Calcium deposits in the brain

[rebl]

Does anyone know anything about this? My ds suffered a mild head trauma at school yesterday and then by 8pm was violently vomitting. He was taken to A&E and had a CT scan done. The scan was cleared for major head trauma and he's been dx with a mild concussion and sent home this morning. But the scan was not clear. There were a number of calcium deposits seen throughout his brain. This apparently needs to be followed up as they indicate an underlying condition (like ds doesn't have enough already!) and will be done in clinic in January. They were apparently talking about chromosome tests needing to be done. I wasn't there, it was dh who took him and had all these discussions and he's very confused. I really really don't want to google so if there is anyone who could help that would be lovely.

0h rebl, it never rains but it pours!

I'm sorry, I don't know anythign about it at all. Is your ds nder the care of a consultant at all? you could try phoning them to discuss, even if it's for a seemingly unrelated thing - they might have enough info to put your mind at ease.

is school going any better? it doesn't sound as though they are doing a good job at keeping him safe (although I suppose in a way it is good that this has been flagged up now, if it does need investigation)

• have you anyone you can talk to in RL? Just an off-loading natter can be really good.

Thanks silverfrog. Yes he's under a general consultant along with a number of specilist ones. I could call the general one I guess. Would it be wrong to call my dd's neurologist?

I don't know where we stand with the school. He's never had so many serious injuries in his life. He's clumsy and yes he's constantly falling for no reason but never doing these sorts of injuries. I spoke to the teacher this morning and she says he didn't put his arms out to save himself when he fell but then he has a broken arm so he wouldn't. She says he was being "difficult" and running away from the TA refusing to take his medicines. I understand exactly what he must have been doing, he does it for me some days and you have to be careful with him when he's like that because he'll flip and either have a meltdown or start being very very clumsy. He apparently was difficult all afternoon as well. I need to talk to them as I really think this is another thing that indicates that they just aren't managing him properly.

But in their defence he tripped and didn't save himeself. And he has NEVER put his arms out to save himself, it was something that the physios tried to work on when he was a baby but that reflex never came and then the physio's discharged him and its never been looked into properly. The community paed has half heartedly investigated his falling/balance but not seriously. Maybe I should chase that again. My "helpful" mum has got me more worried saying that of course some old aunt had calcium deposits in her brain and it caused her degenertive dementia and her motor skills. Honestly, parents don't help sometimes and I know I shouldn't be listening to my mum talking about some ancient old lady but its hard not to.

Silverfrog - sorry, didn't answer your last question, got sidetracked. I've got a couple of good friends who are local and help out practically when they can but they don't understand the worry iykwim, I don't expect them to, they don't have the experience of a SN child. My parents are 3hrs drive away and tbh are more worry than help. I called them for help this morning, thinking if they could come up for a few days it would take some strain off me and they've just muttered about some church service on Sunday and needing to be home to sort it out . If they were vicars or something then I wouldn't mind but they're not and they could come here for a couple of days and go home on Friday.

My DD was in a state this morning as well. She's starting to crack under all stress surrounding DS. She's only 4 and she worries so much about him. She was in tears getting ready for school and when I left her at school she said she said that she would try not to cry but she would have to not think about ds .

oh bloody hell - that's the last thing you needed form your mum! dh's parents are like that - always coming out witht hte wrong thing all the time.

re: this latest accident. surely the school should have made sure they were tryign to give your ds meds in a safe, secure environment? I take your point that he sometimes does tis at home too, and that it can become a flashpoint, but they are supposedly the experts. the ones saying they can cope, that they have it all covered.

I would be livid, tbh. do they have any training in administering meds to unwilling children? because your ds not having them is ot an option, but neither is it good enought that he is injuring himself when they try to give them!

I would call your dd's neurologist, if they are approachable? otherwise general consultant sounds a good move too. anyone with a heart would see that leaving you waiting with half-baked info until January is not on.

do you have all these incidents and injuries logged properly in writing? they will totally help your case wrt Statementing. It is absolutely clear that this school has no clue what they are doing, and your ds is repeatedly getting seriously injured while in their care. his previous medical records will show that nothing so serious happened while in your care, so it is not "just" (and I really don't mean "just" at all!) a case of a serially clumsy child being injured all the time. it is possible to keep your ds from harm - you have doen it for years. they are failign to do so.

oh bless your dd! she sounds a real sweetie.

I was recommended looking up Sibs - an organisation dealign with siblings of SN children, as my dd2 has similar stress at times. she is nearly 4, and has to cope with far more that she should have to.

I haven't looked nto them yet, but it might be worth a look?

are there any SN meet-ups near you? I have no SN support in RL, but my best friend is very good at listening. She has no childrne at all (I've probably put her off having any!) but has worked previously with SN teens and adults in a support role, so gets it a bit I suppose.

I don't mean this to sound wrong at all, but sometimes some of the bereavement charities have good ideas for how to help young children cope with stresses they ordinarily shoudln't have. It might be worht looking into that too (I really should take some of my own advice!). Obviously your dd is not bereaved, but she is going through an adjustment of having a SN sibling, just as we have to as parents, and htis is often described as a period of mourning for the child/sibling we thought we would have, if that makes any sense?

You are right not to look up causes on the net of the calcium deposits, it could be any number of nasty things, but maybe nothing significant at all. It is quite pointless frightening yourself when you dont know the cause, life is obviously stressful enough.

On the good side, DS has had neurological symptoms from an early age - no parachute reflex - and you dont mention a noticeable deterioration in his skills, so these deposits could have been there from early on and are not a deteriorating condition. It may be a good thing that its been picked up as maybe something that is treatable. I hope so, sometimes it seems as though you cant cope with any more - but somehow you do! Good luck and try not to worry.

USoRight thank you very much for your reply. You are quite right, life is stressfull enough right now.

Silverfrog Thank you for that info about siblings. I'll have a look later. Her teacher says she's been vying for attention today, not naughty just various 'ailments' which have required a bit of attention to get better. She's very happy to see ds home but she's very insecure this evening.

DS has perked up a lot this afternoon and much more like his normal self. He's off school for the rest of the week so I'm thinking whoopie pie making tomorrow morning, just need to buy some eggs, and then just vegging in front of a film curled up on the sofa in the afternoon. We both need to eat comfort food and have a duvet day.

My ds has a condition that mentions frequently calcifications in the brain (my ds hasn't been scanned but others I know have been and confirmed this). Yes, it can be linked with all you mentioned before, also some types of seizures, my ds had quite obvious tremors, mainly night but also day.

I was desperate to prevent the progression as everywhere it was described as unavoidable and the only thing that appeared to be do-able at home was to try going gluten free, with neurologist's blessing.

Well, tremors have gone and he improved in terms of speech, balance & neurology. There is plenty of research that links gluten/celiac with brain deposits which could be one possible avenue for you to investigate. Yes, it's scary to google, but if you don't you might be missing out on positive research? I was scared too, but it paid off so far, b/c I found the expert dr who knew more than many others who had told me that there was nothing at all that we could try.

I don't know whether you contacted the neuro yet, but I would say write to him with all concerns, probably easier than talk on the phone. That's what I have done with ours and always got a reply/advice.

good luck :)

to illustrate what I said above, I wanted to show you this paper, maybe it helps

nightcat I agree with what you say about researching on the net for help with diagnosed conditions, but at the moment it would be pure speculation. There are several causes that look quite terrifying so at the moment the OP could just add to her stress levels and still have no solid answers.

As you say she should maybe try to get answers sooner, the NHS takes forever.

On a personal note regarding DGS cerebral palsy - I have trawled extensively and gained brilliant insights, help, advice, treatments etc. not least on MN! Google is brilliant when you know what you are looking into.

nightcat Thank you so much. How do I read more on the paper than the abstract? He definatly has a problem with gluten, he fails to gain weight and his behaviour is much worse when on gluten. He's had a ceoliac biopsy come back negative so we know that he's not celiac but the paed says he definatly has a gluten intolerance. I will write to the neurologist (he's not ds's though, he's dd's). I might pop to the GP next week once he's back at school and I can talk away from the little ears and see if I can get a referal.

rebl, sorry I can't remember what your ds' SN are? I know he has a hearing impairment, but is there anything else?

Have you heard about the Sunderland protocol? I always want to say google Sunderland ARU, but I know they have moved. I haven't bookmaked their new site though, sorry. ARU might still redirect you.

dd1 is gluten and casein (protein found in dairy) free, following a positive result form the Sunderland test. she has thrived since then.

it is thought that a large number of peopl with ASD issues are susceptible to gluten and casein, due to issues with their bowel/not processing foods properly.

dd1's coeliac test also came back negative, but taking her off gluten ahs definitely had a major effect on her (now has a proper pain response, before didn't recognise she had hurt herself unless very serious, is ore in this world nd less dreamy. oh, lots of things really)

Silverfrog Not heard of the sunderland protocol. He's got bilateral hearing loss (from birth), duodenal ulcers, dairy, gluten, tomato and soya intolerant, chronic constipation and alopecia all dx. He's what is currently being called as having challenging behaviour which is clearly coming the limit of normal for his age as more and more professional reports are now listing his bahaviour as a problem. The SALT and ToD are now of the opinion its not hearing related.

He has a number of what I've always seen as minor problems. Late day dry (only just in last couple of months). He is stiff but just about acceptable for physio to discharge him. He was late in all gross motor skills. He can't run well because he's so stiff, hence why he falls so often. He also has times where one minute he's standing fine, next minute he's fallen to the floor, no reason why. We go through good and bad phases. During a bad phase we saw the community paed who agreed it was odd so half heartedly investigated, sent him for an eye test! He also has some undx hormone problems (pubic hair but not precous pubity).

All obvious genetic tests have been done. Genetisist is convinced he has a syndrome but doesn't really know where to look now. He aparently 'looks' like there is something genetic, not to me though.

My ds also has no pain response unless its serious, like the broken arm showed. After screaming like a banshee at school he was very placid and not complaining once in A&E and had just calpol which the dr's just couldn't understand, he should have needed morphine apparently! The most he needed was some codiene to help him at night.

So he's already dairy free but he's not gluten free at the moment if I'm totally honest, I've got slack with it because I've been struggling so much. He's gluten free at school only. I should really make the effort again as I know its made such a difference for him. I've just been finding it so hard to do at the moment and he's being obstinate over eating at the moment.

Oh and the other problem we have with him is major sleep problems. We've tried everything behavioural to get him to sleep and the only time we ever get him to settle before 10 or 11pm is if we give him the sedative we got from the GP in desperation. We're at breaking point with the sleep but get no bloody help what so ever (hence going to the GP) except the stupid return to bed, it will work eventually. We've been doing that for nearly a year and it doesn't work.

rebl, have a read up of LEaky Gut issues/theories (I know! - last thing you need is more stuff to read!).

Th eSUnderland Protocol is linked ot that. It encompasses gluen free, dairy free, and all "chemical" free - no sweeteners, preservatives, etc. colourings and flavourings are out, as is MSG. so just "real" food cooked form scratch, basically.

sleep wise, have you investigatd melatonin? it's a natural hormone, needed ot settle to sleep, and you can get instant or slow release, depending on what the sleep issues are (gettig sleep vs staying asleep)

Sounds like a lot of your ds problems could potentially be gluten related (sleep, stiffness, ulcers..), my ds was mega clumsy and very stiff in posture/unbalanced, but has dramatically improved on gf diet, I put him on in desperation as had felt I was losing him slowly - and never looked back. I know if we lapsed with diet he would lapse too.

Once my ds started improving, I only wanted to confirm that there was a reason, he did have a gene test (done by a neuro) and came out as gluten sensitive ie not celiac, so it wasn't a coincidence. No other treatment needed, just diet, although I have done various tests to check for any metabolic/absorption abnormalities and found various deficiencies that I have been working through.

Just search for neurology/gluten, you will be amazed how much proper research is around - although there are very few GPs/drs who are aware of this possible link, mine weren't.

You now have to be a member of pubmed to see research papers, but some are linked here, check out the Neurological Manifestations of gluten sensitivity.

Also, leaky gut can also be a result of gluten damage, silverfrog is right. Severe neuro damage can be irreperable, but if he does respond to diet, there is a chance that some of the enzymes/hormones might correct themselves.

Write to your neuro and try and get copies of the scans across to him.

.. and try and read this book, it covers a lot of gut and nutrition stuff, it helped me great deal

Thank you both of you. The leaky gut thing seems very interesting, very much like DS.

I've made an appointment with the GP next week and I'm going to talk to him about the calcium deposits and try and get a referal to my dd's neurologist.