back negative, i mentioned ibs as she still has accidents (soils) multiple times a day at school and home, she doesnt sleep more than an hour a night and her behaviour is getting out of hand she lashes out and has melt downs over nothing or the smallest of things i.e changes to routine, food change from agreed meal, not doing something because of weather or change of plans.

sorry for the long post i have tried to put as much as i can in the hope someone can advise me on where to turn as gp doesnt want to know anymore

Replies

  • sheila01sheila01 Member Posts: 2 Listener
    Hi.  Sorry to hear this.  It must be very stressful.  I'm an education professional and parent of a child with cerebral palsy and autism.  The tantrums around changes to routine and soiling sound sililar to symptoms of autism.  Obviously it's not a diagnosis, but I do think you should ask for a consultation.  

    Hope this helps x
  • smithy74smithy74 Member Posts: 3 Listener
    thank you sheila01 for replying, i was swaying towards autism as a few friends with autistic children have also mentioned she shows a fair few  traits of autism so will go speak to the drs again and push for something to be looked into for her as its very stressful on all round for me and her younger brother 
  • MatrixMatrix Member Posts: 3 Listener
    did this start recently or has she always had the issues.  Has she had a tick bite that you know of?  though some miss being found, and are symptomless. nevertheless if infected the bacteria can cause anxiety, personality changes as well as physical symptoms.  It is widely undiagnosed leading to sometimes very sever problems. Bear it in mind.

  • MatrixMatrix Member Posts: 3 Listener
    did this start recently or has she always had the issues.  Has she had a tick bite that you know of?  though some miss being found, and are symptomless. nevertheless if infected the bacteria can cause anxiety, personality changes as well as physical symptoms.  It is widely undiagnosed leading to sometimes very sever problems. Bear it in mind.

  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi smithy74, I don't know much about Autism but I have lots of experience with food intolerances' my daughter is 4 and has lactose and wheat intolerance and egg allergy. As well as quadriplegic cerebral palsy. When she has had wheat she has a nightmare week, she has serious constipation (some people have diaorreah). She hardly sleeps, literally an hour or two broken sleep. When she does fall asleep she wakes up hysterical with night terrors, she is terrified of everything worse at night but obsessive during the day and really scared and anxious about anything different. Her mood goes from easy going playful pleasure of a child to awkward, stubborn, argumentative and will go into full meltdown over the smallest of things. I had a really difficult time getting anyone to believe me and even when they did I didn't get much help or advice. People think wheat intolerance is the same as gluten but it is not. If you do try a wheat free diet and I think it is worth a try. Be very careful of MALTODEXTRIN. It is a sugar made from wheat and is in everything. Free from products, soya milk, sweets,crisp, gravy, tinned food, frozen chips, vitamins. And it is not highlighted because the process of making it into a sugar rendered it gluten free. But it makes my daughter so poorly and it took me years to find out about it. I was like you going down the autism route until I discovered maltodextrin. If you have any questions feel free to ask.hope this helps, if like zeezee your daughter is intolerant to wheat you should see a huge difference within a week or two, so it is worth a try, but taking all wheat out of a diet is very difficult as they hide it everywhere. Good luck
  • DownbutnotoutDownbutnotout Member Posts: 4 Listener
    The soiling could be a phase, two of my boys had this problem, and it went on for years, they held on so long it hurt badly, they had seepage while,holding it In rather than face the pain of going, vicious circle, one that took a lot of hard work and loxoberal (too high a dose to start utter disaster) to sort out, I had them going regularly then after school. As for the other behaviours, my youngest was similar and seen a consultant I thought adhd until I seen a child in the waiting room who was utterly mental! The consultant thought he had Tourette’s, it’s not just cursing etc, and possibly autism, something to consider along with ocd. 
    I stopped discussing my disabilities with ‘friends’ because a few weeks later they had incorporated my symptoms despite having completely unrelated problems. It’s lonely nowadays, when people want problems for PIP forms. Be careful what you wish for, your health is yiur wealth!
  • smithy74smithy74 Member Posts: 3 Listener
    Matrix, no she has no tick bites and has shown these issues since she was 14 months old (now 6) 

    Zeezee, we follow a strict gf/wf diet as she reacts through touch aswell so know it cant be that but need to find some kind of answer soon as its taking its toll on me now i feel drained

    Downbutnotout, She had toileting mastered by 2.5 then by 4 she started having this soiling accidents again on a regular basis.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Thanks for sharing this with us @smithy74, and I'm really sorry to hear about what you're going through. You mention that you haven't got anywhere with your GP- I wonder if you've considered seeing a different GP for a second opinion?
  • ZeezeeZeezee Member Posts: 80 Pioneering
    I am really sorry to hear that your at your wits end, I know where your coming from my daughter has only just started sleeping after 4 years of hell, (thanks to baclofen, sleep system and taking the last hidden wheat from diet). I know its really hard when your so exhausted but you have to start demanding a 2nd opinion under your childs rights via the patients charter. A G.P is in effect a referral service to the professionals your daughter obviously needs to be referred to. I found out my rights then took my daughter to the G.P and demanded she referred her to immunology or referral to another G.P for second opinion. I was very polite and calm and took my mum with me for support but it worked. Also other professionals and schools can make referrals if you have someone like that listening to you. My daughters health visitor referred to physiotherapist, eye hospital and community paediatrician cos no-one believed me that zee had CP.I was quote"a very old mum who had forgotten how much babies cry". That was until the MRI scan I fought for came back that she has pvl resulting in quadriplegic cerebral palsy. I do hope you get some answers soon and some much needed sleep. Take care xx
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