Test results today..

[momofkkcg]

Well we had Gracie's appt with the Doctor today to go over her labs from her last visit. So here is the scoop...

They are leaning 3 ways:

Sarcoidosis, HIDS, or Crohn's

Sarcoidosis due to symptoms and increased ACE blood levels. HIDS (Hyperimmunoglobulinemia D Syndrome) due to elevated IgD levels and symptoms. And finally Crohn's due to symtpoms and a red flag with slowed growth in Height and Weight.

So far the Doctor doesn't want to "shoot the gun" in any direction yet. He wants to see how she does over the next three months and go from there.

So that is that. I really don't know what to think...and maybe I just shouldn't think...it's dangerous! Just thought I would let you all know what I found out today! You have been so supportive and I thank you!

Lisa

 

[Dexky]

Is she on any meds? Three months is a lifetime!!

 

[dannysmom]

How is your daughter feeling now? (I am assuming she is doing well, which is why the doctor is waiting 3 months?) I read a bit about some of these conditions and they may just get better on their own over time without treatment. I hope that is the case for you. Thanks for sharing. (I do not think IgD or ACE was ever tested on my son ... will check now)

 

[DustyKat]

Thanks for the update Lisa.

My goodness, I hope they are able to pinpoint things for you at your appointment!

Is there anything you are mean't to be doing or looking out for in the next 3 months?

Dusty. xxx

 

[momofkkcg]

They decided on a trial of Amoxicillin for two months....she had improvment in joint pain when she took Amoxicillin for strep throat...so he just wanted to try Amoxicillin and see if it keeps her joint pain at bay. He also mentioned starting steroids if problems arise.

She is doing well right now...her leg bruising that I took pictures of (and my Ped blew off) looks a lot like Erythema Nodosum according to her Rhuemy. And her Conjunctivitis that made her eyes bleed (which my Ped blew off)...her Rhuemy is convinced she had Iritis or Uveitis that caused the bleeding. But at the moment she doesn't have much going on...no tummy aches, eye pain, cough....just a lingering low grade temp.

So he said we are just waiting on Grace's body to give us some more clues. He did say I should watch her closely for anything...rashes, diarrhea, cough, headaches, joint pain... I am to call him right away with anything that pops up!

Lisa

 

[momofkkcg]

I had to send an e-mail to Gracie's doc today...he wanted me to gather heights and weights for him since the clinic didn't send the growth chart to the Rheumy like I asked...she has dropped from the 53rd percentile in height...(2years ago)...to the 3rd...if she doesn't grow in the next month...she falls off the chart. She is 12th for weight...she needs to gain SOMETHING in the next three months...or again...off the chart.

 

[DustyKat]

Are you leaning toward any one of the three in particular?

If the two outside of Crohns don't have delayed growth as a symptom then it seems to be pointing more in that direction.

I hope Gracie has some positive figures in the next 3 months Mum. Good luck hun, I have everything crossed!

Thinking of you, :hug:
Dusty. xxxxxxxx

 

[momofkkcg]

They are leaning towards Sarcoidosis...the Erythema Nodosum, Conjunctivitis, and joint pain are the classic triad of symptoms for children. And then she had the elevated ACE levels...which can be used in diagnosis and to montior active disease. But...she also had elevated IgD...which they usually don't see in Sarc. People with elevated IgD can have this hereditary periodic fever syndrome...but the blood test to rule that out costs 2,200.00 and the Doc didn't think it was needed just yet. And he said that people with elevated IgD usually don't have the elevated ACE levels. So they are a little stumped at the moment. I think both af these can have effects on growth...well I know for sure Sarcoid can. He wanted to see what types of symptoms she had in the next three months before figuring out what to do next. But if anything significant happens they are going to jump on it right away.

I think we will be waiting a while...the past two years she has had symtpoms they have been worse in late winter/early spring. So I guess we just wait and see.

I'm not sure if people with Crohn's have elevated ACE or IgD...I don't think so. Have you heard anyone talk of these tests??

Lisa

 

[DustyKat]

I don't recall anyone talking about these particular tests but they well may have.

I have read in the past where some people with small bowel Crohns have a rarer side effect of hyercalcaemia that causes an increase in serum ACE levels.

Dusty. xxx

 

[momofkkcg]

AAAhhhhhhh! Gracie's Rheumy called today...he took one look at her growth and changed his mind about waiting three months. He also informed me that she is spilling protein in her unrine. So tomorrow we will have a chest x-ray, UA, and some more blood work. Then we go from there...he also mentioned a GI consult but wants to wait for the results. It scared me when the Doctor called me directly...not used to that! He also said he was going to call her Pediatrician.....sure would like to be the mouse in the corner for that call! But hopefully now her Ped will get on board and help take good care of Grace or we will have to find someone else!

Lisa

 

[AZMOM]

Well I hate that he scared you but am glad they are continuing to check things out. We'll be thinking of you. :ybiggrin:

J.

 

[Dexky]

I'm glad she won't be waiting 3 months! There's too much potential for problems to fester! I know you're scared Lisa but I'm glad they are taking Gracie's problems seriously. I hope you'll soon have the right answers and thus the right treatment!

 

[DustyKat]

Hey Lisa,

As scary as it is hun it's good to know that they are going on the offensive. Good luck and keep us posted!

Thinking of you, :hug:
Dusty. xxxxxxxx