Info on medicine

[Les.]

Question for the medical experts here, as a google search tells me nothing of interest. Some distant relative of Tamara has a 4 yr old child who barely speaks, and have asked her about  Cogitum – (Bipotassium N-Acetylaspartate).

Not sure if the question is availability here (as compared with Ukraine), from a price and availability aspect.

I have no idea what it does, but what bit I can glean suggests to me that it would definitely be a prescription item.

I am curious to know what it does, but feel it is probably a definite “See your quack first” medication.

Les.

[Ed P]

I have some personal familial experience that suggests that rather than drugging the child the first steps should be speech therapy coupled with counselling for the parents on how to encourage the speech habit and encouraging more parent-child interaction. Success does however depend on where on the autistic spectrum the child’s problems can be placed. It certainly seems to work for those who are on the borderline.

Statistically there appears to be a direct correlation between high IQ (especially logic) and autism, and I just feel it wrong to drug someone because they are a bit behind in one area of their development. However autism does need to be diagnosed and acted on as apparently older children get extremely frustrated at their inability to communicate and it often impacts on the child’s social skills and may actually make the child anti-social..

There are of course numerous UK resources but I would not even know where Ukrainian/Russian help could be obtained.

 

[Robin Long]

Well my Estonian friend says that its not in their system so it is not approved for use there!

Cheers Knight,

RIP Spike09 Your Missed
If I'm not here, I'm there.

Finally joined Twitter! longr79

[The Duke]

My dyslexic son, 15 just doing his maths GCSE a year early, and going collage to do a level maths and jobbing off most of other a levels, except science and English (lol English), but at least he no longer has to do French and Welsh!

However the relevance, after 10 years, give or take, the hospital has finally put him on the spectrum! It’s been obvious to all who know him, he can’t hold his tongue, and every word is very lateral!

His grandad is a has worked part time for 20 years with kids with high disabilities, downs and autism mainly at a local live in collage, since my lad was 5 or 6 ,he spotted it.

But my lad had a knack of turning into the best behaved and silent kid ever at any appointments! Over the last 2 years, he seems to be worse, or rather more obvious.

We never wanted a diagnosis to drug him, more for him to get any extra help I’m school etc, it’s now come too late for him if honest.

However we recon our 8 year old girl (tomorrow) is also on the spectrum, we’re not sure if she is worse than what to boy was at her age, or we know what to look for, or our maybe patience is thinner. The last one is doubtful, given I know my patience as grown with age.

We have an appointment with a specialist next moth for the boy. So we’ll see what happens.

The one thing he doest suffer with is the social side of things, every one knows him, I can’t go anywhere. Alot of thst is having brothers much older, (oldest now 22/3) so bow even in the pubs young guys ask me about my young lad.

[Richard]

I have to agree with both Ed and Steve, early diagnosis is vital as is early intervention, however the chemical cosh is very much a last recourse. Having a 26 year old who was never really diagnosed properly, (a formal report was promised 6 years ago), but that one apparently died and for whom no effective help could be obtained I can sympathise.She has no trouble reading and writing and did get her GCSEs, but since then the world has only grown smaller. It is not helped by numerous other medical issues, treating those is essential and an almost full time job.

Unless suitable assistance, (note assistance not treatment with pharmaceuticals) is obtained, the bars of the cage can get increasingly difficult to prise open. Some cases are prevented / saved by a complete immersion in an interest; for others the problems grow. I know I am increasingly intolerant but living with the problem 24 hours a day does that to you. We all used to go to a support group until she considered herself too old. I met many other parents there, one was desperate to avoid the fate of one family he knew went down to the seaside one cold day and simply walked off the beach into the sea and kept walking; it can do that to you.

Support here is frequently grim, I know, we have seen too many ‘free’ and expensive paid for specialists and probably driven about 50,000 miles going to therapy sessions, for nothing. What real help you can get further east I have no idea, I can only hope it is better than here.

[The Duke]

I don’t thinks intolerance Richard, if your living with something 24/7, it just becomes the norm, you end up batching and joking about stuff, others would find strange.

We got some ok news yesterday regarding the wife, and it’s come to the point in thd cancer journey, that we have be come very ‘blasé’ (if that’s how it’s spelt) about it, we was basically laughing and mocking it on out way home.

Sometime I’ll get pissed off, with the wife, as some  days ill accuse her of hiding hiding behind the illness, letting it beat her so to speak. Sorry of a touch love routine, other days we’ll joke about it.

The days for feeling sorry for yourself, can only last so long,  the abnormalities of Illness one day you realise is just the realities of your life. You have two choices, let it beat you or you can tell it to “fuck right off” and get on with your life, untill you (or my wife in our case) drops of the perch.

It is what it is, what will happen will happen. Some people let it kill them the day of the diagnosis.

[Richard]

Steve, glad  you got some OK news about your wife, long may that direction continue.

I wish you both well and the strength to keep batting on.

You are right to try to duck round problems, but sometimes the problems feel too many to counter. That is the time when even the small problems become major. The other side of that coin is that the minor successes which should guide me forward somehow lose their shine. I finally replaced the old living room TV set up and was happy about the deal that I struck. Getting the stuff wall mounted was a challenge as my hands have decided that this week on one where they will only selectively co-operate. That turned into an almost knock-’em-down-drag-’em-out affair. Still last night all three of us sat and watched half an hour of TV for the first time in months – today live at home daughter has taken to her bed and my high spot was a trip to the tip – where there was no queue, hooray. Me taking stuff to the tip was also my wife’s high spot as it finally cleared the conservatory (again).

[Ed P]

For some reason autism carries a bit of a stigma and families often go into denial and put off seeking help. Worse thing they can do, as early diagnosis opens up a battery of help that actually works very effectively (at least in one case).

I believe that the current medical view is that early diagnosis and intervention is by far the most cost effective way of dealing with the problems that could arise in later life. Parental coaching and counselling is an essential part of the UK treatment, and imo the most valuable bit. It is noticeable that instead of talking over and virtually ignoring the child, the child’s parents are now super careful to be far more inclusive and responsive. Although speech therapy and a spell of special needs education (social skills mainly) were valuable, I think the change in parental attitudes was both noticeable and responsible for much of the improvement. Drama classes also played a useful role for this particular child as I think the play-acting helped him understand a little better how people ‘tick’.

Eighteen months later, and now 5 years old the child no longer avoids eye-contact (almost a diagnostic symptom)  and has been taken off the ‘list’. He now not only has a large vocabulary and  talks nineteen to the dozen but more importantly has a large circle of school friends.

[Richard]

Ed, it is often referred to as a spectrum disorder. So no two are likely to be the same or respond to the same treatment plan. Also girls are likely to present a very different set of symptoms and presentations to those from boys.

I am agreeing with you ED, the bottom line is , if your youngster is showing signs of diverging from a common* development track, there may be a good reason, do not wait get it recognised and develop a management process to assist them. A difference could be down to hearing or sight issues or even such as tongue tie. Quarter of a century ago little was known or discussed about the condition and as discussion became more open it was usually along the line that ‘only boys are autistic.

Sorry it affects girls as well though it may be displayed in other ways.

It can present as uneven development, some aspects appearing almost too advanced for age and others being as near as damn it absent.

Food issues can be associated with the condition, along with repetitive behaviour, excessive organisation or none of these. Epilepsy, thyroid problems and malabsorption of some trace elements can also partner some cases. Abreactions to medicines has also been noted. Minocycline is probably contra indicated as it appears that a form of lupus may be triggered, been there got the tee shirts, female size.

Mood swings can also be a challenge for all parties.

Early help is beyond value.

*I used the word common rather than ‘normal”for good reason. Normal is only normal for a single child, common means similar across a cohort, rather than being more specific to an individual.

[Ed P]

Richard – no arguments from me, I early on made it clear that my experiences were for a borderline case which seemed to have some superficial resemblance to that of the Ukrainian child.

“Success does however depend on where on the autistic spectrum the child’s problems can be placed. It certainly seems to work for those who are on the borderline.”

As you point out Autism presents as a spectrum of both symptoms and  degree of seriousness. I also agree that there is no standard treatment which is one reason why early professional diagnosis and help is important. There do however seem to be common themes in the treatment regimes, with parental involvement/counselling now playing a very important part in treatment. Understandable really as the professional sessions are only an hour or two long  spaced at least a week apart (more typically numbers of weeks) and continual reinforcement of any progress is obviously important as was a staged development program during the intervening periods between professional help.

In today’s NHS real help only comes to those who take an active role themselves.

[Bob Williams]

I have mentioned my two gsons (cousins) here before, but to recap: 23 yo has Aspergers, has very high intelligence, a high-end job where he has gradually become indispensable according to his boss. Almost zero social skills, cannot eye-contact or talk to anyone he has not known for long, his life is all work and home in his modern, luxury flat with a very complex computer and server system, all connected to his TV, entertainment and Games. He is permanently on call for work, which to an outsider sounds like slavery, but that is how he likes it, he thrives on specialist IT work and has just been instrumental in acquiring and keeping a massive new contract. To anyone else, that sounds plain wrong, but apart from family get-togethers among those he knows and loves, he has no interest in any other social life and is completely happy on his own. The reason why he has done so well, is about 90% down to his mum* and Richard’s very true statement – Early help is beyond value. Our daughter was left with him as a baby when his moronic ratbag dad left her in loads of debt and cleared off to his secretary. She worked 3 jobs and took part time study to clear debt and become a specialist one to one teacher, all whilst badgering various NHS people and consultants to get him diagnosed. *T’other 10% was down to the family, we supported mum and gson: as his sister and cousins were born and grew up, we all got behind him.

His 18 yo cousin is severely dyslexic but has worked hard to bypass fellow students who did not put in the work he has done. He is attending an Electrical Engineering course at a large College 3 days a week, works the other 2 days at an engineering factory where he has been working since a 1 day Work experience from school at a Technical academy, at 14. He does not have his cousin’s high intelligence, but does share his monster work ethic and these two are very close: no one else can get a word in when they are together. That is valuable.

The 2 girl cousins are 20 and 11 and also close, but show no signs of any partof the autistic spectrum. Although both are bright, the 11 yo may well be as intelligent as her 23 yo brother. I know of other families who have a daughter with Aspergers, but apprently the ratio of males to females is high. I personally believe that these conditions are evolution in action: a drive towards an “upgrade” in brain activity. The results will not be truly apparent for some time.

That is why I say to anyone with children who show signs of the spectrum, get it diagnosed early! You will always struggle against the reactionnaries within education and the NHS, but you have to fight them and become a bloody nuisance until you get somewhere. You also need to make the family and the child aware that they need to be solid in support for each other: a family that supports, and loves, each member, especially one seen as “different” will always work in the best interests of the child.

The added problem for our 23 yo. is that he has developed Thyroid problems over the last 2 years. It was overactive and now appears to be under active. Typically, he sees this as a minor inconvenience and his appointments and treatment have to be monitored. Enter the 18 yo cousin, who can say stuff to him that we other family members cannot. One thing I will add, is that this has brought our small family together. Every birthday is celebrated with a “do” and these are special occasions. Family is important.

Sorry about the long Post and repeated stuff from other times here, but I feel very strongly about this.

EDIT: forgot to say, Steve, good news about the Duchess is very welcome. I wish you and yours all the best.

When the Thought Police arrive at your door, think -
I'm out.

[The Duke]

Thank  you bob, as I reading about your GS above, a story come to me I seen last month. I think it’s the Israel army are re rusty large numbers of Aspergers suffers, some quite bad, as they are great at pc data stuff, and spotting stuff on maps etc.

There was many in the video that was Sgt rank, I’d imaging is a field type tank, one suited to the position, rather than an active Sgt, as I can’t see that working.

But non the less a good story I thought. No matter your view on their politics. After all ours are also shit.

[Ed P]

Autistic/Aspergers graduates were reportedly actively being sought by GCHQ for their abilities.

[Les.]

Many replies, quite interesting to read. Bob, I especially like your analysis:-

I personally believe that these conditions are evolution in action: a drive towards an “upgrade” in brain activity. The results will not be truly apparent for some time.

You may well be spot on, but probably not even me (who will live forever remember) will see the final result.

Back to the original matter of the child in Ukraine. I explained to Tamara Ed’s initial reply, when she told me he has already seen a speech therapist, but don’t know if it is ongoing.

It seems they can purchase the medication over there, but expensive. Hr 4,200 for one months treatment (injections), with the uncertainty of whether the stuff they get is real or just sugared water or why? Corruption and dishonest dealings are a way of life over there. To put that cost into focus, Tamara’s government pension there now amounts to Hr 1,300 per month, roughly $43, so treatment $140 per month) I will try to convey the thoughts espoused here, but I suspect the reply will again be “Can you get it, and how much?”

So anybody any sort of answer to those two questions?

Les.

[Les.]

Addendum. Tamara tells me that whilst they have not been told that the lad is autistic, the doctor has issued the prescription, so in that respect it is all kosher. Just the cost and uncertainty, but as I said, I will pass on the thoughts expressed here.

Les.

[Ed P]

I’m very cynical about using this drug. It does not even get a mention in the popular US drug pages. link

The only places I have found mentions is for Multiple Scelerosis and as a possible Nootopic (smart drug). Tbh this sounds very like fringe medicine where someone wants to carry out an unlicensed trial. This is one case where I would nor trust the doctor as far as I could spit and I would want to see research evidence.

[Robin Long]

Here is the best that I could find on it

It suggests that trials have been carried out on younger children and:

Cogitum – Active principle of the drug is acid atsetilaminoyantarnaya – biologically active compound contained in the CNS. The drug helps to normalize the processes of the nervous regulation, has a stimulating effect.

Aspartic acid is involved in a number of metabolic processes, in particular regulates carbohydrate metabolism by stimulating the transformation of carbohydrates into glucose and the subsequent formation of glycogen.

Along with glycine and glutamic acid aspartic acid is a neurotransmitter in the central nervous system, regulation of nervous processes stabilizes and has a stimulating effect.

Moreover, aspartic acid has a pronounced hepatoprotective effect, reduces the negative impact of radiation on the body, and stimulates the neurotoxic ammonia elimination from the body.

 

Cheers Knight,

RIP Spike09 Your Missed
If I'm not here, I'm there.

Finally joined Twitter! longr79

[Richard]

Bob, I had you and your in mind when I said about university not being ideal for some and a more apprenticeship style training being more suited. At least one of yours displays this in spades by the sound of what you said. I also found it interesting that thyroid reared its head as I said we have that issue to contend with as well but our daughter is not doing so well as any of your relation. She would become very interested in some subject or another but after about 3 months some sort of time switch went off and interest ceased. It is the same with foods, eats almost nothing but the approved list and then suddenly burn out and it all changes. Never carry a large store stock!

The drugs mentioned above rang some interesting bells, sugar management can be an issue and several references to metabolic processes were contained in Robin’s post. I am nowhere sure that this is the key issue in the original case. Yes we have had observed and measured violent swings in sugar management and metabolic performance. We kept a diabetes style diary and took regular readings for a while, but it was not diabetes but a side effect of their condition. Better management of diet, especially with the older one smoothed things out. I have very acute doubts about the drugs suggested as a cure for anything like Aspergers. I would liken it to adding air to a tyre with a puncture and oil to a leaking engine. Neither will change the way a vehicle drives or turn one from a racing car into a coal delivery wagon. Aspergers  can produce highly specialised performances and where possible/practical these should be nurtured; sadly this is not always apparent or practical as it can become a highly limiting problem. We know one person who no longer gets up and dresses but just sits in his pyjamas in a deckchair all day. They are driven by fears of what could touch them.

Metformin is another drug that we have used in the past and this did help with one particular aspect of their conditions. However, it was a specific treatment for a particular aspect of their condition and primarily one more related to females than to males.

I go along with ED on this; taking pot shots with treatments sounds less than wise to me, yes apply relevant treatments to relevant conditions, however, I severely doubt the idea of magic bullets. Metabolic disorders do exist within the spectrum but which part is chicken and which part is egg is not for me to say. The endocrine and hormonal systems are hugely complex and both play a part.  Just tossing things into the mix is unlikely to end well in my book. If you cannot even tell if it is a stone or a sea-mine you are tossing into the pond, just do not go there.

[Ed P]

Just to add to Richard’s note on metabolism, there is some research showing that the gut bacteria is different for individuals with autism. link.There is other research that shows that changes in gut bacteria can have long term impacts.

However carrying out research on humans is notoriously difficult and medical researchers always seem to ignore the first rule of statistics:

Correlation does NOT necessarily mean causation.

Bottom line (no pun intended) I would be more inclined (on the basis of safety) to favour a healthy  ‘poo transfusion’ than use of a fringe drug.

[The Duke]

Wife had C-dif, twice (or once recurring last year) spending  about 9 weeks between the two spells in hospital through autumn.  I teased her the whole time that I’d happily donate some healthy stuff if the medicine didn’t work.

She was adamant  their was no way she was having a poo transplant. However the doctors did mention that  it was a possibility. Not mine of course. But I did wonder where they get healthy human manure from.

 

In regards to diet, we found out years ago, that cooking food from scratch, that there is was a noticed improvement in the children’s behaviour. It was in out skint days, when the only options was cheap cuts of meat, and bags of miss shaped vegetables, so we didn’t do this as so kind of experiment more out of necessity when I went back to school.

But the diffence is amazing cutting additives out of a kids diet.

[Author]

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