Concerns for the future

[Chimai]

Dear all,

I know it’s been a while since I last spoke but it’s been a really long wait for test results and in the meantime my little man has had IV treatment with intense nebulisers and physio.

Despite all this within a couple of days of ceasing a course of antibiotics he becomes reinfected

We are still awaiting the results to his DNA screening but finally we have some results to his immunodeficiency tests.

It appears that his results are all normal except his response to the bacteria Streptococcus Pneumoniae. I have done some googling and found the condition Specific Antibody Deficiency (SAD). The symptoms seem to fit my son’s condition perfectly. I am partly very relieved as it does not seem to be quite as life changing as Cystic Fibrosis (although this has not been ruled out as yet).

A positive note looking forwards....hopefully this current course of antibiotics will clear his current infection (a nasty resistant one) and then he’s going to start a daily protective one.

I feel ok about managing the Bronchiectasis if only we had a break from constant infections.

[wheezyof]

It took a while to shift my ongoing infections. Now I'm on a preventative dose of azithromycin 3 days a week. It really does help. I hope this all gets sorted for you soon. xx

[Offcut]

I wish you all the very best hope it all ends soon.

Be well

[sassy59]

Wishing your dear son better days ahead. Love and hugs xxx 💖😘

[Robin77]

Hope the doctors will have all this under control soon and that the new treatment will make a big difference. What a worrying time you've had. Take care.

[Dedalus]

This has been so difficult for you and your little man. I hope that things will get sorted soon and he's able to get back on his feet again. Hugs and all best wishes xx