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Going Nuts Waiting

2kids4me

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2kids4me Contributor
2kids4me
Posted

HI everyone, I am seriously driving myself nutty waiting for Kathryn's bloodwork. Any words of wisdom?

Some background - Kathryn has multiple medical issues, she's been biopsied, scanned, ultrasounded...operated on (appendectomy June/06)...

Post appendectomy - high levels of urobilinogen in urine

Dec/06 - protein and bilirubin noted in urine

Liver panel done - normal - referred to pediatrician for more..

Feb 8 - bloodwork done to rule out autimmune hepatitis - no evidence of hepatitis. Only abnormal result was high ANA - but that is not uncommon in persons with autoimmune disease........

Feb 16 and ENA profile ordered to rule out a connective tissue disease (high degree of suspicion for lupus)

We're STILL waiting. Since Feb 16, she has had the "usual" (symptoms that have become routine here) - fatigue, diarrhea, weird non itchy lesions in her scalp, mouth ulcers, wrists hurt, muscle pain..

My husband seems to be so calm and "lets wait and see what the tests show.."

Okay so maybe I should be used to this by now, but I phoned the lab and it may be another week :o

I dont know why - when she was sick before celiac, I was better than I am now... like sense of foreboding, but maybe its just lack of sleep?

Sandy

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2kids4me Contributor
2kids4me
Posted
  • Author

Is there anyone else here that has a child with Systemic Lupus and celiac?

I guess what's driving me most crazy, is that this is about my child not about me. I could handle it better if it was me...

well, maybe I would...who knows.....it is so hard some days , managing multiple illnesses.. so for a car trip - lets see, make sure to plan it so the child with Aspergers doesnt get discombobulated, pack meds for thryoid, diabetes supplies, extra gluten free food in case we are stuck somewhere... and now we dont go anywhere cause I never know when Kathryn will be sick and needing extra sleep!

Sandy

Cam's Mom Contributor
Cam's Mom
Posted

Hi Sandy!

I am so sorry that you and your daughter are going through this! I totally understand....when it comes to my kids I am the most impatient mama bear! It is just that you want to do absolutely everthing you can for your kids and when you don't have the answers we don't know where to start to help them. You are a great mom and hang in there. The amazing thing is how much more resiliant our kids are than we are. You will get your answers and you will do what your daughter needs and she will start feeling better (but we'll always have those gray hairs from worry!).

And I totally understand about not going anywhere . . . yesterday was the 1 year anniversary of my daughter's diabetes diagnosis. So I am trying to pull myself together and even plan for a week long vacation this summer but can not quite wrap my head around all the food we'll need to bring (not to mention our own cooking utensils, toaster, etc.) and all the diabetes supplies. Then I start worrying about where the nearest pharmacy will be, where the nearest hospital is, etc. I try to console myself with the fact that with all my worrying and concern and planning, hopefully I am taking the burden off my daughter and she doesn't have to do any of the worrying and can have as much of a normal childhood as possible.

Hang in there - - it is the "not knowing" that is so hard. Once you have your answers you'll get it under control like you have so many times before.

Best,

Barb

2kids4me Contributor
2kids4me
Posted
  • Author

Thanks Barb :)

I feel like I could work for a specialist with all I have had to learn about...

Physical, speech and occuapational therapy

Aspergers

Hashimotos thyroid failure in toddler and managing that through growth spurts

Kawasaki disease - getting a young child to stay still during a 1/2 hour cardiac echo and repeat that every 6 weeks.

Celiac in that child

Diabetes in 9 year old son - much different than managing it on yourself , as all moms can attest to!

Celiac + diabetes in child

teaching children how to read labels, and what gluten is...

arrghhh

and then weird symptoms begin again and because of the path my life as mom has taken - I cannot fathom some "benign" cause for her symptoms. My mother's reassurance has been - "well, dear lots of people walk around with those symptoms and dont even know anything is wrong. The only reason that they are doing bloodwork is because you bring her in.." :unsure::blink:

Sandy

Cam's Mom Contributor
Cam's Mom
Posted

Hi Sandy -

I just posted on the aspeger support thread about my son . . . looks like we have a lot in common. Don't even get me started about the support one receives (or NOT) from ones mother - grrrr.

On friday my daughter's teacher gave her a brownie (gluten-free thank goodness) for some reason, shortly before lunch and gave her no insulin (and didn't check her blood sugar), didn't call me or the nurse.... just seemed to forget that the kid is diabetic. So I was fuming and told my mother and she blamed my daughter (and me!) and said I really have not done a very good job of teaching her what she can have and how to speak up for herself and that it is really her responsibility and she needs to learn this because her life is about this and (my favorite) you can't expect people to take care of your child as well as you would!

Excuse me: she's SIX! And, although we have done an endless amount of training and education around Celiac and Diabetes, I kind of thought everyone knows you can't just give a diabetic a candy bar!!

Anyway, thanks for the support Mom! I think you are smart to look for your support elsewhere (like here) and I also think you are very smart to stay vigilant in light of all the other medical issues - you know what you are doing!

barb

2kids4me Contributor
2kids4me
Posted
  • Author
So I was fuming and told my mother and she blamed my daughter (and me!) and said I really have not done a very good job of teaching her

:blink::huh::o

Maybe our mothers have coffee together without us knowing..... I mentioned this on the other thread - but ..my mom told me when Kathryn was young -that she just needed Kathryn for a week and she'd have her walking! I carried her too much..

at the time Kathryn was 2yr, had central hypotonia and jelly for legs.

umm, my son is twelve, does awesome managing his diabtes and celiac...but then has what we lovingly refer to as brain farts.....he gets his insulin out, then forgets to take it .....or

he goes to a friend's house where they have gluten free chips or something, he brings his weigh scale, measures carefully...eats that...then will snack randomly from the bowl.

......he's 12, these kids deal with a lot and if someone put a brownie in front of me (and I'm diabetic) I might not have the willpower that day - and I'd eat it!

Your child is only 6, unbelieveable that anyone would expect her to have the decision making skills and willpower that most adults struggle with..

Yes, coming to this site is a mind-saver :)

Sandy

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