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ASD and ADHD diagnoses in my 6 year old son - bit of a bombshell.

(24 Posts)
coldtits Tue 15-Dec-09 14:06:29

It's been recommended that his freshly diagnosed (today) ADHD be managed with Ritilin. Anyone got any experiences with a child this young and Ritilin?

He's been referred to an occupational therapist, speech therapist, various support groups ...

But nothing about him has changed. Where has all this support come from? It feels like interference - I'm so used to doing everything alone now. He's no different to the way he was a few months ago - why was it all on my shoulders then?

I'm babbling. I feel like someone just shovelled a huge pile of manure onto my son's face. I feel mortally offended by every word in the 16 page report, yet every word is true. I feel like walking through the streets hitting people for having normalcy and wasting it.

He's a clever little boy, his educational level is above average - how will that help him if he's never going to have gopod friends, go to parties and get fucking laid? You can have a life without an education - you cannot use your education if you are incapable of living a life.

All bets are off. I don't know where I'm going to be in 20 years - I had visions of 2 men in their 20's, with ds1 watching over Ds2 - is it going to have to be the other way round? Is that even going to be feasable?

Anfd oh the guilt. The times I have shouted at him for the rudeness of not looking at me while I talk to him, for constantly spilling drinks, for not calming down, for not getting dressed when he knows we have to leave the house nownownow. I don't even know what an appropriate level of discipline is for a child like ds1 now. I don't know how much and what to expect.

Soory I got diagnoses at 10.30 and my mind feels wounded. I feel wounded.

OMG should I even tell him?

TheCrackFox Tue 15-Dec-09 14:15:13

Aw sorry Coldtits, you must be in shock at the moment.

One of my friends had ADHD as a child (he still does have it) and he has an extremely successful job, gorgeous wife and baby. I don't know how but he has managed to channel all the extra energy he has.

FanjoForTheMankySocks Tue 15-Dec-09 14:20:54

If he has just been diagnosed at 6 he is obviously quite high-functioning and has every chance of having an education etc. My DD was diagnosed before 3 and I still have high hopes for her, please don't despair.

I know it is a terrible shock and you do grieve though. sad

FanjoForTheMankySocks Tue 15-Dec-09 14:21:17

It also means he can now access support to help him.

coldtits Tue 15-Dec-09 14:29:23

I know, The fact that he is coping (just) in MS school is good.

I do feel griefstricken. And then on the way home, I saw a local boy who has severe difficulties and is wheelchair bound, and I felt like such a fucking whiner, Ds1 is healthy, he can have an (odd) conversation, he can run around.

I'm an ungrateful twat

FanjoForTheMankySocks Tue 15-Dec-09 14:33:39

nooo, we all go through this, I did, and am, and I am a bit further on in process than you.

It's normal, and it's like grieving for the child you thought you had and accepting the new one, and it does happen and you will feel better.

You are not at all ungrateful, I go around seeing NT kids and feeling like that too, and my DD can run around, it's all relative, it IS hard for us and a bit of a short straw and it's OK to feel p*ed off about it!!! It isn't what we expected when we decided to have kids, and that IS a shock.

FanjoForTheMankySocks Tue 15-Dec-09 14:35:35

And don't feel guilty about your parenting, you have obviously done damn well if he is in MS!!!

magso Tue 15-Dec-09 15:55:30

I am not surprised you feel shellshocked. Even if you expect a diagnosis it is still a shock - and takes time to absorb. For us (ds has LD/Asd/ADHD)the diagnosises are like signposts to understanding our child.
You asked about medication. I was horrified when medication was first mentioned (ds was not quite 5) but it has been amongst the most useful thing we tried (I suspect most of the other things like carefully selected sn school, therapys, would have been less successful without it). It does not work for everyone ( and different meds suit different people).
You are right. Your wonderful child is the same - hopefully what may have changed (as a result of a Dx) is the understanding and support around him ( and you).

joburg Thu 17-Dec-09 07:03:15

Our 6yo DD was always hyperactive, inattentive, prone to outbursts that would last for hours. so the psychologist diagnosed her with ADHD, then referred us to a psychiatrist for treatment. He told us it’s not ADHD but anxiety and prescribed medication for only that. Then we met our paediatrician and she said, noooooo way! you can't put her on this …. so, what the heck to do next

In the meantime I was reading and reading about the damn ADHD as much as I could and the first thing I learned is that ADHD is too easily diagnosed nowadays. So I would say, don’t panic, don’t put him on Ritalin yet. Go and look for a second opinion, and a third one if necessary.

Also, this morning on one of the yahoo support groups (it has nothing to do with ADHD but toxins, and I suspect DD might have been exposed earlier in her life, so I detailed our case there, with all the problems she has), a lady mentioned a thing called pyrroles. Never heard of that before so I started reading about it, and still am, but it looks like it is often connected with ADHD. It can also give symptoms that are similar to ADHD, especially anxiety, that can cause your child to behave like he would be hyperactive/inattentive, while in fact he is just … anxious. Poor short term memory, reading problems, prone to temper outbursts, mood swings, inability to tolerate stress, forgetfulness seem to be often associated with pyroluria. I don’t know if this would be your DS’s case but it might be worth to test him (it’s an urinary test and it seems to be inexpensive also). I probably sound completely paranoid to look into all these damn’ conditions/diseases but with all the different diagnosis we got, I don’t know what else I can do other than just check as much as I can and rule out things until the root cause is clear and I find the right way of helping my daughter.

I don’t know if this helps but at least I wanted to let you know you are not alone and even if it would be ADHD in the end, this is not as bad as it sounds

FanjoForTheMankySocks Thu 17-Dec-09 07:31:11

I wouldn't get sucked in to spending money on treating "pyroluria", it is widely thought of to be quackery with no medical basis and there are lots of people out there willing to make money from worried parents, sadly. sad

FanjoForTheMankySocks Thu 17-Dec-09 07:32:08

en.wikipedia.org/wiki/Orthomolecular_psychiatry

Goblinchild Thu 17-Dec-09 07:42:23

Not got time at the moment, but there are several of us around with high functioning Aspie teenagers in mainstream and doing GSCEs and at Uni/college etc and managing very well.
Mine's 15, life is much easier than when he was 6 or 7. Got the dx at 8 and it was a key that unlocked so much, not just resources and info but my understanding of how he works and functions.
I recognise the shock, but I'll be back later this evening to tell you loads of possible Good Stuff about your boy's future chances. grin

bubblagirl Thu 17-Dec-09 07:58:10

sorry your feeling so shell shocked coldtits but its perfectly normal reaction my ds had lots of problems when he was 2 onwards was dx at 3 with high functioning autism i went through exactly the same feelings your having now but under the right care etc he has now managed at ms school which i would never have imagined he is bright and friendly and the children love him and he seems to be loving them too his 4.8 now and is clearly very high functioning his not without his difficulties and i dont know what else i will be faced with along the way but whatever it is i know i will be proud no matter what and i know he will have help available thankfully because of the dx

i do still have days where i feel down but i only have to see him being him and i wouldn't change him for the world

the support is not interference its making sure he has access to everything to help him function fully without it my ds wouldn't be coping the way he is

if your high functioning you have every opportunity to ;ive your life the good education will also help maybe friends wont be a large group but my ds clearly has friends at 4 fingers crossed it continues but i do know adult asd and adhd who go out and socialise etc i tend to just see that as my ds is at higher end this will be him too

plenty of parents on here with asd dx so you obviously can get job relationship family this is what i stick to accept all help going accept your ds needs additional help it doesnt make him any different to who he was his just getting better chance of moving forward with peers

give yourself a break and time to accept the dx it does get easier xx

joburg Thu 17-Dec-09 08:51:31

… if you see it from the point of view of those Orthomolecular psychiatry people, probably yes. Quote from a link to wikipedia: “According to Carl Pfeiffer, pyroluria is a form of schizophrenic porphyria ….. “ these guys are probably trying to explain the wrong illness through the wrong diagnosis. I agree with you.

On the contrary, I was talking about this: “Pyroluria Syndrome is a genetic (some are not really sure it is genetic) chemical imbalance which involves an abnormality in haemoglobin synthesis….. These individuals usually exhibit some symptoms of zinc deficiency and B6 deficiency, which include poor stress control, nervousness, anxiety, emotion mood swings, severe inner tension, episodic anger, and depression. ” See here:

http://www.adhd-support.org.uk/master.html?http://www.adhd-support.org.uk/pyroluria.htm

that’ s about it. No mumbo-jumbo just lack of certain vitamins and minerals that can cause certain problems. But as I said, I am still trying to find out more about it, and if i can help my DD then i'm even ready to try a thing that might be mumbo-jumbo ... after all she won't miss a couple of drops of pee for the test

joburg Thu 17-Dec-09 09:02:35

but then, this post is not about pyrroles, that was just an idea, which might help, or it might not. This is about ADHD/ASD and i couldn't stress it enough ... getting a second oppinion is what i would do next, no matter how much would that cost! These issues are so sensitive and many professionals just jump into conclusions …

FanjoForTheMankySocks Thu 17-Dec-09 09:25:56

pyroluria has no medical evidence to prove it though, so I would be very wary about it.

r3dh3d Thu 17-Dec-09 09:38:28

Sorry to hear you're going through the mill coldtits. Diagnosis is rough. I guess you have to stand back a bit: on the one hand allow yourself to grieve/get angry/etc; on the other you can't let all that influence decisions you have to take now for your DS.

FWIW, I have just been diagnosed (at 43) with ADHD. Apparently I also have Aspie traits, though that's not a diagnosis iyswim.

Without medication, I have 10 o levels, 4 a levels, a degree, a successful career (or I did before DD1) etc. However, I wish I had been diagnosed as a child and I am now necking the ritalin enthusiastically. If I had been taking it at school, my life would have been better. Period.

There is some research out there about ritalin in ADHD/ASD and the conclusion is that it works just as well as for kids with just ADHD, and in fact some of the possible behavioural side effects don't present in ASD kids.

I can't speak for 6 year olds, obviously, but when I looked into the risk/reward of medication as an adult, it seemed like a total no-brainer. The reason ritalin etc are prescribed as a first resort is there is so much evidence that it works. The most common side-effects seem fairly easy to spot, and you can discontinue treatment without any withdrawal issues. So I saw no possible drawbacks to giving it a go. If it doesn't work, or if I get unlucky with side effects, what have I lost?

Mike55fix Sun 17-Jul-11 05:05:34

Pyroluria is a "medically unrecognized" but very real disorder & easily provable as real. In my opinion, & there is good evidence, it has been ignored, dismissed, & suppressed since it's discovery in the early 1960's because it explains & leads to inexpensive natural treatment for a large number of highly profitable disorders from ADHD, Panic, Phobia, to Alcoholism, eating disorders, & Osteoporosis.

One must remember that the huge Medical/Pharmaceutical industry is a business whose first priority is making money, second is controlling health information & regulation, & third is helping sick & injured people.
While individual health practitioners can be warm & noble minded individuals, in all organizations, the higher up you go in the pyramid of authority, the more decisions are based on Corporate & Industry profits & less on what is best for the peasants below.
The never ending scandals in politics, big business (Banks), & most recently with Mr Murdoch illustrate this well.

The good news is that Pyroluria is definitely Not genetic, but a (poor) diet/weakened & immune system- initiated, multi-resistant Infection which is easily treated & slowly reversed with vitamins & inexpensive natural foods. One can feel, or even more easily observe in another, a calming of anxious feelings & behaviors such as ADHD, obsessiveness, Phobia, & even the strong urge to self medicate uncomfortable feelings with food, sex, alcohol, or shopping, in less than One Hour.

Research well Pyroluria symptoms & Pyroluria Infection on your own for the health of your family, because Drs are not taught inexpensive natural remedies that interfere with the Almighty Revenue Stream.

justaboutWILLfinishherthesis Sun 17-Jul-11 07:28:08

Message withdrawn at poster's request.

hannahsmummsy Sun 17-Jul-11 23:13:12

i have asd , im a mum have had various jobs , help with the brownies , life with asd isnt easy but life in general is hard . with you sound like a lovely mum with your support he will cope xxx

hannahsmummsy Sun 17-Jul-11 23:16:11

ps i dont have many friends but i do have some good ones who like me for who i am xxxx

nomadwantshome Mon 18-Jul-11 22:14:41

Mike - sorry to disappoint you but my ds has a pretty healthy diet and is still adhd. If only it was that easy!

I DO agree with you on the making money with the phamacutical industry, I'm sure it goes on. I really think we should take a balanced view, if its really desperate we should think about meds. If not lets look at
alternatives.

I am a bit of a natural freak so wondering where we can go from here?

ouryve Mon 18-Jul-11 22:41:41

It's a shock, I know. My 7 year old has ASD and ADHD, but, unlike you, I've had 4 years since his first diagnosis to get used to the idea and the whole of his life and before then to have a pretty good idea that ASD was first a possibility and then pretty damned likely.

For the past year, he has been taking Atomoxetine (Straterra) for his ADHD and it has changed his life in a lot of ways. He's gone from being barely able to string a sentence together and unable to do anything but shuffle through a pile of lego to a fairly articulate boy who can build all sorts of weird and wonderful lego structures. Despite other issues which prompt him to refuse to work at school, a lot of the time, this boy who couldn't string a sentence together got level 2A in his SATs teacher assessment, this summer. That is how big a difference his ADHD medication has made. He's still hyperactive and autistic and a bleeding pain in the behind a lot of the time, but he's far more focused for it. Ritalin works in a different way from Straterra, but it still might prove to be a turning point for you.

On a social scale, I don't worry that by his teens he will probably be holed up in the bedroom and ignoring the girls. DH was like that and has done OK out of it.

ouryve Mon 18-Jul-11 22:48:05

I should read dates, shouldn't I! blush

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