# Second Opinion Immunology Appointment



## DanceMom (Apr 2, 2015)

We met with our second opinion Immunologist today and I really liked her.  She's very matter-of-fact and really seems to know her stuff.  Unfortunately our hospital sent A's records via snail mail and the doctor didn't have time to review things very thoroughly.  However, she took a very detailed history and gave her opinions based on the information she had.

One question she asked that I've never been asked before was, "Did her umbilical cord fall off within a reasonable amount of time?"  I almost choked when she asked that because it took A's cord almost 2 months to fall off!  Apparently that is a sign of immunodeficiency and poor wound healing.....I had no idea.

This doctor feels that A has two things going on - immune and autoimmune.  It is unclear to her which is causing which at this time.  She's going to take a week or so to really look through her records and possibly order some more tests.

She found the Group B strep infection very interesting and said there is no literature relating it to a particular immunodeficiency.  She does have a few other kids that battle the same infection but theirs is linked to a clotting disorder of some sort....which A does not have.

At this time she thinks A is receiving appropriate treatment.  We did discuss the option of subQ, but A may not be a good candidate because she has very little body fat, particularly in her stomach which is a common infusion site.  She felt the only issue with our current plan was the solumedrol and wants us to try to discontinue that after a few more infusions.  She's concerned about the long-term effects.

I'm glad that our current plan is sufficient, but it is definitely important to get more details so we know what to expect for the future.  This doctor did rave about our GI (we already knew he was fabulous! lol) also stating that she doesn't care for most doctors (I tend to agree!).  Can't wait to hear back from her!


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## Farmwife (Apr 2, 2015)

I'm so glad it was a good meeting.
Did she seems concerned with A's height and weight?


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## Maya142 (Apr 2, 2015)

Glad it went well!


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## DanceMom (Apr 2, 2015)

We didn't really discuss height/weight much. She did mention that many kids with immunodeficiency are on the smaller side. A has lost a little weight recently, but she's feeling good and has plenty of energy so I'm not too concerned. I'm starting to get used to the fluctuations.


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## kimmidwife (Apr 3, 2015)

Dancemom,
That is wonderful news! This doctor sounds like a keeper! I will be curious to hear what she says after she reviews the records more thoroughly.


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## DustyKat (Apr 5, 2015)

So happy that the appointment went well and you walked away satisfied DanceMom, and there is nothing better than having opinions validated...that is priceless! :heart: 

That is really interesting about the umbilical cord. I have never heard of that either. 

I hope A continues to feel well hun, lord knows your lass deserves a long and lasting break, bless her. :ghug: 

Dusty. xxx


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## DanceMom (Apr 11, 2015)

So I never received a call from the new doctor. I'll give her a few more days before bugging her.

A had been feeling great....but big dance competition just a few days before her infusion and things are starting to fall apart. She's backstage for her trio and I get a phone call from one of her teammates that her eye is starting to swell. I run and give her benadryl but the poor girl does the dance with her eye nearly swollen shut. They manage to place second (my girl is a trooper!). Then her feet break out in painful hives....but she manages to dance beautifully in her group dance and they place 3rd. Before the end of the night she informs me that her rash is back....looks like strep again.  Two more dances to go this weekend!!


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## CarolinAlaska (Apr 11, 2015)

That is awful!  Could stress be triggering this, like anxiety before a performance causing hives?


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## Sascot (Apr 11, 2015)

Poor thing. Well done to her being able to keep going!


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## Farmwife (Apr 11, 2015)

Sweating can trigger my hives.
I'm glad she pulled thru but sorry she has to go through this.

HUGS


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## DanceMom (Apr 11, 2015)

These are the autoimmune issues we're concerned about - hives, swelling, etc. She's been dancing competitively for 6 years so she doesn't get major stress from these competitions.  We've noticed these symptoms seem to come right before infusions and when she has a virus or infection. I think her immune system knows it's supposed to be doing something but turns on itself instead. Frustrating.


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## Farmwife (Apr 11, 2015)

Ya, that makes sense. 
I know your still in the process of figuring out things but do you know what she'll have to live with or what will go in remission?
 Sorry just don't know a lot about this stuff. 
Your the one teaching all of us.


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## DanceMom (Apr 11, 2015)

I'm really not sure if there is a "remission". Her IgG has been declining so it's possible that this month her trough levels are inadequate. We'll know in about a week. I'm not sure what the answer is for the autoimmune stuff. I do know that doping her up on benadryl isn't ideal. And if this turns out to be strep again we may be looking at long-term antibiotics as well. Trying to be patient while I'm waiting to hear back from the doctor.


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## lisadc1 (Apr 11, 2015)

So glad you like the new dr.! Interesting about the cord time to fall off. When my youngest, Kaitlyn, was born, her cord also took a long time to fall off - 4 weeks. She had lots of allergy/asthma issues and her specialist diagnosed her at 9 months with asthma. He, too, told us that it was an indicator of health issues, for her, the lungs and allergies. And now, she also has early crohns symptoms/markers/results...

Hope you hear back from the dr soon! Let us know how she is doing, please.


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## kimmidwife (Apr 11, 2015)

Sorry to hear she is going through this. Wish we had some answes for you. Keep us,posted what the new doc says.


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## DanceMom (Apr 13, 2015)

A isn't feeling too well today- stomach cramps, looks like skin infection may be progressing, sleeping a lot. At her infusion now so hopefully this gives her the boost she needs.


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## kimmidwife (Apr 13, 2015)

Sending a prayer that the infusion helps!!!!


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## araceli (Apr 13, 2015)

I hope she wakes up full of energy and feeling great. Sending prayers.


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## Farmwife (Apr 13, 2015)

Prayers here also.:hug:


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## CarolinAlaska (Apr 14, 2015)

Sorry to hear it.  I hope the infusion starts turning things around!


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## Sascot (Apr 14, 2015)

Hope she feels better after the infusion


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## DanceMom (Apr 16, 2015)

IVIG is like a light switch for my girl!  The very next day she was full of energy and her skin infection was already improving.  She had some stomach cramps before the infusion and some nausea afterwards, so I'm not sure what to make of that.  Hoping that the nausea was just a side effect because I'm almost positive she didn't drink enough water....stubborn little thing.  We should get lab results in the next 48 hours so we'll see what they look like.

Still no word from the new Immunologist.  Left a message this afternoon so anxiously waiting for a call back.


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## DanceMom (Apr 17, 2015)

A is being treated for a probable UTI. She's in a lot of pain so we're starting antibiotics and will get culture results on Monday. If it's positive she'll need an ultrasound of her bladder and kidneys to look for structural abnormalities. Always something right?


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## Farmwife (Apr 17, 2015)

Yup, always something. Grace went thru this 6 or so months ago.

There are some bladder test that is done thru catheter. 
You might want to make sure a head of time if this will happen. 
I just want you and A to be prepared.
 I no longer will let them "spring" stuff on us at the last minute. 
It's just to traumatic for her and us.

I hope she feels better soon.


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## Catherine (Apr 18, 2015)

Farmwife said:


> Yup, always something. Grace went thru this 6 or so months ago.
> 
> There are some bladder test that is done thru catheter.
> You might want to make sure a head of time if this will happen.
> ...


We had that test done with the middle child.  They were looking for urinary reflux which they found.  Urinary reflux is the most common cause UTI in children.

This test is traumatic for any child past toilet training.   I can only imagine how hard it would have been without any preparation.


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## Farmwife (Apr 18, 2015)

Catherine said:


> We had that test done with the middle child.  They were looking for urinary reflux which they found.  Urinary reflux is the most common cause UTI in children.
> 
> This test is traumatic for any child past toilet training.   I can only imagine how hard it would have been without any preparation.



No Catherine, Grace didn't go thru that. We were told about it but since all Grace's cultures never show infection she didn't need the test.


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## DanceMom (Apr 18, 2015)

Got A's lab results and all looks well except an elevated AST.  This happened a few months ago then it went back within normal range. She just has a picky liver. Even her IgG went up so I'm very pleased with that.

She's feeling improvement after just one Cefdinir (antibiotic) pill. Thank goodness for that!


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## CarolinAlaska (Apr 18, 2015)

DanceMom said:


> Got A's lab results and all looks well except an elevated AST.  This happened a few months ago then it went back within normal range. She just has a picky liver. Even her IgG went up so I'm very pleased with that.
> 
> She's feeling improvement after just one Cefdinir (antibiotic) pill. Thank goodness for that!


Cefdinir can cause stool to turn orange - just in case it happens and you aren't aware.


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## DanceMom (Apr 19, 2015)

So I admit, I have googling problems. But when A told me today that she leaks urine and has been making homemade "pads" out of toilet paper I became very concerned. In my reading I came across "vaginal fistulas". Anyone have any experience with this? I could be way off, and hopefully I am, but as much as I believe recurring UTIs are typical of a PID I've had 3 doctors tell me they aren't.


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## Farmwife (Apr 19, 2015)

Yes, docs considered that for Grace but she cleared that hurdle.
But Grace was dx with Bladder and Bowel Dysfunction.
The Urologist believes that Grace's nerves are effected by her disease because of pressure and pain in her pelvic area over the years. She also has IC (bladder inflammation) which is not normally see in children this young but does happen.
I bought panty liners (small) and put them in. Can you ask A that when she sneezes does leak a good amount of urine (as in she needs to change quickly).

Has she seen a Urologist????


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## DanceMom (Apr 19, 2015)

I'd really like to believe that the UTIs (if this current issue is indeed a UTI...we'll find out for sure tomorrow) and vaginal/perianal infections and inflammation are all because her immune system sucks. It makes sense to me. The doctors don't think so, but A has never been a textbook patient.  I did read about IC, but that just doesn't sound like what we're dealing with. She claims the urine leaks randomly....she doesn't really feel it come out but then her panties are wet.  I did realize she was going through several pairs a day but I guess it never dawned on me to ask why. I asked her if it's an issue of needing to go suddenly and urgently and not making it in time but she says it isn't. We haven't seen a Urologist, and I'm not sure if that goes with the ultrasound or perhaps after. This is new territory for me.


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## pdx (Apr 19, 2015)

Just wanted to add that my 10-year-old daughter (without IBD) was having vaginal pain and leaking for several weeks a few months ago.  (She was also doing the homemade toilet paper pads.)  She was tested for UTI and yeast and vaginal infections and all were negative.  It turned out to be just vulvitis, caused by taking baths with too much soap and shampoo, and the leaking was vaginal discharge (it was quite heavy).  Evidently it's common in girls pre-puberty.  She took baking soda baths, and used hydrocortisone cream, and it was over within a week.


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## DanceMom (Apr 20, 2015)

The Pedi nurse called and said the culture was negative.  I'm pretty baffled by that.  A had blood when wiping on Friday....started the antibiotic Friday night....then the blood stopped.  She's still in a lot of pain but feels better than she did initially (except her back....she could barely sleep last night).  She's nowhere near puberty so I know that's not it.  The Pedi suggested sitz baths but that isn't really getting at the problem (though I'm not sure what the problem is exactly).  All I know is that her urine was dark orange/red and smelled putrid....it still smells but is now a medium yellow color.  I'm not going to stop the antibiotics despite the Pedi's recommendations.  Baths won't cut it.

The new Immunologist wants another Fecal Cal and Alpha-1 Antitrypsin (stool test).  She told the GI she is considering Vasculitis, IBD, and PID.  All of these sound eerily familiar.  She's responded very well to IVIG so I'm not sure how that fits into the picture.

I'm frustrated today and just want to pout.

*UPDATE* - Pedi nurse called back and they believe it is a UTI caused by yeast.  Apparently that wouldn't show in a culture.  I knew baths weren't the answer.....


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## CarolinAlaska (Apr 20, 2015)

Did she take any meds for urinary tract pain?  They frequently will turn your urine dark orange...

Yeast infections... nasty.  Antibiotics can make these worse.  Makes sense.


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## DanceMom (Apr 20, 2015)

No, I don't give her any OTC meds like AZO.  She had red/orange urine and visible blood with wiping.  I probably would have thought she were getting her cycle except she physically looks 7 and nowhere near puberty.


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## CarolinAlaska (Apr 20, 2015)

I hope the new med works quick.


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## DanceMom (Apr 20, 2015)

Always get copies of labs!!! I picked up a copy of A's urinalysis and it was far from normal. Urine was described as "turbid" with a high pH. Also 30,000-50,000 bacteria were found which indicates a mild infection. Some labs won't report as a UTI unless 100,000 are found, but since A is symptomatic and was tested approximately 10 hours after symptoms began....I think it's safe to say she has an infection. I won't be pushing for further testing through the Pedi, but if this happens again we'll go straight to a Urologist.  Don't tell me my child needs sitz baths.....


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## Sascot (Apr 20, 2015)

So frustrating when something shows up but lab/doc doesn't say anything. My favourite from the GP is 'acceptable' results, drives me nuts. Hope the infection clears up soon


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## kimmidwife (Apr 21, 2015)

Dancemom,
That is terrible! Glad you got the results and you decided to continue the antibiotics!


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## CarolinAlaska (Apr 21, 2015)

Are they giving her anything for the presumed yeast?


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## DanceMom (Apr 21, 2015)

We were told to use Lotrimin cream.....but I don't think we're dealing with a yeast infection.  Something is off because she's been getting random bouts of severe nausea (doesn't vomit but will occasionally burp) and her back is really bothering her (not stiff, just painful).  She says her stools look normal and typically diarrhea is her first indication of a problem.  She has me stumped.  We're going to try for the stool tests this week so maybe that will provide some answers.


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## Catherine (Apr 21, 2015)

When is the ultrasound?  I thinking kidney infection is possibility due to the back pain and nausea.   You don't always have a fever.


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## DanceMom (Apr 21, 2015)

No ultrasound now since the Pedi doesn't consider this an infection. I'm not sure what the problem is. I just know something is wrong and I'm praying antibiotics is the answer. Can we do stool tests on antibiotics?


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## kimmidwife (Apr 21, 2015)

Yes Dancemom they should still be okay to do.


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## CarolinAlaska (Apr 21, 2015)

Does she have fever?  Once I thought I had a kidney infection it turned out to be pneumonia.  I had crazy fevers then and got real sick fast.


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## DanceMom (Apr 22, 2015)

No fevers.  She texted me from school and said she's having diarrhea.  This could be a virus...I know 2 other girls at her studio have been sick with a stomach bug.  Just bad timing.  She has a very exciting field trip on Friday.

Stool test #1 done and in the freezer, lol.  The lab will be quite shocked when they see this red poo! lol


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## my little penguin (Apr 22, 2015)

Omnicef equals red pooh and diarrhea for most 
Hope she feels better


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## DanceMom (Apr 22, 2015)

I realize that about the red stool MLP, but Quest doesn't know she's on Cefdinir.  It just looks rather shocking is what I meant.

Antibiotics have never given A diarrhea before and I don't think that is the cause this time either.  Something has been brewing since last Wednesday (before she started the medication).


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## kimmidwife (Apr 22, 2015)

Hope she makes the field trip!!!! These diseases stink!!!!


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## Maya142 (Apr 22, 2015)

There's a stomach bug going around here too. Another thought though - if the diarrhea started after the antibiotics, could it be CDiff? Fwiw, M has been on antibiotics several times over the years but only gotten such bad diarrhea and CDiff once.

Really hope she feels better soon and makes it to the field trip!


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## Catherine (Apr 22, 2015)

DanceMom said:


> No ultrasound now since the Pedi doesn't consider this an infection. I'm not sure what the problem is. I just know something is wrong and I'm praying antibiotics is the answer. Can we do stool tests on antibiotics?



I don't know about stool test.

But UTI culture needs to done before starting antibiotics.  Otherwise the sample may not grow.


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## CarolinAlaska (Apr 23, 2015)

Catherine said:


> I don't know about stool test.
> 
> But UTI culture needs to done before starting antibiotics.  Otherwise the sample may not grow.


They may already be doing one, but if not, it's too late.


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## DanceMom (Apr 23, 2015)

The urine culture showed 30,000-50,000 bacteria of mixed flora.  I observed her cleaning herself before she urinated so I don't believe contamination was an issue.  The stool tests (requested by Immunologist but ordered by GI.....neither are aware of possible UTI issue) ordered are fecal calprotectin and alpha-1 antitrypsin.  Both are in my freezer (lucky me) waiting to be turned in tomorrow morning.  She's feeling much better today, GI-wise, so hopefully she just had a touch of a virus and things have now settled.  Still having back and urinary pain.  Field trip still on for tomorrow!


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## CarolinAlaska (Apr 23, 2015)

I'm so glad she's feeling better GI-wise.  Did she have any blood or hemoglobin in her urine?


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## kimmidwife (Apr 23, 2015)

Glad her stomach is better today!


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## DanceMom (Apr 27, 2015)

So here's where we stand: Random bouts of intense nausea, almost daily, but never vomits. Diarrhea 4-6 times per day, with urgency but no cramps. Had a BM in her pants today. Stomach pain is minimal but back pain is moderate. No blood, no fevers.

I realize you all don't have a crystal ball, but this is all so frustrating. Still waiting on stool tests to come back, but I'm going to message the GI to make him aware. If fecal cal comes back normal I'm not sure where the problem lies. Any suggestions?


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## my little penguin (Apr 27, 2015)

Nephrologist given all her uti issues


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## Farmwife (Apr 27, 2015)

I still would get an Urologist on board.
Poor A, I know you feel like you already have enough docs.
Is there still pain when she pees?

HUGS


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## DanceMom (Apr 27, 2015)

No urinary pain at this time. I will talk to GI about seeing a Urologist if the pain/infection returns. I know he can have us worked in quickly if need be. Would bladder inflammation cause nausea and diarrhea?


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## my little penguin (Apr 27, 2015)

Yes
It was the first thing the GI checked for
So would kidney issues ( back pain)


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## Farmwife (Apr 27, 2015)

my little penguin said:


> Yes
> It was the first thing the GI checked for
> So would kidney issues ( back pain)


^^^^Ditto. I would be concerned with the kidneys more right now.


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## Catherine (Apr 27, 2015)

Kidneys would also be my concern.

Still remember the specialist surgeon telling us that UTI are not normal in children and they use to be called the "Honeymoon Disease".

http://www.patient.co.uk/doctor/recurrent-urinary-tract-infection


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## kimmidwife (Apr 27, 2015)

I have to agree with the others. I would be very concerned about a kidney infection right now with her having back pain. I would take her in to be seen tomorrow by someone you cannot play around with kidney infections they can become very serious very fast.


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## DanceMom (Apr 28, 2015)

She woke up pretty puny (and grouchy) this morning so I emailed the GI.  I'll update after I hear back from him.


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## kimmidwife (Apr 28, 2015)

Thinking of you guys! Keep us posted!


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## DanceMom (Apr 29, 2015)

No word from the GI yet, which is unusual.  He usually responds right away.  Must be waiting on stool results to better guide his decisions.

A had a decent day yesterday.  Only had diarrhea twice and actually had one normal stool.  Back is the same, stomach felt fine.  Said she's starting to have a little discomfort with urination so definitely going to watch that.  And try to be patient.....


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## Mehita (Apr 29, 2015)

Makes me a little sad that a decent day still involves two bouts of diarrhea. Poor thing. Sending hugs and patience...


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## DanceMom (Apr 30, 2015)

A had a great day yesterday.  Full of energy and only one loose stool.  Today is already a disaster.  She woke up limping with knee pain and grumbling that her stomach hurt.  Then her eye started to swell.  She's just a mess but insisted on going to school.  I doubt we'll hear from GI today because Thursdays are procedure days.  I just want answers.....and a solution.

UPDATE: Teacher emailed me and asked that A be picked up.  Teacher hardly ever notices if things are off but said her eye was still swollen and she didn't look well.  She just has this gray tone lately with dark eyes.  She has a very important ballet test coming up this weekend that she wants to be well for.  She's been studying very hard for this test and all she can think about is "I hope I don't poop myself."  Frustrated is an understatement.


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## pdx (Apr 30, 2015)

So sorry that your daughter is having such a rough time.  Hope you hear back from the doctor soon.


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## my little penguin (Apr 30, 2015)

Hugs
Hope you find some answers soon


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## kimmidwife (Apr 30, 2015)

Really hope you hear back soon!
I just found out that one of the other homeschool families that comes to a lot of programs we attend their son has CVID immune disorder. He has been doing well being homeschooled which somewhat limits the germs he is exposed to. Until now he has not had IVIG but they are discussing starting it.


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## DanceMom (Apr 30, 2015)

We're trying 2 weeks of Flagyl and consistent Zofran. Flagyl always helps so I have high hopes.


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## DanceMom (May 3, 2015)

Alpha-1 Antitrypsin was normal. Still waiting on Fecal Cal. 3 days on Flagyl and I already see an improvement. And.....she passed her ballet exam! Had a great weekend and hoping for an even better week!


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## Sascot (May 4, 2015)

Glad the Flagyl is helping. Well done to A for the ballet exam!


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## DanceMom (May 5, 2015)

Fecal Cal was only 15.  Both stool tests were lowest they've ever been.  I have no idea what was causing her to feel so ill, but the Flagyl is helping and she no longer needs the Zofran.  Stools are normal and she feels great.  My only concern is that the Flagyl will one day lose its effectiveness.


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## my little penguin (May 5, 2015)

Flagyl helped DS 
Fecal cal was also around 21
Turns out something was irritating his gut ( either bad bacteria or food etc)
In the process of trying to fix/figure that out 

Good luck


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## DanceMom (May 5, 2015)

I'm assuming bacteria MLP, but nothing has ever shown up when testing stool for specific bacteria or parasites.  Could it be possible that she has some sort of overgrowth of normal bacteria that is causing problems?  Or some rare bacteria that isn't tested for?  It just didn't seem like a virus and no one else in our home was sick.


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## my little penguin (May 5, 2015)

We pulled all foid for two weeks then are adding one food at a time back in
Every few days
Seems to be working
He was cycling in and out of pain /gi issues since dec 
But now that isn't a problem 
Things have calmed down wothout flagyl 
Also having immunodefeciency workup done on him per his allergist request .


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## DanceMom (May 5, 2015)

I'm sorry he was having issues so long.  I know how awful that is to watch and feel helpless.  A has done really well since starting IVIG in August until this blip.  I've always felt like she has bacteria that affects her but is harmless in others.  That's just my odd Mommy hunch.

I'd love to know what the work-up includes MLP.  A is supposed to have additional testing done at her next infusion but I have no idea what that entails yet.


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## my little penguin (May 5, 2015)

Just starting do basic labs first 
IgG IgE IgM and IgA
Then we will go from there if needed
Right now the theory is more drug related and less immunodefeciency but they want to cover their bases 
Depending on the tests results or other things then allergist will change the plan.

I know his iga was very low when he was little but he was under 4 and his other allergies were a mess at the time so not really useful


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## DanceMom (May 5, 2015)

I know some doctors test IgG subclasses to see if there is a deficiency there but A has never had that done.  In fact, she's never had IgE checked either.  Keep us posted on those results.


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## Sascot (May 6, 2015)

Glad she is feeling better on the Flagyl


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## DanceMom (May 8, 2015)

A woke up with diarrhea/nausea this morning so back to the Zofran it is.  She is scheduled for her infusion on Monday so this is probably just a short blip.  I also need to keep reminding myself that EVERYONE gets diarrhea from time to time.  

There's some confusion about who is ordering the extra labs our new Immunologist wants done so hopefully we can get things worked out and have those drawn Monday morning.  I'd prefer her not to be poked an extra time if we can help it.


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## DanceMom (May 11, 2015)

A had her infusion today and has gained 2 lbs in the last 4 weeks! I credit the Flagyl. That stuff just works for her. The Immunologist decided not to order any extra labs so I'm hoping we'll hear from her soon. Meanwhile, A is doing good (diarrhea the other day went away as quickly as it came) other than being cranky from the meds.

Question....Do your kids wake up in the night to pee? Like regularly? A wakes up every single night, at least once, to pee. I never thought too much of it until I mentioned it to a friend and she commented that it seemed odd.


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## my little penguin (May 11, 2015)

Kids shouldn't wake up ever to pee  at night


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## Farmwife (May 11, 2015)

Grace does when her IC it's flaring.


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## Sascot (May 11, 2015)

my son wakes almost every night but then he does drink a lot right up till bedtime


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## DanceMom (May 11, 2015)

A wet the bed until she was 6. We were told that was normal and she just had a weak bladder. At 6 she stopped wetting and slept through the night. About a year ago she started waking to pee and I just never thought much of it. I'm not willing to put her on meds for an overactive bladder, but I was curious if it could be a sign of something greater.


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## kimmidwife (May 11, 2015)

DanceMom,
My daughter also wakes up to pee most nights as well. She also was a late potty trainer. We were told she had a small bladder and that it is normal in some kids.


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## DanceMom (May 12, 2015)

Most of A's labs are back (still waiting on IgG level).  Most things look great.  Her liver is happy again!  Globulin is lowest it has been since being on IVIG so that makes me a tad nervous but we'll see.  TcO2 is low at 17 (19-30).  It has been low in the past, off and on, but not since late October.  Anyone else have low TcO2 from time to time?


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## kimmidwife (May 12, 2015)

We don't. But doesn't she have asthma as well? Maybe that could cause it?


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## DanceMom (May 13, 2015)

Her asthma is very much under control right now, but she does tend to flare without the typical signs. I'll keep an eye on that. You know me....just don't like anything to be in the red! Lol Still waiting on the darn IgG.


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## DanceMom (May 15, 2015)

IgG is down to 886 (821-1835).  Was 999 last month.  I'm not sure if it is low enough to cause her symptoms, but she's still experiencing random bouts of nausea and we're wrapping up the Flagyl today.  Both Immunologists have said that anything over 800 is acceptable to them as long as she is symptom-free....but in my opinion she is no longer symptom-free.  I'm going to call the new Immuno today because I STILL haven't heard back from her.  Beginning to lose my patience here.....

Update: Left message with the Immuno and emailed the GI.  She's now vomiting.  I have Zofran to give her but these bouts hit so suddenly and we can't always get the medicine in her quick enough.  What the heck?!?  Perfectly fine one mine....then pale as a ghost, doubled over the next.....then vomits within just a few minutes.  After she vomits she feels just fine and goes on about her day.  I could give Zofran regularly again but I'm starting to get a little concerned and think that finding the cause for the vomiting is important.


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## DanceMom (May 15, 2015)

Immuno nurse called, said I should hear from the doctor on Monday. Tonight she called me into the bathroom, panicked, because there was fresh red blood on the toilet paper. She's had blood in her stools before, but never blood like that when wiping. Fissure? I don't see anything and she says there's no pain. This child is stressing me out. Lol


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## DanceMom (May 19, 2015)

So this is how my day has gone.....

Over a month ago A started with diarrhea and nausea.  I waited 2 weeks before contacting GI (because I know these things sometimes just happen, then go away) and he started her on Flagyl.  Initially she responded well and all symptoms disappeared.  A few days before finishing her course the nausea returned, this time with vomiting.  On her final day of Flagyl I emailed an update to the GI.  Someone from his office responded today with: "Flagyl can cause nausea.  Let's see how she does without it."  Am I crazy or are they stupid?  She's had nausea for over a month now (minus about a week when she first started Flagyl)....before the Flagyl, while on Flagyl, and now after Flagyl.  GI is on vacation, so I don't know if he's still checking messages, spoke to the nurse and told her what to say back to me, or the nurse is just a moron.  Either way, I'd love to bottle her vomit and send it to them in a cute little package with a bow.


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## Sascot (May 19, 2015)

Sorry things are no further forward. Sometimes I think the docs hope if they leave it long enough things would magically fix themselves.


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## DanceMom (May 19, 2015)

And they may....she's known to be sick one day then fine the next.  She's maintaining okay....goes to school, she's happy and plays.  But I can always tell how she's feeling by how she dances/tumbles.  When she asks to leave the studio early I know things aren't good.  When she can only do 2 back handsprings instead of 5 or 6 I know something isn't right.  So while she isn't super sick and doesn't need to be seen immediately, I just know that something is going on and if I don't speak up for her then it will likely continue.  I don't mind waiting a little longer I just don't want to go in circles.  If this is par for the course with immunodeficiencies I just want to know that so I can expect it and help her accept it.  The poor kid just got a new zebra keychain and named it Zofran.....


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## kimmidwife (May 19, 2015)

Your poor baby! Hope she is feeling better soon and you get some answers!!!


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## DanceMom (May 20, 2015)

Well, we now have a second opinion. I spoke with the doctor this afternoon. She knows that A has Hypogammaglobulinemia, she just isn't sure if it is primary or secondary. She feels that systemic vasculitis has not been ruled out and wants a CTA done. If all secondary causes are ruled out she will deem it a primary immunodeficiency.

At this time she wants to keep treatment the same but would like to drop the solumedrol as a pre-med. She thinks it's been masking symptoms that may just now be starting to peek through. Our other doctor thinks it's too risky to drop it and thinks A suffered from aseptic meningitis after one of her infusions. I feel torn. I think I will ask to drop it but also slow the rate and give Tylenol and Benadryl post-meds. I will feel awful if she has a bad reaction again though. 

A is very upset about the CTA. She's scared and just wants to be left alone. This is tough.


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## DustyKat (May 21, 2015)

Feel so for you and your lass, DanceMom, bless you both. :ghug::ghug::ghug: 

Such tough choices to make and made all the worse because we don’t make them for ourselves.  

:hang: Mum, you are in our thoughts. :heart: 

Dusty. xxx


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## DanceMom (May 21, 2015)

Today A woke up with a sore throat.  Looked a little red but she was very whiny so I let her stay home.  After being home about an hour her eye started swelling shut again.  What the heck?!?  Why does her eye swell every time she gets any sort of illness???


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## my little penguin (May 21, 2015)

Has she seen an opthamalogist when Her eyes were actually swelling?
Not uncommon when inflammation infection is overloading the body for the eye to show it .


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## DanceMom (May 21, 2015)

No, she saw an ophthalmologist a few years ago (maybe 2?) and everything appeared normal.  It is just bizarre to me how labs can look normal but she just starts swelling.  Benadryl reduces the swelling some if taken quick enough, but I just don't understand what makes her swell in the first place.  I mean, they can swell completely shut in 15 minutes.


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## my little penguin (May 21, 2015)

The opthamologist can give you an idea of what going on .
But she needs seen during a swelling incidence 
They see things in the back of the eye etc...


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## my little penguin (May 21, 2015)

DS used to swell that bad that you couldn't get any drops in at all from age 3 on . While on antihistamines


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## kimmidwife (May 21, 2015)

I wish I had answers for you! Sending you both a big hug!


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## Mr chicken (May 23, 2015)

How are her eyes today ?
 Did the Benadryl work ?
 Have they tried topical steroid drops to make sure the inflammation is staying away ?
 Ds is on fml drops 2-3 times a week in the winter on 7 days a week in the summer 
He has had swelling that bad in years 
Patanol 3-4 times a day worked for him when combined with allergy shots

How long again was she allergy tested for pollens ?
More than a year ??


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## DanceMom (May 23, 2015)

Eyes are fine now, benadryl helped (and she's over the virus). It's been a few years since she's had allergy testing but this definitely isn't caused by pollen or environmental allergies. Her eyes aren't red, watery, or itchy. Patanol had no effect. We've been given a vague autoimmune explanation. Perhaps the CTA will provide more answers.


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## DanceMom (May 27, 2015)

A has done well over the past few days.  Only thing off is her appetite and she's lost 2 lbs.  She seems to have energy though and gym tonight will be telling.  Waiting on the GI to order the CTA so we can schedule it.  I just want it done and over with.

A bit of exciting news.....A has been asked to speak at a local plasma donation center!  She's very excited to share her story and tour the center.  We have a few weeks to prepare her speech and of course buy a new dress, lol.


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## DanceMom (Jun 2, 2015)

GI emailed and said he is deciding between CTA and standard angiogram.  From what I understand (by googling, lol) the CTA really isn't so bad and is similar to the MRA that she's already had.  A standard IV is started with dye given through the IV.  The standard angiogram would require an IV through the groin and a longer recovery (laying still for 6+ hours after procedure, clean bandage for 48 hours, 1 week of physical limitations).  He wanted to consult with some other doctors and said he would get back to me in a week or so.  I just want what is best for her.


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## Mr chicken (Jun 2, 2015)

If it's a test for vasculitis why isn't the Rheumotologist handling it ???
Since that is their area


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## DanceMom (Jun 2, 2015)

These tests are being requested by our 2nd opinion Immunologist who has been in direct contact with our GI.  He is the one that advised us to seek out a second opinion and suggested this particular physician.  She respects our GI a great deal and has a good relationship with him.  Our Immunologist/Rheumatologist isn't as responsive and his team sorta sucks.  It took them 2 months to get an MRA partially approved.  We showed up for our appointment and we could only get the pelvic MRA, not the abdominal one.  When I spoke to the Immunologist she advised me to work with the GI on ordering these tests.  Either doctor could order it but the GI has a more efficient team, he seeks out many different opinions as to what would be best, and he will get the results in a timely manner.


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## Mr chicken (Jun 2, 2015)

Makes more sense
Hope they get it scheduled quickly


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## DanceMom (Jun 9, 2015)

Haven't heard back from the GI yet regarding testing so I emailed him.  I just want it over with so we can move on.  I fully expect results to be normal, but if they aren't then we need to know ASAP so we can change/adjust treatment.

A was doing really well until yesterday.  Long story short she's due for her infusion this week.  We usually do Mondays but I pushed back until Wednesday for several reasons.  Yesterday she started with stomach pain, uncontrollable diarrhea, lack of appetite, fatigue, moodiness, painful lumps on her arms.....all very familiar things.  It's funny how you can almost forget (or doubt) your child has a chronic illness when the medicine really works.


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## DanceMom (Jun 9, 2015)

GI already emailed back.  Said he wants to go with the angiogram.  Immediate knots in my stomach.  Recital is coming up, vacation, then Nationals....so hoping to schedule for mid-July.


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## kimmidwife (Jun 9, 2015)

Dancemom,
I second that feeling!


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## Sascot (Jun 10, 2015)

So sorry to hear that. Really hope the test goes well and they can schedule it when she doesn't have to miss out on anything.


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## Mehita (Jun 10, 2015)

DanceMom said:


> It's funny how you can almost forget (or doubt) your child has a chronic illness when the medicine really works.


I hear ya, sister!

Good luck!


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## DanceMom (Jun 11, 2015)

A had her infusion and is already feeling much better. Still has a poor appetite and lacking energy though. Last 2 days she has had very pale stools that appeared to contain blood. She did have strawberries on Monday so I'm hoping that's what we're seeing. Waiting on labs.

Update: 30 minutes ago she had the pale/red stool of normal consistency. Just now had explosive diarrhea (emphasis on explosive) that is watery with large chunks of white (undigested food?). What the heck is going on? I'd love to call the GI right now as I'm a tad bit freaked out, but she's insisting on going to dance and waiting to see if things get better or worse. Geez....


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## Farmwife (Jun 11, 2015)

Are ya sure it was food or was it mucus? Was Theo blood in that one?


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## DanceMom (Jun 11, 2015)

Definitely wasn't mucus. Not positive it was food but I can't imagine what else it'd be. There appeared to be small flecks of blood. She says she feels fine but obviously she's not fine.  No one that is "fine" explodes all over the bathroom like that. I'll give it more time before calling the GI. I wish her labs gave a more accurate picture of what's going on.


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## DanceMom (Jun 12, 2015)

A's CBC is a little concerning to me. I have a message in to the doctor but of course I want to know what you all think.

WBC 3.3 (4.5-13.5)
Absolute Neutrophils 1330 (1500-8000)
Absolute Lymphocytes 1439 (1500-6500)

Update: GI didn't seem concerned because hemoglobin was normal.  Said to give it 5-7 more days and if she was still having symptoms we could do Flagyl.


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## Farmwife (Jun 12, 2015)

That's what Grace runs normally on her CBC.
I was told it was because of her meds.

Is she still having symptoms?


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## DanceMom (Jun 12, 2015)

A's WBCs are often low (4-4.5) but never this low.  Lymphocytes are sometimes low as well and have been lower (1200s).  But Neutrophils have never been low.  It concerns me that all 3 are low.  The only medicine she's on is Flonase and Privigen.  Maybe the Privigen gave her system a little boost and her numbers have come up....I have no idea.  Our Immunologist probably doesn't even look at the labs he orders.

She's still having diarrhea but only 2-3 times per day.  Haven't seen any blood today.  She's been feeling good since Wednesday so we went swimming a few hours today.  Now she's back to being curled in a ball with a tummy ache and headache.  Keep her in the house and she gets angry that she can't be a normal kid.  Let her go out and be a normal kid and she suffers the consequences of feeling sick.  Can't win.


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## DanceMom (Jun 13, 2015)

Immunologist emailed and said it is to be expected with her immune deficiency. She's considered "mildly neutropenic" and at that point there isn't much to be done. A lot of watching and waiting.....


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## kimmidwife (Jun 13, 2015)

Dancemom,
Very glad the immunologist emailed you. I was wondering if it might be a normal thing with her immune disorder. Hope she is feeling better!


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## DanceMom (Jun 14, 2015)

GI emailed about angiogram. They are working on getting insurance approval. I will call this coming week to try to schedule. She will have to lay flat and still for 6 hours after the procedure as a precaution. If things don't go perfectly we'll stay overnight.

A has been doing normal kid things but her attitude is hard to manage. She's cranky and irritable and not real fun to be around. I want my sweet and healthy girl back!


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## kimmidwife (Jun 14, 2015)

Hope she feels better! Good luck with the procedure. Hopefully all
goes smoothly!


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## Maya142 (Jun 15, 2015)

Your poor girl, sounds like quite a procedure. Hope it all goes smoothly and gives you some solid answers.
Good luck!!


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## araceli (Jun 15, 2015)

Best wishes on the procedure and hopefully you find answers.


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## Maya142 (Jun 15, 2015)

Came across this while researching - not sure if you'd seen it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831248/


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## DanceMom (Jun 16, 2015)

Thank you Maya but A has low IgG and that article is about elevated IgG. Still an interesting read and may be helpful to someone else. The immune system is so complex....


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## Maya142 (Jun 16, 2015)

whoops sorry!

Hope A is feeling better today.


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## DanceMom (Jun 16, 2015)

A is feeling much better and working on getting her energy back. It is tough to watch her cycle and I'm not sure I'll ever get used to it. I'm working on realizing that she's in treatment and there is no cure. I so badly want her to be "normal" and these blips just suck. I'm sure you all can relate.


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## Sascot (Jun 16, 2015)

Glad she is a bit better, it's hard watching for the blips all the time. Good luck for the angiogram, hope it goes smoothly.


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## kimmidwife (Jun 16, 2015)

Dancemom,
I have to agree these blips really stink!!!! Prayers for a cure for all our kids and all kids suffering with any chronic illness.


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## DanceMom (Jun 17, 2015)

Angiogram is scheduled for next month. Will be done by the head of interventional radiology. Will most likely be admitted but we'll see. I requested a Child Life Specialist to be present because she's scared and angry. For some reason having a date puts me slightly at ease.


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## Mr chicken (Jun 17, 2015)

Does she see a therapist ?
Might be a good idea to get one started since chronic illness has lots of tests and ups/downs which are tough on kids


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## DanceMom (Jun 17, 2015)

Not yet, but I think she would really benefit from one. I'm going to ask the GI to recommend one that might be a good match for her and try to get something set up before school starts again. She just wants to be normal and I'm starting to see some anger that just breaks my heart. This journey was so much easier when she was younger.


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## Farmwife (Jun 17, 2015)

Yes, their something easier about them being younger but they don't stay young.
 I'm also starting to notice things in Grace's personality that wasn't there before.:frown:
They will always be something to do, take, feel, endure,.........

I just pray I can help her see how special she is the way she was made.

Hugs to your dd and you!


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## kimmidwife (Jun 19, 2015)

Hugs to both of you Dancemom and Farmwife! 
It is harder as they get older and have to come to terms with living with a chronic illness. We went through this as well. I found an art therapist for my daughter that really helped her. I would highly reccomend that if you can find one in your area.


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## DanceMom (Jun 19, 2015)

A was able to speak at a plasma donation center yesterday, sharing her story and spreading awareness about immune deficiencies. What an awesome experience! The staff was genuinely interested and so welcoming. The donors were very kind and seemed very happy to put a face to their donations. It was great to see A come out of her shell and be proud of her illness. Definitely hope to visit more centers! This is recital weekend and so glad A is back to her normal happy self! Going back to my happy little bubble!!


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## Farmwife (Jun 19, 2015)

:dance: enjoy your happy bubble!:dance:


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## DanceMom (Jun 23, 2015)

Still in my happy bubble! Recital was awesome and now we're enjoying vacation at the beach. This is the first year that A remained healthy through the stress and demands of recital time. Thank you IVIG!!


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## DanceMom (Jun 25, 2015)

So, in true A fashion we can't get through a vacation without an issue. Two days ago we noticed swelling under her left eye. Her eyes swell fairly regularly so we thought it was related, just lower (top of her cheekbone really). It didn't bother her so we carried on as usual. Yesterday the swelling had gone down some and it appeared to be a bite, probably from a mosquito (she reacts pretty significantly to them). Last night she started complaining of facial pain on that side. I gave Tylenol and Benadryl but neither helped much. This morning she says the pain is much worse, even affecting her ear. If I barely touch her face she cries. Any ideas?


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## kimmidwife (Jun 25, 2015)

Sounds like it could be a reaction to the bite. I would call her regular pediatrician maybe and see what they think.


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## DanceMom (Jun 25, 2015)

A started feeling worse and running a fever so I found a nearby clinic to take her to. She has a severe outer ear infection and most likely an inner ear infection as well. The outer ear is so inflamed the inner ear could not be seen. She also has a sinus infection and asthma flare. So glad I took her but so bummed she couldn't enjoy vacation to the fullest. Apparently the bite was just a bite and just threw us off a little.


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## Mr chicken (Jun 25, 2015)

Did they check her mastoid bone?
With her history make sure the press behind the ear ....


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## DanceMom (Jun 25, 2015)

I'm not sure. What are the potential concerns? She was given an oral antibiotic, prescription ear drops, and we're to give Tylenol, albuterol, and re-start her daily inhaler (we were told to take her off for the summer unless issues arise).


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## Mr chicken (Jun 25, 2015)

Immunosupressed or defeciency have a higher rate of mastoiditis which is a medical emergency.
Ear infections spread from the middle ear through the tiny canal to the mastoid bone ( porous and can later spread to the brain or blood stream or cns 
Typically the ear infection does not get better within 48 hours of abx.
Pain on the flat bone behind the ear and sometimes the neck from below the ear
There maybe a red bump behind the ear or fever


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## DanceMom (Jun 25, 2015)

We are headed home tomorrow evening, so she can be seen by the pediatrician on Saturday if she isn't better. Right now her pain is in her ear lobe, and whole left side of her face. She hasn't mentioned pain behind the ear or neck but I'll keep an eye out for that. Thank you!


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## DanceMom (Jun 26, 2015)

A feels worse today. Rarely getting off the couch. Ear drops are draining better though so I know swelling is going down some. Having trouble getting asthma under control with inhaler so hopefully nebulizer works better when we get home. No more trialling off meds!


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## CarolinAlaska (Jun 27, 2015)

I'm so sorry.  She was doing so well!  I hope she can get back to healthy really soon!


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## DanceMom (Jun 27, 2015)

Still no change. Her pediatrician is out of town so we were told to take her in on Monday if she's not better. Ear infections are not the norm for her. The only other one she's had took 3 rounds of antibiotics and a nasal spray to clear it. Also got a letter in the mail that her Immunologist is leaving the hospital. Have an email in to GI to see who he recommends as a replacement. Feeling discouraged today.


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## Farmwife (Jun 27, 2015)

No advice. Grace isn't prone ear infections either.
However my son and I do get infections from our bug bites. 
I hope she feels better. 
Poor A! Not how to spent a vacation!


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## DanceMom (Jun 29, 2015)

Took A to the pediatrician today as a follow-up.  Middle ear looks good, outer ear still infected.  She prescribed a stronger ear drop.  Asthma is still flaring so she prescribed a 5 day course of Prednisone.  Just anxious to get her feeling better.

NP called about angiogram today.  Child life will be present before sedation to make her feel more comfortable.  The procedure will last approximately 3 hours and then she'll be moved to ICU as a precaution.  Will be admitted or discharged from there.  Yikes.


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## kimmidwife (Jun 29, 2015)

Will be praying it all goes smoothly for her!!!!


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## DanceMom (Jul 1, 2015)

A is feeling much better.  Ear pain is mild and asthma is starting to improve.  Thank you Prednisone!

We have decided to see if our second opinion Immunologist will take on A since our current doctor is leaving the hospital.  She's a fabulous doctor but we've become so comfortable at our current hospital that any change is a bit scary.  I have a call in to our infusion center to see if we could continue to go there or if we'll need to move on to plan B.  A loves how our center operates and has made relationships with the nurses there.  I've urged her to consider subQ infusions and she agreed to at least think about it.  I also plan on checking into home health to see if home IV infusions are an option.  

And this weekend we leave for her National competition!  Hoping she can stay healthy and have the energy to dance her best!


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## Sascot (Jul 2, 2015)

Glad she is feeling a bit better. Change is hard, I wish my son could stay with the paediatric team forever! Good luck for the competition.


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## kimmidwife (Jul 6, 2015)

Totally know what you mean about change!!!
Good luck with the competitions!


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## DanceMom (Jul 7, 2015)

A won 1st overall for her solo! She was absolutely beautiful on stage and danced with real maturity and passion. So happy for her! Groups start today so we're hoping that goes just as well.

She feels good overall except for this overwhelming feeling that she can't catch her breath. About every 20 seconds or so she does this open mouth gasp like she's desperate for air. The prednisone helped slightly but the albuterol seems to have no effect. Not sure what's going on.


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## Farmwife (Jul 7, 2015)

So proud of A!

Is she on a maintaince med for her asthma?
A one point Grace had 4 difference meds (3 inhalers and one pill) to help her asthma.
She would also do the silent gasp.


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## DanceMom (Jul 7, 2015)

Yes, we just restarted QVar40. She also did a 5 day course of Prednisone 20 mg and we've been doing albuterol every 4 hours for about 2 weeks.


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## Farmwife (Jul 7, 2015)

We did Qvar 40 but they upped Grace to Qvar80 and that seemed to work better for awhile.
 Now she's on Symbicort daily but 
uses her Qvar80 plus albuterol during flares. 
We finally got her off her Singular but might be adding it back Grrrrrr

My mother is in awe of all these meds for asthma. My poor brother only had one or two most of his childhood and it never seemed to help much.


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## Mr chicken (Jul 7, 2015)

The qvar will take 6 weeks to be fully effective
As Fw said may need a combo inhaler with a long acting broncodilator
Like symbocort or advair
Ds needed advair for a while same reason albuterol wasn't touching it


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## kimmidwife (Jul 7, 2015)

Congrats on her win!!!!!
Call the doctor and let them know about the symptoms and see what they say.


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## DanceMom (Jul 7, 2015)

Quick dance update....A's large group placed 5th and will be recompeting in the Finals tomorrow evening! Small group is up next!

I have a call in to the Pulmo nurse. Hoping she can be seen soon.


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## DanceMom (Jul 8, 2015)

Pulmo nurse advised me to take A to the ED so I did. O2 was 98-100, respirations 35-40, pulse 100-130, and she was gasping for air every 20 seconds or so. We were told she had costochondritis and her negative chest x-ray seemed to confirm that for the doc. They gave her a shot of Toradol and advised me to give Ibuprofen (even though I expressed concern about her GI issues). Does this sound like costochondritis? She did have costochondritis several months ago with sharp pain in her lower right rib but no breathing issues. This just seems different and I'm doubting the diagnosis and prescribed treatment. Particularly since the shot had no effect. Also, her rash now covers her entire body and is very itchy. Looks viral to me but the doctor said allergies. Benadryl is having no effect and I have no idea what she'd even be reacting to. Both of her group dances made it to the Finals today and my baby just wants to dance!


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## Mr chicken (Jul 8, 2015)

Local ER or your normal hospital ER ?
Kiddie hospital ER are better


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## DanceMom (Jul 8, 2015)

We happen to be staying about 20 minutes from our children's hospital so we went there. They had complete access to her files.


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## kimmidwife (Jul 8, 2015)

Costochondrites does not cause you to gasp for air like that. Has the pulmonologist called you back?


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## DanceMom (Jul 8, 2015)

The Pulmo is the one that advised me to take her to the ED. She doesn't know A well though. Only seen her twice. The ED doc's theory is that she is so tender that she takes only shallow breaths then feels the need to gasp. Sounds logical, but her breathing just seems out of control. If prednisone didn't take care of it I'm not sure how ibuprofen will. Her infusion is tomorrow so I'm hoping the nurses there will advise. Meanwhile she's warming up for dance tonight! There is a live feed, so if anyone wants to watch just message me for the link. Starts at 5, Florida time!


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## Mr chicken (Jul 8, 2015)

Has she tried breaking into a paperbag to slow her breathing?
Or whistling ???
Blowing through pursed lips 
Drinking water slowly 
Vocal cord disfunction can occur mimics asthma attacks 
Just as scary but albuterol has no effect


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## Mr chicken (Jul 8, 2015)

http://emedicine.medscape.com/article/137782-clinical#showall



> See the list below:
> 
> Wheezing
> Cough
> ...


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## Mr chicken (Jul 8, 2015)

Fwiw my oldest has asthma and vcd 
So it can get complicated


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## DanceMom (Jul 8, 2015)

No wheezing, no cough, throat feels fine. The breathing relaxes slightly in her sleep but she still has increased respirations. We've tried all sorts of tips and tricks with no results. It's getting to the point that talking is difficult.


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## Clash (Jul 8, 2015)

Does it occur even when hr is normal? When my autonomic dysfunction is acting up and my pulse goes over 110 my breathing changes. I tend to frequently gasp due to a feeling of being SOB because of the tachycardia.

I am also a shallow breather and have had to train myself but it doesn't take away the gasping when my hr is higher. In my case, it is part of the autonomic dysfunction or dysautonomia and also includes chest pain during this time.


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## Maya142 (Jul 8, 2015)

Toradol and Advil should have helped if it was costochondritis. We've never had that kind of breathing issues and we've had a lot of experience with costochondritis.

It does sound like something else. Hope you can figure it out so she can dance.


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## DanceMom (Jul 9, 2015)

At A's infusion and her NP just came by to see her. Agreed that her lungs sound clear but wants PFTs when she's done infusing. Also, A has developed lots of redness and swelling behind her ear (not the one that was infected) and there's a concern of mastoiditis. Waiting to hear the game plan for that. The stress is unbelievable and I'm just trying to be strong.


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## Mr chicken (Jul 9, 2015)

The only way to confirm mastoiditis is a head ct ( MRI is not as effective )
Just be prepared 
If it's early iv abx for a day or two before oral abx at home


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## DanceMom (Jul 9, 2015)

Doctor looked and decided it was nothing. I guess it's totally normal to have severe redness and swelling behind your ear. Said if it isn't better in a few months to have it rechecked. Said her breathing was normal and some people just develop odd breathing patterns. He didn't think she needed PFTs. I'm glad we're switching doctors because one would need to be on his or her death bed for him to take action.


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## DanceMom (Jul 10, 2015)

We have a new Immunologist! Our second opinion doc agreed to take A as a patient and we're working on scheduling her next infusion. Such a relief! I can't tolerate doctors that discourage second opinions.

A is mostly the same but her ear looks a little worse. Waiting until Monday to see if she may need to see the pediatrician.


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## DanceMom (Jul 13, 2015)

I could throat punch our former Immunologist (thank goodness I can say "former"). Took A to the pediatrician today and she has an ear infection and three infected lymph nodes. Something he could have acknowledged and treated last week but he chose to be a douche because we got a second opinion. Hopefully the antibiotics will help and she'll feel better soon. They are holding her lab results hostage, refusing to release them to the patient portal. This Mom is about to go full ninja on them.


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## DanceMom (Jul 15, 2015)

Had GI appointment today which went really well. He was satisfied with her weight (5th percentile) and pleased with her height (11th percentile). No real GI issues at this time (YAY!!) so the plan is to keep on keeping on. We have an Immunology appointment with the new doctor in early September so I will raise my real concerns then. A's IgG continues to decline and is almost below the norm range even with infusions. Low IgG leads to infections and inflammation....and here we are.


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## kimmidwife (Jul 17, 2015)

That Doc sounds like a real Jerk!
We fired our first GI doc because her also did not believe in second opinions. We got one anyway and he refused to even consider the second guys reccomendations just kept saying her pain should be better so it must be in her head now.


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