Infantile unexplained temperature

I was a child as was my under investigation sister who suffered with unexplained infantile temperatures. My children both had the same from about 3 months. No explanations and too often not to have worried about which I did. I wonder if anyone has the same experience or knows of a connection. Both my children are symptomatic and hopefully about to receive loading dose and treatment.

[clivealive Forum Support]

Hi Hidden are you saying that you and your children are symptomatic of B12 Deficiency?

Do you have any serum b12 and serum Folate test results to put on here?

I am not a medically qualified person but hopefully there are others on here who can answer your question.

[Hidden in reply to clivealive]

my last B12 result in september was 215 my daughters was 380 and my sons 269

serum folate mine 2.3 daughter 4.8 son 4.4

We all have neuro symptoms.We all suffer from fatigue.There is a P.A family history. Dr refuses to diagnose me with P.A even though evidence is overwhelming but is allowing me to self inject every other day hydroxocobalamin,so far with no limit.I am on the 14th dose with no real improvement yet.He has referred to haematology,cardiology and gastroenterology. My daughters daily struggle is breaking my heart she has a history since birth,lots of referrals no conclusion. My son is also heavily symptomatic. The GP has said he will consider treating them and I am trying to remain patient (!) not easy after 30 plus years.

[clivealive Forum Support in reply to Hidden]

That is absolutely iniquitous Hidden

It sounds as though your doctor is putting his budget above you and your family's health and wellbeing.

Sorry - rant over!

[Hidden]

Thanks clivealive

If I were to kill someone I would be punished by the justice system and would pay for my crime with a prison sentence. Myself and my children have been "imprisoned" in ill health a "crime" committed against us. One that it seems perfectly legal to commit!

My desperate frustration and grief at watching my daughter struggle is beyond description. I feel as if I am constantly being placed in a waiting room that makes me invisible or that renders me mute to the doctors who can with a flick of a pen change my child's life for the better. Who pays for stealing our lives?

[clivealive Forum Support]

It took 13 years Hidden between removal of two thirds of my stomach at the age of 17 due to a perforated peptic ulcer in 1959 before I finally got a diagnosis of P.A. after two Schilling tests, (four years apart) by which time I was a walking Zombie so I can understand your frustrations a little. I guess I was just about running on empty by 1972.

My doctor at the time, when she got the final results asked "Do you want the good news, or the bad news"

I said "Give me the bad news"

She said "You're going to die - and that's within the next two years"

Franticly thinking of my young wife and two girls under five I asked "What's the good news then"

She replied "You're not going to die if you eat a diet of raw liver three times a day or, alternatively, have an injection of cyanocobalamin every four weeks for the rest of your life"

Much as I love liver & onions I opted for the injections and 45 years later I'm still "clivealive" at 75.

[Hidden]

Thank you and glad to hear it clivealive ! I was diagnosed with M.E in 1990 after 5 long years of battling to get help. I was then treated horrendously from then on. I was only ever offered anti depressants and told not to get stressed. After the birth of my son in 1992 I too was like a zombie. I thought I had died but no one had told me! I got used to the abject hopelessness of my situation always on the lookout for a reason other than M.E which did not give me an adequate explanation. I complained that fatigue was a symptom not a condition when I was then labels with CFS.

My first marriage failed as my sons father did not believe that I was ill. My daughter was born in 2000 and when she became obviously unwell aged 8 with pain and fatigue, she had also been diagnosed with 'bels palsy" aged 5 I started to investigate. I "reasoned" that M.E had no evidence of a hereditory" disease and so began to ask for referrals from my GP. She was diagnosed with Osgood Schlatters syndrome which I threw out! Til eventually I was told by my GP that I was "projecting" my symptoms onto her and a referral to CAMHS (mental health) service was made.This proved that she was emotionally well. She was diagnosed with Ehlers Danlos type 3 and borderline P.O.Ts as were my son and myself. This still goes no way to a full explanation of our symptoms. I have over the years questioned my sanity.

It has indeed been a long road with no sign yet of a finishing line.