Immunology - any advise. 14 week old

[Laylor]

Any advise is greatly appreciated. Will try and explain without going around the houses

My baby is 14 weeks old. When born he contracted an infection which they put down to being in the womb almost 40 hours after my waters broke. 5 days of antibiotics later we were discharged

4 weeks later we were admitted again for another infection. They couldnt find the source of the infection but knew his white blood count was low and was struggling to fight the infection. They took bloods and sent loads away to check for anything and everything. Another 3 days of antibiotics and we were discharged

4 days ago we woke up to him having a temp of 40.6. Took him straight to the hospital at the request of out paediatrician. They did loads of tests, blood cultures, urine cultures, blood markers, lumbar puncture and still couldnt find the source. The doctor is pretty confident his immune system hasnt matured enough to fight this and was speaking to a major childrens hospital to see if they need more blood to test his immune system. We had 3 days of antibiotics before being sent home and waiting to hear back from the childrens hospital. For the last 2 days the district nurses have been over to administer antibiotics. Baby is absolutely fantastic and you wouldnt think anything was wrong.

Just received a call from the hospital to day the childrens hospital want to see us in the next few weeks and to await a letter. He asked how we were doing and I said fine and you wouldnt think anything was wrong. The doctor said he thinks its just his immune system and nothing too serious.

The doctor could say hes 100% perfect and I'd still try and find something to worry about.

Anyone with similar experiences

My son actually does have a primary immune deficiency are story is so long and complicated it’s hard to go in to but what I will say is my sons immunologist is amazing and one of the most intelligent people I’ve ever met from other family’s I’ve spoken to it can take an awful long time before being referred to immunology so it’s great the hospitals being pro active. One thing I wil ask is you mentioned his white blood cells where low is this his neutrophils by any chance because if it is there are some things you wAnt to be very careful of?

Yes yes it was it neutrophils. Please give me as much information as possible and thanks weeks so much x

Basically if your son is neutropenic you should be shielding we where completely what we now call shielding him for 2 years and this was 4 years before corona if he is neutropenic he will be extremely vulnerable to any infection you must tell every health professional you come across any fever over 38.5 means he needs iv antibiotics automatically he should not have any live vaccines as he can contract the illness they are vaccinating against from the vaccine. If he is still neutropenic after 8 weeks or so he needs to see a haematologist not immunologist allthough they overlap we started with a haematologist due to my sons neutropenia my sons story does sound quite similar to be honest he’s 5 nearly 6 now the first 3 years where the worst whilst he suffered infection after infection me and his diffrent doctors where very worried at one point where very worried about him but we’ve slowly ruled out the extreme immuno deficiency’s and at 6 he takes an antibiotic everyday and has only been admitted to hospital once this year I know people tell you not to google but I would advise you look up neutropenia because they’re are some very strict rules around being neutropenic for instance until my sons neutrophils went up he wasn’t aloud tap water and some other things. We’ve had infections in most parts of the body from urine and kidney to eyes and ear and chest but he’s always done better then anyone thought he would even when extremely neutropenic I think he had over 20 ear infections before he was 2 that sort of thing though hopefully for you you’ve just had a run of bad luck and you’ll never need most of this information if you’ve got anything specific to ask please feel free

Wow thanks ever so much for all this information and taking the time to explain yourself in such detail.

I must admit I dont think it is that as surely it would have been picked up again 2 weeks ago. The first we knew about his low white blood cells were when he was 4 weeks old so 12 weeks since and they told us the infection had cleared up and his white blood cells returned to normal.

I'm going to have a read of that now though.

It's so frightening isnt it? Hopefully I should receive the letter for the immunology department but in the mean time I have screen shot your message and I'm going to talk over in great detail with my paediatrician. X

If the white cells go back up then he’s not classed as neutropenic anymore so that’s no problem but that amount of infection so young should be looked in to and there’s no harm in seeing an immunologist and checking it out my sons problems only really started coming out after he was admitted at 16 weeks for something totally unrelated I hope little ones ok and you can start to enjoy him and he live just been a bit unlucky

Thank you so much. Hopw your little one will be okay. Nobody told me how much you worry as a mother. X

@Harrysmum2020 hello again..

My son is back in hospital and they have mentioned this now so I'm ever so nervous. We are being referred to immunolgist and haematologist. For now he has to have blood every week to check his white blood cells which keep dipping and rising and viral antibiotics for 6 weeks and review from there.

Hand hold please x

I'm here
I have autoimmune neutropenia. Basically I have less neutrophils and less mature ones as I kill them off. I'm under haematology and live a pretty normal life

I suspect they will be looking to see if the neutrophils are maturing or not being produced etc etc

Sorry I mean oral antibiotics not viral. He said it could be cyclic neutropenia

Hi @QueenCT thanks so much. May I ask how old you are? Do you have to do anything different? Were you poorly as a baby. Part of me hopes it's this sowe have answers but part of me dosent. It's so hard.

This time round hes been fine really. Had a slight temp and projectile vomited all bottles in a 24 hour period but other than that hes been alert and ever so smiley. X

I'm 36, was actually only diagnosed 4 years ago
It's rare in adults but more common in children who tend to grow out of it
They do blood tests for antibodies to see if there is an anti neutrophil antibody for diagnosis
I inject a drug called GCSF weekly

Thankyou.

There's a FB group called U.K. neutropenia support they're helpful if you get a diagnosis

Oh lovely thank you. I've just requested to join. Will be interesting to see if any other very small children have it. X