Pages on this website she has written, edited or contributed to
- An insulin pump for Sasha - A look back on the journey to get a pump for Sasha
A biography of Jackie Jacombs
I have always maintained more than a passing interest in Type 1 diabetes, since one of my school friends was diagnosed with this condition at secondary school. I realise now how little I understood about the condition and its treatment. When one of my 4-year-old, identical twin daughters was diagnosed with Type 1 diabetes in 1999, it was a big shock. Not only the diagnosis itself of course, but to find out just how difficult the condition was to control.
The myths - good control is easy!
We were told that basically all we needed to do to keep Sasha healthy was to keep good blood sugar control. One was led to expect this would be fairly easy and simple if you did what the clinic told you to do. All you had to do was to give the correct amount of insulin and the correct amount of food. Once you had things stabilised that was it! I soon learned after 6 months that there was nothing easy about it at all! We are still waiting for the stability!
A normal life? ...ambushed by reality
We were also told that Sasha should be able to lead a “normal” life. However, normal children don’t have to have their blood glucose checked several times a day and sometimes during the night and have to eat at the same time everyday and have injections. Normal children don’t have to worry when they go for tea at a friend’s house whether the meal will be served on time, or whether there will be “diet” drinks. They don’t have to worry about going hypo in the park or playing football. They don’t have to carry emergency supplies of glucose tablets, insulin pens etc. There are no days off from diabetes - it’s a 24 hours a day, 365 days a year effort.
There is the dilemma too, that if you keep the blood glucose levels as close to normal as possible, then the risk of hypos increases. Then, by far the most frustrating thing, is that you can do everything right and still get BG level readings that you can’t explain!
No support groups
When Sasha was diagnosed there was no local parents’ support group, or anywhere to go to meet children with diabetes of the same age as Sasha. No one to talk to about the feelings that one has when a child is diagnosed with a life-long chronic condition. No one else who understands the anxiety and uncertainties that occur daily when you are raising a child with diabetes.
Suffer the little children
Sasha was having problems at school. The infant school refused to do blood tests and the blood glucose meters available at this time required a large, hanging drop of blood, the correct size, which needed to be carefully placed exactly on the target area of the electrode strip. Sasha was too young to be able to do this on her own and would have been unable to interpret the results of the tests and to know what to do, she was only 4 years old. She wrote numbers and letters back to front still and couldn’t read. The diabetes clinic didn’t really support testing in school either at this time. So what was happening, was that Sasha, who could not tell the difference between feeling high or being hypo, would just tell the teacher that she felt dizzy and someone would treat the hypo with orange juice or glucose tablets. As a result of this Sasha would frequently come out of school with her BG level over 16 mmol/L (300 mg/dL). When this began happening more and more frequently, almost every day, I decided to ask the school to telephone me and then I would go up to the school and test Sasha to see what was going on. If the situation became worse, or it appeared to be a “real hypo” the school had instructions to go ahead and treat. I was going into school at least once a day and at some point, twice a day. I was unable to pursue a job because I would have had to keep taking time off work. On some occasions when I did go into school, Sasha’s BG would be higher than 11 mmol/L, which made Sasha feel unwell and she would sometimes need an injection to bring the levels down and on other days she would be low. Some days I would get a phone call and go into school to check, only to find the blood sugars in the normal range. She just couldn’t tell most of the time.
The new meters available these days would have probably enabled Sasha to do her own tests at a younger age. In the end, we spent the Easter holidays encouraging Sasha to do all her own BG checks and we also typed a list of what actions to take, according to the blood glucose levels. Sasha couldn’t read well enough at this time, so someone had to read the information sheets and tell her what to do. All through the infant school Sasha had to be taken by the “first aider” to the kitchen to do the BG test and sort out the treatment needed. The classroom aide often had to be fetched from another building. It all seemed so unsatisfactory and I wondered how other parents managed.
There were incidences of forgotten/missed snacks, supply teachers with no understanding of diabetes, and occasionally rude unsympathetic teachers who didn’t understand diabetes and didn’t want to. I just wondered if I was the only one who was having these problems. Perhaps there were other parents out there going through exactly the same thing.
Setting up a local support network
I set about tying to set up a local parents’ group for children with diabetes, which wasn’t easy with little support from the clinic. The support group still meet regularly, just a small group.
Then later I joined the USA based Children with Diabetes parents’ mailing list. There was only the US based parents’ list at this time, now there are mailing lists for other countries.
Online email support lists
This was the first time I had spoken to so many parents dealing with diabetes and it was an eye opener to find out how diabetes was dealt with in the US. Sasha was on Mixtard 30 and none of the US parents even knew what it was. In the US, tight control is considered the best way to treat Type 1 diabetes and pre mixed insulin was usually only given to adults with type 2. Most parents who used syringes mixed the long and short acting insulin to suit their child.
I also joined Diabetes Insight mailing support list and then the UK Insulin Pumpers’ mailing list. At this time there were only a few parents of children with diabetes and only two of the children were using insulin pumps.
I found quite a few UK parents of children with diabetes posting to open forums like diabetes newsgroups or message boards which were unmoderated groups, full of spam, porn links, get-rich-quick mails and misinformation. Not very good!
There was no online mailing list that really dealt with the day-to-day problems of families living in the UK. The US parents’ list was good, but they used very different insulin regimens, they mostly used syringes and not insulin pens. The laws covering care in schools were quite different and one of the differences, which prevented quick, fluent email conversations between the US parents and myself was the method of BG measurements. The biggest difference however, was the use of Insulin pumps. These were much less commonly used in the UK and very few children in the UK had insulin pumps. Parents could not understand why we couldn’t get a pump for Sasha.
Lack of support and information for UK parents
I was appalled at the lack of care for children with diabetes in schools in the UK. It appeared that diabetes should be “left at home”. Many parents had little, or no support at school, while in other areas the schools were excellent. Many parents didn’t know anything about other insulin regimens or anything about insulin pumps or which hospitals would support them even if they wanted a pump for their child. Most clinics didn’t have time for on- going education, or to just talk and listen to parents and children. One of the other things I wanted to deal with was the lack of information available to parents about insulin pumps. Many consultants just “didn’t want to go there”. Too much work, not enough money or resources to support new pumpers, ignorance, who knows! Sasha’s consultant told us that pumps were dangerous. (Since that time he has changed his mind and has made a referral for another child to try pump therapy at a different hospital). Many parents didn’t know anything about pumps or using basal bolus regimens (MDI) or carb counting. These things were not discussed at the clinic and at our clinic we were discouraged from discussing carb counting and Insulin pumps. However one DSN, who had seen how life had changed for an adult pumper was convinced that a pump would help Sasha.
The UK CWD mailing list is born
I wanted to be able to communicate with other parents in the UK who were raising children with diabetes, I wanted to share ideas and challenges with other parents in the same situation. I wanted to have somewhere that parents could go to let off steam and talk to people who knew just what they were going through. I wanted to help parents find out about other insulin regimens and insulin pumps, talk and exchange ideas about how we managed.
One day, I emailed Jeff Hitchcock, who founded the Children with Diabetes website and the CWD foundation and asked if he could set up a mailing list for families of children with Type 1 diabetes living in the UK. He said yes, he would, if I would manage/moderate the UK list. So the UK Children with Diabetes list was set up in December 2002 and it has taken over my life!!
There are over 118 parents subscribed to the UK CWD list now, all supporting each other. New members find us as more and more people have got Internet access. Many parents are also members of both UK Insulin Pumpers mailing list and the UK CWD list. These lists are very helpful in providing information and support for families whether they use biphasic insulin regimes, basal/bolus regimes, or insulin pumps. Indeed, many children start off with biphasic insulin regimes like Mixtards or Humalog mix 25, but if this is not achieving good control, then the parents may consider asking to move on to a basal/bolus regimen after speaking to other parents and some parents want to find out about insulin pumps. I also get a constant steam of people writing off list and from people who have found my email address, which is on a related link on DUK. Sometimes these off list queries take several hours to sort out.
How the list has changed my life
Setting up the CWD list has been a very rewarding experience. I learn a lot from other parents and I hope that I help some of them too. In the early weeks after the initial diagnosis the clinics often provide the necessary support, but later, months down the line, you are hit by reality that this is it. Diabetes is here to stay. Parents care very much for their children and usually go through a period of grief and sadness. There is a deep sense of loss for the healthy child that you had and the expectations that you had for your child before diabetes came to stay. It is no less difficult for a parent of a teenager who is diagnosed with diabetes; indeed it can sometimes be more difficult. When a teenager is diagnosed, most often the teenager takes responsibility from the outset, blood tests, injections, diet etc and the parents are left as bystanders with little direct involvement. This may sound easier, but in many ways it isn’t, because the involvement with the diabetes clinic will probably be very limited. Parents of teenagers sometime have a very difficult time emotionally.
Friends for life
Over the years since the list was set up I have met some amazing parents and children and had a lot of help and support from other parents. Indeed, without the help and support we may not have had the strength to continue the fight to get Sasha a pump. I learn new things nearly every day from parents and participants of the mailing lists that I visit. I would like to think that I in turn have also helped other parents.
The first thing I do in the morning is to power up the computer and download the emails. Then I have a cup of tea.
What did I do before diabetes came along
In a previous life I used to belong to a photography club and developed, processed and printed my own black and white photos. I won quite a few competitions and certificates for some of my work and sold a few prints.
My first computer was initially purchased to use for processing and manipulating digital images and scanning old black and white and colour negatives. I found it very hard to use the computer and Terry my husband found me a poor pupil! Shortly after, Sasha was diagnosed with diabetes and that took over my spare time for a while. Then I took some basic computer courses so that I could do digital photography, but as soon as I learnt to use the Internet I spent hours looking for articles about diabetes and then found the various support lists. Since then I have had little time for photography but one day I have promised myself that I will.
- My children
- Type 1 diabetes
- Making spelling mistakes
- Reading medical blogs, and other Brit blogs
- Finding out how things work
- Interior design
TV Programmes that I like
Documentaries, Medical, Science, History, Dramas, Sopranos (The TV programme about the Mafia) Bodies, Crime dramas, Comedy dramas.
Books I like
- Ragnar Hanas, Type 1 diabetes in children, adolescents and young adults
- John Walsh et al Using Insulin and Pumping Insulin
- Louis de Bernieres Captain Corelli's Mandolin
- Pat Barker’s Regeneration trilogy
- Snow Falling on Cedars David Guterson
- The Shipping News by E. Annie Proulx
- Crime and Detective novels
- Life Story (Jeff Goldblum)
- Watson and Crick’s race to find the structure of DNA
- Touching the Void
- Dead Poets Society
- Toy Story
- Truman Show
- Good Will Hunting
- Shakespeare in Love
- Truly, Madly, Deeply
- Beautiful Mind
- Rabbit Proof Fence
- The Conversation
- Shawshank Redemption
- Lorenzo’s Oil
- Green Mile
- Deer Hunter
- English Patient;
- The God Father
Music I like
- Music by John Tavener
- Jan Garbarek, collaboration with the Hilliard Ensemble in 1993 a vocal quartet singing Renaissance music
- Cold Play
- Damien Rice
- Kaiser Chiefs
- Franz Ferdinand
- Arctic Monkeys
- James Blunt
- Snow Patrol
- The latest CD I bought was Arctic Monkeys!
Send a message to Jackie Jacombs
You can email Jackie Jacombs at firstname.lastname@example.org
Created: March 2001; Last updated: Wednesday 19 July 2006