MOTHER KNOWS BEST! (NHS Services For Children)

Member Name: Parsley

Product:	NHS Services For Children
Date:	09/08/02 (414 review reads)
Rating:

Advantages: NHS can be very good when the problems are found out!

Disadvantages: Lots of time wasting & not taking mums seriously when something may be wrong

I am writing this story mainly to get a few things off my chest and to get rid of some of the things that have weighed me down over the last year as I believe that both my son & I suffered needlessly by failure to identify my son's problems at an early stage and from being patronised by people who wrote me off as just another fussing mother.

I will start back in April 2000 when my beautiful son was born, a perfectly healthy baby weighing 8lbs and although I know that all mothers are biased, my son was truly beautiful, a gorgeous dark little thing with dark hair (blond now!), dark eyes & olive skin. The night he was born, I thought that I had never seen anything so beautiful in all my life. I was totally besotted with him.

We bonded well and I breastfed him for the first 6.5 months of his life & he progressed well, then I switched him to bottles. I started the weaning at 4 months and all seemed well until I ran into trouble at 8-9 months when I tried to give him lumpy food & he was violently sick every time, he tried to swallow. I asked for the Health Visitor?s (HV) opinion & advice as I could not move him on to lumpy food. I was told more or less, that I would have to persevere or he?d be eating baby food at 3! I didn't get much helpful advice at all.
The whole family was then really ill with flu for 5 weeks (seriously - it was awful!) but eventually after a holiday in Malta we recovered, but still my son couldn't eat, so I carried on giving him mainly soft baby food. I still tried to wean him onto real food & fortunately by 12 months, he tried to eat it, but he ate so little & drank so little milk that it was worrying.

At 13 months he had a serious viral infection and had to stay in hospital, initially we were told it was meningitis and that they were going to give him IV anti-biotics, but fortunately it was a false alarm & turned out to be far less serious. During his stay, he ate almost nothing and drank only 2oz of milk
a day, but no-one seemed that concerned about it even though I mentioned it to the Dr that his appetite was very poor.

In the months that followed my son recovered, although he seemed to have been a bit knocked sideways by the illness & still he did not eat much or drink & he threw all his food on the floor. I watched my son go from a well padded baby, to a stick thin toddler and it was very clear to me by this stage that something was wrong. I tried to tell the HV my concerns many times, but I was fobbed off constantly as an over-anxious fussing mother which I found was a bit insulting. It's not nice when you know that people are not taking you very seriously - especially when you are sure that there is a genuine problem. I fought very hard to get someone to take notice but was fobbed off each time.

My son started to have horrendous bouts of sickness, vomiting every night, his nose ran thick & green constantly & he made no progress with speech or comprehension of anything I said to him. I couldn't teach him anything & all the response I got was that boys are slower than girls!!! Slower maybe, but I thought by nearly two, surely he should know more words than, Star, door & Daddy & other peoples boys of the same age seemed very chatty and fluent!
He was also always ill & at the hospital or doctors all the time. I started to feel like booking in a weekly appointment in advance each week, I was there so often. A couple of times, I had booked for myself, but my son took the appointment as a complete coincidence!

From 15mths-20mths, my son's weight stuck hovering around 10kg (22lb) mark, which was very underweight & he dropped down more than 2 percentile lines (which is usually the point that they start to worry!) I told the HV this & she didn't really listen - months later ? she said "oh he's dropped 2 percentile lines" and I said "Yes I've been telling you that for months!" I really felt I was
banging my head against a brick wall & I got very frustrated by it.

Eventually my son was referred to the hospital who didn't really take me seriously either (great!) Every time I turned to Drs or health visitors with my concerns, I was fobbed off. I was even sent with my son to a child psychologist for his "behavioural problems regarding eating".

I gave birth to my 2nd child when my 1st son was 17mths old and during the week I gave birth, my first son was so ill and sick with another bout of violent sickness that I started to really worry about him. My sons bouts of sickness were odd, he'd be fine during the day time, then after being asleep for a few hours, he would cry in a very distressed manner & be violently sick. This occurred night after night after night and my son lost even more weight. He wasn't actually ill in the day time either, no temperature or any other sign of illness. His tummy also had the most terrible diahoerrhea. He'd be ok for a week or even 2 & then it would start again.

He was so sick round the birth, that I looked at him one day in his playpen and he looked like a famine victim, a skinny body that I could see every bone & stick thin legs & still he wouldn't eat & I despaired. How could I fatten my child up and get him to full health again, when I couldn't get him to eat? How could I find out what was wrong with him when no-one took me seriously? I was very upset & I cried a lot over it. Sometimes I thought that I might lose him & that opened a whole can of worms emotionally.

I had spent months of watching my son ill & they termed it "failure to thrive" - oh how I hated that phrase with a vengeance! Failure to thrive sounded so awful & so hopeless & Victorian. I started to feel that I was a failure as a mother.
The child psychologist was not helpful at all, she went over all the weaning etc to find out why my child "had developed behavioural problems wi
th eating", to the point that I thought that the reason my son was so sick was my fault because I had got the weaning all wrong. This may sound silly now, but at the time I had been under an enormous amount of stress and due to the lack of support & feelings of helplessness about watching my son go so downhill without being able to do anything about it or get anyone to take me seriously, that is the conclusion I came up with.
I also think that all the hormones raging in my system from childbirth didn't help matters either. I still couldn't get any help for my son and the stress really mounted up & I started to have very severe panic attacks & anxiety attacks that did not seem to end. The physical symptoms I suffered as a result of these were awful. All the time I desperately tried to ?pull myself together & stop feeling anxious, but I couldn't and the Drs couldn't help me because I was breastfeeding. I never realised that anyone could feel so bad with anxiety & each time I hit what I thought must be the bottom, it got worse. I thought as my son was so ill & never making any progress that I could lose him & I wrongly thought it was my fault so the false guilt I had was awful. I do think that all this could have been avoided if the health professionals had listened to me at an earlier stage.

My son was in hospital again when the new baby was only 5 weeks old. He had tonsillitis, ear infections & had a type of fit in the night. His temperature was sky high & the hospital had trouble bringing it down, he was acting really strangely repeating the same garbled phrase over & over again while staring blankly into space. The hospital treated him, but still no-one did anything about his very obviously inability to gain weight. They didn't even do any tests even though I asked.

A week after he was out of hospital he had yet another serious ear infection & this time the GP referred him to the Ear Nose & Throat (ENT) department (I w
as told that this could take up to 6 mths for an appointment!!)

By now, I was in a terrible state with my nerves & my son was in a very bad way & even when he picked up, I knew that it was just a matter of time before he was ill again. I tried to find a reason for my sons problems myself and I tried everything, I even switched my sons formula milk to Soya & when I did, he suddenly gained 0.8kg - the first gain in 8 months. The Dr started to wonder if he had coeliac disease or milk intolerance although the didn't test him, we tried cutting gluten & cows milk out of his diet, but it made no improvement.

Luckily the appointment with ENT came through at the end of February when my son was 22.5mths.
The ENT consultant was fantastic and found my sons problems straight away. His tonsils were so big that they practically blocked his throat (the Dr was very excited at the size of them!), they were red and sore which explained his inability & reluctance to swallow or suck on bottles & beakers and why he didn?t want to eat anything.
His nose was running constantly for more than a year with thick green snot & this turned out to be due to swollen infected adenoids & after a hearing test, they discovered that he was almost deaf and needed his ears cleaning out & grommets fitting. He also had sleep apnoea where he stopped breathing in his sleep, followed by him suddenly gasping a big lot of air which is quite scary to watch.
The consultant said that he needed his tonsils & adenoids out as an emergency & said he would put him down for top priority which meant that it would be done in 6 weeks. (6 weeks for an emergency!!!)

At last I finally found out some of my sons problems & I realised it was definitely not my fault. This took a huge weight off my shoulders as I finally realised that I wasn?t to blame for my sons illness.

Those 6 weeks waiting for the op were awful ? my son lost the 0.8kg he had gained, was sick every night & ha
d the awful diahoerhea. I was so scared that he wasn't going to be able to have the op as he was even sick the night before the op, but fortunately they went ahead & did it.

The day before my son was 2, I took him to the hospital for his op (tonsils & adenoids removing & grommets fitting) & I was very emotional. 2 years previously I had gone into the same hospital and had the induction started as I was 14 days over my due date. Nothing much actually happened for 23hrs & then I had him very suddenly in an hour & 15 min labour. Now here I was bringing him back as I joked for a "repair"! He weighed only 22lbs (10kg) and was in the doctors words ?lighter than many 9 month old babies? (My 2nd baby was 22lb at 9mths too!!) He looked like a flower kept of out the light, he had grown upwards, but not outwards & was painfully thin.

They took the younger patients down to theatre first and I went with him, he was a bit scared & I couldn't really explain anything to him as he was too young & couldn?t hear me clearly anyway. Perhaps that was the best thing as he wasn't fearful in the run-up to the op. I held him in my arms as the put him under the anaesthetic & I felt very tearful as I left him, he looked so tiny & pathetic on the trolley, but I consoled myself that I was more worried that the op would be cancelled, so it was a relief to have it done.
About an hour & a half or so later I went to the recovery room to see my son & go with him back to the ward. To my relief he was fine, but heavily sedated & on morphine. I had to hold the Oxygen mask over his face to keep his blood oxygen levels up as the nurses in recovery were very busy as there were a lot of patients in the recover room. They took my son back to the ward & he slept peacefully for most of the day. The next day the doctor spent a long time talking about my sons illnesses & they finally tested him for everything they could think of! All the tests have later proved negativ
e and it appears that his tonsils must have been causing all his trouble - the bugs were going down his throat into his tummy & making him very sick. The surgeon told us that his ears were extremely full of rubbish too so the clean out & grommets should make a huge difference. He was right.

In the week after the operation, my son was learning several new words every day and once his throat had healed, he started to eat like a horse & he gained weight very quickly. After spending nearly a year at 10kg (22lbs), within one month he gained 1.5 kilos (3lbs) & now 4 months later, he weighs 12.5kg (27lbs). My son is now in very good health, he has had no recent bouts of sickness & he is doing really well at last.

I just wish that the doctors & health visitors had actually listened to me when I had told them that I thought that there was something wrong with my son. I am a great believer in the fact that a mother knows when something is amiss with her child. There may be a small minority of fussers & time wasters, but surely as a busy mum expecting & then having my 2nd child, surely you would think that they knew that I had better things to do with time than waste theirs???? In my opinion Mothers know best!

Having said that, I still cannot thank the doctors & surgeons who did the operation enough, especially as I know that they are normally reluctant to perform this operation on children as young as my son & I am so grateful to God for my child's renewed health. I feel like I've been given him back again & I cannot be more grateful after the year we have been through.

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