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Medicine is a big part of our lives and the lives of many others. Without it many would be lost or struggling to deal with life.
As a baby Roo was on antibiotics nearly every month almost for the first 2 yrs of his life due to recurring infections but thankfully his immune system started to get stronger and the infections reduced dramatically. He has also been on various of other medication to treat some of his symptoms that no matter how many tests he undergoes we cannot get an answer, an overall diagnosis. Instead he has a collection of various symptoms/diagnoses that leave doctors unable to tell us what it means, what the future holds.
But while we wait (& hope) for a overall diagnosis we carry on with our lives, fighting to ensure children like Roo get the support they need. At the moment Roo doesn't need any meds except for sleep related ones.
Those of you who have read my earlier posts when Roo was younger will know that he has sleep issues. He now is classed as having a severe sleep disorder which impacts not only on his life but on the family especially mine! Roo has been medicated since he was 2 to help him sleep with some breaks inbetween when he start to show he had become tolerant to it. We have also tried various ones and some were stopped because of the side effects.
When I was pregnant with Faith, the cch decided to stop all meds with no explanation. When I finally got through i was told that they felt he needed a break. That's it. No support or nothing...just left to get on with it. I was heavily pregnant, using all my energy to keep the baby within me alive (& myself) as I had Hyperemis Gravardim and got seriously ill if I didn't take a combination of medication that is normally given to patients undergoing chemo. So with the withdrawal of the meds the sleep deprivation crept in. The weeks that followed were very dark, lots of tears shed, depression slowly crept in, I would sit all night long trying to get Roo to sleep while throwing up in my sick bucket thanks to the HG...
Then I broke the most important rule of which all professionals said must never be broken and that was to allow Roo to watch his favourite programmes on his ipad/tv. This meant that while I knew he was safe and happily watching his programme I could snatch a few hours kip. The consequence of this meant his sleep routine that we had worked so hard for 4 yrs ceased to exist and he no longer went to bed happy, instead he would cry and clung onto us refusing to settle unless someone stayed with him which was my husband and he would often be in there for 2 hrs or more before finally managing to sneak out of the room. I decided to plead my case to Roo nurse who sensing the desperation in my words promised to help me and by the end of the week she managed to get consultant to agree to reintroducing melatonin. I had never been so thankful...it wasn't perfect but it meant we got on average 4hrs kip.
The last few months his sleep got really bad again and it was clear he needed a second med added as it was starting to affect his school as last term he was being sent home for being too tired or falling asleep and his behaviour started to go downhill so consultant agreed that he needed more meds.
We couldn't be without the meds in the photo..7 bottles for 4 wks worth. While he is sleeping a bit better, coping better during the day he still suffers the consequences of them stopping his meds with no explanation.. .we have no routine and it will take months if not a year at least before we can get back to what it was. I am still dealing with it too as that combined with everything that happened with Faith has had an impact on me. But we will get there as long as we have his medicine.
This post was written as part of the bloggers challenge during this month which goes alongside the Instagram challenge that I'm taking part for the whole of this month in the lead up to Undiagnosed Children's Day.
Undiagnosed Children’s Day is a nationwide event where we increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK (syndromes without a name). SWAN UK is the only dedicated support network available in the UK for families of children with undiagnosed genetic conditions.
It is estimated that around 6,000 disabled children are born every year with an undiagnosed genetic condition. Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. We want it recognised that being ‘undiagnosed’ is not always a temporary stage; the genetic cause of some conditions may never be known. We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support both in hospital and at home.