Loufrank

Hi, I initially posted on this site on the tics board, and a few of you drew my attention to this section, which all seems quite relevant to what my son is doing on and off at the moment. Sorry, I don't know how to post a link ATM, but I've said in my other post that I am going back to my GP on Thursday with the intention of getting seizures ruled out. With regards to the PANDAS possibility, what else should I be asking her. I am warning you in advance that I am in the UK and I am fully expecting the GP to laugh me out of the office... Do I need her to swab him for strep (he does actually have a cold at the moment)? And what then if is it positive? What else do I need to ask her? Is the PANDAS something I should mention to the neurologist, if and when I get referred? Also, are PANDAS kids more likely to get the nighttime tics and fidgets that he is getting? Obviously, given the choice, I would like my DS to be 100% healthly, but I'm thinking that between seizures and PANDAS, PANDAS is the least threatning option isn't it? I can't help but think how many undiagnosed kids there must be with this! What would eventually happen if it wasn't even diagnosed? Would any further harm be caused, or would it just be a lifelong struggle with tics etc as and when then child falls ill? Apologies for my ignorance, this is all very new to me. I'm having trouble understanding all this information and don't really understand what is actually causing the tics in PANDAS kids. Thanks in advance for any advice.

Thanks for all your helpful replies and suggestions, and I'll definitely look into the light sensitivity thing as a starting point. What one of you said is absolutely spot on, it is SO difficult to try and fathom what is normal behaviour for a 2 year old, and what actually needs attention and checking. I'm going to take him back to my GP on Thursday (one of the friendlier ones) to tell them my concerns once again, and ask whether he can be referred, just to rule out any seizure activity. Although that in itself scares the ###### out of me... Does anyone know what tests they will actually do? I feel really bad for putting him through anything that will upset him as he was freaked out enough by the eye exam Also, re the PANDAS thing - he hasn't been ill recently, apart from the odd grotty cough and cold (stupid British weather!). At the beginning of last year (2009) he did go through a bad time with an ear infection, and later on a bit of reoccuring balanitis - during those few months he had countless rounds of antibiotics, but that was months ago, and he's been well and healthy between then and now. At the mention of strep though - and this might be something completely different - but I tested positive for Group B Strep when I was pregnant, and as I result I had to have antibiotics during labour, and my son had to have them afterwards, but they were given as a routine precautionary measure, he was never actually ill with anything as a result. I'll film him sleeping in the meantime, and let you know how I get on with the GP on Thursday...

Forgive my ignorance, but what is PANDAS please? Thanks.

Hi, I am new to this forum and thought I would come on here to discuss my concerns about my son who is 2.5 years old. I just wanted to say firstly that regarding his symptoms I have noticed some references to autism/aspergers/ADHD and when I looked more into these they mentioned a few things that he also does: Massively huge vocabulary for a 2 year old, that people comment on all the time. Seems to be very, very clever and really inquisitive, wants to know the ins and outs of everything. Has an excellent memory and imagination. Obsessions with strange things - hairdryers, fans, hoovers and generally anything electrical that switches on (would choose to play with any of these things over toys if given the choice). Inability to sit still, even when concentrating on something, TV, book, dinner etc - has to be fidgeting all the time. Not really interested in food, would sooner be doing anything else other than eating. But on the flip side of the things mentioned - and I don't know whether its enough to discount them, but he is very, very good natured, very sweet and polite, extremely loving, very rarely bad-temprered, and has never ever been spiteful to anyone. He's perfectly able to connect and react to people, and is perfectly able to make eye contact and stay focused when you are speaking with him and just generally is the most sweetest child I have ever known . Also, as bit of background, my husband and his brother both had a squint as children, so I recently had my son's vision and eyes checked by a private consultant opthamologist (as the good old NHS wouldn't entertain me), and everything was fine, extremely good vision etc. ********************************* So, this all started about 3 weeks ago now... My first concern was that he started to "blink" a lot, really rapid, big blinks and scrunching his eyes up. The first night it happened I thought he was just tired as it started about 6pm and carried on intermittently until he went to bed. The next week or so it happened predominantly whilst he was watching the TV, but sometimes he could watch the TV with no blinking at all. Then I noticed on one or two evenings that it wasn't just the TV, occasionally the blinking would start at dinnertime-ish regardless of what he was doing, and carry on until he went to sleep. And other times he would do when travelling in the car as well. Now, I remember him doing this blinking thing for 2 days last August, but ONLY when he was watching TV - I completely stopped all TV for the 2 days, gave him a couple of early nights and the blinking stopped - so I didn't think anymore about it. He also did it one afternoon, some time between August and now, blinked loads and loads for a few hours (not TV related) and then stopped. I've also taken more notice lately of the fact that he also twitches/jerks when he is asleep, mainly his hands and feet, but sometimes more. As far as I can remember he has always twitched and spasmed during naps, or its certainly been for a good few months, as I can't remember him ever not doing it, but even my mum has started to comment on how much he twitches when he's asleep, and sometimes its like the jerks actually disturb him as he will jerk and then shift himself into another position. This is mainly noticeable during his daytime nap (approx 1-2 hours) and if he does do it he when he falls asleep at night, it tends to stop by the time he starts snoring. But I've also noticed this week - just through waking up before him - that he starts jerking and twitching well before he wakes up. We always thought he was a fidget in bed, but after watching him I think that the twitching actually starts him off fidgeting and moving around into different positions. I don't know if he does it all night long, as I am not watching him, but I do know that *some* mornings I can go into his room at 6am and he's in exactly the same position as I left him at 8pm, covers still tucked in and everything, so the fidgeting must be pretty intermittent. He also sometimes starts talking, singing and trying to get out of bed before he actually opens his eyes. Almost like his brain has woken up before his body has. He wakes up "ready to go" like someone has flicked a switch on, and he's like that until he naps again at midday. He is a fairly good sleeper and always seems rested when he wakes up. He generally goes to bed about 8pm and comes into our bed at some point during the night (calling for mummy), usually around 4am, and then sleeps til approx 7-8am. So I googled some combinations of things regarding jerking/twitching during sleep and excessive blinking, and it bought up a variety of reasons, including a squint, vision problems (which I know from the eye test he doesn't have), habit/tics, mini-seizures etc. Some people noticed it more with really active children (which he definitely is) and the doctors had told them that it was fine and normal. The thing that concerned me was whether the blinking and the sleep twitching/jerking could be connected and whether it could be related to something more serious, like seizures etc. I spoke to my friend who has a 4 year old who exhibits very similar behaviour (but he was also a VERY bad sleeper) but they have just diagnosed him as being overly bright for his age and that his brain just isn't wearing itself out enough (I'm sure there is a more technical term!). Anyhow, I took my son off to the GP on Wednesday who more or less told me that I was a mad, over-paranoid mother and that everything he was doing was perfectly normal, no cause for concern at all (which is easy to say when you haven't sat and watched your son blink solidly for 3 hours), and the only thing he could suggest was to get his eyes tested again if I was that concerned. So I re-booked for the opthamologist and took him up there on Friday - good news, eyes were fine - but looking out of the window during the train journey started the blinking off again, and it got so intense that he started to nod his head as he was doing it, and I'm sure I also noticed his legs jerk together a few times as well. The weird thing is, if he stopped looking out of the window and focused on a book or our faces, then the blinking would stop instantly, until he looked out the window again - so I'm definitely thinking that watching things in motion is sometimes a trigger for the blinking (but again, not always, as it sometimes happens regardless of what he is doing). Later that day he did it on and off while travelling in the car, and at one point it seemed like he had gone into a trance with the blinking, only for about 5 seconds, and then just snapped out of it and went back to normal. And even later that evening we went out for dinner and he didn't blink or twitch one single time. So all of this has left me really confused and with lots of questions... Should I go back to the doctor and voice my concerns about whether it could be seizures? Could a tic be that intermittent? As it really seems like he is either having a twitchy day, or he's not - can a tic be that on and off? Sometimes when he's blinking at the TV, if he is sitting with me I can feel that he is generally a bit twitchy, and times when he is not blinking the rest of his body feels more relaxed. I've also been reading with some interest the threads on here about magnesium deficiency. I've been racking my brains trying to think whether I have changed anything in his diet, and yesterday it hit me that about 6 weeks (on the advice of his HV) I took him off the Cow & Gate Growing Up Milk and put him on to regular cows milk. I am admittedly rubbish with nutrition, and I don't know whether cow's milk contains magnesium at all, but I checked the Cow & Gate bottles yesterday, and they contain a whopping 7g of magnesium per 100ml, and he was generally having a 500ml bottle every day up until 6 weeks ago, so I'm now wondering whether that could be the cause of everything I'm seeing, as he is missing out on 35g of magnusium every day, through milk alone. Anyway, well done if you have gotten this far, I didn't mean it to turn into an essay and I really do need to get on with my work now ... but I would be really grateful for your thoughts on any of the above.