Victory dance anyone?

I must admit I was disappointed about yesterday’s meeting with the paediatrician. I didn’t know what to do really. Do I wait 3 months and then have to wait for a referral? How long will that take?
I am an extremely impatient person. Then there is the paediatrician. He was so fixated on ADHD, which doesn’t sum dinky up.
Yes, she can be a live wire, but that is mainly due to heightened anxiety.
I have noticed that she is more of a live wire at swimming and in the morning school activities.

This seems like a complete waste of 3 months!

When I dropped dinky at school I gave the end of the week teacher the ADHD forms. She was a little shocked when I mentioned the possibility of a PDA assessment after they have completed the ADHD assessment. Her comment was “double whammy?” I said “yes, just for kicks!”

When I got in and the clock turned 10am, I phoned NAS. I asked them what they suggest. Lovely woman on the helpline! She sent me through all the PDA diagnosticians in a 200 mile radius, and suggested going back to my GP and asking him for a referral on the basis that the paediatrician is unable to diagnose the primary concern.

So I phoned the GP surgery. They had an appointment for 11am!

So I got my iPad and printed off the information she sent and went to the doctors.
I told him about the appointment and he said it wasn’t uncommon for paediatricians to have not heard of PDA. He did consider the Elizabeth Newson centre, which is THE place to get assessed for PDA as the person it is named after is the person who first diagnosed PDA in the UK.
However we live in the south and it is very far to travel. Another name on the list is not too far away. He asked both myself and school to fill in an ADHD/ODD/CD/anxiety/depression form. Which personally I feel is a waste of time as it is only ADHD that is a possibility. Obviously PDA produces anxiety but she doesn’t suffer from anxiety alone.
Although I think he may have copies of the ASD questionnaires. I am not going to question the forms he gave me, I’m sure the PDA paediatrician will send out the forms she feels need to be completed.
He mentioned sleep and melatonin. When I said that the paediatrician sanctioned the use of it he wrote a prescription and said that I can choose to use it or not, but I looked like I could do with a good nights sleep!

I gave the GP some of the paperwork I had as I hadn’t time to make new copies of all of it. He knows I have it and said it would prove useful for the PDA Paed.
The melatonin is special order and will arrive at the chemist on Thursday.

The head phoned to ask how the appointment went. I think I am starting to get her. She is very power driven and likes to be in the know. She doesn’t like being ill informed. She only phoned so she knows what is going on ahead of the first TAC.
Luckily she phoned after I had been the the GP. I told her what happened at the paediatrician and that the GP was re referring to a specialist PDA diagnostician. She seemed taken aback. More so by the idea of ADHD. Or that Dinky may end up with 2 diagnosis’.
She also told me that dinky was allowed to go on the school trip!!! Woohoo!

What a day!!!!

Some of the other mums asked if they made a decision and I said that yes I had heard just as I was walking out to pick her up that she could go. One of the mums said “we’ll they have to make allowances for the naughty kids.”
I said “she is not naughty, she is going to be assessed by a specialist in a little known autism spectrum disorder and the paediatrician we saw yesterday wants to assess for ADHD!”
I am so sick of people saying she is naughty. It did shut her up!

Dinky looked like the Cheshire Cat when I picked her up!

“I’m going to the beach!” She announced.

Gotta love her!

I told the teacher that the GP is going to refer for the PDA assessment as soon as the new forms were back. So we swapped.

It was interesting to tally them while dinky played in the park. Her home and school ADHD scales are not majorly different but different enough.

0= never/rarely 1=sometimes 2=often 3=very often

My total

0’s- 3
1’s- 6
2’s- 3
3’s- 6

Total= 30

Schools total

0’s- 1
1’s- 1
2’s- 4
3’s- 12

Total= 45

Obviously home is different. Her obsession with Netflix means she sits quietly and still for hours at weekends and evenings. She can still be a complete handful and very energetic which is amazing given her lack of sleep, but is not on the go 24/7, at school she is on edge and avoiding a lot of the time. It makes sense why the schools is worse.

I just hope they don’t go overboard with the ODD part of the new scales they were asked to fill in.

When we got home we had the letter for Dinky’s special needs group… She has 5 days of activities over the 4 weeks it is running! She will be happy… Farm trips, films and play… What more can she ask for?

So to summarise…

PDA referral….. WIN
Melatonin…. Win I guess
School trip …. WIN
Special needs group..WIN

whooop!

I feel like I have spent most of my day sorting bits for dinky. I am shattered. Tomorrow I have an appointment at the local autism drop in clinic tomorrow, more signposting and ideas hopefully.

So a win day for the pursuit of answers and things for dinky.

I so badly want to do a victory dance!!!

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4 thoughts on “Victory dance anyone?

  1. Brilliant, brilliant and brilliant and all down to your hard work. Not content with the paed appointment you have taken it in your own hands to press forward and not sit back and it has brought you results. some kids can have a dual diagnosis of ADHD and PDA, currently waiting for ADHD Ass for Mollie so you may as well explore all possibilities as long as ADHD is not being used to describe the PDA. You have done so well, have a victory can of Red Bull 😀

    • This was another that was sat in the spam filter… I may have to check it more often…

      Thanks for replying!

      I see how dinky may have both PDA and ADHD, I just don’t think her extreme demand avoidance for putting clothes on, even to do something she would like to do, just because it is a demand, part of ADHD…

      I think I should start a ‘muppet watch’ feature lol

  2. Dance away!!
    You’re half-way to proving you aren’t
    a crazy, neurotic mother, so who cares!! I am so super stoked for you both. Well Done Dinky’s Mum!!!! xxxx

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