paediatrician appointment on monday, what should I ask?

[elliejjtiny]

DS is 6 years old, year 2 at school. Started being sick after May half term and gradually got worse so it was happening 4 times a day although only small amounts, couple of tablespoons size at most.

Hospital was really good, got him on the ward, MRI and blood tests to rule out serious brain problems etc. MRI was clear, blood tests showed mild anaemia. We were sent home in July with follow up appointment for monday next week.

A week into the summer holidays he got a bit better so he was only being sick once every 2-3 days. Then as soon as he went back to school it was worse than ever, being sick between 4 and 10 times daily. The only pattern is that he is less sick on Sundays and mondays and more on thursdays but I have no idea why.

I know the paediatrician will ask my opinion and it might be a good thing to have at least some idea of what I want them to do. I'm worried about the long term effects of him being sick all the time as well.

Does anyone have any idea about what questions I should be asking or if I should be pushing for tests or reflux meds?

I haven't got a useful answer to your question, but just wondered whether you are keeping a food diary in case it reveals any pattern.

How do they determine if it's medical or psychological.
That you would like to pursue both.
Should he have a referral to a psychologist as well.
Would s report from school on his behaviour etc be useful.
Should we be checking allergies and intolerances to goods or substances such as cleaning products.

Write down the history, as much as you can remember.

Spend the next week keeping a diary of obs... food, drink, sleep, activities, mood... anything you can think of

Has he been prescribed any medicines?

Does he have school dinners? Different breakfast on school days? Sounds like it must be an issue with school, surely. And more likely physical, since it takes until Sun to be better again. If it was psychological he's probably be better on Sat and ill again on Mon.
I hope you get some answers.

Thankyou. I've not been keeping a food diary but the Dr at the hospital told me to keep a record of when he is sick so I've been doing that. I was wondering if it was psychological as it started around the time he met his new teacher who has a reputation for being a bit scary and the reception and year 1 teachers send their children to her to be told off if they have done something very bad. He says he likes school and his teacher though. He has school dinners but as far as I know there is nothing in them that we don't use at home although the brands will be different. Breakfast is usually the same and he's not on any medicine at the moment.

Just thought I would update to say the paediatrician thinks ds has rumination syndrome brought on by stress at school together with a floppy oesophegal sphincter. I found out that Thursdays is when they do a spelling test at school and he struggles with spelling. I'm relieved that it's not something very serious but I'm gutted that my little boy is suffering from stress at his age.

My ds has mitochondrial disease and one of the symptoms is cyclical vomiting. We finally got him diagnosed at age 11 as the cyclical vomiting combined with migraines turned up a doctor treating these symptoms. It's NOT all in his head. Yes, it's triggered by stress, but much lower stress levels than would trigger an NT person. The mitochondrial disfunction means that ds (and probably your ds) is far more susceptible to triggers. Essentially ds' Autonomic system doesn't work properly. So if something upsets him and/or gets him very excited (even happy), his body speeds up (fight or flight reaction) like a NT person, but the autonomic system that then calms it down afterwards isn't working properly, so ds has had to learn to manually calm himself.

This is pretty well documented in the medical literature these days and I'm a little appalled that the pediatrician has not suggested any genetic testing (which is really very cheap nowadays) and instead blamed it on your ds (and as an extension of that, you for allowing him to be stressed).

Please take a look at these websites and see if any of the other symptoms look familiar to you: www.mitoaction.org and www.umdf.org . Also ds' doctor (we're now in the usa) has a website with lots of helpful information: www.molecularmitomd.com

P.S. Floppy oesophegal sphincter is quite common in mito patients as is poor eye muscle control and dyspraxia. Ds struggled with reading and writing because of this and kept being accused of "being lazy."

Thankyou @SofiaAmes. DS had genetic testing when he was a baby (sorry for the drip feed but his medical history is quite long and complicated and so I try to only put the relevant bits on posts and then sometimes important things get missed off). So he doesn't have mito. a I've heard of it before, from facebook groups I was on for parents of children with low muscle tone when ds was little.

At the moment we don't know whether ds has a whole load of different conditions or if he has a currently undiscovered syndrome that links everything together. He struggles with low muscle tone.

Do you know exactly what testing he had? The sophistication of the testing has improved a hundred fold over the last 5 years. It may be that what's available today might turn up information that wasn't available when he was a baby. Also, what they are diagnosing as mito today includes mild-to-moderate cases which may not have been diagnosed when your DS was a baby.
Your ds' poor muscle tone is a classic symptom of mito especially when combined with Gastro-intestinal issues.
My DS was greatly helped by going on the mito cocktail which is essentially a cocktail of supplements, some in very high doses, that had no adverse side effects but significant positive effects. Dr. Boles, the www.molecularmitomd.com link is my DS's pediatric geneticist and was enormously helpful in getting him able to lead a relatively normal life.
Please feel free to pm for more information.

Thankyou @SofiaAmes that's really helpful. Ds had the cgh microarray, karyotype (not sure if I've spelt that right) and they had a closer look at one of the chromosomes that is responsible for midline defects. He was part of the DDD (deciphering development disorders) study too but we haven't had any results back from that yet. We had a letter about 2 years ago to say they hadn't found anything but they were still looking. I will ask to see the geneticist again. It would be really good if we can find something treatable. He's been sick 5 times today.

Google Richard Boles and take a look at his science papers regarding cyclical vomiting and mito. It might be worth mentioning that to the geneticist. I hope it all helps.

Your poor ds. If it's got the same roots as my ds' cyclical vomiting...the most effective thing to reboot the autonomic system is to get him relaxed and rested...whatever that looks like for your ds. For mine it meant sleeping/resting 21 hours a day, listening to audiobooks and eating comfort food.