Sunday, 12 August 2012
My Children and Lyme update
I thought I would give an update with regards to my children and their treatment and of course Lyme symptoms.
Having discussed with my children they feel I should write more about their symptoms and what is happening to them as in their words "If it helps others who are born with this disease yes write about it, there is not enough information out there about children born with Lyme".
I have their permission to write about their experience.
Before Pregnancy, during
As I have said previously I did not know the connection to M.S and a parasite infection when my ex partner and I decided to have children, I was advised that getting pregnant before age 30 would be a good thing to keep the M.S at bay and i was told that more women end up in a wheelchair when having a baby past the age of 30 than women who conceive before age 30.
What did I know I trusted the professionals didn't I, I trusted the various M.S groups who was I to argue.
The world wide web did not really exist back then so information about anything M.S was very difficult to come across unless you knew what to look for and you were prepared to sit for hours in a library that may or may not have any data.
We decided to have a baby before I reached age 30 now don't get me wrong when I fell pregnant of course we were over the moon like any new parents, we were excited and of course every stage of the pregnancy was a new exciting experience.
I was blooming and felt very well and yes my M.S seemed to have calmed down quite considerably whereas before I was in and out of hospital having steroid treatment I had been prescribed numerous drugs my sight was sometimes there sometimes not, my swallow would come and go and my bladder function was real bad basically I could not control my own bladder I felt like a toddler very embarrassing!.
I was finding it harder and harder to drive my car and yes i kept getting lost just driving to my local shops I would loose my way.
My memory was quite bad as well and yes I felt like a person with dementia sometimes.
Back then it was extremly difficult to get a wheelchair and any help from the outside i.e social services.
I suppose I was lucky people had started to believe M.S was actully a condition and it was not all made up by the patient, unlike ME at the moment which is a crime in itself that ME/CFS is not taken seriously and how the powers that be are pushing real hard to get it reclassified as a psychological condition! How dare they!
When I did fall pregnant my sight came back bladder function came back I became more mobile and as I said I felt very well.
All the above started to become a distant memory like a terrible nightmare and it had stopped.
people started to forget I had the diagnoses of M.S.
The birth was ok no major problems at all and we had a bouncy little baby.
It was after the birth I started to have hip problems so was given crutches to walk. Now of course I know why I felt better when i was pregnant because of the oestrogen and the fact that pregnant women's immune system is at it's prime so it must be why.
After birth and baby stage
Before treatment they would get irritable and suffer from rage and anger.
My youngest did not get cradle cap nor a snuffly nose but she would overheat and would be unable to control her internal body thermostat so much so she would vomit if she got too hot.
The eldest would have a problem with the internal body thermostat and suffer with the cold.
My eldest had a problem to thrive when first born which was unexplainable at the time luckily this was overcome as in congenital syphilis the child can fail to thrive.
My youngest did not fail to thrive at all there was no problem with feeding.
Here was I carrying around all this guilt because I thought the snuffly nose and excess mucous was in some way my fault that I had done something to cause this just your typical mother guilt when the doctors diagnosed a snuffly nose they looked at me with disdain and blame.
I suppose yes a mother who has M.S which is really Lyme is partly to blame that is if she had known the true facts.
The cradle cap was my fault too according to the midwives again looking at me with disdain well people if you all knew why not tell me so I can do something about it?
No apparently cradle cap is quite normal which it is unless of course you connect all the other dots many babies get cradle cap yes and it is not harmful to the child and can be easily treated but as I say if there are ather parts to the puzzle like mother has M.S(Lyme) child has an overload of mucous (Mucous patches damage to mucous membranes) child has a problem with eating and is failing to thrive then if there is cradle cap well it all fits!
Of course the problem with eating yes again there is more guilt for me and it was my fault according to the doctors and the midwives, I was doing something wrong well maybe again if they had of connected the dots they could of started to treat my child properly with some simple antibiotics and myself as well.
Both children were sensitive to noise and light it hurt them.
It seems when my children were born the first the Lyme affected the top area of the head from the scalp to the nose and eyes.
With the second it first affected the bottom part of the head from the mouth throat and the chest.
The first developed a problem with the eyes when the child reached age 4.
As I said before I nursed my baby as I also was advised breast feeding can reduce or stop M.S relapses, with that advice I thought it best to breastfeed for as long as possible.
I was told that it was also good for the baby of course. Little did I know.
It is hard to get information about whether one should breast feed if you have Lyme or not to. Mothers with AIDS are now told to breast feed according to the WHO.
From my experience and my children I feel that breast feeding benefited us all but that is my experience.
Maybe it kept the Lyme and co-infections at bay for us all who knows.
My baby did suffer from a snuffly nose could i get answers as to why absolutely not.
But in congenital syphilis the mucous membranes are affected and in syphilis this causes snuffles and there can be mucous patches in the mouth and if there is mucous patches in the larynx and the child's cry can be hoarse. If you need to know more about Lyme look at syphilis. That is why my child had a snuffly nose and a lot of mucous because i am sure that is a symptom of congenital Lyme.
My baby also had cradle cap which could be an indication of Lyme.
Did my baby have a problem with sleep? no it was only when my baby became older that sleep problems occurred.
Childhood and beyond
There was no problem with learning in either child it only started to become a problem as they got older.both my children suffered from a form of eczema as in syphilis where the child can suffer from eruptions which are a coppery colour.
Both children before treatment became clumsy and forgetful I suppose one could class that as dyslexia but since treatment they are not clumsy or forgetful.
As they did get older from age 7 they would suffer fatigue and lack of strength in the limbs and have painful joints and pain in their bodies.
My youngest also has suffered from a bloodshot but this happened after treatment started and it soon cleared up.
But what I have noticed is with others and myself and various pets the bloodshot eye is connected to Lyme.
It is actully quite amazing they survived really considering they both had congenital Lyme amazing how the human body can cope.
If there is mandatory testing for AIDS and HIV in some states in the USA ( not that the tests for AIDS/HIV are that good as it is) and Lyme has reached pandemic proportions surely it's time now to face facts and face Lyme and co-infections head on and start testing all mothers who are expecting it is time now to combat the Lyme and co-infections and start to treat all properly and have the correct tests as well because the tests that are available are not any good to man or beast.
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