Cup and the Teaset face 2012- and this year, Beatrice means business!

[cupofteaplease]

Hi. Chances are if you've opened this thread, you may have followed us from here I thought the new year needed a new thread (also the old one was nearly full!)

The basics: Beatrice has central arthrogryposis and extensive cortical dysplasia. She is 16 weeks old and weighs 8lb 1oz. She is on continuous oxygen at 0.2 litres. She is fed Infatrini with Duocal mixed in via NG tube. She is undergoing ponsetti treatment for her talipes, she also has splints for her hands and is now in a pavlik harness full time for her shallow hip sockets. She is coping very well with all of her treatments. Her community children's nurse describes her as 'defying all the odds'.

The positives: If you have a 4 month old NT baby, the following will probably seem pretty poor progress, but for Beatrice who was stiff and non responsive at bith, she has made great gains. Bea seems very alert in this last week and is becoming more vocal too! She happily shouts at me when something isn't going her way- a vast improvement as she couldn't even cry when born. She moves her arms in all directions now and manages to lift her legs, even with the cast and harness. When she is under her play gym with lights, she moves her arms and legs in appreciation. She also mouths when she is hungry. Her breathing pattern seems much more regular since being on oxygen. She not only recognises my voice and turns to find me, but she can also distinguish other people talking and will move her head in different directions to find who is talking. We assume her eyesight is very poor, although we know she can see shadows and bright lights when it is dark. She adores the cinema and has been twice now!

The downers: Her weight gain is painfully slow- on average 2oz per week. She has fallen off the growth charts completely. She is still sick a couple of times a day. She is having a barium meal and swallow study on Monday to see if there is anything going on. Her sats are irregular and heartrate is very high, so weaning her off oxygen (which she started when she had pneumonia before Christmas) hasn't started yet.

Support: Beatrice was finally awarded DLA at the highest rate today, and we have been told to apply for a blue badge as parking in tight spaces with her oxygen is somewhat problematic . Next week, our lovely physiotherapist who has been administering the weekly plaster casts is going to start coming to our house to do some massage and play and encourage her arm movements even more. The referral to Helen House Hospice is still being processed. After Bea's casts have come off permanently (just 2 more to go!!) I plan on taking her swimming at the hydrotherapy pool in the special school where my SIL works as a SLT.

At the end of January we have a review with our 'lovely' paediatric consultant, Dr Scrooge. We havent managed to shake her off yet!

Thanks for following us here- I'll add some more pictures in a minute.

Cup, my DS3 had bad reflux and I breastfed so I couldn't mix the infant gaviscon with the milk. I used to mix a little with boiled, cooled water and feed it to him on a teaspoon, half before and half after a feed. He still sicked up a lot, though, but the sick was thicker and definitely less. So frustrating when you are desperate to feed her and she throws so much back up. ((((hugs))))

Really feel for you having to fight for what is available if only someone would think things through
Pray the letter gets written and you get the correct meds
Also that you get some RL hugs

Thank you for the kind words. GP has suggested rinitadin?? Anyone have experience of the? He said only paediatricians can prescribe domperidone.

Re PALS, a friend of mine who is a doctor agrees the care we've received hasn't always been up to scratch and suggested PALS. I'll look into it x

The care you have and are receiving is appalling, but trying to do anything about it can be debilitating as well. When I phoned the Pals line at my local hospital it went straight to answerphone, and then said the machine was full and not taking message [grrrrrr].

The best way is to get any friends you have such as the doctor to do what they can to fight your corner.

Best of luck with your endeavours, and a big hug for Bea

Ranitidine reduces the amount of acid produced so will help if she is in pain due to the reflux but wont do alot to stop the vomitting, domperidone moves things through quicker so it is not in the stomach as long so reduces vomitting. The two are often used together.

Your gp CAN also contact your paediatrician for ok to give domperidone which I think may be best course of action, otherwise pitch up at your hospitals childrens ward and say you are not going until she is suitably medicated.

Definately get in touch with PALS you so need a good team with you and do not need this messing around. It will literally just be a quick phone call or email and they will take it up for you.

I am sorry you are having a bad day today, speaking for us as can not answer for others we are very much left to get on with it. I wouldn't say people are not interested as we have met some very dedicated and caring people but the bottom line is there are not enough resources. We sometimes feel very much as though my child is a drain on budgets etc but I don't let that stop me pushing to get what is needed. No matter how dedicated professionals are it is their job but to us our children are more than jobs and that is where the difference lies.

ooops I have just reread your post and you said don't answer that bit. sorry. x

ranitidine is great start! that is the one i said often looses its efffectiveness but it help DS for about 3 months then moved onto omeprazole - which does same thing but they dont like giving it to under 1s - but many do end up on it! the raitidine prob wont stop the sick (might help a bit) - but will stop the acid bubbling up and burning her Esophagus (can cause damage if not controlled!) so is a great start - but is best used with domperidone - I would def call PALS as sounds like they will be good people to help with all sorts of things - dont worry we didnt have to fill any forms or anything in :)

i would 2nd turning up at hospital and asking for it to be prescribed - it made an amazing difference to DS once he was on it - no more choking either! xx

Cup I am guessing that as Bea is tube fed and on oxygen, she has a community nurse who I hope you see often or at least can call if needed. We found DS's nurse was excellent - they tend to work with the Paeds and have their ear, so might be able to give the paeds a push! At the very least they should be able to tell you who to talk to and may even speak to your GP for Bea. Ours had all sorts of useful suggestions about medications to try (having seen it all before).

That's nonsense, our GP who is useless prescribed domperidone (it's not licensed for children but a lot of drugs aren't because it's so hard to get trials done). Or ring the hospital and see if they will prescribe?

Our hospice referral took a while too, did they mention self-referring or getting a supporting letter from the ccn or hv?

Sorry it's all a bit crap :(

Sorry it's been a tough day, cup. It's remarkable how positive most of your posts are and not surprising that you're sometimes feeling awful, especially when you are not getting a good enough service for Bea. Hope things look better soon and Bea gets some reflux meds prescribed.

Massive hug. I don't have any tube feeding experience, but my ds1 (who has downs syndrome) had reflux. The final prescription that helped was ranitidine, the effervescent one, as he was older and refused the disgusting liquid one. I used to dissolve quarter of the tablet and put it in some diluted squash- not suggesting this for Bea but just to show there are other possibilities. He was also on a low dose of Erythromycin (which apparently as well as an abx speeds up gut mobility which can be sluggish in people with ds). When I went for a repeat prescription my gp had never even heard of this combination for reflux. Prob no help to you, but couldn't not tell you. Xx

Hope you and Bea have a good night's sleep and tomorrow is a better day. xx

Hello cupoftea, so lovely to hear your update. It sounds like Bea is doing so well

My DD2 had ranitidine for her tube, as well as Thick and Easy, both really helped the reflux. The GP prescribed it so maybe if you can get cracking with that immediately it will ease things until your hospital review.

Wishing you well xxx

Ah Cup love somehow managed to lose you for a while. Just read through from the beginning. She has come so so far. I remember her beginning so clearly it was just after we lost Erin and I remember reading her first thread with a sinking heart but willing her to defy the odds. And boy has she It astounds what a fighter she is and what a wonderful mother and advocate for her you are.

The new pics are scrumptious. I'm sorry to hear you are still not getting the support you all require. I hope PALS can help you xx

Cup , my ds was prem and has reflux . Ranitidine won't help the sickness it is the anti acid part of reflux mess . Domoeridone is an anti sickness drug . It works by pushing the food down quicker so it doesn't have a chance to come back up . It caused my ds to have quite strong stomach cramps and swift poos so it may be a little harsh on little bea .. I know it's very very different but my ds has been very poorly and I feel the same . We left special care with a bag full of drugs and syringes and a tiny poorly baby . I believe it is Only because we are switched on that he is still here . It's like there is a void of help when you are under paed care .
Gps don't want to step on their toes and the paeds I have experienced are pretty stand off ish . I do think to get attention you need to make a sing and dance but I'm sure you don't have the strength for that do you .
:(

Cup of tea: I am a SN board regular (although read more than I post!) but regarding what you said yesterday

^'The hospice said the referral wouldn't take long after they'd received Bea's medical details from the consultant, but what with Christmas and New Year I expected a delay. But this morning, I thought I'd give them a ring and just see how the referral process was going. Can you guess the next part? Yep, the consultant hasn't even sent the bloody letter. I'm so, so sick of doing all the fighting and having noone to back me up.

Why us? Are other parents out there getting support or are all parents of disabled and dying children just left to get on with it themselves lest they be a drain on resources? Actually, don't answer that, I fear the truth may be too distressing...'^

I felt I had to answer - even though you said not to! the one single thing that made all the difference to me was when I stopped expecting to get the help and support and instead started to expect to have to make a fuss. Then I was no longer disappointed about the lack of progress, no longer cross about the uncaring attitude, and no longer wasted my limited energy on that.

Instead I ring back a week or so after every phone call to check on progress, I make a note in the diary while I'm on the phone the first time...I ring or email after appointments 'for clarification'. It's time consuming and often a pain, but in the end means less delays and less frustration.

After a while the therapists, Dr's, consultants, start to expect it from you and the level of care you receive and promptness of referrals start to improve. I don't have to do this now for all the people we see, but I still do for some and any new ones we come into contact with.

As one of DS's first NICU nurses told me and is often repeated on the SN board, you are your child's best and only advocate, no one else cares in the same way. They may all be excellent people and doing their job, but that does not mean that it is best for you and your family.

Good luck, it's very hard, especially with siblings and lack of sleep and the terror that accompanies unexpected hospital visits, but once I dropped the expectation of any help, things massively improved. I hope I don't depress you, it shouldn't be this way..

Bea is beautiful and you are all doing an excellent job!

sorry about the length - got carried away!

Hi Cup

Hairy's absolute right - I almost posted similar myself.

We 'old hands' at dealing will all things SN have learnt that the only way to get the services etc that you need for your child is to complain, badger, remind and generally make youself a PITA until it gets to the stage where they might as well resolve your problem just to get us off their backs.

It shouldn't be like this. When children are first dx'd with SNs I think we expect that there will be a raft of support that will slide seamlessly under us. Unfortunately it's more usual to be issued with the dx and told to go away and get on with it.

That's why boards like this are so useful for sharing experiences and learning how to navigate through this unfamiliar SN system.

No one likes to have to make a fuss or complain but you'll find at times, it is the only way to get your child's needs met.

Re Dr Doom - you can ask to be transferred to the care of another paediatrician. It's a legal right. A different paed may be far more sympathetic and efficient that Dr Doom.

Best wishes

Hi Cup, when ds2 was tube fed the gaviscon had to be really well mixed & hot. As soon as it cooled down it would clogg the tube so we were only able to put small amounts down at a time.
TBH I'm not sure if it was the gaviscon or the fact that it slowed feeding right down but the sickness did reduce & also his Oxygen requirements & breathing improved and his chest infections finally cleared up.
Basically the reflux was causing stuff to come back up & go into his lungs aggrivating his breathing problems.

Camp on your GP's doorstep with Bea until he gets it sorted for you. The consultant needs a good kick up the arse!

Oh Cup - good news, followed by mixed news, followed by bloody annoying stuff.

Are you sure you can't get Bea transferred to a different consultant? The PITA one you have has no interest in helping your little fighter - she needs someone in her corner! PALS is the way to go if you can't manage it yourself - they are supposed to help you with any problems you are having, and frankly not giving the best care to your daughter is a dereliction of duty of care, IMO.

Please write down all the instances of slow or complete failure to help you and Bea and go and see PALS. It will make a difference, I'm sure.

She looks adorable in the photos - growing into her eyes a bit more now, isn't she :)

Best of luck - do go and see/talk to PALS asap. xxx

Hi cup. Sorry you're having to deal with such crappy paed support.

Dd1 has severe reflux, and we found domperidone really helped when she was small. She's now just on lansoprazole. Is there any chance of you asking to see a paed gastroenterologist maybe (if they have one at your local hospital)?

Agree with the others re. chasing your paed for the letter. Sounds like a rocket up her arse is required.

Hope you get some traction on it from her soon.

Hairy has it spot on.

DD is 17 months. Today we received a book in the post about support for early years and I cried because it would have been so so helpful when I was begging for support right from the beginning but everyone ignored us. I now chase secretaries as a matter of course, I start calm but do reference PALS when needed, if they are being exceptionally frustrating I say that I live just round the corner and I can pop in to collect the letter.

I used to be quite confident and willing to get stuck in but I have grown balls of solid steel since having DD and as the person who speaks for daughter I ensure everyone can hear me. Fight tooth and nail, push your anger into getting good access to services, don't turn it inwards.

bea is just beautiful, there are some you tunes movies for cvi (cortical visual impairment) which she might enjoy, lots of colour and music

Hope your week has improved

Hi Cup, I keep popping in to this thread to see how you and Beatrice are doing. Hope you've got the right drug sorted now and Bea is okay. Thinking of you.