Hi my 3 year old lad (one of twins) started to suffer from epilepsy aged 16 months. He has since in the last 8 months been poorly with continuous infections and undiagnosed symtoms.
They are , spiking temps, low SATS 84 -96 Diarrhoea (LASTS between 3 days - 6 weeks) sweeling of legs and poor mobility occassionaly. fatigue , floppy.
he has been admitted into hospital 9 times in the last 3 months and I dont seem to be getting anywhere. I feel as though the staff at the hospital are no longer bothered as this seems the norm for him now, although i know better as his twin is never really ill.
They have diagnosed him with HMS hyper mobility which would make sense due to his legs but I am worried about why he keeps getting so poorly. It scares me as i cant help but think there is something serous going on somewhere but I dont know what it could be or what i can insist on asking for.
On his last admmission to hospital they told me they had found a heart murmor. the the next day another doctor told me she couldnt hear it, later another said they could??? Part of me wonders if this could cause his sudden fatigued and poor SATS levels, bad circulation (His hand and feet always go freezing cold)
I know i have asked about Chrones and an ESR blood test was done , this came back at 56.
his heamaglobin was 10.5 and i am still waiting on IGE RAST etc,,,, but i have had to push so much to get these bloods done.
Can anyone help me ???? when he was 16 months old he went into a sudden epileptic attack and stopped breathing, i had to perform cpr until paramedics came, Im so worried about my boy,,, but no one seems to listen.
I sympathize its hard when your child is sick and you are not getting answers, all I can suggest is that you get another opinion.It could be he has had a virus many have been going round with similar symptoms you describe.How is he doing now ?
Oh my goodness, this is so hard as a mother! Not sure where you are at--- do you have one doctor that follows your child on a regular basis verses the multiple that you see in the hospital? So many with different ideas would be very confusing. I would seek that one important input from a doctor you trust and then a second opinion. Is there somewhere you can go to have a thorough review of what has happened thus far.
I do want to mention that you can go to the 'Ask an Expert' forum by going to the above tool bar and hitting forums. On the right side of the page there are many ask an expert forums with doctors and professionals that might be able to give you more help and suggestions or at least where to turn next.
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