update on Hannah

[Guest guest]

Hey everyone:

Thanks for listening to me vent yesterday. Sometimes I think it's really

healthy to just get angry about all of this and then move on.

With the recommendation of Hannah's pediatrician (due to the unwillingness of

the rheumy to see her regarding her knee), I called our Children's Hospital

Orthopedics department today. I explained everything that has been going with

Hannah to a very nice, compassionate nurse. She listened patiently and promised

me she would call me back today.

She called 2 hours later and Hannah has an appt to see an ortho doctor on

Monday!! The rheumy told me there probably would be a 2 week wait. The nurse

also told me from what I was describing to her about Hannah's knee, she said her

joints were probably very weak right now and she may have dislocated it.

I will update next week after we see ortho. Who knows, maybe he will give us

answers the rheumy has not.

Hope everyone has a great, pain free weekend.

Beth & Hannah (age 9, no diagnosis yet)

Happy thoughts..Be Well

Beth Yohnk

yohnkmom@...

[Guest guest]

I hate when a dr says not to be to concerned and that you have to wait for another test!! I will be praying for you and Hannah. Good luck.--- & Elaney(12 JRA, heart defects, scoliosis)Beth Yohnk <yohnkmom@...> wrote: Hi everyone: Today we had an appt with Hannah's immunologist/allergist. She had 2 different breathing test. One was very good the other was abnormal. Not

horrible, she was in no distress, but something that needs to be closely watched. I don't fully understand the whole thing yet, but she said not be too concerned at this point. If she does not do well on this test again in September when we see her there will some more invasive testing needed. We then talked a length about her immune issues, which if you recall her rheumy said the cause of the joint pain. Well she only agreed with that to a point, but said that certainly does not explain the majority of her pain. Anyway last fall we had her tested for CVID (common variable immune deficiency). She tested normal, but she wants to repeat the test in September as her normal was very close to being abnormal (I hope that makes sense). We are also going to repeat all of her IGG panels (more immune related testing) to see if anything has changed (the hope is that these

have improved as the majority of them are abnormal and I think there are at least 24 parts to this test). Meanwhile, my mom has seen her rheumatologist and he has said he will see Hannah anytime we feel we need him. That was good news for us as we liked him a lot. If she continues with lots of flares I will take her in soon, otherwise it's good to know he's there if we need him. So that's my update. Hope you have great rest of your week. Sending prayers & happy thoughts, Beth :-) Have a wonderful day! visit our carepage at www.carepages.com the carepage name is ElaneyPick

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