Can you help my frustration?

Can you help my frustration?

96 replies to this topic.
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Posted on 16 December 2011
#61

Cannot stress how important it is to obtain a SUI report following a problem before/during & after birth where you have a gut feeling something went wrong and/or you feel that questions you have asked are not being addressed - why has my baby been diagnosed with CP what went wrong?

(I have just received my SUI report and I am shocked/devistated at the catalogue of errors made by various departments/health care professionals and staff - The SUI report has timed events of what whent wrong and all I can do now is pass this onto the professionals)

Please follow the below link and summary - I'm not saying it's for everyone, but the report will draw a line around a lot of unanswered question surrounding you/baby(s) care whilst "in the care" of the Hospital.

http://www.london.nhs.uk/webfiles/Corporate/Serious%20incidents/NHSL%20S...

Serious incidents in healthcare are uncommon but when they occur the National Health Service
(NHS) has a responsibility to ensure there are systematic measures in place for safeguarding
people, property, NHS resources and reputation. This includes responsibility to learn from these
incidents to minimise the risk of them happening again1.NHS London’s role relating to serious incidents is to ensure that the appropriate management is in place across the system.In order to provide national consistency in the definition of a serious incident and clear roles,responsibilities and timescales for completing Serious Incident investigations, the National PatientSafety Agency (NPSA) launched the first release of a National Framework for Reporting andLearning from Serious Incidents Requiring Investigation in March 2010.

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Posted on 22 December 2011
#62

SUI report has been passed on to my medical negligence solicitor and will have their report/finding in the New year.

My baby's fits have started to get worse again where both arms flinch in time, and noticed the eyes as well. Was initially told to up the medication, however now they are saying they will "change" *** medication. I am apprehensive as the professionals are saying that the medication they want to put my baby on has greater side effects (kidney stones, drowsy) and that it should be administered at night time - Staying positive in that I want my baby staying home for Christmas not back in hospital.

My baby had physio on Monday and as mentioned (with a struggle) will continue weekly sessions until further notice (once every 15 days was NOT acceptable at this time)

Whishing everyone a Merry Christmas & Happy New year xx

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Posted on 23 December 2011
#63

((Very disturbing to read)) SUI solicitors findings - I have been contact by my medical negligence solicitor and they have described the Hospitals SUI report as a “Very disturbing to read”

In their opinion there are a catalogue of errors and a specific time line that caused my baby’s insult and that if acted upon sooner with the current supportive documentation my baby would have been “NORMAL”

They are now instructing area specific medical professionals to back up their current findings, so todate nothings yet proven beyond doubt.

I have hit a brick wall, devastated and a whole lot of other emotions rushing through my mind. I researched and spent weeks investigating what solicitor I wanted to use and I am confident of their findings and a long road to travel and as I have said many times before it’s not for everyone but I am determined to get the upmost best for my baby and this is the only way (other than the natural mothers love) to get the best. I know what some are thinking but stop – any award is paid into the courts and managed by them for my baby needs today and for the rest of *** life.

I want every mother that has any doubt to obtain this report and then make your decision.

I’m not going to make any further entries this year as I now need my personal time with my family – I wish you all a very Merry Christmas xxx

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Posted on 23 December 2011
#64

Mrsfox. I hope you can have a quiet and happy time this Christmas with your baby and family. Everyone who has read your harrowing story will wish you well. You are absolutely right to fight for everything you can for your baby and so this does not happen to any other mother and baby. It is hard enough to have a disabled child but to know it could have been prevented must be devastating. You are right to take a break and I hope you can find some peace over the coming months with things settling down for you. The past 8 months or so would break many people, so I hope you stay as strong as you have been so far.

Best wishes
Kate
xxx

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Posted on 3 January 2012
#65

Dear Kate,

Thank you for you kind words - Christmas and New year was a very great time for all the family sprinkled with some very sad times.

My baby is now taking nine medications a day and the last change has not made any difference. Still flinches both, legs and eyes in sequence and for appox 2 to 5 seconds and up to appox 10 to 15 times in 24hrs. Contacted the consultant and again told that the new drug can be increased however needs to increase over a short period of time. All sounds too familiar and again not happy but have to follow what the professional are telling me. My baby has been on the new medication for a while now and I confident it is not working.

My baby continues to have weekly physio, sensory and now I am taking *** to hydrotherapy classes.

The solicitors are instructing very skilled professionals to investigate and report on the birth which will take months to compile. In the near future they will travel to me and take statements from all the people/family members that was part of the birth (before and up to the day itself)

Whilst all the documents that I could obtain from the hospital it was the NHS SUI report that detailed the key facts required for the solicitor to base his foundations for negligence.

There are three key reasons for pursuing the claim for me personally.

1) To find out what caused my baby to be starved of oxygen (Now confirmed my baby was normal prior to birth)
2) To give my baby the best financial care available now and for the rest of her life (via court fund management application - long battle ahead)
3) To stop any other mum having to go through what I have (to identify what went wrong and provided whatever is required to stop it happening again)

Regards

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Posted on 3 January 2012
#66

Hello. If you think your baby is still fitting ask them to admit him to get them under control. They can tell if they are fits by doing another EEG and looking at the brain activity. I don't know much about fits but I can't understand why they are not making more effort to control them under supervision in hospital!

How is your little one doing now? I am glad he is getting more services. We found hydro very helpful. Does he manage to feed OK and is he putting on weight? My little grandson is going to have a gastrostomy soon because he lost weight when he started nursery - full of bugs, colds, vomiting you name it! We are upset with this but accept he needs more calories than he can take in orally, he just doesnt seem to like food much, apart from chocolate. Its unlikely to be permanent, but its at a point now where his gangly skinny little legs look too thin to hold him up. We hope it will be a positive move in the long run but again hospitals!!! aarrrgggghhhh.

Kate xx

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Posted on 5 January 2012
#67

Hi Kate

Manages to feed OK'ish however I'm told this may change (could get a lot better and/or worse) but like your grandson finds it hard to put on weight, I would say just below what they call average. Liking chocolate get my thumbs up!

Regards

Hospital appointment this Friday for my baby to see the eye specialist.

Last night's "One born every minute" was very sad for me as it brought back some very sad memories (Why watch it? OK yes but has some very nice moments too)

At least for that couple the Midwife inserted the tube to clear the airway, mine just waited for the crash team to enter.

In the Hospital notes it was documented by the Dr of the crash team that he noticed that that particular required piece of equipment was still in it's wrapper on arrival!

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Posted on 20 January 2012
#68

My baby continues to fit and has now become more aggressive again!! appox 10 times a day and displays a firm flinch in *** right arm and into the hand, left arm not as bad, and both eyes blink in a rhythm tic way. The doctor has said that the medication *** is on has four stages and initially was on stage one, now the medication has been upgraded yet again and on stage three.

Have taken my baby to Physio, swimming, Sensory classes, Hydro theorpy and soon to brain stream (cost about £800 but told well worth it - good old grandparents)

Finally had my baby’s chair assessment and told it will be appox 2 weeks for delivery.

Have sent all the required documents to my solicitor and the next step in the mountain is appox 6 weeks. They have provided me the percentage rate of a successful claim against the NHS trust and what caused my baby’s insult. I have received very good grounded statements from my solicitor with very clear and precise information.

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Posted on 31 January 2012
#69

mrs fox

i hope you are well every time i read a new comment my heart beats so fast.

i cannot start to imagine what you are/have been going through and i just wanted you to know we are rooting for you and stay strong. The nhs has let you and your baby down dont give up x

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Posted on 4 February 2012
#70

Thanks for the information

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Posted on 28 February 2012
#71

Hello Everyone – Thank you for your continued support and messages, much appreciated. I do hope that aside my most upmost priority (my baby) some of you reading my story may pull from the negligence side of things if you have any doubt that someone else is to blame.

Let me reiterate, my babies love, health and progressive improvements are my absolute priority and would walk the earth and do absolutely anything for ***. My next and (2nd) thought is would I do this with the standard amount of money, and provide the standard level of care my money would buy , or would I like to try and achieve securing my babies financial security for the rest of *** life. For me and (not for everyone) I have made my choice and progressing a medical negligence claim. Aside – watching Location, Location, Location the other evening where a young lady purchased her dream (INVESTMENT) home of her own made me fell so proud of her. Turning 18 and having the funds to support her care for life meant so much to me – For me when I pass away I know that my child can continue to live *** life to full capacity, and not, in my written opinion rely on second best/bad care – This young lady can afford to buy the best.

My baby continues to fit, and *** medication has been changed twice since my last entry. We have been told to no longer feed small solids as they need to investigate more with regards to swallowing, tongue and mouth muscle movement. They want to place my baby on a liquid drink. Well *** will continue with ** liquid drink but will also continue to take small solids. I am lucky as *** Grandparents are paying for Brain Wave and this has been booked for May. Finally last week someone came around and set up *** bumble bee chair. It’s horrible as *** had to have *** feet strapped into these shoe type things, and strapped in around the belly, and a headrest. I know this is the best way forward but to me the apparatus so looks disabled.

Yesterday I was told that my baby needs another EEG – I’ve thought *** needed this weeks ago, but only told yesterday this needs to be done again. The flinches as I call them have over the last two/three weeks have been more aggressive, continues to flinch both arms, eyes, and legs on occasions. *** remains conscious but with a slight look that *** is not quiet with us, hard to explain, but just not with it. *** eyes still look boss eyed at times, sometimes more often than others, and her neck still drops uncontrolled. I notice that *** often really kicks both legs like *** is riding a bike, so fast and sharp that sometimes you can hear *** bones click. My baby still does not like to sit in *** chair, or car travel chair, as *** continues to stretch from head to toe, and it is hard to place *** in the sitting position.

I continue to attend all the classes available to me and my baby, however I am returning to work today three days a week and long hours to pay the bills. I am absolutely devastated leaving my baby but I know this is what I have to do. This is not by choice – I just cannot wait to get home.

I have recently been told by my solicitor that we have been successful in obtaining Legal Aid.

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Posted on 2 March 2012
#72

19th of March my baby attends *** 4th EEG and on the same day my legal team are traveling down to me for a three hour meeting.

More tests are required as there is further concern with regards to my babys feeding. Still not putting on much weight and told the worst case would be a feeding tube.

Have asked all the NHS medical team since birth "How long was my baby starved of Oxygen?" and still to this day no one has provided me with the answer. My legal team has told me that the MRI scan and other key factors would show/provide this answer. I'm angry and there are still many unanswered questions that the NHS are not telling me and or do not want me to know - I'm so glad I have a legal team as (not for all) I want to fully understand why my normal baby was born with Quad CP.

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Posted on 12 March 2012
#73

It is natural to want to avoid conflict or accusation and to celebrate life rather than focus on its negatives. So why bring a claim? The reality is that State provision to meet the special needs that people with cerebral palsy or brain injury have is insuffi cient in the UK for those needs to be met properly.

This is where a cerebral palsy claim can provide a lifeline and genuine financial security for life both for the child and the supporting family or carer. Bringing a compensation claim can help individuals to enjoy life to the fullest extent possible.

Cerebral palsy claims that succeed typically arise as a result of mistakes made during the pregnancy and birth process. Children who are distressed at birth and who were perfectly healthy whilst in
the womb can suffer a birth injury and acquire permanent brain injury from the birth process itself. However, cerebral palsy can also be caused as a result of errors when the child is very young
such as in a special care baby unit or a failure to treat congenital disorders, infection, jaundice or meningitis.

If it is likely that the brain injury originates from medical negligence then the compensation that the child will be entitled to will be very substantial. Cerebral palsy can be very serious and is a
permanent disability. The law requires those responsible to provide sufficient funds to cover the individual’s needs and care going forward for the rest of their life. Claims therefore often run into
millions of pounds. This is not a windfall. It simply covers the considerable costs associated with catering for the special needs arising from a child with cerebral palsy including care, accommodation,
lost earnings and therapy.

Cerebral Palsy – the compensation
In the event of a successful cerebral palsy claim the Court will order compensation to cover thechild’s pain and suffering throughout her/his life. It will also compensate the parents of the child personally for the care given over and above the needs of an able child. This might take the form of lost earnings or else the calculation of the many waking and sleeping hours of care provided at home.

Managing your compensation

Once compensation is awarded from a medical negligence claim then a specialised trust can be set up mainly to protect means tested benefi ts. However, there are many other reasons including:
Control f • uture ownership and use - By specifying that property and other assets must be kept within the family and/or only used in
particular ways. Assets may be given to charitable organisations for stipulated uses - Through directing how an asset including cash, shares, a house or a family business is used even after it has been sold.
• Save tax
- Trusts are treated separately for tax purposes and are assessed independently for inheritance
tax, capital gains tax and income tax
• Protect capital
- Avoiding the loss of assets if a benefi ciary has family or financial problems
- Helping a disabled benefi ciary look after property or assets
- Providing guidance to a young or vulnerable benefi ciary in looking after their inheritance.

In addition to setting up these specialised compensation trusts support and advice is provided where the award is managed by the Court of Protection. Typically, this would be when the child did
not have mental capacity and was a patient of the Court.

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Posted on 13 March 2012
#74

Yesterday my baby was fitted with supports that fit on both *** hands and strap around the forearms. Designed so to keep the fingers stretched out and the thumb from trying to be clasped by a clench fist. Nothing will ever be nice, but they are colourful and todate to wear mainly at night and periods during the day.

EEG takes place on the 19th March.

Waiting to learn how they medical professionals what to deal with how my baby eats/swallows.

Still continues to fit. (continue the medication)

19th March Legal team visiting me at my home address.

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Posted on 19 March 2012
#75

On the **27/09/2011 I made an entry as on that day I discussed with St Thomas hospital the fact that I thought my baby was displaying Spasm type seizures/fits and I was re-assured that they were not. I remember challenging the Neurologists and again said to me my baby is displaying spasm seizures/fits. Again No.

**27/09/2011 - Have been told that my baby's fits are fits and not spasm's but they will be booking in another EEG (urgent) to get another reading. This was great news as spasm's are a lot harder to manage, and I am so worried about "West Syndrome" now it turns out that they could turn in to spasm's but at this stage they are not.

From the 27/09/2011 I have on many visits mentioned my baby’s seizures/fits and said that I thought they were Spasm’s but all the time I have been told No (This is a key topic as you know because most updates I mention the fact my baby continues to fit and told to up the medicine, change the medicine, and have 9 times out of 10 mentioned are these spasm's? etc)

Today, my baby, and I attended the appointment, and had *** EEG and meeting with the consultant. I have now been told that my baby DOES HAVE SPASM SEIZURES. For weeks and weeks I have told the professional (doctors, consultants, etc) that I thought this was the case – Again just feel so let down.

The consultant has given my baby new medication for the spasm’s to take immediately (no weaning in stage) and that there are four stages to this medication up to .5 If at point 5 nothing improves, then my baby has to stay in hospital for three days to be given steroid injections, then every other day a trip to the hospital to have more injections. Have been told not to look that far ahead! How can you not...!!!

My baby’s growth/weight is still being monitored, and whilst *** looks very healthy the consultant has said there is more in the background that we need to keep a close eye on, meaning that the outcome could be a feeding tube being fitted.

I asked the consultant how long was my baby starved of oxygen, and his reply was “ A prolong starvation of over 30 minuets”

A epilepsy nurse also attended part of the consultation and she has given me her telephone number and said I could call her at anytime if I had any questions.

The EEG was carried out and I am still waiting on the results.

Leaving to come home soon where I have an appointment with my medical negligence solicitor

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Posted on 20 March 2012
#76

Hi Mrs Fox..... I dont know if I can help answer any of what your going through.... I have a daughter whos ten in May.... we were told she wouldnt even make birth, so, she really is a miracle!! Her diagnosis while I was pregnant was severe hydrocephalus that had resulted in a skull deformity and brain damage. When I was 24 weeks pregnant a leading specialist told me if she survived, she would be 'a vegetable'..... When she was born within one day she had another problem diagnosed, as she grew it was another and another.... she was born flat and it took eight minutes to rescusitate her. For the first nine weeks of her life she was so ill at one point I signed DNR forms. She wasnt expected to do anything. I took her home at ten weeks and I loved her and stimulated her and researched constantly. When she was eight months old I was having luch with my mum when she started to have a seizure... starting in her left arm and travelling throughout her body.... she was tried on medication after medication, she is now on a combination of five medications and one emergency medication. But, her seizures arent controlled, she has statused once and has over twenty kinds of seizures.... she has between five and fifty seizures a day. She was diagnosed with CP at two months old, normally in the UK they wait until at least 2 years of age before a diagnosis.
The good news.... Megan learned to sit up with support at fifteen months old, sit alone at two years... crawl at three.... walk with a frame at five... walk unaided at seven.... dance at eight!!
She learned to talk at a year old.... she now sings almost all the time!
She goes to a special needs school and has hundreds of friends, she even has a facebook page!
Her ambition is to marry all of JLS.....
She is a beam of sunshine.
Its not easy, she can be very demanding and I spend my life trying to keep her out of hospital, she has to be watched 24/7 and has to wear a protective helmet all the time.
But, when she comes out of school laughing and shouting 'hooble, toodle do' to her friends, when she says 'your my best friend mummy', when she kisses me..... everything is worth it.....
If you want to talk, vent or ask anything.... please contact me.

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Posted on 26 March 2012
#77

Dear Lioness,

Many thanks for your truly amazing story. As I read your story the sunshine sure did beam off the page. I am so happy that your princess is progressing well and that she still has a few JLS band members left to marry. Understanding your steps regarding the time frame for Megan to do lets say “the norm” has adjusted my way of thinking (sit alone at two) Thank you for your kind words re contact – may be in touch soon..

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Posted on 4 April 2012
#78

The latest EEG results have shown that there has not been any changes to be concerned and when asked should a MRI be carried out, advised that this would not be of any further use, even at the age of 2 years (my baby will be 1 in May this year) I am very pleased with the EEG, but having no confidence in the Trust and/or being sceptical are they basically giving up on my baby.

Although the medication was changed recently and started immediately (no weaning off) my baby continues to fit. The fits are still frequent and are more now that *** seems to disappear to *** own world and then back again. The eyes still flinch in sequence with *** arms and hands. What has changed is that the star fit has stopped and the distress of them for *** removed. The fits have been continuous for many months now, and as much as I press the professionals nothing has changed. Same old words “got to find the right combination for your child”
I have also noticed that *** is becoming much stiffer than before and for longer periods.
Continues to wear the arm to hand brackets at night and occasionally during the day. They are also going to make some sponge attachments for *** thumbs. A special mattress has also been ordered.

Looking forward to attend Brain Wave as they maybe able to add value to my baby's individual circumstances.

I’ve been invited to attend a private school for children with various disabilities soon and a few pupils with various levels of CP. I do not mean this in any offending way, but I need to go so to start understanding the baby to child differences with CP. At the moment my baby is small, and although (very demanding) the problem is small (I know that is contradicting) but as a child of let’s say 5, 6 years of age the differences are large. Look I don’t really know what I am saying, perhaps, no not perhaps, if the truth is known I still have not accepted my baby has a severity of CP and seeing what my baby could become in the near future is killing me. How awful that sounds – but I know I have not accepted the future…yet.

The solicitors have confirmed 100% from their findings that my baby was starved of oxygen during birth for a prolong amount of time. That time was 90 minutes. The midwife and team had all my notes and knew I entered the labour ward with high blood pressure/Pre-eclampsia and there are many facts, but one of them was the fact they did not monitor this. I have been asked to keep a daily diary of all events, from hospital visits, appointments, parking charges, time off work, my baby’s fits, medications, basically everything and this could be for the next few years.

Happy Easer everyone x

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Posted on 4 April 2012
#79

Hello Mrs Fox. I am glad the EEG hasnt shown much change, but sorry your little one still has these fits. My grandson did go through a phase in his first year of having vacant episodes and rolling his eyes up at the same time, only lasting a second or two but 60-100 a day. He did grow out of them in that first year so I hope the same thing will happen for you in the end, or at least get them well controlled.

Things do get gradually better wrt having a disabled child, but the first year or two is incredibly difficult, especially as you have had such a traumatic time, and the knowledge your baby could have been saved from the brain damage. tbh the grieving is something that goes on no matter what, but you just get used to it and see lots of lovely things and progress.

Brainwave is lovely and my grandson goes there every 6 months or so and it really helps to have a plan to work with. Also they can point out where your baby has weaknesses and how to combat them. Elli's trunk is so much stronger now since following brainwaves directions. Have you also looked into Anat Baniel Method? It is a very gentle but effective therapy and can be used alongside conventional physiotherapy. She has just published a book (after 30 years of practice!) called Kids Beyond Limits. If you can read this and think about this therapy, there are practitioners in england. Elli has had this and his movements are becoming freer and more varied. His speech and sleeping became better. The younger ABM is started the better.

Hope things start to improve for you soon.

kate x

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Posted on 16 April 2012
#80

Dear Kate,

Thank you for your comment. I have taken your advise and ordered the book from Amazon and should be with me soon - Again Thank you.

Got a telephone call from the hospital, and they are now sending my baby for an appointment to see if *** should have a tube fitted so that *** can feed this way. I am dreading this appointment as I do not want my baby to feed this way.

Still continues to fit and more so now - Contacted the consultant and told to increase the dose yet again.

No further update from the solicitors.

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Posted on 16 April 2012
#81

Hello
I really don't know where you get the mental strength to go on, it all sounds so difficult for you all especially your poor baby. I just wish things would get a bit better and more stable with the little one, you must all be exhausted.

Don't worry about a feeding tube. Do they mean one through the abdominal wall..a PEG?

My grandson had one done in March and we were dreading it and so unhappy that despite all our efforts to get extra calories in and the fact he can eat and swallow safely we just could not get his weight onto the charts. He has a skinny gene! Anyway it took 1/2 an hour and a few days in hospital, but has bounced back really quickly and we are starting the process of building him up with overnight feeds, eating in the day plus top ups through the tube, and extra fluids in the tube as he is a very poor drinker. Of course he goes to nursery and picks up a bug every week, affecting his eating and sometimes causing vomiting, but its not so bad now as he just gets what he needs in the PEG. We hope that when he puts on enough weight and starts to eat more he can have it out, he doesnt need it for medical reasons such as aspirating.

Look on it as a way of taking the stress out of feeding your baby, and also being able to get medications in him without stress and keeping him safe from chest infections. Tubes are not necessarily for always and the way our **** has bounced back has helped us realise it is the only way to help him have more energy and even stability. Its early days, but the op went off smoothly and the wound is nicely healed and easy to manage so don't be afraid and delay it as long as we did. We wish we had done it earlier, but he might have put weight on so we didnt rush it. Unfortunately when he started nursery he caught all the bugs going and lost weight! Thats when we decided to go for the PEG.

Kate xx

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Posted on 18 April 2012
#82

Hello Kate,

Many thanks for your comments.

I'm concerned more so now as I am thinking it is also more of a medical reason as to why my baby will have to be fed through a tube PEG.. My baby always seems to have a chesty aspirating and one of ** medication is to control the reflux. I support you reasons behind the PEG, but hope this is not yet another path we have to go down.
The splints have been made and fitted - a requirement to be worn as often as possible.

I think at this stage it is important for me to say that this is my story and that this is my life and the way I feel. I do not want anyone to detract from this as I know there are people a LOT worse off than me and my baby. (I genuinely understand there are many people with other life threatening and disabilities) Not asking for your acceptance- this is mine and baby’s testimonial.

Kind Regards

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Posted on 21 April 2012
#83

:) Im happy to share my daughters story and glad its given you some hope... feel free to ask anything, hope your little one goes from strength to strength. Stay positive! x

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Posted on 4 May 2012
#84

Dear Lioness - Many thanks for your kind words a may just be intouch for some help and advise - Thank you

Making arrangements for my bubba's 1st birthday - wow that has sure come around fast.

Attended St.Thomas hospital this week, and they have again changed the medication. My baby's fits started to get much more frequent – and still to this day have not stopped. Changed some medication completely, and up the dose on the others.

I am so looking forward to attending “Brain Wave” soon kindly paid for by my baby’s nanny and granddad. I am in two minds about the day but need to be told the good, bad, and ugly. I’m not happy with the Physiotherapy my baby is getting, it all looks so weak and non-productive, just seems to be going through the motions to get to lunch time.

The solicitors have been in touch and they are going to progress with the current information they have. They have said that they would usually instruct medical professional in the field(s) required, however they have said that the SUI report and current information is so damming, and conclusive they do not need to go down this path at this stage.

Have a great BH Weekend
Regards

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Posted on 7 June 2012
#85

Attended Brain Wave for the two days and have to say was a little disappointed. My personal thought was it was a very professional expensive physio therapy training days. All the staff there were very polite, understanding and professional 100% . Would I reccomed Brain Wave, yes but would not book again at that cost. Another angle would have been for me to have hired a personal physio to come to my home, and worked on my baby for appox 14 sessions at 2 hours long.

Since my last update my babies medication to control *** fits have been changed again, however still continues to fit.

Tomorrow, I attend and find out if my baby will need to have a tube fitted (peg)

My baby is still not able to sit up and *** head control remains the same.

No update with regards to the solicitors

Regards

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Posted on 10 June 2012
#86

The hospital visit lasted all morning and they have confirmed that my baby is aspirating and holding the food under the tongue. They have said a peg will not need to be carried out at this stage and have suggested a different feeding method/food. They will monitor progress and have said the situation may not improve and a peg fitted. Very mixed messages and emotions.

The other purpose of the visit was to show our documented records we have kept of our baby's fits and to actually show them the fits. Five NHS staff met with us and have again concluded to change *** medication. Part of the PAN family of drugs now given. (this course started Friday) This morning I am very down as yesterday my baby was very bad and today *** just is not the same, very floppy and not responsive, where has my baby's smile gone, *** is just not all there. I have been told that it can take two weeks to work (well still fitting since Friday and today)

I have to leave my baby tomorrow to go to work tomorrow (no work no pay) and I am really down because I feel I should be with *** The hospital have said to keep a close eye on her for the first few days.

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Posted on 10 June 2012
#87

Sunday - Waiting until 20:00hrs to phone the consultant at the hospital as that is when he starts his shift tonight. Since my baby has woken this morning, *** has now had 56 fits. (this is with the new medication and at the low level!)

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Posted on 11 June 2012
#88

Have now been asked to get my baby straight up to St Thomas Hospital....leaving now

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Spent two days in hospital,
Posted on 21 June 2012
#89

Spent two days in hospital, and the result was to again change the medication and levels. My baby today is back to *** old self giving big smiles, and the fits have reduced but continue. Will my baby have fits all *** life then?

No update from the solicitors, might gic=ve them a call next week...

renacahill's picture
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Hi there. Glad to hear your
Posted on 22 June 2012
#90

Hi there.
Glad to hear your little ones fits are being better controlled and that he is back giving you his lovely smiles :-)))

Hoping things start to get better for you both, take care
Kate
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