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Here are some suggested organisations that offer expert advice on SN.

Oh dear I keep googling!

(26 Posts)
used2bthin Sat 28-May-11 22:38:52

Can't seem to stop, haven't done it for ages but am feeling particularly anxious (as in even more than usual!) as had a few words with XP earlier and ended up saying I just want to know whats wrong with DD in front of her. She has quite limited understanding but still, awful of me. Anyway I have been obsessing over diagnosis all night (waiting for a genetics appointment soon and the results of an EEG).

DD has SLI and I have been told we may never have a cause and won't know much about how she will or will not develope learning wise until she is 7 or 8.

She also has a genetic condition that affects her medically and she isn't that well tonight so feeling anxious about that.

He learning difficulties seem to be becoming so much more noticable suddenly, I keep noticing things like her hand coordination is very poor, almost shakey and she is very jerky when running around at the moment I don't know if she has always been like this.

It will feel better tomorrow I am sure, it just seems to be taking lonbger to get my head around the learning issues than it did the genetic condition. I hate that I can't even know if she will have a job, relationship etc and its seeming less likely. I do know others are far worse off though and she is very lovely and mostly happy I just feel very worried about the future.

used2bthin Sat 28-May-11 22:39:53

When I said googling I meant googling her symptoms then obsessing over different conditions that seem to match. But I bet most of you knew that!

Parietal Sat 28-May-11 22:44:14

There is a group called SWAN (syndromes without a name) which might be helpful

www.undiagnosed.org.uk/index.htm

used2bthin Sat 28-May-11 22:46:16

Thank you I will have a look. At least that will be something for me to look at now instead of google too.

bdaonion Sat 28-May-11 23:13:43

Sorry for my ignorance, but are you concerned with learning difficulties attributed to her SLI or to her genetic condition?

I know children with language disorders are at higher risk for things like dyslexia but with adequate support <scoff> they have a good chance of reaching their full potential.

I can sympathise with the whole googling thing though, I only "allow" myself to give into it very occasionally. It can all be very negative and rather depressing, and the reality is that few of us know how our experience is going to pan out.

Good luck with the results you are waiting for.

dolfrog Sun 29-May-11 05:23:46

The age of maturation is at the age og 7 - 8 years old which is when children stop growing out of developmental development issues and the problems can be considered as disabilities.
There are a range of genetic problems, such as downs, that can cause a lack of immunity to some illnesses which can lead to many developmental issues or problems due to too many or to few genes or chromosomes.

You could have a look at the following research papers about SLI
What Causes Specific Language Impairment in Children? 2006
The Clinical Spectrum of Developmental Language Impairment in School-Aged Children: Language, Cognitive, and Motor Findings
Language and Reading Abilities of Children with Autism Spectrum Disorders and Specific Language Impairment and Their First-Degree Relatives
Linguistic and auditory temporal processing in children with specific language impairment

I hope this helps and there are more at Specific Language Impairment (SLI)

StillinMyPJs Sun 29-May-11 07:35:25

Hi used2bthin. You're not alone. After 1.5 years we are still trying to get a diagnosis, (any diagnosis) for ds. I often go through phases of obsessively googling everything possible and try to match ds's symptoms with something out there with a name and then, when I have really depressed myself with it all, I suddenly stop and don't go back to it for ages. Since I have found the google tool of chronological searching I don't spend nearly as much time on there now as I only check 'in the past month' or however long it has been since I was last searching.

saladsandwich Sun 29-May-11 11:21:03

i find googling things just doesn't help i use to google then read and feel guilty then go in denial, i am desperate to know why my ds has so many problems develoment and health wise, i would say they are all minor but there just seems to be so many little problems x

used2bthin Sun 29-May-11 14:01:05

Thanks for the replies, sorry am always worse at night.

bdonion I meant I am worried about her learning difficulties really, as in will she ever grow out of them but have been told 7-8 before we will know more probably. It is severe though so at her ICAN assessment they thought she would always be affected by the word finding and memory part. The older she gets the more she looks like she has SN if that makes sense. Or its because I am not in denial anymore but her eyes often look vacant recently, will know more with the eeg I guess.

Dolfrog you are so great with the research I will go through that. The causes bit upset me too much to look at one point but now I just want to know why. It was suggested at one point that episodes of electrolyte imbalance or low blood sugar from her genetic condition could have caused it but she also had glue ear. I also suspect though taht learning difficulties run in the family.

stillinmypjs its hard isn't it. DD's ed psch was lovely and said she empathises as has experience of not knowing a cause for a childs issues and knows it can make you feel guilty. I was so grateful that she shared that as always worry its something I did. The pregnancy was unexpected and I drank lots and took chinese medicine in the early stages before I knew.

But no, so right googling is a bad plan, I am going to go through dolfrog's links now. I rang the APD helpline the other day actually, must remember to call them back as I didn't leave a number I don't think.

1980Sport Sun 29-May-11 15:31:36

Hi Used2be - I've self- diagnosed DS1 about 10 times so far as a result of my googling!! His geneticist said once we'd probably have him diagnosed before them smile

It's so hard not to even though we know it does no good! I've joined SWAN - I've been on the forum, and joined the fb group too - you might recognise me from my description of DS!

Hope today's a better day.

used2bthin Sun 29-May-11 19:26:21

Oh thanks 1980Sport bit better and have wine tonight so that should help although dd playing up badly so its not that relaxing yet!

I have had about three so far that I've been convinced of for DD too! I tend to pick the ones with good prognosis so I think sometimes its wishful thinking.

Just read her the same story we read every night and still she can't remember the word for monkey, it is hard I keep thinking oh god things really are not going to just go away but I guess its a gradual thing.

sneezecakesmum Sun 29-May-11 22:11:05

What a dreadful situation to be in, no diagnosis and constant fear for your DD. Actually you are right in some ways in that the uncertainty of the future is crippling emotionally, and it robs you of the strength needed to cope with the SN.
From experience I would say never google when you are emotionally fragile. The internet says such scary things and the googling bit turns up all sorts or horrors.
If you can get someone close (like your mum if she is that way inclined) who knows DD but maybe a bit more able to filter the crap that turns up. Thats my job btw for DGS - he has a diagnosis of CP but is constantly changing, and my scouring of tinternet has turned up some gems, as well as scaring the crap out of me (those things my DD doesn't hear because they are negatives and have turned out not true anyway!)
The WWW is a goldmine of knowlege but also a minefield in a different way.
Everyone here has given excellent advice and eventually acceptance creeps up on you, but it must be a hundred times more difficult for you without any idea at all of the future prospects. sad

1980Sport Sun 29-May-11 22:46:21

Wish you were my mum!

I have to 'manage' my mum - which is even more difficult than coming to terms with DS's difficulties!

used2bthin Mon 30-May-11 08:18:41

Sneezecake that sounds such a great thing to do for your DD, my mum is a bit like yours 1980 and I limit what I tell her as she worries too much and makes me feel worse.

But the idea of someone else doing that is good. My dad often researches the developmental stuff and it was him that found stuff on APD and in fact I am going to print off the first article dolfrog linked to and give it to him to read as it has some interesting stuff in it.

It is a worry and hard to get on with things not knowing. After this genetics appointment and eeg result though if nothing shows up, I think I just have to accept SLI as a diagnosis and cause of her issues ( the developmental stuff anyway) and get on with getting her as much help as possible.

Constant ups and downs but this weekend there have been some ups, DD has said two things which made me think her understanding has improved- one was in response to me saying you'll be sick, she said "a do (I go) opital (hospital)" she does have to go to hospital if she is being sick due to her genetic condition so she has obviously taken this in which is amazing as (thankfully) she hasn't had to in six months1 The second thing was she saw a lighter and sort of sang happy birthday (an approximation of!) then said cake! As in you use lighters on birthday cakes before you sing. So feeling encouraged as I think its her issues with understanding things which are the most concerning.

sneezecakesmum Mon 30-May-11 14:27:01

Used2. Keep going with the reading, pictures, counting - constant talking and simple explanations. Its amazing what children pick up when you dont realise it, then they suddenly surprise you. DGS just grabbed (very shakily) DDs 5 outstretched fingers as she counted 5 little ducks in the hydro pool-one at a time-with no teaching to do that!

Regardless of ability children are little sponges and even though they can't relay back to you (DGS only says a few words) their understanding is astonishing sometimes - just takes loads of repetition!
Your dad seems ideal, men are often less emotionally affected (that sounds horribly sexist - what I mean is they can compartmentalise better) so give him the googling job!

I wish I could be everyones mum! I help DD with DGSs physio 4 days a week and work the other 3 so I can buy equipment and help towards private therapies. Yes, I am a saint! But I just love the world of tiny children and seeing things through their eyes is like its the first time for me too smile

used2bthin Mon 30-May-11 17:08:16

You are right about men, they often do see things in a different way. Yes will keep on, just so sad that she can't retain a lot of it. But slowly she is making progress so some of it is going in somewhere.

nightcat Mon 30-May-11 21:09:17

IME, genetic dx was a total wipeout as it set me back years and well and truly to the poin of giving up any hope. IMO it's a red herring as there is precious little you can do about genes. OTOH you can do quite a lot with things like physio-type exercises and nutrition and I found that nutritionist or naturopaths are v good at reading symptoms that can actually be helped rather than written off as genetic faults.
It might be depressing to google, but there are real gems around and getting someone else's experience and sometimes hard-and-fast proper scientific research can offer a new avenue worth pursuing.
Think of it this way, what will drs give you in terms of treatment for a genetic condition? IME, it was nothing, just the prognosis of usually worst-case scenario. For years I was too scared to google neurology, but eventually I plucked up the courage, so glad I did, as found an awsome dr and a non-invasive dietary treatment. My friend says, knowledge is power and I tend to agree. Don't just sit back waiting for answers from geneticist, you might be lucky if there is an existing treatment, but keep open mind and try whatever you feel comfortable with whilst you are waiting... that way you won't miss anything. ALso, if you don't look you might never find, as not all drs are not always up to speed with latest research.

1980Sport Mon 30-May-11 22:45:55

I agree and disagree nightcat. I would like to a get a diagnosis so that we as a family know the cause of his problems - it will help us plan for our future and make decisions about having more children or the possible impact on our other son having a family in the future. I by no means think that it will provide us with any sort of additional treatment or a fix of any sort which is why time spent looking up new physio exercises, books to read etc is much more productive. However, it's difficult not to do a quick search everytime I read or hear about a new syndrome with similar symptoms to DS.

nightcat Mon 30-May-11 22:57:14

hi 1980, oh, I googled big time, tho not at first, far too scared as was told the only way was down sad
ime with neuro conditions there is an immense overlap with various conditions when it comes to symptoms and some can be helped with or w/o dx, open mind and lateral thinking is essential, drs also vary greatly in their approach. I was happy to stick to things I had input into and control over to some extent rather than sitting back and waiting for a dr to come back with the cure (they haven't as yet).

dolfrog Mon 30-May-11 23:07:22

1980Sport
Most of the issues on this and many other SN threads are still part of ongoing research to understand the genetic issues which can cause the problems, and how these genetic issues create the various neurological problems our children can experience, it is all linked. And as you say the more we know about the underlying causes of these problems the better able we are tot plan for the future.
Some, not all, genetic issues can be inherited, from one or both biological parents who will be able to provide some input from their own experiences as to how to best cope with some types of problems.
There are also some genetic issues when a child has additional gene or genes or has less genes which can affect their natural immune systems, and other wide ranging issues.
We all want to know the answers to our questions, but the problem can be that as yet scientific research still needs to develop the technologies to provide the answers we are looking for.

used2bthin Tue 31-May-11 00:01:46

I think nightcat I can imagine feeling the same if I got a diagnosis and there was no definate treatment. And I have worried that it will affect the support she gets at school and therapies in that the professionals would see no point.

At the same time though I just want answers, like 1980sport says it would be good to know what to expect. I do know thought that that may never happen and "probably genetic" may remain the closest we get to a cause.

Definately agree with putting energy into researching treatments though, have just got DD referrred to OT after some googling so it can be helpful I just need to keep down the numbers of nights spent looking into syndrome after syndrome as at night I am at my least rational and can beleive all sorts of stuff.

1980Sport Tue 31-May-11 00:22:06

Hi Dolfrog - you recently posted about the age of maturation which I found very interesting. However, I'm well versed on the mechanics of genetic conditions and all the technologies currently available as we sit patiently waiting for our microarray results.

dolfrog Tue 31-May-11 13:11:39

1980Sport

I had noticed your interest in Angelman Syndrome which is very complex and on the forefront of research.

1980Sport Tue 31-May-11 15:10:43

Hi dolfrog - yes it was suggested that DS may have Angelman this has now been ruled out - he has had the test which confirms 80% of cases but they have decided not to do the mutation test as he does not meet enough of the diagnostic criteria.

dolfrog Tue 31-May-11 15:26:47

1980Sport

At APDUK we had a parent ask about Down Syndrome, and any possible links with APD. After some research, we found that children who have downs have a lack of natural immunity to Otitis Media, and more specifically Otitis Media with Effusion (Glue Ear), which is a way of acquiring Auditory Processing Disorder.

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