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.

Well, DLA form for me is filled in. Charity lady going to write a supporting letter.

Fingers crossed.

Tomorrow I will ring for DS3's claim form.

Charity lady has chewed the arse off Adult Social care too, they will get back to her within a week, and then she is going to get them to do a new Care needs assessment done on me because my needs are even greater than the last one they did.

Which may not have been the case if they had just provided me with what I needed four effing years ago.

But we are getting somewhere. Which is good. I love my Charity Lady.

I think Adult Social Care gave realised their immense fuck up. The Charity Lady rung them yesterday. They have rung her back today to sort out an appointment to do a new care needs assessment.

I think they may provide what I need this time, as quickly as possible, as I have the Charity involved and even the Charity Lady has said I have very good grounds for complaint, to the point of 'financial redress' was what she said.

I think Adult Social care have had an arse chewing of mega proportions!

They are coming out together on 5th December. First day we ALL have free!

Got DS3's allergy management meeting at the preschool tomorrow. That should be fun!

Couthy, you're doing very very well. The jigsaw will most likely start making sense quite soon (social/ benefit/ medical / you /dc...) Think about printing out your threads to refer to, or even show, when you see the professionals

I've already used this thread as a reference tool! I used it to help me compile my email to the HV that she asked for.

Do you think it would be a bit early for me to be tentatively feeling like this time, this push for help will be the time it all comes together?

Bloody HV didn't turn up to the Allergy Management meeting. She didn't even ring. And it's not as if it's far from her office - it's literally across one small road.

I've tried ringing her but she's not answering the phone so I've had to leave a message.

It really pisses me off when people say they will do something and then they don't, without even a phone call. It's so bloody RUDE.

It wasn't even ME asking her to come - SHE suggested it, and even wrote it in her diary. Least she could have done is call me to let me know!

Meeting went OK, but still no firm answer about whether they actually CAN manage his allergies or not. Going to have another meeting end of Jan / start of Feb where we will go over things, then they'll make a decision by March.

There was so much that hadn't occurred to me. Paint and glue ingredients, them using porridge for heuristic play, children having milk for breakfast and not cleaning themselves properly.

It's like a bloody minefield!

The majority of preschools are nut free, because of the risk of such severe reactions, but every preschool has said they can't do the same with dairy.

Yet DS3's reactions to CMP are stronger, quicker and just as life threatening as his nut allergy.

Why does a child NEED dairy in a 3 hour session anyway? Can't they have it at home? Or am I being ridiculously naive to think that his CMP allergy should be treated in the same way as his nut allergy?

I can understand no dairy being more of an issue at school age when you are there over lunchtime, but I can't see the issue for a 3 hr session at preschool that doesn't cover lunch.

Rrrrrrrrrrrraaaaaaaarrrrrrrtggghhhhhhhhh!

I wonder if there was the same resistance to nut free schools and preschools 15 years ago or so as I am meeting now when ideally I need a CMP free preschool for him.

It's one thing expecting an NT DC to start to gradually manage their own allergy, it's entirely another to get an impulsive diagnosed hyperactive, probably ADHD, possibly Autistic DC to do so.

So ideally I need the preschool and school but I refuse to think that far ahead environment to be CMP free in the same way as they are nut free.

My DS3 isn't dead through having no CMP products for his whole life, I can't see how people are so resistant to it for the sake of 3 bleeding hours.

I can see me ending up having to HE when he hits school age.

Childminder based early years education funding is possible. Avoid preschool altogether?

Great. DS3 stole some of DD's pineapple upside down cake. It was made dairy soy but free too.

He had a bad reaction to the pineapple. It's taken me ages to get it under control with cetirizine and Piriton.

Just what I needed - another food to add to the allergy list. It means kiwi and papaya are out too. And also means he is possibly allergic to latex too. (They're all connected).

Balls.

So the list now stands at dairy, nut, soy, pineapple, probably kiwi, papaya and latex too.

I was going to trial strawberries tonight as well. I won't be doing THAT now! One reaction in a day is enough.

Banana also is linked to latex.

I have read your thread with my mouth hanging open. I feel absolutely aghast at what you are going through, and amazed at the strength you have to be supporting me when you are going through what you are going through. Thank you. Just thanks so much. I really value your posts, I don't even dare to think I can be as helpful, but I've found your thread and I just had to say this.

MNP - DS2 is allergic to Latex and says his mouth and inner ear itches when he eats it, he refuses almost all fruits except grapes and has done since he was weaned. I have a ? On Oral Allergy syndrome for him, but he's never been tested. All my other DC's love fruits and raw veg, he won't touch them says they make him itch. I just give him extra cooked veg!

DS3 seems ok with bananas though. Thank god! He only eats certain fruits, as I was warned to introduce them slowly due to his other allergies. He eats tinned mandarins, tinned pears, tinned peaches and bananas. He won't touch fresh apple, he gets a small rash from raspberries, I haven't trialled strawberries yet (was going to yesterday!). He's obviously allergic to pineapple. I have been told not to bother with kiwi till he's over 3 as DD and DS2 are both very allergic to it, as am I. He won't touch fresh peaches, nectarines or apricots.

He came up in a rash from plums.

It's just a case of adding each fruit in slowly, and leaving at least a few days if any reaction happens. I didn't feel confident enough with the severity of his allergies to start adding fruits back into his diet (we had to go back to a single food diet, adding in one thing at a time when he was 7mo) until he was over 16mo.

I have issues with fresh pineapple too, but am fine with tinned. Hence why I didn't think cooked tinned pineapple would be a problem, as me, DD and DS2 are all the same.

I know ALL of us have odd allergies, I'm worrying enough about the first time DS3 needs antibiotics, as both me and DS1 (my least 'allergic' child) are anaphylactic to penicillin and Amoxycillin.

It never rains but it pours, eh?!

Argh! DS2 doesn't eat latex FFS! I missed a bit of the sentence out. The other bit was meant to say "and bananas too."

I need to go back to bed!!

Every time he poos he is getting hives that then blister and turn into the worst nappy rash I have ever seen. It looks like he has been burnt by acid.

I can't even get a doctor's appointment for him, I'm waiting for a phone call from the GP. How a GP can tell what type of nappy rash it is, and therefore what cream to use, over the telephone, is bloody beyond me.

I'm changing him every hour day and night and slathering him in sudocrem. Since he had the reaction I have got through nearly 80 nappies trying to clear the rash, and the best part of an entire tub of sudocrem.

I've never seen anything like it. His poo isn't its normal consistency either, it's really runny.

He's in pain and I can't do anything else to help him.

How is your DS now? Is the reaction subsiding?

Finally. He has hydrocortisone cream for the hivey burny nappy rash, the GP has finally admitted DS3 has reflux (still) and has put him on gaviscon powders too. That I can't yet get into him.

I had my work focused interview, the lady there told me it was obvious I can't work AT ALL, and gave me three phone numbers, one for a DLA form for DS3, one for a Carer's Allowance form because of that, and one so that I can get my Social Fund loan repayments lowered.

DLA have my form and supporting letter, and have texted me (!) to tell me that I will have a decision within 8 weeks - which will be the 15th January.

Had DS3's second lot of bloods done today, it took them 3 goes, poor little love. First they tried his right foot but his vein collapsed, then they tried his right arm, again, the vein collapsed as soon as they got the needle in him, and finally they managed to get what they needed from his left foot. It was horrible.

But it's all done now. I've found out that the Microarray testing will take 3-6 months to come back, so I will hear about any chromosomal issues at some point between 30th Jan and 24th April next year.

So I guess I will get told when he next sees the developmental Paed on 24th April.

Lady from the Special Needs Sensory group has contacted me, even THEY aren't sure it will be a safe environment for DS3 because of the CMP allergy. She is having a meeting with her managers to discuss it, and she will get back to me before Friday. If even they can't keep him safe, then I'm screwed.

Local Charity Lady is coming out on 5th Dec to help me apply for my free bus pass - ok I'll still have to pay for a single ticket to GET them to school, but if I wait till 9.00 then I can do the rest of my journeys for free. Just wish I could get the sane for the DC's - DS1 & DS2's bus fares alone are £1.90 a day each, so I spend £19.00 a week just on bus fares for them. Currently mine is an extra £3.40 a day, adding an extra £17.00 to that.

So I currently pay £36 a week on bus fares alone, without including the times I need to pay more for taxis or extra buses (extra bus fare for DS1 & DS2 due to GP appt. after school).

Got DD's parents evening tonight, and need to think of how to get the teachers to actually DO what is written in her IEP, ask what I can do to help her bring her grades up, if D/E/F are grades at GCSE that mean she can do the college course she wants to do and I can afford to help her with.

Gah, RL is just too damn busy!!

On Thursday I need to get my next blood tests done. Oh, and apparently my cholesterol is SCARILY high - 6.5. So I now need to sort my diet and sensory food issues try to get that back down to a more normal level.

Considering I didn't get a chance to put my jumper on until 4pm at the GP's surgery, and managed to grab breakfast at 5pm (!), that's going to be fun.

At least I have done half of my Christmas shopping online tonight, and DS2's birthday presents thank you ex for letting me use your credit card so I can 'do' DS2's birthday too.

Just need to design and print his cinema invites, finish the Christmas shopping, compile a list of questions for DD's parents evening, do DS2's OT, do DS3's therapies, spend 15 minutes 1-2-1 with DS1, help DD with her textiles homework, help DS1 with his science experiment homework, cook dinner, put away my shopping delivery that's due between 10-12 tomorrow, scrub the kitchen, do some more washing and put away the clothes piled on my bedroom floor tomorrow. Quiet day then.

Could I have 48 hours in each day, please. I could do with some sleeeeeeeeeeep.

Glad to hear that the allergic reaction is subsiding.
The news about the DLA& carers allowance sounds promising too.
You have done a lot more Christmas shopping than I have.
What I want to know is were you up this morning scarily early, or had you not been to sleep?
I do hope that things begin to calm down for you. I am in awe at your stamina and keeping going. I would be a crazed mess by now as I am awful when lacking sleep.

Why do your children not qualify for free transport Couthy?

I am in the process of applying due to my own disability making it impossible to safely accompany them to school walking. But there were lots of other ways to qualify in my county council's terms and conditions. Do you have a copy of yours?

How far along in the process of getting care are you? Assessment done or not? Have you had the children assessed also? I got Children's services to come do my own children's assessment to ensure that they got everything they needed at home, they've bumped me back to the school to do a Child Action Framework meeting, which means we do meetings with agencies and work out how best to achieve stuff, but it's something. They are also willing to back me and write letters to people regards the children's needs.

DLA is obviously bubbling away in the background there, is that for you and all three DCs? The Carers Allowance will also help. I'd cross my fingers but they hurt today.

Do you have a local service like START re-ablement? They can be referred to you and come help for six weeks with certain issues, like filling out forms and stuff. I'll find a link to my own local one to give you an idea.

Had not yet been asleep. Finally got to bed at 5am. Was up at 7am. Feel like shit tbh. How do I keep going? Red bull. It's either that or be asleep while DS3 is awake...hmm]

Children's services keeps hitting red tape, Rabbits. School fills in a CAF, sends it to the Children with Disabilities team. They CAN'T deal with it (apparently, but my Charity lady is trying to kick some serious arse right now) because I had prior Child Protection involvement over a decade ago (!).

The involvement was because I was still on the 'at risk' register when my DD was born (as I was only 16, you don't get taken off the 'at risk' register until you are 18), she went on there automatically. Yet my DS1, born just 4 years later, wasn't put on there.

But when the CAF gets sent to Child Protection, they come out, say that they have no concerns about how I'm looking after the DC's, and they close the case. yet again.

Transport - officially my LA measures the distance for free transport 'as the crow flies' rather than 'shortest safe walking route'. There is nearly a mile difference between the two figures here.

Basically, I'm 1.3 miles away by safe walking route from the school. To get free transport for the DC's, both in the juniors, I have to be over 3 miles away 'as the crow flies'.

They don't take into account the fact that the combination of having Hypermobility to the point where his joints often sublux (dislocate painfully), chronic asthma AND hypotonia means that my 9yo CANNOT walk to school AND cope with a full day of school - he either has an asthma attack, suffers pain from his joints subluxing, or falls asleep in class if he walks it.

Even my local MP is aghast by the LA's refusal to pay out on bus passes given his fully diagnosed disabilities, and the fact that I cannot drive (which the LA keep telling me to do, even AFTER I tell them I can't legally hold a driver's license...).

He tried 11 times in 5 years to apply for free transport on our behalf and still failed.

So no free transport here, unless he goes to a special school by taxi. Which he doesn't. Even though he should.

Nothing like re ablement here, the Charity lady that is helping me is the closest we have.

Need to compile a list of moans about the teachers not following DD's IEP questions for DD's parents evening.

Care Needs Assessment was done 4 years ago. Adult Social Care then proceeded to ignore the things that THEY said I needed ever since.

New Care Needs assessment for me being done on 5th December as my Charity lady kicked some SW butt because I still don't have my wet room that even SS said I needed 4 years ago.

I've been strip washing next to the sink for 8 years. I just want a proper shower.

I have to tell you how disgusted I am that there isn't more help available for you and your children. You make bloody sure when they re-assess you that you give them the full picture WHAM! right in their faces, because anything short of them being amazing and giving you whatsoever you need to cope is unacceptable in your circumstances.

Only a couple of weeks then until you get your assessment done, that's hopefully positive. Could I possibly be very brave and ask for you to message me your Facebook details at some point? If you use it. I may be able to offer you more support that way. If you would like. (Am shite at doing the whole friendly thing, sorry, trying not to sound stalkery or bossy, hope it's coming across)

Oh, my LA doesn't give a shiny shit if the parents are disabled wrt free transport - they keep telling me that I will have to pay a childminder to take them to school. How many childminders will be able to deal with a 5ft1 tall 10yo who more than likely has Aspergers and (much as I love him) can be utterly infuriating as he doesn't realise that he can't talk to adults the same way as he does people his age, AND an Autistic just-about 9yo that has so little road sense that he walks straight into the road if you aren't holding onto him, and is in such a world of his own that he doesn't even hear you calling him half the time. And even more to the point, how in the name of buggery fuck would I PAY for this mythical SN childminder?! Shirt buttons?!

X-post. I'll message you my fb later, I need to get a chicken out of the oven. I'm doing lemon and ginger stir fry tonight, (no soy sauce!), using any leftovers for lunch tomorrow, then making stock from the carcass to make soup with.

Now my phone has been cut off, because I can't afford to pay the friffing bill. God knows when I can afford to get it put back on.

It never rains but it pours.