Fuck fuck and FUCKITYFUCKITYFUCK!!

[CouthyMowEatingBraiiiiinz]

Got 21mo DS3's Paed report done on his speech delay/regression and his allergies.

Here are a few excerpts : "disruptive" "his attention span fluctuates, if he is interested in a particular activity he can concentrate for far longer than is age appropriate but in general he is very easily distracted and generally keeps moving from one activity to another and from one part of the room to another"

"He shows eye contact and some interaction with parents but does not interact appropriately with unfamiliar faces or make eye contact. In fact he actively avoids eye contact with unfamiliar people"

"XXXX's speech is delayed; he can hardly say one or two words. This is a clear regression from his one year check with the HV"

"Height could not be measured as XXXX would not stand still"

"Schedule of growing skills could not be performed properly as he was constantly fidgety and restless and could not be engaged in any of the various activities that are part of the Schedule of growing skills"

And in summation : "Regarding XXXX's Hyperactivity, there are gross concerns. Presently he is too young for assessment regarding ADHD but this needs to be kept in mind and perhaps he will need further assessment if there are still concerns."

FUCKITYFUCKITYFUCK.

He has ASD and ADHD, doesn't he?

Isn't two out of four that are already dxd with ASD/HFA ENOUGH??!!

I so so so so so wanted to be wrong. I have never wanted to be wrong so much in my life. But I'm not wrong, am I?

I wasn't even there about the hyperactivity, hasn't told anyone medical because I knew he was too young to be assessed. We were there about the speech and the allergies.

And if it is that obvious to the Paed, who had no idea that I had those concerns, then it is bleeding obvious, isn't it?

Buggerbuggerbuggerbuggerbugger!

Plan if action?

1. Referral to CADU (Child Assessment and Development Unit) for assessment.
2. Referral to SALT - already have my first appointment despite the current 18mo waiting list (!)
3. Referral to Physio, in view of strong family history of Hypermobility, and although he is actively mobile and runs around, he can be very clumsy, as witnessed. 4) Section 332 notification has been made to Educational Psychologist 5) Blood investigations including Full Blood Count, urea electrolytes, Liver enzymes, Serum CK, Blood Glucose, Iron profile, Thyroid profile, Plasma amino acids and chromosome studies for Fragile X syndrome and Microarray. Urine will also be requested for amino acids and organic acids.
4. XXXX will be reviewed in the CADU.

Wtf is number 4? Not come across a 'section 332 notification to the EP' before. And why an EP at 21mo? Especially in an area where you can't get an EP visit for a 14yo, or a 9yo for bloody love nor money?! New one on me. Any explanations?

And as for number 5, the only one that makes sense to me is testing for Fragile X. Which will come back negative, same as DD's test for it, and DS2's test for it. Can anyone explain the reasoning behind the rest of the things they want to test his blood and pee for?

And just to hold my hand.

He had his anaphylaxis allergies fully dxd on Wed by skin prickly tests on Wed too. Then this report through the door today.

Skin prickly tests, he went into anaphylaxis. From the skin prick tests. To CMP. And Nuts. And 'moderately' reacts (I.e. bad but stops short of ana) to soy. He's so bad that the local Paed allergist is washing his hands of him after just one appointment and sending him to the Eveline in St.Thomas's in London.

Because another hospital added to the 8 I visit already every year, about 50 visits a year between 3 of us currently, was JUST what I needed, right?!

Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrgggggggggggggggggggggghhhhhhhhhhhhhh!!!!!!!!!

I wanted to be fucking WRONG this time.

Obviously only for the relevant appointments / consultants

(remembers self secretly wanting a triple appointment and a job lot of ADOS testing done on all 3... though only one dc was actually being seen in the development clinic at that stage)

I don't think that the APD is the issue - the DC's have it, I just have the frequency issues.

IMO, it ALL boils down to the prior CP involvement and my age, and the prejudice I face because of those things. The reason for the prior CP involvement? Because when my DD was born, I was only 16. And I was on the At Risk register. And because I had DD before I was 18, she automatically went on the At Risk register.

Hence the CP involvement. Once I turned 18, the case was left 'on file' with just an annual visit, and after I turned 20, the case was closed.

So it makes me feel like I'm banging my head repeatedly against brick walls trying to get help, simply because of how old I was when DD was born, and because my own Mother was crap.

As if that's my fault?! It's not like I got to chose my Mother, is it?!

Apparently the Children with Disabilities team here can't help you if you have ever had any CP involvement. 'Red tape'. And CP can't or won't help because the things I need aren't authorised from their budget for people whose DC's aren't at risk of neglect or harm.

And the Adults with Disabilities team say they haven't the funds to help me, as I am under 60, and all their budget goes on helping the over 60's.

And when you have no external support, and the time and mental energy to continually write to each of those teams to try to get the help you need, it gets to the point where you can't fight them any more.

I give up for a year, fight for a year. Get nowhere, everyone disappears when they have tried and failed to get the support that I need, then I give up because there's no more energy to fight. It's been the same pattern for 10 years now.

I fall through the cracks in the system every bloody time.

Ok. Saw HV today. OMG she's wonderful. I think she will be the best HV I've ever had.

She's going to refer DS3 to the sensory needs group that meets in the sensory room (which they didn't have when my others were little), she's going to come with me to the allergy management meeting at the pre school.

She's going to find out from the Paed exactly WHAT genetic tests they are going, and let me know. She's also going to ask for a referral to a geneticist.

She's also going to try to get him referred up the Evelina for his allergies.

And, best of all, her last job before becoming a HV was as a children's nurse that worked with children with disabilities. And she also has a special interest in Autism and early intervention...

I think I struck lucky with my new HV!

I was due some good luck!!

She has also asked me to email her a comprehensive list of the behaviours I am worried about, and the developmental issues, things like still no pointing at 21mo.

She will then use this to write to the Paed to outline her concerns.

Did I say, I luffs my new HV?!

That's awesome, up and up! a good hv can be exactly the catalysit required, I still miss the good one I had 4 yrs ago, didn't realise how much she was doing til she left and been through a long list of epic fails since!

Oh, that's amazing!

Google Essex safeguarding children board and draft an email to them re your situation. Dont send it till youre ready, but theyre like a schools board of governors, in that they carry the overall can for child protection failures locally. Which means the failures of flexibilties and procedures affecting your family are their ultimate responsibility.

Maybe nice HV can email people high up enough (director of childrens services at the council?) who can authorise an over-ride to the stupid red tape rules that are actually putting your dc at risk of laying harm to their development.

Well, she was a bit irritated that I wasn't getting any help from the Children with Disabilities team, and she's going to look into it.

I'm looking forward to taking DS3 to the Sensory Needs group that meets in the Sensory room. He will love it!

Drat. DS3 has learnt how to undo the zips on his fleecy baby grows.

That was my nighttime way of stopping him from playing with his privates. Mostly because a) I'm worried he's going to damage himself somehow or give himself an infection if he scratches it, because he pokes his finger into the end of it, and b) because he pulls the sides of his nappy down and ends up peeing the bed otherwise. Which he shares with me. As he won't sleep in his own bed. I don't like ending up wet.

He has been able to undo poppers to get down there since he was 11mo, trousers he just sticks his hand down the trouser, up his popper vest, and down into the top if his nappy.

Now he has learnt that if he bites the top of his fleece baby grow, he can pull the zip down.

What do I do NOW to stop him from giving himself an infection and peeing the bed?!

Anyone got any suggestions?

So so sorry you are So strong.whilst waiting for my daughters label in quote she has or should I say had some of the sensory issues your son has.teeth grinding being one Zinc,calcium and mag helped ,really she does not do it at all anymore
Take care

This may sound daft/weird, but if you get feetless babygrows, you could put them on backwards so he can't get to the zips/poppers. Its the only thing I can think of.

Oh, and congrats on the new HV. Fingers crossed she bends the ears of those who have failed you for so long.

Yy put it on back to front, or y know, a little duct tape goes a long way on a nappy.

Or slip a quick stitch through the zipper, and cut him out of it in the morning. It sounds like more bother than it actually is, it really only takes a minutes. Or use a nappy pin for the same trick.

Sorry, I'm completely out of my depth with the issues you are having, but I'm amazed by your strength and determination. Your HV sounds amazing.

With regards to the zippers on baby grows, could you attach a wide band of fabric to the top, create a button hole and attach a small button to the baby grow. The flap would then cover the zipper when zipped up, but would have to be wide enough to cover securely. I hope that makes sense.

The back to front thing might work for the footless ones he has, but a lot of them have feet. And my sewing skills are, um, shite non existent.

Duck tape doesn't work, tried that first.

He just stuck his hand in the side if the nappy instead.

And strong? I don't feel strong! I feel like a hot mess most if the time, just fighting hires to get through each day.

DD had a meltdown and shouted at DS3 because DS3 wanted her to wear Mickey Mouse ears (he kept putting them on her head), and she doesn't like the way headbands feel on her head. DS3 wouldn't be distracted, DD wouldn't leave the room, and it escalated into a double meltdown.

I have to try to appear strong because there is nobody else to be string for the DC's or to help 'carry' me IYSWIM. Doesn't mean that's how I feel inside though.

Just chop the feet off!

something that simple didn't occur to me...

If you do cut the feet off, just make sure they are not loose enough to pull up his legs and him get his hand in that way!!! :)

couthy no advice but you are bloody amazing. You mentioned chromosome 16 deletion? Earlier in the thread, i have a friend who has dc's with this ir something to do with chromosome 16, it was a battle for her ti get the tests etc but she did. Do you want me to point her in the direction of this thread? Or i have her on fb, are you on fb? Pm me if you like xx

Hi im the friend 5madthings is talking about i have 6 children 5 have additional needs my youngest only recently at 20mths starting the journey of diagnosis's..

2 of my boys Adam and Lewis have 16p11.2 duplication, my 4yr old daughter has 3q26.33-3q27.1 deletion, Daniel who is Lewis's twin also has complex needs BUT no chromosome abnormalities he is now under the GOLD study at cambridge university for gene mutation study,and Joshua who is 20mths doesnt have 16p is being tested for 3q deletion which im doubtful he has..

What your describing does sound like 16p11.2deletion which i know quite a few ppl with kiddies with that :) The duplication is very similar but the deletion does seem to cause more issues.

My boys 16p is inheritied they got it from myself but im unaffected except for few strange traits, my mum also has it and is very affected i help my sister care and support her, my cousin on my mums side has it to and she is slightly affected we think her son has it as he has quite complex needs but he is refusing to allow them to take his blood,...

Feel free to add me on facebook jan barkworth i can firstly point you to some asd support groups on there i cant add you to the 16p support groups untill your micro array results are back, also once in and if they do show something up you can join UNIQUE who are a great support network. I also run a global developmental delay support group on facebook which i can add you to if any of the kiddies have a GDD d/x, also a hypermobility support group 3 of my children have hypermobility in varying degree's . xx

Ah. So the Microarray tests that I didn't know what they were will be the test to look for chromosomal issues?

They never did that on my older DC's (I checked their medical files that take up half my filing cabinet., so if it comes back that he DOES have a 16p deletion or duplication, can I then get them to test my other DC's?

What about getting them to test my Ex, and my brother and my Mother? Would they be able to ask for microarray tests if it comes back that DS3 has this issue?

Thank you for your advice, and pointers for support. When I remember the password for my MN FB account, I'll find you and the places you have mentioned.

for coming to talk to me.

when I got micro array back for youngest then they went ahead and tested sibling and parents, rest of the family is up to them to go to their own gp and get referred for further testing I think.

As an addition, to the symptoms list, there is another thing that might be important.

When I first fell pregnant with DS3, due to previous MC's & SB, I had early scans.

When I was 6w6d pg with DS3, I was told that as a gestational sac couldn't be seen, the pg was 'not viable'. In other words, I was sent home to MC.

When I was 8w6d, as I hadn't yet MC, they scanned me again, to see if it was an MMC. They could see a gestational sac, but no fetal pole and no heartbeat. I was told that this pg was 'not viable', and I was told to have a D&C.

I refused. I was sure I was still pg and it was going to be OK because I was still suffering from Hyperemesis Gravidarium (extreme pg sickness).

I then went back for a scan when I was 12w1d. Lo and behold, baby with hb, and measuring spot on for 12w1d.

Do you think that the very slow development in the first trimester, plus the rapid 'catch up' between 8 weeks pregnant and 12 weeks pregnant are likely to be indicative of anything?

DS3 is a miracle baby tbh, because until I was 12 weeks pregnant, I kept getting told that the pregnancy was 'not viable', and that I would MC, yet he IS here.

I had the slow development thing with all my others too. My pregnancies weren't normal with any of them.

DD was also very slow growing in the first and second trimester, always measured small for dates until 28 weeks, when her growth caught up, but the scans weren't so clear 15 years ago. I also had severe pre eclampsia that developed into eclampsia. Due to the pre eclampsia, they had to induce me early. DD was born 5w1d prem. And, she got stuck in the same position for hours when I was in labour, until they put me on an oxytocin drip. I almost ended up in C-section, but she was born just before the anaesthetist came down. I don't know about her cord, didn't think to ask. My labour lasted 24 hrs. She was 6lb12oz at 34+6 gestation.

DS1 they thought had kidney problems because he had too much amniotic fluid (way too much), they had to drain some off at 23 weeks. It was called Polyhydramnios. He also had a very short umbilical cord, which was wrapped round his neck, it had to be slid off to get him out. He also got stuck in the same position for hours when I was in labour with him. I had a very long, slow labour, lasting 72 hours. I had had PROM at 28w, but it was my hind waters, and after bed rest, they resealed (?). He was born at dead on 40w gestation, and weighed 7lb7oz.

DS2 was very slow growing in the first trimester too, and again I was told I would MC. Also, when he was born, his umbilical coord only had one artery in, instead of the normal two, it's called SUA, and can be associated with chromosomal disorders. It wasn't discovered by ultrasound, which it usually is, because DS2 was in front of it in the scans. His umbilical cord was quite short too. My labour lasted 15 hrs. He was born at 40w2d gestation and weighed 8lb2oz.

DS3 was slow growing in the first trimester, as explained above. He got stuck for hours until I was put on a drip. I actually felt him move and get stuck but the MW refused to listen to me. He came out with a 'conehead' through being stuck in one position for so long, that was bad enough for him to be referred to Physio. They advised a helmet but apparently the NHS doesn't provide, and I can't afford private. I was so out of it that I didn't ask about his cord, but I overheard that it was quite short. I was in labour for 24 hrs.

I had severe Hyperemesis with all 4 pregnancies.

I have also had 7 MC's, all before 12 weeks. I lost twins at 11 and 13 weeks due to TTTS between DD and DS1. I had a baby SB at 21 weeks too, between DS2 & DS3. No cause was found for my recurrent MC's.

They think that i had the SB due to infection with Chickenpox. But I refused an autopsy on my SB baby boy because I didn't want him cut into.

I apologise for the long post, I am also using this thread as a kind of reference diary to help me have all the info in one place!

How long does it take to get results from Microarray tests? They were taken 6 days ago, I just wondered how long they take? A week? A month? 3 months? Longer?