amy51

Hi thanks so much for any suggestions, all very much appreciated, i will go to Boots in the morning! This week has been such a roller coaster, his tics are worse than ever, at times all most constant, he looks so tired and is obviously exhausted. His nursery teachers kindness and concern stresses me even more as i dont know what to say as the PED and OT say they havent come accross anything like it. Ther are still undecided about the next course of action and we wait to hear from Great Ormond Street. Hardly reassuring! My family are either fatigued of the subject or worried sick, depending on who they are, our older children are virually ignored as i am worried sick about their brother. Fortunatley they have endless patience and tolerance. Its fair to say this week i feel i am going mad. Is anyone elses child as young 4? Amy

Hi Hannah, thank you for letting me pick your brains! Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided. Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it. I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make? Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family. I look forward to hearing from you Have a good weekend Amy Hi Hannah thank you so much, you have given me masses to go on. Have you any concerns regarding your sons academic progress? Does he also suffer from ADHD or anything? Currently our son seems fine, but one of my major concerns is how he/and the teacher will cope with his tics in september when he leaves nursery and starts more structured learning. I do hope we can keep in touch! Amy I would very much like to keep in touch.

Hi Hannah, thank you for letting me pick your brains! Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided. Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it. I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make? Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family. I look forward to hearing from you Have a good weekend Amy

Thanks so much for replying. I dont feel so alone! I have bought some fish oils and am spending hours scanning all these links and posts. Good luck with your own child. Amy

Thank you so much for replying. I will send you a longer email, with lots of questions over the weekend!! Amy

Hi we live in Surrey, UK. This week we have been advised that our 4 year old son has PANDAS. This is following a positive blood test result for anti-basal ganglia anti bodies. Our son has experienced severe gross motor tics daily for the pasy year, averaging approx 20 episodes during each day. He has been on a daily low dose anti biotic for the past 2 years as he has recurring ear and chest infections. During his four years he has suffered much ill health with bouts of pneumonia. For the past 6 months he has also suffered from large boils on his lower body. He is also very anxious at bedtime but happy and confident during the rest of the day. My husband and I are worried sick and would appreciate any help or advice, especailly any recommendations of specialists in the UK. The blood tests were carried out at UCL hospital and we wonder if anyone knows of anyone there or at Great Ormond Street Hospital? Thank you for reading this. Amy