To the parents of an undiagnosed child
more I learn about Mollys condition the more I feel frustrated. This is why i am campaigning for awareness and change.
Please always be an advocate for your child / loved one. If you think the drs are missing something, you have to persist. My biggest regret is trusting the professionals and not trying harder to push for a diagnosis.
I have relayed all of molly’s symptoms to every consultant i have ever met. I have talked until i am blue in the face about how SOMETHING must be causing her to be this ill.
To be fair she was referred to many specialists but just not the right ones. Granted her condition is very rare. But i feel i have let Molly down by not being harder and simply trusting their expertise.
Molls was referred to paediatrics at our main children’s hospitals age 6 weeks old.
It was discovered at 3 weeks she had a hernia in her groin. This was reported strange for a girl and noted at the time. She also had ASD (a small hole in the heart) and pulmonary stenosis another heart condition. She then developed another hernia on the other side of her groin. Both were operated on.
Molly also had a small structural problem in her lung between the trachea and left tube. She had an ear tag with undiagnosed conductive bone hearing loss. (This was only diagnosed age nine after doing a bone conductive test. before it was put down to glue ear. Moll also had sight problems and wore glasses.
Her notes repeatedly say failure to thrive.
She had no teeth until she was 2 then the k9’s came first.
I didn’t cut her nails until she was 5 they never grew! When her teeth did arrive there was no enamel on the backs of them.
She had a permanent stomach ache . She did not have a normal poo until she was 3 and was always constipated. Unknown thyroid problems?. She was always yellow, her colour became more yellow when she was poorly.
Her joints have always ached, she had problems with her fine motor skills, she couldn’t hold a pencil correctly. Holding hands was difficult too because her thumb seemed floppy and not able to grip. Molly could not cope with a change in routine she seemed autistic sometimes and had most of the symptoms of dyspraxia.
she has always drank pints and pints of water.
And of course everyone knows she has been Ill every 3 to 4 weeks for the whole of her life. Developing chronic asthma and chest problems she now has allergies to 4 main antibiotics because they just kept feeding them to her…
Retrespectivly this was just masking the problem. At the time i was just grateful they saved her life and made her better each time she got poorly. The worry was immense. May be i was so grateful to have her back again that i didn’t look much further.
This now all makes me so mad. I could kick myself! I researched everything she was tested for to the absolute max. But nothing made sense. short of taking a medical degree i do not know what else i could have done. May be i should have just kept shouting.
I’m no medical genius but in 3 years i have found a link between all of Molly’s symptoms and her condition hypopituritsm.
The Hernias of 3 weeks old are proven to have a link with adrenal insufficiency i’ve read a paper written by a leading endocrinologist which state the fact.
Yellow skin also because of adrenal insufficiency and the strain on the liver. this is too clearly documented.
Growth hormone issues also present themselves in the way of nails, teeth, small stature, pixie face)
Elfin type features also was a term each specialist used.
A permenant stomach ache for 9 years could also explain adrenal problems.
Failure to recover from a simple cold also explains cortisol deficiency. I have learnt that ALL OF her birth defects are commonly known as midline defects!!! Which sometimes also include the pituitary gland. Wtf??
Molly also used to basically pass out in to a deep sleep each time she got poorly. Sometimes for days. She went in to a massively deep sleep every night poorly or not . This was so dangerous she was basically near comatosed each night.
This we have been told was ALL due to low cortisol.
So if I have found this all out within a few months of diagnosis why did it take top paediatric consultants from 2 massive hospitals 14 years to send her to the correct department?? .
We saw them every 3 to 4 months …. I repetedly told them ALL OF THESE SYMPTOMS! OVER AND OVER AGAIN! Another example she could not control her body temperature, she was always so cold, Her newborn thyriod test was flagged up at 4 months. But NO ONE investigated this or told us.
My child’s childhood has been ruined by illness and all of it was needless. Had she been diagnosed she would have been relativly healthy.
It has affected the whole family and now we are left picking up the pieces, because age 17 she cannot do anything her body is knackered.
Suing ANYONE for this is a pointless waste of time because money will solve nothing and will make our health system worse.
And though i am accepting of this life we have No one has ever said sorry . This is why you must never let a feeling go. Push as hard as you can for correct diagnoses. My child could have died at any time in her life.
We or her dr’s would have had no clue how to save her.
This is why we must raise awareness and keep fighting . people are dying from miss diagnoses or bad management Things have to change. No one should slip through the net like this.
Keep shouting , Fight harder and don’t stop. A mothers research is better than the FBI i just wish i had something to go on when she was little.R x