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Category: Gastro

Hardest by far

February 16, 2018February 16, 20184 Comments

When you've reach a breaking point it seems that all hope is lost, you've failed. The worst part, it's not you that you've failed, it's your precious daughter. Since being born it has been a monumental daily effort to hydrate our sweet girl. No suckle reflex meant months of licking the teat and feeds lasting … Continue reading Hardest by far

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V had a lovely warm dip to ease her aching muscles. She loves to float around 💜Violet has gained .7kg in a month due to the steroids. Her cheeks are so chubby, can’t stop kissing them 🥰

Working hard on her trike this weekend 💜Violet tires much more easily these days due to the medications she is on and because we are having seizure activity. So little but often bursts of exercise are best.

Complex Epilepsy Team 🧠💥 Today we met with the specialist epilepsy neurologist. I was also surprised to see Violets community paediatrician, Epilepsy nurse and Epilepsy consultant at the appointment. Violet was diagnosed with CSWS - Continuous Spike & Wave during Sleep. This is ESES Epilepsy plus regressions, which is exactly what Violet has presented with. New plan is to up the steroids again to 25mg a day for 4 weeks. A new sleep EEG around week 3/4. Steroids will start to be weaned off at week 4 over a further 4-6 week period. Once the new EEG results are in, a decision will be made on next steps with steroids. If they have improved the ESES we may introduce a pulse of steroids once a week which is a very high dose, given once a week. If there hasn’t been improvement we may look at changing the epilepsy medications she is on. Long term we are waiting to be seen by the Complex Motor Disorder Team at the Evelina who work hand in hand with the Complex Epilepsy Team. They will liaise and work together to help Violets seizures and movement issues. Violet has 3 neurologists at the moment but once she is under the CMDT she will have 4! It was discovered the referral that went off in November was filed incorrectly at the Evelina end meaning it wasn’t processed as a referral 🙈 This should be rectified shortly! There are a heap of investigations that will be done. Starting with an MRI and CSF testing. That will hopefully give them a hint of a direction to take in gene panel testing etc. The epilepsy neurologist suspects a rare metabolic or genetic syndrome as does Violets other neurologist we saw last month. Truth is we may undergo all this testing and still have no answers at the end of it. It was a long appointment but she knew what she was talking about and was very frank in her discussions. Something I like in a specialist. We’ll see her again in 6 months or sooner at the Evelina when we will be up there for her MRI or seeing the CMDT. Not having an overarching diagnosis is hard. We’ve reached so many points over the last four years where we thought we’d cracked it. Yet here we are, still looking for answers. #cswsepilepsy #esesepilepsy

I was in floods of happy tears Thursday morning. Violets SEN school have employed their own SALT (speech and language therapist) because county wide we have no provision for the more complex children like Violet. Violet had her initial assessment yesterday with her new SALT and basically blew her away. She made competent choices from a selection of 4. Previously she had been working with and limited to 2. That’s now been scrapped and 4 or more choices will be given. Violet showed time and time again that she can make choices from objects or photos. Violet was very vocal about her choices, especially the ducks. Her TA knew this was because we had been to the park Monday and seen Ducks. When she said this to Violet, Violet was taken back that she understood what she was chatting about 😍 Anyway I digress. The SALT said to the nursery team that Violet is so full of potential, she is clever and gets all the concepts. She believes once V can master keeping her head more still, she will be incredible with eye-gaze technology. They have said there is nothing she can’t do as she grows up. She WILL communicate via advanced technology and they will get her to that point. The staff are all so proud of her and are so thrilled that another professional has seen the potential and how clever Violet is. It’s like a huge breath of fresh air and has filled me with so much happiness and love today. Daddy and Grandad have been reduced to tears hearing this too. It’s finding the specialists that believe in your child and want to get them to their full potential. It’s got me all emotional and I’m in tears again typing this up. This is what we all needed today after the hard times that we are going through. There is a bright future for our V 💜 Amazing new changing mat from @mamashackbaby 🦄🌸🌈💫

We love our wheelchair accessible van ❤️ Lots of seizures and other issues this week which are taking it out of poor Violet. We are seeing her new epilepsy specialist on Friday. So we’ll see what that appointment brings.

We also had a lovely ride along the seafront 🚲💜#burleybeebiketrailer

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