The Story of Lincoln - A Three Year Old Boy with Primary Lymphoedema
PhysioPod® UK Ltd share the story of three year old Lincoln, in order to raise awareness of Primary Lymphoedema, and of DEEP OSCILLATION®, a gentle, pleasant, non-invasive and effective treatment option which is used in several NHS and private clinics and by lymphoedema sufferers at home and abroad, tackling any changes which air travel may have caused.
DEEP OSCILLATION® therapy now forms a firm part of daily routine for 3 year old Lincoln and his family; improving and maintaining the symptoms of his Primary Lymphoedema and improving his mood, with less irritability; enabling him to take part in longer family walks and now wearing 'shop-bought trainers' for the first time ever. A successful trial of the therapy has happily resulted in an investment in the personal unit.
Inevitably, when Lincoln's successful results have been shared by his parents on social media to the parents of other children with Lymphoedema, several questions have been raised, including the availability of the therapy in the NHS.
During a routine 20 week scan Lincoln's parents were informed that their unborn child had a rare condition known as Lymphoedema and were told that medical staff could not determine as to how debilitating this would be and whether he/she would be born with any other disabilities. This was heart rendering for them and their elder daughter Scarlett, nevertheless, they remained optimistic and continued with the pregnancy and on 2nd February 2014, Lincoln was born. Lincoln showed signs of Lymphoedema on both lower limbs but most significantly his feet. Since Lincoln’s birth, they have persistently attended the hospital to be referred to multiple and varying healthcare professionals. It was several months before they knew as to what extent Lincoln’s Lymphoedema would affect him in life and how much it would change their lives as parents. They were told that due to the extent of the swelling on his feet, he may never walk or get to wear a pair of shoes, news again which was soul destroying. In Sept 2016, Lincoln and his family attended the Children’s Lymphaletics Event organised by Denise Hardy and the Children's Lymphoedema Special Interest Group (CLSIG) in Sheffield. It was at the event, they met PhysioPod and learned for the first time about DEEP OSCILLATION®, an effective, non-invasive electrostatic massage tool used in clinic therapist to patient, for parent-to-child treatment and for self-management at home and abroad. In December 2016, the family began a trial of the DEEP OSCILLATION® Personal Sport for Lincoln with impressive results and to their delight, Lincoln happily became involved in self-management. They have now decided to invest in a personal unit, such is the difference it has made to Lincoln's condition and his quality of life. The following is feedback from Lincoln's Mum and Dad, Keylie Thomas & Chris King:
Lincoln getting involved with treatment for Lymphoedema of the lower limbs with the DEEP OSCILLATION® Personal SPORTS
From Mum and Dad..
"Lincoln is 3 years old, he is a very happy, content and articulate little boy with an infectious smile that could melt anyone’s heart. Lincoln has Congenital Lymphoedema of both lower limbs but most significantly his feet. Since Lincoln’s birth we have persistently attended the hospital; it took several months before we knew as to what extent Lincoln’s Lymphoedema would affect him in life and how much it would change our own lives as parents.
A helping hand from Helen Young, Lymphoedema Nurse Consultant
We have been attending St Giles Hospice Lichfield (Lymphoedma clinic) with Lincoln since the age of 1. It is thanks to family and friends that we were told of the clinic and then furthermore introduced to Helen Young, Lincoln’s Lymphoedema nurse. With little to no help from the NHS, we were grateful of the help we were, and continue to receive, from Helen, she has been an invaluable part to Lincoln’s life over the past two years. It is thanks to Helen being able to demonstrate the correct technique of manual lymphatic drainage (MLD) to us, that when Lincoln turned two, he was sized and fitted for compression garments that aid in preventing further swelling to Lincolns feet and lower limbs. Helen also got in touch with Children's Physiotherapy which enabled Lincoln to have shoes made for him, so as he became able to walk, unaided at 22 months, he could do so freely outside. This provided us with the peace of mind that he had correctly fitted shoes which included a pair of little blue boots, which he adores and is very proud of; especially with his customised laces. Lincoln has regular routine follow-up appointments at the clinic, where he is regularly sized for new garments and shoes.
Proud parents - From being told he may not walk, he runs!
Lincoln achieved and conquered an enormous milestone by taking steps and walking unaided at the age of 22 months
Something we relish each and everyday, as extremely proud parents, is that he doesn’t walk, he runs! This I must add is significantly down to the amazing unique individual that Lincoln has become. He is an immensely happy and joyful little man who never gives up and always keep going. Lincoln achieved and conquered an enormous milestone by taking steps and walking unaided at the age of 22 months, something we never could of imagined and couldn’t be prouder of him for, this unfortunately doesn’t give him the ability to walk as you and I would or do, he becomes tired and his legs swell massively, if he tries to be the enthusiastic athletic little three year old he aspires to be, meaning that the next day he’s often uncomfortable irritable and swollen and as much as we try to help by doing the MLD, we cannot achieve what we truly hope for.
Attending Lymphaletics 2016:
A Magical Event For Families Living With Lymphoedema
Organised by The Children’s Lymphoedema Special Interest Group (CLSIG) - pictured above the volunteers at the event
In the late Summer of 2016, we attended a very well-organised event called Lymphaletics, organised by the team above for children and teenagers with Lymphoedema and their families to soclalise, have some fun in the organsed sports events, learn about the latest new, non-invasive developments to help manage Lymphoedema and the children watched some amazing magic and had a disco dance. This was the third National ‘Lymphaletics Day’ and around a hundred families with children suffering from Lymphoedema from around the UK came to the Concord Sports Centre in Sheffield to take part. We found it to be a a positive experience in a very supportive environment. It was at this great event, that we first met the very helpful Denise Hardy (second in from left). As well as providing direct care and support, the CLSIG help to promote awareness of Lymphoedema, promote the provision of effective services and ensure that patients and families of children with the condition, are provided with the help and information that they need. Until recently services have only been available for adults, but there are now some clinics around the country that specifically provide treatment for children
The DEEP OSCILLATION® Personal SPORTS
We saw the PhysioPod, above, being used for demonstration purposes at Lymphaletics and we were amazed at the potential benefits of what this machine could do; we returned home with a wave of enthusiasm. It is because of this enthusiasm and hope, we asked Helen if she could help with sourcing the machine for a period to trial it. Thankfully Helen, who has been nothing but a shining star to us, very kindly helped us get in touch with Denise Hardy, again who was extremely kind and forwarded our details on to Julie Soroczyn, the Managing Director of PhysioPod, who to our great delight, allowed us to have a unit on a trial basis. We could never be more grateful of the pure compassion and thought that these three individual women have shown to our family in the past few months. There are we have learnt, very few people or clinics that use this great machine on young children, especially those as young as Lincoln, yet it is very safe to do so, providing that there are no contraindication. When Julie said she had a machine that she would be able to loan to us for a short period of time we were so grateful that we had been lucky enough to be given this great opportunity.
Using the DEEP OSCILLATION Personal Sports (we call it PhysioPod)
The machine comes with vinyl gloves, small applicators and larger applicators for application. However, we found that using the larger applicator works well for us, as it allows Lincoln to hold the smaller applicator and mimic what we are doing. At only three years old, it’s hard keeping him still and interested for a long period; so, encouraged with his enthusiasm, we allowed him to have ago with the smaller hand held applicator and now we have quality daily time with Lincoln holding one applicator and Chris or I with the larger one, using circular movements. We have found the best time for using the machine is in the evening following bath time, when Lincoln is at his most relaxed and will happily sit down and we can use the machine for the set period required. We have become fully committed to this machine and as mentioned, it has become a very big part of our daily routine.
The Benefits and Results: 1.50 cm Volume Reduction in both feet in 6 weeks & a less irritable Lincoln..
We have had this phenomenal machine, we call it phenomenal. as we truly believe since December that it is! In January, Lincoln went back to St Giles Hospice for a routine appointment, measurements for new compression garments and shoes, as with any young child, his feet are forever growing. It is here that we learnt the true benefit of this machine, an enormous 1.5 cm difference in his measurements since those taken in December. We were completely overwhelmed and somewhat amazed at the difference. We were hopeful that there would be a difference on his measurements, because we as parents could see a change in Lincoln’s feet and were experiencing better days, in that we mean less frequent days where Lincoln would be irritable because his feet ached from walking too much the day before.
From Orthotic Custom Made Boots to Shop Bought Trainers
Lincoln has always been reliant on the use of orthotic custom made boots as we have never been able to successfully find a shoe that would fit Lincoln’s feet; this has meant that even in the summer, Lincoln would only have these boots, as opposed to a small pair of sandals or a pair of trainers to wear with his footie kit. Over the Christmas period, we did what every other parent takes for granted, we walked into a shoe store and sat down with our little boy (as we had done with our daughter before and what most parents take for granted) and chose a pair of shoes that fit him, that he can wear comfortably. Although these shoes are velcro, it is still amazing for us to see him wearing something that allows Lincoln to be just like his peers. We were kindly given an opportunity to have an extension with the machine, so we have now had this machine for 10 weeks and in the time we have had using it, we feel able to say that this is a machine that is extremely beneficial to young children suffering from Lymphoedema at times that allow the child to relax in their own surroundings.
Having this machine has given us hope, we are yet again optimistic that Lincoln could indeed have as much of a normal life as possible, something we can only aspire for him. After posting on a social media site about our great results and how having it at home, where Lincolns is most relaxed, has made such a difference to his swelling, the feedback we have received is just as we assumed it would be, parents would love to have the chance to trial this on their child, but the financial burden of such a machine is not always in reach when having to live our everyday lives. The questions most parents asked are below:
1 Why didn't we know about the DEEP OSCILLATION® Personal SPORTS?
2 Why has the NHS not been here to support us and provide us with this equipment?
3 Why can't we attend local clinics where treatments can be done? (PhysioPod register shows where NHS Lymphoedema Clinics are using)
4 Why are we, as a collective, having to seek alternative ways of receiving help, such as actively having to find Helen, as we were neither informed or given the opportunity for Lincoln to attend such a clinic?
Is this because when told you can’t reach a goal such as walking, it is just okay to ignore those of us that continue to strive for more? We make this point, as again, we have had to use our own initiative to get a trial of this machine; we thank those involved for this opportunity, as the difference in a mere six weeks it has made is amazing.
5 Why dont't the NHS take the time to perform a study on the effects of this machine? We are optimistic that they too would see the results that we and others have.
6. The NHS need to see that children with Lymphoedema need to be given every opportunity to live as normal life as possible and with this machine, we are doing just that, such as having more family walks and taking our son to have a pair of shoes fitted. This condition is lifelong for Lincoln but it doesn’t always have to be so restricting, if we were given the right help, support and guidance from our local NHS Trust.
We are so determined to give Lincoln all that we can, he has so many hurdles to face in the years to come and there are still so many unanswered questions of what comes next for this little man, but if there is one thing we know is that we love, cherish and adore every moment we have with Lincoln and are grateful for any help we will receive. As a family, we could only wish for Lincolns condition to get better and
hope that as he grows he can achieve so much more, but this
unfortunately is beyond our personal capabilities."
All pictures are published with the express permission of Chris King and Keylie Thomas
The following are provided, with thanks, from BLS