Interesting meeting with paed today

[Graciefer]

DS1 (who is almost 5 and has autism) and DS2 (who is 18 weeks old and has downs syndrome and bilateral talipes) both had appointments with their paed today.

As always we mentioned how DS1's bowel movements were a huge concern and she has agreed to both refer him to a top nutrionalist out of county and to take stool samples.

She also asked us to keep a food diary, because of his casein free and severly self limited diet, she wants to set the dieticians a challenge to produce a diet that he will tolerate (after us telling her how useless the last 2 dietician appointments have been).

She also mentioned that it sounds like he has 'fast transitions' or something like that and about some testing, involving giving him certain cells and monitoring how long it comes out the other side. It all sounded a bit complicated.

School had mentioned that he has 'blank episodes', she mentioned giving him a ECG under GA, but after spending a couple of hours with him, she stated that she thinks these 'episodes' are just him concentrating and thinking about things, taking it all in, which I tend to agree with. So we agree to leave any ECG for now.

I really thought the medical profession had given up on trying to find out the cause of his bowel problems and more important how we can make it better, so I am chuffed to bits.

She also agreed to prescribe us liquid melatonin, which we hope will help with his broken sleeping patterns, especially in the summer.

They were really pleased with DS2's progress, his feet are looking great now and they told us that his development is in line with that of a NT child, however to be prepared to see this drop away as he gets older.

We did mention that we have noticed a lot of side to side eye movement with him and it looks like he may have Nystagmus, although just how seriously this is going to affect him is yet to be seen, the paed has referred us to the ophthalmologist based at the CDC, so hopefully that appointment will come through, sooner rather than later.

Obviously the nystagmus is a bit or a worry, but all in all we came away from the appointments feeling rather positive.

I have to say we are so lucky to have such a great paed!

[Graciefer]

Oh should of added, I have been doing a bit of reading on the RNIB site and it turns out nystagmus is often connected to downs syndrome, which I never knew.

Although I am no stranger to the condition, as my older brother has had severe nystagmus all of his life.

[mamadadawahwah]

Wow, a paed who acually referred for further bowel/gut tests? Better hang on to her.

My boy's ex paed told us that his gut problems were just "down to the autism".

Have you considered getting your own private nutritionist or medical practitioner dealing solely with autism to investigate your child's bowel problems? I am sure you know that gut/bowel is one of the biggest areas of difficulties in children with autism.

we have battled it for years.

the doctor wants to test "motility" in your child, to see how long it takes for a substance to pass through his intestines/bowel.

you might know this yourself, if you examine your child's bowel movements to see if there is relics of what he just ate. for example if he ate blueberries for breakfast and they come "out" by lunch, he has good motility.

too quick motility and too slow motility are neither good. Do you have any evidence of your child's nutritional uptake? Is your paed willing to do other tests like amino and organic acids to see if there is bacteria in the gut and also good nutrition?

just a thought.

[Graciefer]

Talking to her, it was evident that her hands were pretty much tied in terms of tests in the local area, once allergies had been ruled out.

I think the standard answer then is to refer to dietician's, who unfortunately in my experience or as useful as a chocolate fireguard when it comes to DS1 problems (I am sure they are wonderful for some people).

However our paed specialises in autism and is very passionate about it, so is happy to bend the rules a bit or seek help further afield.

We mentioned that we were considering seeking help for a private DAN doctor, but the expense was a worry, thats when she said she would refer to this out of county consultant.

She also mentioned Dr Wakefield and his team, which I was somewhat shocked by, I didn't think medical practitioners would dare nail their flag to a pole these days.

Anyways, at least something is happening now, as these bowel problems have be ongoing for almost 5 years now and like DH said last night, no way would him or I be expected to put up with it, so why is it considered an acceptable side effect to autism!

[mamadadawahwah]

wow, she sounds like one in a million.

it is almost IMPOSSIBLE to get your child's gut's looked into by a "professional" when your child has autism.

they just will not admit that there is a problem.

[Pixel]

My ds has always had bowel problems. He did get referred for tests but they put it down to 'toddler diarrhoea'. He's almost 8 now and still not much better. I know his walking's not good but I wouldn't describe him as a toddler!
The funny thing is, the doctor we saw at the hospital refused to believe that ds's autism had anything to do with it and just talked over me every time I tried to mention it. Then we moved and I took ds to our new GP. After I told him about the bowel problems he said "Well, do you know that could be related to his autism?" Aaaargh!

[mamadadawahwah]

they b.s.you because they have no idea.

since when do toddlers have diarrhea? as a matter of course.

if i and some of the other mumsnetters had the time, i would write a book on this subject. but unfortunately, i dont and others have written such better books on it than i could.

all i can say is that the gut, your intestines, colon, everything, is 60 percent of your immune system. If your gut is messed up, so is your immune system.

Leaky gut syndrome, bacteria, parasites, malabsorbtion, so many difficulties our kids have, are not being taken seriously.

Its still going to be up to the parent to help their own child, to take control of their own child's health.

the information is out there and from other parents who are always, in my experience, happy to help.

[yurt1]

graciefer - is this Dr J? She is very good if so. And always interested in diet etc.

[babalon]

Hi there Graciefer- I'm not actually any help towards ds1 but I was wondering did I speak to you regarding your ds2's talipes a few months ago? Did you know about the Ds before he was born? It's purely for intrested sake really,talipes and the link to other conditions is always a concern on another forum that I post on.

Glad you are feeling positive since the last check up, all the best

[Graciefer]

Pixel: I know just what you mean about 'toddler diarrhoea'. thats all our GP would ever say and it was so infuriating. We have started our 4 week food and bowel movement diary today, now we just have to figure out how we are going to get these stool samples done on a weekday morning, as DS1 is at school every day now.

Yurt: No, this is Dr R R - she is wonderful, so much so that children with downs syndrome normal see DR T C at the CDC, but we requested that DR R R took on DS2.

babalon: We didn't know about the downs syndrome or the talipes before DS2 was born, depsite having several scans late in pregnancy due to his size. Nobody has mentioned a link between his ds and his talipes to me, although they did give him a hip scan because of his ds and I have been told that nystagmus is often connected to ds.

We have just has the doctor (trainee?) who sat in on the meeting with the paed call us, to inform us which chemist stocks the liquid melatonin locally, had him trying to arrange a meeting about DS2 not having any jabs for about 10 mins, I think he finally got the message that it was negotiatable in the end, well hopefully anyways!

[Graciefer]

*non-negotiable even

[yurt1]

Ohhhh Dr T C is bloody useless, he mutters and peers at you - lucky escape...... I've heard good thing about RR and bowels.....

liquid melatonin locally???? That's one for the next paed appointment.

[yurt1]

Oh and Dr TC would pass out at no jabs- he got terribly excited about ds1 being autistic despite having the single measles jab and wrote it in every letter (which made me think he had rather missed the point ). The rumour is that he drinks whiskey then drives home (but its probably a terrible lie and made up).