Is this email ok to send to pead?

[hereidrawtheline]

Dear Dr. B-,

I apologise for writing to you again, but we are going from bad to worse. Just a few points I would like to make. I really feel we need to get melatonin prescribed for --- as he is not sleeping well at all, and I understand my GP cant prescribe this but you can, which is why I am writing to you now.

Also -'s emotional state has become drastically worse. He spent all of last week trying to get an invisible spider off his neck during his meltdowns, and citing that as his reason for not sleeping. This was after little miss muffet was sung at school. He is communicating as one of his alter ego, - puppy or - kitty etc almost all of the time. He is angry and lashing out at us many times a day. He is still extremely affectionate and has even taking to licking me in his good moods but he is very much not "normal" much of the time now. His teacher, -, has noted some of these things as well others and we are having a meeting soon to make an IEP.

I am sorry for writing to you again, I know these things take time, but it would be helpful for me if I had some clearer idea of what the schedule of things is going to be. I know we were asked to come back to CAHMS for several sessions with their doctor but I do not know when that will be. I do not know if I will be seeing you soon or not until all of the CAHMS sessions are done (which could be months, I have no idea) and in the meantime he is not sleeping and his issues are getting worse and worse. We're doing everything we can to help him but it would help us enormously if we knew what was going on and also have means to access a professional for advice etc with regards to things such as melatonin.

Kind Regards,
---



Right how does that sound? And also do you think there is anything significant I have mentioned on here that I have left out of the email? Thanks very much. Do you think I should send this? Or should I wait. Its just I have NO IDEA what is happening. And it is getting so much worse. What should I do?

[lingle]

bumping for you. You come across as polite and constructive - like someone who wants to work with the doctors and will listen.

I didn't know whether you might want to set out the timeline of appointments/initial opinions so far and perhaps be more specific in your requirements if possible? could it get you more attention if you used language like "I fear he is regressing" (apologies as I appreciate I'm using that term loosely)or "he appears to be in crisis"? I throw these out for others with more experience hereIdrawtheline as I'm not an expert - but I'm just thinking about how moondog always advises us to be very very detailed about our requirements.

On the spider issue - might it help to spell out how many meltdowns, how long they lasted and something to convey their intensity? Also to mention his hitting you?

On the other hand, you've kept it at a length that the paed can read in one screen which (I know it sounds silly) is always a good technique with busy people.

anyway, bumping for givemesleep and the others. Meanwhile supportive thoughts coming your way from Yorkshire.

[Hassled]

It reads very well. Send it, and then call him/her in a couple of days to ask if he's read it and has any feedback.

The only thing I might change is the opening - you have no need to apologise, and it sort of undermines the very reasonable concerns you have. Maybe just "Given the deterioration in 's condition/behaviour, I am writing to request that the Melatonin prescription be issued...", i.e. launch straight in there. Be assertive. And poor you, it sounds like a hell of a tough time.

[hereidrawtheline]

thanks very much for your feedback. I just sent this amended version:

Dear Dr. B-,

I apologise for writing to you again but given the deterioration in -'s emotional state I am writing to request he be seen and given a prescription for melatonin. Just a few points I would like to make. I really feel we need to get melatonin prescribed for - as he is not sleeping well at all, and I understand my GP cant prescribe this but you can.

-'s emotional state has become drastically worse. I fear he is regressing and he is beginning to be in crisis. He spent all of last week trying to get an invisible spider off his neck during his meltdowns, and citing that as his reason for not sleeping. This was after little miss muffet was sung at school. He is having at least one but likely 3 or so meltdowns each day. He is communicating as one of his alter ego, - puppy or - kitty etc almost all of the time. He is angry and lashing out at us many times a day. On the plus side he is extremely affectionate and has even taking to licking me in his good moods but he is very much not "normal" much of the time now. His teacher, , has noted some of these things as well others and we are having a meeting soon to make an IEP.

I know these things take time, but it would be helpful for me if I had some clearer idea of what the schedule of things is going to be. I know we were asked to come back to CAHMS for several sessions with their doctor but I do not know when that will be. I do not know if I will be seeing you soon or not until all of the CAHMS sessions are done (which could be months, I have no idea) and in the meantime he is not sleeping and his issues are getting worse and worse. We're doing everything we can to help him but it would help us enormously if we knew what was going on and also have means to access a professional for advice etc with regards to things such as melatonin.

[lingle]

looks good. Paed will know exactly what you want and why from the first sentence.

[hereidrawtheline]

thanks. I'm nervous.

[bubblagirl]

i would also put your ability to cope with said meltdowns is becoming increasingly difficult as you are both sleep deprived and feel that issues have worsened due to lack of sleep and at the moment you are both struggling rest sounds fine i was taken seriously when i said my ability to deal with ds while sleep deprived was very hard

and also ds melt downs are becoming more frequent and taking longer to calm him down as when his tired there is no ability to calm him

something a long them lines i'll keep my fingers crossed oh also his ability to fall asleep make sure you make that point his unable to settle to sleep as my paed weren't going to prescribe it if it was just sleep problems but was more than happy when she knew he wasn't settling alone at all as melatonin induces tiredness

[lingle]

I think she's sent it bubbla but if no response then those points would add weight to any follow-up and also be useful in the appointment itself I bet.

[hereidrawtheline]

yes definitely bubbla

[bubblagirl]

didnt realise was already sent lol

[WetAugust]

Hereidrawtheline.

have you read Tony Attwood's book: Aspergers syndrome - a guide for parents and professionals. It decsribes some of the behaviours you mention such as the sensory issues and impersonating an animal. Might be usefull to show to the CAMHS chap to at least get him starting to think along those lines.

CAMHS do not always diagnose correctly. My own son was blatently misdiagnosed by them and I had to take him to a private Psychiatrist to get their dopey (and very damaging) dx overturned. if you don't have confidence in this particular CAMHS person either now or in teh future then ask for a 2nd opinion by another professional who specialises in ASD - you are entitled to that. Also, check out the creds of the CAMHS doctor / pysch on the GMC Register of Specialists - you would be surprised at how many do not have Child and Adolescent Mental Health as their specialism - one was actually a kidney specilaist!

[hereidrawtheline]

no I havent read that book. will look it up on amazon.

I still havent heard back from the pead. Should I do anything?

[lingle]

with lawyer hat on I'd call his secretary with bubbla's post in front of me, asking her to check the email arrived and mentioning a couple of points that bubbla made.

But givemesleep and others would have better advice as they know this system - it's not like the patent courts I suspect!!!!!!!

[hereidrawtheline]

WetAugust I wanted to say I just ordered that book off amazon should be here within a week. Thank you.

lingle I havent decided what to do about the email. I am so exhausted and sleepy and tearful I dont want to do anything right now.

[hereidrawtheline]

i still havent had a reply to the email DS is just so manic he is talking so fast and then licking and running into everything and screaming and throwing. We have agreed (the 3 of us) to do the restraining method for a while wrt the violence issues. He is just so loud. I feel like crying. I wish he would just be quiet for a little bit. DH and I cant have even a 5 min conversation, literally, not even that. I am so tired! I mean I am so so tired I just feel like not doing anything but its DH's bday and I am trying to make it nice for him. But I have a migraine and DS is just so manic. I know he is manic because in the brief second he stopped talking because he was tripping over his words he just started licking himself loads.

I have drafted a follow on email but not sent it. We are going out for a while. What should I do? DH says I may offend the doctors and burn bridges but I just dont know waht to do. I still dont know ANYTHING. I dont know what the schedule of events is going to be. It could be a year or a month I have no idea. I dont want to go in guns blazing because I haev a very healthy fear of the power of the nhs but I just feel like an idiot sitting here not knowing anything or being answered.

What should I change about this please help

---

Dear ---,

I have not received a reply to this email sent 30 June. I am sorry if contacting Dr. --- over email is somewhat of a nuisance to her or yourself but as I have not been given any alternative means of communicating or receiving help for us there is not much more I can do.

Can I please have an answer to the questions asked previously:

When are we seeing CAHMS again?

When are we seeing Dr. --- again?

Is Dr. - willing to give us a prescription for melatonin for - to help him calm down enough to fall asleep?

While this may be one of many cases for Dr. - may I remind you that we were referred nearly a year ago and our referral was misplaced by Colchester hospital on more than one occasion. It has been suggested that we "jumped the gun" somewhat in the past with assuming - had some form of autism, but considering the lack of constructive support, communication, and interest we have had it is not surprising we are resorting to trying to solve this on our own. I am not asking for an instant diagnosis but some level of consideration as to informing me how the professionals are planning on going forwards. At the moment I have no information whatsoever and am just waiting for a letter that may or may not come. It seems that at the moment this is very much a one way street. I am afraid I have decided to make a complaint to PALS about how the referral was mishandled, how poor the communication has been, and how little support we have had as I feel the whole thing has been somewhat of a shambles and certainly not compassionate to a family with a lovely child in distress. I will copy you in to the complaint that I make.

I am sorry I have had to send you an email of a complaining nature, I have genuinely tried to keep a positive working relationship with all the experts involved and would like to continue doing so in future, but I am afraid my priority is my family and the best interests of my son, which are currently not being listened to.

Kind Regards,

[wasuup3000]

I would wait a little longer for a reply. My paed's response time is precisely 23 days!

Meanwhile take "little here" out in the pushchair for a walk-or to the park, perhaps?

I don't know if it would be worth ringing the disabled children section of the social services and explaining the situation on the off chance that they may be supportive and able to help?

[TotalChaos]

take out the stuff about making the complaint. as apart from anything else, I presume you aren't 100% sure at this stage whose fault the botched referral is - whether it was GP/HV or at the paed's office, so no point going in heavy right now against the paed. Also - I would not rely on the e-mail - in that I would also 1)call up CAMHS to try and find out what the heck is going on and 2)try and get through to paed's secretary, and explain you need an urgent appointment given the sleep and other issues as mentioned in your e-mail. paed sec may be able to help - or may tell you to get your GP to contact them for an urgent referral.

[hereidrawtheline]

thanks for the feedback I will do all those things Monday then.

[daisy5678]

I think that you're being a bit unreasonable to make this bit a complaint - it's only been a couple of days since you sent the first email, and he may need to speak to others before replying who may be on days off (no consultant here works a full week!)

But I can totally see why you're frustrated. FWIW, I rarely communicate with J's psych by letter - I usually phone and she calls back the same day - why don't you try phoning? You might get a quicker response that way than sitting in an in-box or becoming a 'come-back-to-that-later' case.

[lingle]

agree - don't send it

[pickyvic]

agree with the Tony Atwood book being very very helpful.

[hereidrawtheline]

ok at least I had the clarity of mind to ask you lot first thank you. I am shelving it.