You give me furiously to think, as they say. Oh, and by the way - that doctor's an idiot. He might be good at medicine, but he's got a lousy bedside manner. He has totally missed the point.
So here are some of my ideas and reasoning.
First - this could be a Urinary Tract Infection (UTI). Your sister may be correct. Did the doctor do a dipstick test on a urine sample? If he has a Urinary Tract Infection (UTI) then a dipstick test should have shown positive for blood and protein but MAY not have. The pH would have been low, unless you've been dosing him with Ural or similar. So, if the doctor did a dipstick test and he said it was OK, it reduces but doesn't totally eliminate (in my book) the chance of this being a Urinary Tract Infection (UTI).
If it's a Urinary Tract Infection (UTI), and his first one, then it could take longer for sufficient damage to develop, for the dipstick test to be positive for blood & protein. If it's a Urinary Tract Infection (UTI), it could account for him seeming to get worse in his behaviour - a reluctance to pull his pants down could be because it's got to the frequency stage and he can't control it properly. This can come on fairly suddenly, if the infection has been grumbling along for a few days or more. And if it's causing pain then the pain is likely to be getting worse very suddenly, along with the frequency and loss of control. Have you ever had a Urinary Tract Infection (UTI)? Remember how the burning pain is right at the end of weeing? It's like a burning, almost bearing down pain which feels like your bladder trying to wring out the last few drips of acid. Boys are less likely to get a Urinary Tract Infection (UTI) because they have a few extra cm of protection, but they also have those few cm of potential agony, too. To a young child this would be very frightening. Let's hope your sister is wrong. And a quick note - difficult child 3's good friend, another high-functioning autistic kid who lives nearby, had chronic UTIs for months before the doctors realised. In his case it was due to a congenital defect which was easily corrected surgically. He is now doing great. Once it was diagnosed, he was on prophylactic antibiotics plus alkalinisers which all stabilised him until the surgery.
Second - Asperger's plus Urinary Tract Infection (UTI) needs to be considered. If your child is possibly Aspie, then he may seem fine especially in his own space, until something comes along and rocks his boat. So a Urinary Tract Infection (UTI) could trigger some very strange-seeming behaviours as he tries to accommodate something new and unpleasant. He could be trying to find his own ways of coping (as a lot of Aspies do, the brighter ones especially). For him, the blowing/breath-holding trick could be something he coincidentally did to begin with and he might have thought it helped. If he has Asperger's + a Urinary Tract Infection (UTI), this would be a very unpleasant combination which would make him very uncomfortable as well as very anxious and confused.
Third - it COULD be PANDAS, but it IS rare, and given your family history the chance of this being Asperger's is frankly higher. Obsessive Compulsive Disorder (OCD) for Asperger's (or any other cause) or Obsessive Compulsive Disorder (OCD) in PANDAS - treatment is the same. But in PANDAS, the Obsessive Compulsive Disorder (OCD) can be a lot more episodic, it can fluctuate a lot more. This could be simply an exacerbation of Obsessive Compulsive Disorder (OCD), stimming, tics etc in Asperger's (for any number of reasons, including infection) or it could be onset. Given that medicine, like a lot of science in general, uses the principle of Occam's Razor (the simplest, most likely explanation is the one we'll give most credence to, at least to begin with) I'd be putting PANDAS on the backburner.
You can recover from strep without antibiotics. Usually your body will deal with it. A lot of people harbour strep in their throats and in their nasal tissues - it's one big reason doctors are supposed to wear masks during surgery, to avoid any strep they're carrying from getting into the wound. A strep bug in your throat is one thing, but in a wound the strep is forced to grow without oxygen and it then behaves differently and nastily. If there's a staph in there as well you can get flesh-eating conditions (which should respond to antibiotics unless it's muti-resistant staph, aka MRSA). Serious stuff. I get angry when watching those doctor shows on TV, especially those plastic surgery extreme makeover ones, and you see the surgeon with his nose outside the mask, as if he thinks he is too important to possibly be carrying strep.
But that's not an issue for Matty. Strep in the throat is just one of those infections that everyone gets at some stage.
So, what to do now?
If the urine specimen has NOT been sent in for pathology, then I would consider trying to get one done, if this doesn't improve or seems to get worse over the next few days.
If you think Urinary Tract Infection (UTI) is sufficiently likely, and especially if he gets worse in the next few hours (which in my mind would make a Urinary Tract Infection (UTI) much more likely) then start dosing him with something to bring his urine pH back to normal. In a Urinary Tract Infection (UTI), it burns because the bacteria are making acid as waste product, and this acid begins to break down the mucosa lining the urethra. The damage begins closest to the exit sign and then works its way back up. The acid also causes local inflammation which then stops the various sphincters from closing properly, at which point incontinence begins. Normal urine pH should be around 6, but in a galloping Urinary Tract Infection (UTI) it can drop to 5. Water pH should be around 7, although it will vary. The aim is to try to get his urine pH as close to 7 as you can. Stop dosing if it goes over, and begin to dose again when the pH drops to 6 or when pain begins to reappear. You won't kill any bacteria in there, but you will neutralise the acid and stop the pain. This can even bring back some control again. The dosage varies depending on how bad the infection is, so the best thing is to try to monitor the pH by testing with pH paper. If you haven't got any, you have to monitor the symptoms and stop dosing as symptoms disappear, then dose again as symptoms begin to reappear. You would need his cooperation for this because he would have to tell you if he felt it beginning to be uncomfortable again.
Do you have a pharmacist nearby, or is that at the hospital? If you don't want to make an hour's drive again so soon but haven't got any commercial urinary alkalinisers (such as Ural or Citravescent) you could mix up a teaspoonful of sodium bicarbonate in water. Make sure he's drinking lots of fluids, he has to drink a lot extra if he has a Urinary Tract Infection (UTI). The carb soda tastes soapy, he probably won't like it. You could try to disguise it with cordial. Or if you have any Berocca, try one of those. I've noticed they seem to alkalinise too. I could be wrong on the Berocca though.
A pharmacist should also be able to sell you pH paper. Or if you have a soil testing kit, you might be able to adapt that.
If this is NOT a Urinary Tract Infection (UTI) but is simply an increase in Obsessive Compulsive Disorder (OCD), then maybe you need to put him back into Pull-Ups for a while. Alternatively, you could use sanitary pads inside his underpants. It's not uncommon for kids to sometimes lose toiletting skills for various reasons. Often if they're going through a major change, or learning a new skill, they can backslide in other areas for a while.
Looking at your description of him, I'd put money on the likelihood of Asperger's. The food issues would fit with sensory integration problems. Same with the new clothes. A lot of what you describe would fit with Pervasive Developmental Disorder (PDD) in some form.
You mentioned needing to write it down for the paediatrician - here's an alternative. Go to
www.childbrain.com and look for their online Pervasive Developmental Disorder (PDD) questionnaire. It's not officially diagnostic (it's not allowed to be) but you can plug in Matty's details, answer the questions (they give a guide on exactly how to answer, if you're not sure which way to go on some of them) then you can print out the result (which also prints out the questions plus your answers) and take it to the pediatrician. Or if you have to go back to the GP, see what he makes of it. We had to deal with a GP like that, when trying to get difficult child 3's referral. The GP didn't think there was anything wrong but gave me the referral after I said, "If nothing is wrong then the paediatrician will confirm it. But if something is wrong, I'd rather know sooner."
Some months later we had to see the GP when difficult child 3 was running a high fever and I needed to know if he had tonsillitis or ear infection. The doctor said, "If he has either of those he will let you know, because he will be in pain."
I said, "He doesn't let me know, he's had them before and the only sign was a high fever. He doesn't respond to pain, he ignores it. It's part of the Sensory Integration Disorder (SID) component of his autism."
The doctor said, "Don't be ridiculous! He's not autistic!"
I reminded the GP that it was the paed he'd referred us to, who diagnosed autism.
This wonderful GP then shouted at me, as I was walking back out into the waiting room, "Stop trying to find things wrong with your kids!"
Charming.
Did you get the referral? I hope so. I know the doctor said to go back in a month if he's no better - I'd go back if he gets any worse. If he doesn't get worse, it could be a good sign, that it's maybe not a Urinary Tract Infection (UTI). In which case, nappies until the paed appointment shouldn't be too onerous, I hope.
Is Mackay your one hour drive, or the 3 and a half hour drive? It's quite a hike, whichever it is. Lovely country, though. We were there for a few weeks about 20 years ago.
husband was looking over my shoulder as I began this and noticed your sig. He commented, "She calls her 2 year old Downs son a easy child? Crikey, she's got her hands full!"
So you have his sympathy too, as well as mine.
I hope things ease up a bit for you, or at least don't get any worse. Keep us posted on how you get on.
Marg