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How can I help my son with his Tic disorder? How best to approach medical authorities?

Posted , 5 users are following.

simonfoley
simonfoley

First of all, apologies if this is in the wrong area...its my first post having just joined this community and I couldnt find a category for Tic disorders.

For a couple of years now, my now 10 year old son has had a varying (in terms of severity and manner in which it manifests itself) tic disorder like condition. When searching the internet for information recently, I came across this leaflet:

http://www.networks.nhs.uk/nhs-networks/eastern-paediatric-epilepsy-network/documents/tic%20disorder%20leaflet.pdf/at_download/file

What it describes in terms of a chronic motor or phonic tic disorder is pretty much where he's at.

To start at the beginning, a couple of years ago my son started exhibiting asthma like symptoms in terms of the way he caught his breath. For some time however we'd already been concerned about an occasional very pronounced blinking of his eyes. The breathing was strange as he's a very healthy and active outdoors type of boy - he could run with and throw a ball almost as soon as he could walk and BEFORE he could talk! We kept an eye on the breathing and it seemed to calm down, and a regular eye test confirmed him as being healthy in that respect so we (perhaps too quickly) dismissed it as "too much playstation" and restricted that for him a bit.

It was about the same sort of time that he started making "funny little noises" as his sisters call it. Nondescript sounds for the most part, only occasionally in the same manner as many hum or whistle in idle moments...so again, at the time we dismissed it or paid it little heed.

About 12 - 18 months ago, the noises seemed to become more frequent and resulted in his siblings criticising him for it. Likewise, little movements like throwing his head back as appearing to catch his breath (as I said before, almost asthma like) became more frequent and pronounced. With the thought of the previous eye blinking and the original incidents I mentioned above in our minds, my wife and I approached our local GP. He spoke to our son at his surgery in our presence, and Adam (our son) was quite calm and answered the doctors questions openly and honestly. Things like "Are you aware you make these noises?" and "Is it causing a problem for you at home or school?"

At the end of the consultation, the GP was honest with us and said he'd never treated anyone with a tic before (he's quite a young doctor), and that he advised us to just keep a watching brief. It would only become a major problem if it started adversely affective Adam in school or at home either due to physical pain or mental stress due to bullying and ridicule etc. So, with that in mind, we started to just "keep an eye on him".

Much as they had done for a year or so beforehand, the vocal symptoms continued to wax and wane in severity and vary in type, often not at all. The physical / motor symptoms came and went to. Then, last November, the physical symptoms seemed to go up a gear. When sitting down, he would go suddenly fall / lean backwards and go rigid before sitting upright again. Also straining his head back. He would also struggle for breath occasionally, or at least appear to. NHS direct advised us to seek medical advice and as it was a saturday we took him to the local cottage hospital. They monitored him on an ECG for a while, before he then saw the doctor on duty. She was concerned for him and could see the distress it was causing him and us, and advised us that we should keep an eye on him and if symptoms continued, to take him to the children's hospital in Bristol.

We kept a close eye on him during the Sunday and on the Monday, given the no real answers gained from doctors saying "well, just keep an eye on him..." etc we took him to the children's hospital. They ran a few tests, mostly observational with him, and a doctor spoke to him at length about what was happening to him and asked him questions similar to our first visit tot he GP. Whilst it was very positive and acknowledged the existence of a "problem" it as still relatively inconclusive.

Afterwards, he seemed to calm a little and although symptoms still occurred (little noises, small movements), it did not appear to adversely affect him either physically or socially (bar perhaps a couple of unkind remarks from boys he wasn't particularly friendly with anyway).

Fast forward to last weekend, and there was another "flare up" in terms of the physical manifestation of symptoms. Suddenly going rigid then relaxing, random head movements and his eyes wandering (almost like a blind persons), resulting in making himself dizzy. He got very upset, and my wife and I got very concerned. He appeared to calm a little and went to school as normal on Monday, and I approached his class teacher asking her to keep an eye on him (the school are aware Adam has been having issues and do keep an eye out for us).

Adam is a popular, active healthy boy...often outdoors or wanting to be...never happier than when he is kicking a ball with his mates or playing games with them, or spending quality time with his friends or his family, relaxing with hobbies TV or computer games. Like any caring parent, I love this wonderful boy with all my heart and am at a loss to know where to go from here. Is there treatment? How should I approach medical authorities / GP / Hospital about it and how best should my wife and I support him and look to do so going forward?

Any and all advise appreciated!

0 likes, 6 replies

6 Replies

  • peck
    peck simonfoley

    Posted

    Hi there, my daughter has chronic tic disorder.  It was extreamly stressful for both my wife and me. We tried everything.  We use magnesium and taurine. We also are using a lady who does bio energy which did help but not stop the tic. Two things I believed help the most was manuka honey, 1 tea spoon  in morning for around a week helped reduce symptoms by 70 percent. We still give her honey every day. We have trillions of bacteria in our stomach and manuka honey is the onky honey in the world that helps, google it, it has amazing benefits.  The second was a priest. He came to our house,  he blessed the house and did a pray for my daughter,  he left us with holly water and my daughter would place the holly water on her head, eyes,  hands and feet. It has been a month since the priest has been and her tics are almost gone. 
    • rene84171
      rene84171 peck

      Posted

      Hello! I am absolutely amazed! My 8 year old daughter has had a tic that has been worsening over the past couple of year. We tried everything and it would calm, but not go away. I began to pray and contact every order of nuns that I could find and asked them to pray, as well. Then I read about PANDAS and antibiotics for tics. I knew that Manuka honey had these natural benefits, so I started giving her the Manuka honey 2x/day. Along with the prayers, Manuka honey and a vitamin with magnesium, her tics are almost completely gone! I do believe in miracles.
  • lisalisa67
    lisalisa67 simonfoley

    Posted

    Tourettes. Many cases just go away during puberty but some do not. However much you think it disturbs you the person with the tics is having a much harder time. It is a very string uncontrollable urge. They have therapy for children to try and give them alternatives like shaking their leg or tapping to help the child in social situtatiins. The only medication is strong anti ohyschotic drugs and the side effects are potent and this would be something be very carefully weigh in on. You can look up tourettes and natural remidies and some oarents have certain diets and suppliments that they do find calms the child. Ocd accompanies these tics. But hild on cause 80 percent go away during puberty. Love them for them either way and dont yell at them its such a rough thing to live with for them a lot more thn how it effects others.
  • lisalisa67
    lisalisa67 simonfoley

    Posted

    On a side note...I do believe some cases arise from PANDAS but if thats not caught early or you don have access to the iv, which comes with dangers there isnt much that can be done. If anxiety eminates from PANDAS they still take the same route as if you never had it. Its controversial and many doctors so not have access to the proper testing or iv meds anyway. the nervous system is quite sensitive to bacterias and espcially certain viruses.
  • leetv
    leetv simonfoley

    Posted

    Hey Simon. My 10 year old son just started experiencing a few of these symptoms and wondered if you wouldn't mind providing a update on your son?  Hope things are better.  My thoughts and prayers are with you and all the children experiencing any tics. 

    thanks in advance for any updates!

    • Depress75
      Depress75 leetv

      Posted

      How is your son doing?

      We have noticed that my 11 year old son has also increasingly been having tics. It's not until I actually started looking into it that I'm actually now quite concerned. My mum had made comments recently to me about his left eye twitching. It twitches most time he talks which is only a recent thing. But he also has a neck twitching that started in Autumn last year and this has continued for most of the time. He says it's because his neck aches.

      I try not to make an issue about it as don't want him getting worried.

      But I am worrying now, especially as the eye tic has developed.

      His diet is really good, he's a porridge and berries with maple syrup and seeds/chia/glad/almonds for breakfast, healthy lunch and tea, loves his veggies. Never have a problem getting him 5-10 portions fruit/veg each day, and good fats and proteins and healthy carbs. He exercises well. But plays on these Xbox games more than im happy with. Could this be causing the problem?? I often wonder that they use up so much of the brain and cause the cells to overwork and could this be causing triggers due to over exertion of the brain??

      I'm not sure what else I need to do. Possibly look at magnesium supplement and look at his sleep pattern. I do think he needs more sleep. Also he's been unhappy at school the last year and I know the stress may have contributed to this.,

      He's bright and there are no other concerns about him, he's well behaved and a perfect (dare I say) child.

      Thoughts appreciated.

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