Tag Archives: immunology

Immunology update

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I forgot to blog about our most recent hospital stay. I did facebook and tweet about it, but not blog. I do that a lot recently, while I really want to document our journey I also find it hard to write, partly because Im so mentally drained, and partly because writing about it makes it so god darned real.

Im a happy kind of guy (ok, lady), I joke and smile and laugh, thats how I get through life, and that stuff that I feel deep inside, it comes out when I write. So when I don’t write…. its because Im not really ready to let it out.

Well, we went to the hospital, zebra blanket, food, toy box etc all in tow. We got admitted for our 36 hour stay and had all the immunology panels re done.

I still have to wait for the subclasses to come back, but the main classes are in, Her E is up almost to 1500 now (should be below 90), still not high enough for a hyper igE syndrome diagnosis but if it keeps going like this it will be eventually. IgE is allergic reaction, and while her numbers are off the chart there are no allergic symptoms. Her M is up (GREAT!) and so is her A and G, the G is particularly great news as it was very low before and its mid range now. If thats all greek to you then lets just say that all those numbers are representing different parts of the immune system. So while before she was borderline deficient in most, now her numbers are looking better, however, as the igE is so high we are still immunology patients. We were hoping to be signed out of immunology, but nope. First we need to see what the subclasses say (letter should come in a few days), then we must repeat all the tests again in 6-12 months. With the igE the way it is we may very well be immunology patients for life. So, immunology, rheumy and lung. Its ok. Im feeling very positive.

Having said all that, being in hospital was a great experience for me this time, we were in a room dedicated to patients doing infusions for CVID and similar. One young girl came in, around 14-15, she did the whole thing on her own! They arrived at 9, the nurses were there supporting but she infused by herself, she stuck herself, infused, and removed once done. She and her mum left by 12. Not sure if her next monthly infusion will be in her home or not, but I was as proud of her as if she was my own child. How amazing. And we CAN live with these things. Its not so bad! Me and her mum, we needed no language. She saw our Zebra blanket and A’s mask and we were instantly in this club together and her smile told me just how much she was there, really there with me.

All in all, immunology, yup, we are still there, but its ok 🙂 In June we go back to Rheumy, then in July back to Lung. Then – DRUMROLL – In September, kiddo tries to go back to school! Keyword here, tries ….

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Germs, school rooms and dreaming of a farm!

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Not feeling very “bloggy” lately. I can honestly saw we are all exhausted.

End of May, I finally went to the hospital and handed all our papers in. So many hospitals working together on our case. I just wasnt ready to hand it in sooner. It looks like they will still want us to go to Warsaw to check something there. We have the unexplained signs of autoimmune activity and bla bla bla. Bla bla bla may seem a bit blasé, but I just cant manage more then that right now. Im tired of “it” constantly being what our life revolves around. Waiting now to see how often we need to re test her igg’s also.

On a very positive note, she has not had pneumonia since she was taken out of school. TOUCH WOOD (as she sits downstairs with a big wheeze and a cold). She even had the same 48 hour cold / virus that here brother had a few weeks back, and hers ALSO lasted 48 hours. I almost cried with relief. I had no idea her immune system knew how to do that!!

The doctors are hopeful that this break is all that we need, but lets see, only time will tell.

On the school front, we have our plan, and our back up plan. She will have tutoring in school 3 times per week without germy other kids around. Hopefully she will still be ok with this once flu season starts, if not we will have to take her out fully. Im ok with all of this, I have gone over the plan in my head a million times!

New house is looking fab, and thanks to my Pinterest research, our school room eats other peoples school rooms for breakfast! We LOVE the school room, its probably our favourite room! A couple of more things to do, then its all ready.

We had Celiac kiddos birthday party just a few days after moving in, and it was fab! I thought the preparations would send me in to a stress fit, but it really wasn’t so bad! Guess Im becoming a pro at catering to people the gluten free way. Even the corn free and egg free is getting a tad easier, although I do miss being able to buy bread!

Our biggest enemy lately is not gluten anyway, its those pesky germs that everyone carries around, the stuff that lives in peoples noses, the stuff that little kids sneeze out and cough out and touch and then attack celiac kiddo with. Ok, fine, nobody is attacking, but sometimes it really feels like it. Its SO hard keeping her safe without going overboard.

I go to the supermarket early in the mornings now when its not so busy, that way she wont need a mask, more times then one Ive changed checkout after seeing a snotty cashier sneeze / cough in her hand and then carry on moving peoples groceries to bags. I don’t even want to start thinking about the stuff we don’t see!

Im telling you, the only safe way to live is in a house in the country, where you grow and raise your own food! It used to be a sort of joke I told, but I am more and more serious about it as time goes by! haha (any excuse to wear wellies full time really).

So, thats us! 3 more days of school, then maybe, hopefully, we can all re gain some energy! Which might mean more blog posts. Lucky you 😉

-Linda

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The image is of a big scary germ. Obviously. Just incase you didn’t get it 😛

Krakow for the day

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So yesterday we went to Krakow. Met a wonderful professor who spoke exellent english, she took her time to explain things thoroughly and answer my many questions in regards to previous results. We are now looking at antibodies to different pneumonias and other illnesses, she suggested that although the IGG subclasses and overall IGG was ok (a tad low but ok) that maybe perhaps the issues is that the immune system , although it has what it needs, doesn’t function normally when there is an infection, she will follow up with us once we have been to Rabka. She even gave me her personal mobile number. Such a relief.

We came home, and I was so tired I ate and went to bed with the kids at 8pm! Probably a good thing as I wont be getting a bed in Rabka! Ha.

I need to say that I have been so surprised by the lack of negative attention we get from A wearing a mask, I expected stares etc, but we have had none of it! Some looks, yes sure, but accompanied by smiles, nothing else. Infact, yesterday in the Krakow hospital a man came running after me to ask where I got the mask! She was wearing her pink minnie mouse mask at the time. I am so glad we got them, it was the right choice for sure. And the immunologist agrees she should absolutely wear one in crowded places until we have a firm diagnosis.

I wish I had been able to help the man with finding them, he spoke no english and me explaining etsy in Polish may not have been very successful! Good luck to him, poor family feeling that they need one. Makes me want to give him a hug.

-Linda

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