# Good Appointment!



## DanceMom (Sep 3, 2015)

A had her Immunology appointment yesterday, and I must say that I truly love our new doctor!  She is dedicated to finding a more precise diagnosis for A and has more testing planned (pending insurance approval).  She said a diagnosis of "hypogammaglobulinemia" is comparable to a diagnosis of "anemia".  Your system is lacking something, and you can give blood products as a band-aid, but unless you find the exact cause for the deficiency you really don't have answers or a prognosis.

She was not concerned with the lymph nodes behind A's ears, but was concerned that she could feel her spleen.  She said it is only minimally enlarged at this time but she will check it again in 3 months at her next visit.  Anyone ever dealt with an enlarged spleen?  She isn't having any stomach pain at this time.

When I explained our costochondritis diagnosis to her she asked A some questions and felt that it may not be costochondritis at all.  She ordered an echo to rule out pericarditis and myocarditis.  If that comes back clear we will assume reflux and re-start Prevacid.  Hoping to get that scheduled soon.

We've also decided to d/c solumedrol with her infusion.  We're hoping she doesn't experience any negative side effects, but if she does we can treat with prednisone and re-start solumedrol at next infusion.  She's worried about side effects of long term steroid use and I agree.  This hospital uses a much slower rate so she may not need solumedrol at all.  Fingers crossed!

A very good appointment and a plan that I'm comfortable with.  I have such faith in this doctor that my worries are minimal.


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## my little penguin (Sep 3, 2015)

http://www.ncbi.nlm.nih.gov/gtr/tests/512417/indication/

Did she ever have this test done ?


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## DanceMom (Sep 3, 2015)

MLP - I don't believe she's had that one.  The doctor said the test she is ordering is for memory B cells (or something like that).  If that doesn't provide answers she will order genetic testing.  She didn't elaborate a whole lot on the testing and oddly enough I trust her enough not to feel compelled to google like crazy, lol.


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## araceli (Sep 3, 2015)

I am glad your appointment went well. I hope she is the one to give you answers and a little peace.


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## Sascot (Sep 3, 2015)

Sounds good. What a difference it makes when doctors really seem to be trying.


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## Maya142 (Sep 3, 2015)

So glad you had a good appointment -- having a good doctor makes all the difference in the world!! Glad she listened about the costochondritis diagnosis and is exploring other possibilities.


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## DustyKat (Sep 5, 2015)

Thanks for the update DanceMom.  

So good to hear that you have found a fab doctor! It surely is a blessing to find someone you trust and have faith in. 

Sending loads of luck and warm wishes that all goes well with the echo and the next infusion. Good luck! :ghug: 

Dusty. xxx


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## kimmidwife (Sep 5, 2015)

That is so great that you have found this new doctor. She really sounds on the ball!!!! I hope you guys finally get some answers!


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## DanceMom (Sep 15, 2015)

A is still plugging along, doing well.  The new dance season has started so she's learning lots of dances and has started pointe for the first time.  We do not have the echo results yet but I expect that they are normal.  The test only lasted 15 minutes so I'm assuming they didn't see anything of concern.  I will follow up at the end of the week just to be sure.

Last week we discovered some hidden water damage and mold in our home.  We are having these areas treated/replaced, but I can't help but wonder if that has had an effect on A in some way.  Perhaps that is the cause of her mystery "costochondritis" symptoms.  The timing is about right.  Hopefully as we fix the issue her issues will resolve as well.  I did notify the nurse and she said she'd speak to the doctor about it.  Just a wait and see thing I suppose.


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## DanceMom (Sep 16, 2015)

Still no echo results.  These hospitals don't communicate very well.  Frustrating, but I'll stay on them.

We started reflux meds this morning.  The Immunologist thinks her "costochondritis" may actually be reflux.  Guess we'll see!


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## Maya142 (Sep 16, 2015)

Really hope the reflux meds help. Fwiw, my older daughter once had what we thought was Costochondritis, disappear when she was put on Prilosec! She had been saying all along that the pain felt different from regular costochondritis, but she was only 15 and her rheumatologist did not listen :voodoo:.

We were shocked that it worked so well (but glad). Hope it works for A :ghug:


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## DanceMom (Sep 18, 2015)

A tells me this morning that she has been waking up with a very sore throat.  Feels like she is swallowing knives.  (Can't believe she's just now telling me!!)  I looked and her throat is red but not swollen and no pus.  She says by mid-afternoon it feels fine and then starts over every morning.  Could it be reflux?  Sound more like allergies?  Ideas??


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## crohnsinct (Sep 18, 2015)

OMGosh!  I have been getting the same exact thing on and off.  My doc tells me it s allergies/post nasal drip...even though otherwise I feel perfectly fine!


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## DanceMom (Sep 22, 2015)

I think we're definitely dealing with reflux.  A says her chest pain is lessening, she isn't taking as many of those gasping breaths, and her appetite seems a little better too.  She's only been on the Omeprazole for a week or so and we're already seeing an improvement.  Her throat is still red so I'll keep an eye on that.  What a weird way for reflux to present!

Her lymph nodes behind her ear have flared up again.  I wish those pesky things would just take a break.  We're going on 3 months and just when we think they're gone they come back even worse.

Echo was normal.  Viral stool panel and specialty immune lab will be done at her infusion next week.  Hoping she stays healthy for our Disney trip this Friday!!


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## kimmidwife (Sep 24, 2015)

Have fun in Disney!!!!!


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## DanceMom (Sep 30, 2015)

A had her infusion yesterday and the new changes were implemented.  We discontinued solumedrol (pre-med) and ran the fluids and Privigen simultaneously (which saved at least an hour).  She had a headache a few hours later but it resolved with Tylenol.  This morning she had diarrhea and a slight tummy ache but felt fine otherwise.  Hoping the side effects stay away!

She definitely has reflux which seems to be getting worse even on Omeprazole.  She is now spitting up frequently and I'm noticing the gasping becoming more frequent.  If this continues I'll email the GI and get his advice.  Could it be that she needs a different type or stronger medication?  Can Omeprazole make things worse?  We noticed an improvement at first but now things have taken a turn.


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## Maya142 (Sep 30, 2015)

My daughter had to try several different PPI's before we found one that worked. First it was Prevacid, then Prilosec, then Nexium and then Aciphex. Now she's back on Prevacid and it's working well but she does still take Maalox for reflux as needed. She has also tried Pepcid and Zantac in combination with a PPI. It's just trial and error unfortunately.

Good luck!! Hope the IVIG doesn't cause any problems.


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## kimmidwife (Sep 30, 2015)

I second what Maya said. It might take a few tries to figure out which one works for her. Also. Are sure she is taking calcium and vitamin D at a separate time from the PPI. Long term use of them is bad for the bones unfortunately


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## Farmwife (Oct 1, 2015)

Grace does the combo for her stomach. It works well.
I hope she feels better soon!


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## DanceMom (Oct 2, 2015)

Have you ever just wished that the lab would take a really long time getting your results to you?  Typically I'm checking the status like a neurotic woman, but this time I'm nervous and I'm afraid of what may be to come.  I know answers are important, and I want a more complete diagnosis, but for now living in that gray area is comfortable and we're all doing okay.

One thing the Immunologist is checking for is ALPS (Autoimmune Lymphoproliferative Syndrome).  Somehow all my research has overlooked this disorder, but parts of it do fit.  The treatment is IVIG and Prednisone...the only 2 medications that have been truly successful.  

I'm just hoping it takes a few weeks for results.  I'm good with that.


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## kimmidwife (Oct 3, 2015)

Dancemom,
Totally know what you mean!!!!!


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## DanceMom (Oct 12, 2015)

No news about labs and I certainly haven't called to check the status, lol.  I did finally receive access to A's online account through MyChart (they recently switched patient portals).  Gaining access was quite a process (took a month!) and when I finally got the account information I somehow had access to another child as well.  I was horrified at the thought of someone having access to my child's personal information!  I called the clinic and they ran an audit to make sure her account was not linked to anyone else's (it wasn't).  This is not something I've worried about before, but for those of you with online patient portals you may want to call and verify that you are the only one with access to that information.

Only other news is that A has lost 3 teeth this week, lol.  The first had been loose about a month and she finally wiggled it out.  The second turned pink/red over a period of about a week, then suddenly became loose and fell out almost immediately.  The third was pulled by the dentist today because it had also turned pink/red but wouldn't fall out.  The permanent tooth was growing on top of it and it was a mess.  My poor girl!  All on the same side! lol


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## kimmidwife (Oct 12, 2015)

Hope she is feeling okay! It is not fun having teeth pulled!


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## Sascot (Oct 12, 2015)

Poor girl - I really don't like dentists! My kids always laughed at me because I can't stand wobbly teeth - totally freaks me out, lol


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## DanceMom (Oct 30, 2015)

A's labs are in and I'm not sure if I should be concerned or not (as is usual, lol).  She has lost a little weight lately but nothing significant.  Her reflux is mostly controlled but will still spit up a few times a week.  She's had some random headaches and diarrhea but most of the time feels pretty good.

Absolute Neutrophils 1.19 (1.5-6.6) L
Neutrophil Segments 22.5% (39.5%-76.9%) L
Lymphocytes 55.8% (13.1%-45.2%) H
Atypical Lymphocytes 4.2% (0-4%) H
WBC 3.91 (4-10.5) L
Eosinophils 7.5% (0-4.8%) H
ALT 31 (10-30) H
Sodium 144 (134-143) H
Bun/Cre 27:1 (15:1-24:1) H
Anion Gap 14 (2-11) H

I know some of these things are just barely out of range (like ALT and Sodium) but the CBC portion has me the most confused.  Any input??


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## kimmidwife (Oct 30, 2015)

I would call and ask about them. From my understanding the lymphocytes are one of the things affected in primary immune deficiency. By the way have they said which PID she has, I can't remember if you told us that. Is it common variable PID ?


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## DanceMom (Oct 30, 2015)

Her first Immunologist said, "I think she has CVID" but would never give her the official diagnosis.  A CVID diagnosis typically requires that either the IgA or IgM be low and A's is always normal.  Officially she is only diagnosed with "hypogammaglobulinemia" which is a very incomplete diagnosis.  

She had some specialty immune labs run in September but I don't have access to those results.  I will call the Immunologist this afternoon for an explanation but they don't always call back.


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## CarolinAlaska (Oct 30, 2015)

How is this CBC different than her other CBCs?  I don't like to see her neutrophils so low.


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## DanceMom (Oct 30, 2015)

Neutrophils have been low once or twice before. Lymphocytes have never been high although they've been low a few times. WBC usually range from 4-5. Our other lab used a reference range from 4.5-13.5 so this lab is a little different. She does have an enlarged spleen (found at her September appointment) so that adds to my concern. I left a message with the nurse but probably won't hear back until Monday.


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## DanceMom (Oct 30, 2015)

The on-call doctor called. Said A is neutropenic and to monitor her temperature closely. Looks like it could be a virus but we'll repeat labs in a week to be sure. So thankful for this new group of physicians!


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## DanceMom (Oct 31, 2015)

So no fever, but she does have a wicked perianal infection. Popped up suddenly and is very painful. We will treat at home this weekend (as long as it stays somewhat contained) and call the doc on Monday. She has big plans this weekend. Poor girl.


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## Sascot (Oct 31, 2015)

Ouch! Poor girl, hope it resolves on its own.


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## DanceMom (Nov 1, 2015)

No fevers over the weekend! A feels good and her infection is looking better. Feeling positive.


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## Farmwife (Nov 1, 2015)

Awesome news.
 We also go weekend by weekend here. Can't wait until we can go month by month!


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## DanceMom (Nov 2, 2015)

Taking A's temperature is not something I've done regularly in quite some time (until now).  This morning her temp was unusually low - 95.2.  I took her temp when she first got up and she was shivering.  She sleeps in very light PJs but covers up with a heavy blanket.  I had her take a warm bath and it only rose to 96.1.  Does this indicate anything or just a variant of normal?


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## Mehita (Nov 2, 2015)

That seems low, especially if it's not normal for her to drop that much. How confident are you in your thermometer?


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## DanceMom (Nov 2, 2015)

I just bought a new one Friday evening, the one recommended by the doctor (oral, under the tongue kind).  She seems to average between 97.2 - 98.7.  The highest over the weekend was 99.1 after trick-or-treating for 2 hours.


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## Farmwife (Nov 2, 2015)

I googled and ran across this website about low temps in kids. It also might be a good site for someone like A's condition and a lot of kids on here!

http://articles.complexchild.com/march2014/00534.html


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## DanceMom (Nov 4, 2015)

Saw the Pulmo today. She feels A's asthma may be in a slight flare but we're going to watch and wait for 3 more months before increasing her meds. She doesn't want to affect her growth any and A seems comfortable. She was concerned that her spleen "felt full" so she's going to speak with the GI to see if he wants any imaging. Always something.


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## Farmwife (Nov 4, 2015)

I was told by Grace's allergist that asthma meds don't affect growth in children. Did I understand wrong???:eek2:


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## DanceMom (Nov 4, 2015)

I've heard conflicting things. My youngest was always tiny while on a daily inhaler but since weaning she's really shot up. A's growth seemed to slow down when she started but she was also very sick with GI issues at that time. I really think each kid is different and if Grace seems to be on track then it probably isn't affecting her. A is also nearing puberty (though she shows no signs yet) so maybe that's a factor. I'm really not sure. Her inhaler is a pretty weak one so we will probably end up switching before too long anyway.


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## my little penguin (Nov 4, 2015)

The height affected for high dose  Flovent after 7 years is less than 1/4 of an inch.
Which is about the same side effect wise as 5 days of Pred used to treat an asthma flare
1/4 " vs lung scaring due to simmering inflammation. 
I lose the 1/4"


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## DanceMom (Nov 4, 2015)

Flovent is also a fairly weak inhaler and has never worked for A. I'm not sure what constitutes "high dose Flovent". Previously she was on Advair, so it wouldn't shock me that QVar40 wouldn't be enough. Regardless, I'm not a physician and don't get to prescribe those types of things. I'm comfortable with waiting a few more months to reevaluate when we have more info. She's very active, comfortable, good vitals. She's okay for now. Her doctor is moving so we'll see a new doctor in February. He may have a different game plan and I'm open to that too. There's just a lot of unknowns right now.


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## DanceMom (Nov 5, 2015)

ER visit this morning for a possible broken foot. Not broken! Yay! So just a temporary boot until swelling subsides. She's determined to run her race this weekend, so we'll see. At the lab now and hoping for better results. She's begging to go to school when we're finished. Lol


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## Farmwife (Nov 5, 2015)

How'd she hurt her foot? A's a tough kid, she's make a good farm kid!!! lol


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## my little penguin (Nov 5, 2015)

Glad her foot isn't broken

I wasn't trying to state in anyway how to treat you child's asthma
Your kiddo your doc their plan
Just pointing out to others who read this but don't post that the amount of height potentially lost with inhaled corticosteroids is very minimal according to all the studies

Fwiw Flovent is an inhaled corticosteroids which comes in three doses (44 mcg ,110 mcg , and 220 mcg). Advair is a combination of an inhaled corticosteroids similar to Flovent not any stronger but it has an additional long acting bronchodilator which acts similar to albuterol but keeps the airways open for 12 hours instead of 4 with albuterol .

Again no judgement on how your kiddos asthma is controlled 
Just wanted to clarify the types of meds since there seemed to be confusion.


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## my little penguin (Nov 5, 2015)

For those who are interested
Very good PDF with a chart explaining how docs decide which asthma med to use and when
Also how they step up drugs for asthma
And step down therapy as well

https://www.nhlbi.nih.gov/files/docs/guidelines/asthma_qrg.pdf


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## DanceMom (Nov 5, 2015)

She was tumbling at gym and a younger girl was being silly and yelled in her face while doing a back tuck on the tramp. She flailed and landed wrong on her foot. She kept tumbling and didn't even tell me until we got home. Swollen and bruised so better safe than sorry.


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## Maya142 (Nov 5, 2015)

Ow! Poor A! Glad she didn't break it.


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## kimmidwife (Nov 6, 2015)

Glad to hear it was not broken! Hope she heals up quickly!


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## DanceMom (Nov 8, 2015)

A's CBC was completely normal! So either she had a virus without exhibiting symptoms or her infusion (with solumedrol that they gave when they weren't supposed to) put things back on track. Either way I'm relieved and happy!


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## DanceMom (Nov 9, 2015)

Yesterday A started complaining of a sore neck, left side only.  I'm trying to determine if the issue is a lymph node, muscle, or something else entirely.  She did dance on Saturday but her neck did not start hurting until mid-day Sunday.  It doesn't look swollen and I don't feel a lump (though I'm not a trained doctor).  Anyone have swollen lymph nodes in the neck?  Was it obvious what the problem was?


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## my little penguin (Nov 9, 2015)

Did you cal the ped to determine if she needs to be seen since she has immunodeficiency and it could be a lot of different things .....


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## DanceMom (Nov 9, 2015)

Not yet.  I wanted to give it a few days (unless things got worse, obviously).  Her labs were good on Thursday so I know she isn't in immediate danger.  With good labs and no fever they wouldn't prescribe antibiotics right away anyway.  I was just wondering if anyone had dealt with swollen lymph nodes in the neck before.


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## CarolinAlaska (Nov 9, 2015)

Is she really tired?  Was she tested for mono?


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## CarolinAlaska (Nov 9, 2015)

They can indicate infection - viral or bacterial.  Posterior lymph nodes often mean viral.


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## DanceMom (Nov 9, 2015)

She feels fine.  She also felt fine when her labs were all crazy too.  I'm not sure that a mono test would be accurate since she receives plasma products.


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## Sascot (Nov 10, 2015)

Maybe it's something simple for once and she slept with her neck twisted wrong. I did that once, it was really sore


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## DanceMom (Nov 10, 2015)

Her neck seems to be getting better so I'm assuming she strained it at dance.  It happens.  She does seem to be overly tired so I'm keeping a close eye on her.


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## kimmidwife (Nov 10, 2015)

Hoping it is just a neck strain! Never a dull moment with our kids!!!!


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## CarolinAlaska (Nov 11, 2015)

DanceMom said:


> She feels fine.  She also felt fine when her labs were all crazy too.  I'm not sure that a mono test would be accurate since she receives plasma products.


Does that mess with antibody titers?


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## DanceMom (Nov 11, 2015)

I would think so since she is essentially receiving antibodies.


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## CarolinAlaska (Nov 11, 2015)

Ok, I don't understand it much.


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## DanceMom (Nov 11, 2015)

I think this site explains it well.
http://bdipharma.com/Clinical-What-is-IVIG.aspx


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## CarolinAlaska (Nov 12, 2015)

DanceMom said:


> I think this site explains it well.
> http://bdipharma.com/Clinical-What-is-IVIG.aspx


It's really pretty amazing, isn't it?


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## DanceMom (Nov 12, 2015)

CarolinAlaska said:


> It's re:ghug:Lily pretty amazing, isn't it?


IVIG has been life changing for A.  We are so thankful for plasma donors!!


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## DanceMom (Dec 2, 2015)

I haven't updated in awhile but things are starting to unravel. Long story short, our new Immunologist wanted to discontinue Solumedrol as a pre-med. I agreed and she didn't receive it in September. No side effects....wonderful. October's labs weren't good but she felt fine. Unfortunately, the nurse made an error and gave her the Solumedrol at October's infusion. My husband took her and didn't have a clue, bless him. When we rechecked labs two weeks later they were perfect. Awesome. I took her to November's infusion - no Solumedrol (they didn't pull labs). Slight headache for a side effect but no big deal. A week and a half later and things seem to be going downhill. She cries at the drop of a hat (very unlike her!), she's having intermittent diarrhea, sore throat and cough (stupid asthma), and that freaking lymph node behind her ear is huge again. It seems crazy to me, but it's almost as if that monthly dose of Solumedrol kept things in check and without it she's falling apart. I'm afraid this is what the doctor meant when she said, "I want to discontinue it in case it's masking something."


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## Maya142 (Dec 2, 2015)

Poor kiddo. I hope they can finally get to the bottom of whatever it is. Do you see the doctor soon?

Sending hugs!


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## DanceMom (Dec 2, 2015)

Maya142 said:


> Poor kiddo. I hope they can finally get to the bottom of whatever it is. Do you see the doctor soon?
> 
> Sending hugs!


In a few weeks. I'm assuming she has the specialty lab results. I need answers that I don't want to hear.


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## CarolinAlaska (Dec 3, 2015)

That seems too long.  Have you called her about these symptoms?


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## Sascot (Dec 3, 2015)

Really sorry things are getting worse. Hope they can figure it out soon


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## kimmidwife (Dec 3, 2015)

I second Carolin. Call the doctor and update her about what is going on. Hope you get some answers soon.


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## DanceMom (Dec 3, 2015)

She isn't "sick" so I know nothing much can be done.  Her IgG is within normal limits.  This is just one of those wait and see what happens type of thing.  If her specialty labs don't reveal anything conclusive we discussed doing genetic testing next.  This time of year is just so busy and I wanted her to feel her best.  Bummed.


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## CarolinAlaska (Dec 3, 2015)

I still think you should let her know if you haven't yet, especially because of the lymph node.


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## my little penguin (Dec 3, 2015)

I agree
Even if they can't fix something
Our Gi always wants to know about how things are going or if new or weird things are getting worse
That helps them decide if it can wait or if it's something that they can help with now


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## DanceMom (Dec 5, 2015)

CarolinAlaska said:


> I still think you should let her know if you haven't yet, especially because of the lymph node.


We discussed the lymph node at her last appointment. She said as long as it isn't hard and fixed there isn't much to be done. It increases then decreases in size. Apparently that's par for the course. I do check it daily to make sure it isn't infected (which has happened before).


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## DanceMom (Dec 9, 2015)

A has had a sore throat for several days, only slightly red. Her eye was a little swollen this morning too (which happens sometimes).  Things still aren't "right".  If she isn't better by Friday morning I'll see if the Pedi can squeeze her in.  She has a race Saturday morning that she's really excited about.  Fortunately her BMs have been normal and she isn't so emotional anymore!


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## CarolinAlaska (Dec 11, 2015)

Thanks for the update.  I'm glad she is doing better emotionally.  I hope all her new symptoms have resolved and that she can go perform like she wants to tomorrow!


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## DanceMom (Dec 11, 2015)

CarolinAlaska said:


> Thanks for the update.  I'm glad she is doing better emotionally.  I hope all her new symptoms have resolved and that she can go perform like she wants to tomorrow!


She says she feels better. I wonder if she just didn't want to be bothered with going to the doctor. Anyway....she's racing tomorrow and has dance afterward. She's a tough kid.


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## CarolinAlaska (Dec 11, 2015)

Yes, it sounds like it.


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## Sascot (Dec 12, 2015)

Very tough kid carrying on with dancing and a race. Glad she is a bit better


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## DanceMom (Dec 12, 2015)

A placed third in her division! So proud of her! This was a short race, more like a sprint. She's been complaining of knee pain the past few days but I think it is just one of those things that comes with being so active. Unfortunately she was closely exposed to strep today (a little girl in her trio at dance) so hopefully she's strong enough to fight that off! We have a busy week with dance showcases next week!


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## Mehita (Dec 13, 2015)

Could the knee pain be Osgood-Schlatters?


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## DanceMom (Dec 13, 2015)

Mehita said:


> Could the knee pain be Osgood-Schlatters?


Maybe. She's definitely the right age and participates in the right activities for it. No lump though. I think her pain is more of a dull ache that doesn't really go away. She went running this evening so she's managing.


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## Mehita (Dec 13, 2015)

My younger son has it, but no lump (yet). Kind of hard to dx, I think. He's wearing a pediatric brace designed for it and it's helped significantly. The only thing he still really can't do is jump on trampolines.


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## DanceMom (Dec 22, 2015)

A's appointment is tomorrow. The anxiety of getting results makes me feel sick. I've gotten very comfortable living in this gray area. So either the results will pinpoint her exact deficiency and I'll have to feel sadness over a diagnosis again, or results will be "normal" and we'll continue what seems like a never-ending hunt for answers. I just dread this appointment.....


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## DanceMom (Dec 23, 2015)

Not much to tell about the appointment. All specialty immune labs were normal. The genetic PID labs she wanted to run are no longer offered. So we're at a dead end. She wants to trial off of IVIG and repeat all testing when puberty is more prominent....either this summer or next. She thinks there is a chance she may outgrow the deficiency by puberty. I'd like to be so hopeful.

Her spleen is most likely normal again. Her stomach is very toned which apparently makes it harder to tell. GI can double check next week. She thinks a virus enlarged it, no big deal.

She's becoming a ridiculously hard stick. Veins are thin and have a lot of scar tissue. A is ready to trial off now. I'll never be ready to watch her become so sick again.


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## kimmidwife (Dec 23, 2015)

Dancemom,
I am sorry you didn't get any further answers. It is frustrating to live on the grey. But the possibility of outgrowing it sounds really great! I didn't know that was even possible.


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## CarolinAlaska (Dec 23, 2015)

I know the feeling.  I hope she's right and your lovely just grows right out of it.


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## DanceMom (Dec 23, 2015)

Most children outgrow transient Hypogammaglobulinemia by 2 years of age. Some have it up to 6 years. It's basically unheard of to still have it at 11 but I suppose anything is possible. It's all we really have to go on right now.


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## Maya142 (Dec 23, 2015)

We have actually met 2 kids with Hypogammaglobulinemia at the Juvenile Arthritis Conference! One was 8 and one was 17. 

I hate that A will have to go off meds again and get sick all over again , it seems like she just did that a little while ago!


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## DanceMom (Dec 23, 2015)

Maya142 said:


> We have actually met 2 kids with Hypogammaglobulinemia at the Juvenile Arthritis Conference! One was 8 and one was 17.
> 
> I hate that A will have to go off meds again and get sick all over again , it seems like she just did that a little while ago!


I'm speaking of transient Hypogammaglobulinemia (of infancy). She seems to fit this diagnosis, except she's almost 11 and we aren't sure her Hypogammaglobulinemia is transient. Hypogammaglobulinemia is basically an incomplete diagnosis just indicating low IgG. Typically that is caused by something else.


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## my little penguin (Dec 23, 2015)

Confused 
Why take her off meds when she really hasn't been stable from infections ...
Wouldn't she need to be stable for longer first ?

Ds has a few things that are known to be out grown by puberty .
My DH also has one 
Still there for DH at well past puberty 
Ds hasn't lost any of his


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## DanceMom (Dec 23, 2015)

my little penguin said:


> Confused
> Why take her off meds when she really hasn't been stable from infections ...
> Wouldn't she need to be stable for longer first ?
> 
> ...


She hasn't had any infections requiring treatment since summer. She's doing pretty well considering where she started. It is pretty standard to trial off of IVIG with only a Hypogammaglobulinemia diagnosis. If she becomes sick again perhaps a new round of testing would give a definite diagnosis. If her levels stayed within normal limits we'd know she did indeed outgrow the deficiency. My gut just tells me this isn't something she'll outgrow. But we'll see. She's sick of nurses digging at her veins and welcomes a break. The whole situation is depressing to me.


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## kimmidwife (Dec 24, 2015)

:ghug:Very sorry I am depressed to today. Sending hugs.


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## CarolinAlaska (Dec 24, 2015)

Here's a hug for you too KMW (((hug)))).


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## Optimistic (Dec 25, 2015)

Dance mom, that is very upsetting. I'm sorry you are facing this. May answers and relief and a big long break from medical chaos dominate in 2016 for her.


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## DanceMom (Dec 30, 2015)

Saw the GI today. He examined her and felt that her spleen was enlarged. I was disappointed to hear that, but we're going to schedule an ultrasound to get a good look at it. Her throat was also red so he did a strep and mono swab. She did have a low grade fever which surprised me. I guess we'll see.

Her chest pain/shortness of breath has returned so we discussed that as well. I thought it could be reflux again but he isn't convinced. He thinks it could be anxiety/stress. If it is we'll definitely treat that ASAP by finding a good therapist. She already does yoga and relaxation breathing (which has not helped the issue but she enjoys it anyway). So, we're scheduling an upper endoscopy and ph probe. She was pretty dramatic about the throat swabs so I imagine the probe will be fun.

He was pleased with her height (11th percentile) and weight (5th percentile). She's growing!


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## DanceMom (Jan 1, 2016)

Day 2 of no reflux meds. Several instances of burning reflux and gasping is getting worse. Definitely appears to be reflux, but knowing A the probe will be negative. Tonight after dinner she ended up having explosive diarrhea, not making it to the bathroom in time. This hasn't happened in a long time! Could Omeprazole have been helping with diarrhea/urgency? Could an enlarged spleen cause diarrhea or reflux?


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## my little penguin (Jan 1, 2016)

Did they have you slowly wean the ppi?
You can't go cold turkey even if you don't have reflux
Otherwise your body over produces acid quickly 

Doesn't cause or fix diarrhea either


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## DanceMom (Jan 1, 2016)

Nope. He didn't say anything about weaning. How would you wean since it's only 1 pill a day? Cut it in half for a few days? Excess acid wouldn't cause diarrhea?


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## my little penguin (Jan 1, 2016)

We had to cut the pill in half with a h2 blocker added twice a day
For a few weeks 
Then lower the h2 slowly as well
Your body makes a certain amount of acid
When you take a ppi it tries to stop the body from making the acid it wants too
So the body is working twice as hard to make acid 
Stop the ppi and nothing is blocking all that extra acid your body has been trying to making
So it goes overboard for a while


Make sure you check with her Gi before your do anything
This is just what our gi had us do for my kiddo 
So you need your doctors input


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## my little penguin (Jan 1, 2016)

> News & Perspective
> Drugs & Diseases
> CME & Education
> Specialty
> ...


From
http://www.medscape.com/viewarticle/545104_4


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## my little penguin (Jan 1, 2016)

> Taper off the PPI slowly.
> 
> The higher the dose, the longer the taper. Expect rebound symptoms.
> Decrease the current PPI dose by 50% each week until patient is on the lowest dose once daily.
> ...



From
http://www.nbcms.org/about-us/sonom...d-patients-off-ppis.aspx?pageid=668&tabid=747


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## my little penguin (Jan 1, 2016)

> Step down approach to wean off daily use of PPIs
> 
> RefluxMD’s medical advisors developed a set of guidelines to reduce the use of daily PPIs via a step down approach.  The following infographic provides an overview of their approach:
> 
> ...


From

http://m.refluxmd.com/?url=http://w...ean-myself-ppi-medications&utm_referrer=#2451


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## DanceMom (Jan 1, 2016)

Thank you for the information. She's been on Omeprazole several times before and we've never weaned and never had an issue. I didn't even know to ask about that. Her study is scheduled 2 weeks out so that doesn't leave much time for a taper. I'll email GI on Monday if she's still having issues.


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## my little penguin (Jan 1, 2016)

If she is having a test then that may be why the Gi is having her push through
Rebound is common when there is a fast wean but eventually it does get better 

Rebound can be avoided if it's done slower that's all


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## DanceMom (Jan 2, 2016)

Throat swabs were negative. Can reflux cause a sore red throat? Allergies? Can't be a virus because it stays red.


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## kimmidwife (Jan 2, 2016)

Yes Reflux can cause a sore throat and hoarseness. I second MLP that you should wean it if you have enough time. How long does she have to be off of it?  If you can't do a slow wean do a fast wean. This is the fast wean schedule.  Open the capsules and take out 1/4 of the little balls inside, then after three days take out half, then another three days and take out 3/4's. It is miserable to come off them. I did it over the summer. Did great for six months took methyl prednisone for an ear issue and reflux came back horribly. It is a nightmare.


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## DanceMom (Jan 2, 2016)

kimmidwife said:


> Yes Reflux can cause a sore throat and hoarseness. I second MLP that you should wean it if you have enough time. How long does she have to be off of it?  If you can't do a slow wean do a fast wean. This is the fast wean schedule.  Open the capsules and take out 1/4 of the little balls inside, then after three days take out half, then another three days and take out 3/4's. It is miserable to come off them. I did it over the summer. Did great for six months took methyl prednisone for an ear issue and reflux came back horribly. It is a nightmare.


GI said to discontinue 7-10 days before procedure (we did not have procedure scheduled until after appointment). Procedure is 10 days away so no time for a wean. I truly didn't know this was to be weaned. She's taken it at least 5 different times over the years and never had a problem coming off until now. I feel terrible for her but we've got to get answers so we can help her. She's gasping every 20-30 seconds now. She just says her chest burns and is so tight it feels like her lungs won't fill up enough. Very frustrating.


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## my little penguin (Jan 2, 2016)

Have they looked at vocal cord dysfunction as well ???
Looks sounds and feels like asthma shortness of breathe etc...
But it's vocal cords spasming ( so real just harder to prove medically )


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## Optimistic (Jan 2, 2016)

Wow. I'm really intrigued by this info about weaning Omeprazole!  I'm sorry Dancemom this is adding another thing to all she is dealing with. Enough already!

I read your note that she had explosive diarrhea when she came off Omeprazole. My son has been taking Omeprazole for a year and a half.  It has been so long I forgot all the details (can check) but he was in a study for it and IBD.  He didn't take it for a week or so early on before a scope and had similar experience as your daughter. 

I hope this reaction is short and wish her the best for her procedure.


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## Sascot (Jan 3, 2016)

Sorry to hear how much she is suffering, wish there was an easier way to get the tests done!


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## DanceMom (Jan 3, 2016)

my little penguin said:


> Have they looked at vocal cord dysfunction as well ???
> Looks sounds and feels like asthma shortness of breathe etc...
> But it's vocal cords spasming ( so real just harder to prove medically )


Doctors haven't mentioned this but I have come across it in my searches. Could be, but her breathing is never noisy and her voice is never affected. She breathes normally during sleep though which has me wondering.


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## my little penguin (Jan 3, 2016)

My oldest has it- officially dx 
As well as asthma
No noisy breathing or changed voice either

His allergist did a test


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## DanceMom (Jan 3, 2016)

What are his symptoms? Does it last for months with no relief? Did they determine a cause?

I've even wondered if her spleen is pushing on her diaphragm giving her the sensation that her breaths aren't adequate. I haven't been able to schedule the ultrasound yet but hope to try again tomorrow.


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## kimmidwife (Jan 3, 2016)

Dancemom,
I would give the doctor a call.


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## my little penguin (Jan 3, 2016)

Similar to asthma exterbations
Shortness of breath 
Feeling he wasn't able to breathe deep enough
Increase asthma meds
Gave albuterol a lot etc for months 

Finally got bad enough allergist pulled him in for a lung function test while he was having trouble 
Lung function was perfect
No improvement with albuterol and pulse oxy was fine
Dx was made although there is a more invasive test
Had an appt with a speech therapist who specialized in VOC
Taught him everything to do to handle it 
After a few weeks to a month 
With the proper exercises things dramatically improved


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## DanceMom (Jan 3, 2016)

We've tried several relaxation/breathing techniques given to us by our GI and my friend who is an SLP. They just haven't helped, not even a little bit. 

Today she's complaining of a severe headache, not relieved by Ibuprofen (didn't have Tylenol). Thinking she may be coming down with something. Just in time to go back to school....


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## my little penguin (Jan 3, 2016)

We tried normal breathing things prior
And with others no relief
You need someone who works with Voc kids on a regular basis at a major hospital 
Not sure how the Gi who is a gut specialist would be an expert in a breathing disorder 
Regular slp did not help at all
Just saying
I was beyond skeptical when the allergist said we had to see one specific slp 
Not any other the others would do 
At all

But it worked


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## DanceMom (Jan 3, 2016)

Our GI diagnosed A's immune deficiency so I trust him on many levels. He recommended yoga and specific breathing techniques that have been helpful for other patients he sees. My friend is an SLP at the children's hospital we go to for immunology. She specializes in feeding disorders and vocal cord disorders. I didn't just Google breathing techniques and wing it. We tried these techniques from July-September with no improvement. Only got relief after 2 weeks on Omeprazole, then all symptoms resolved. GI thinks that was a coincidence, and it could be, but it is worse now than ever. Started techniques back up and no improvement. We're both frustrated so I've told her she can quit them until after tests are complete. She wants to continue yoga because she enjoys it and finds it helpful for dance. If this is all caused by anxiety/stress we will definitely get counseling and probably meds, at least for the short term. She is happy, energetic, and full of life, but this breathing issue is just a nagging problem.


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## Maya142 (Jan 3, 2016)

I have no advice but just wanted to send hugs! My older daughter stopped Prevacid without weaning once and she was SO miserable. After that experience, we always weaned, even if it was just by dumping some of the little balls out of the capsule and reducing them over a few days.

Sounds like at least part of this might be reflux since the Prilosec was helping?


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## CarolinAlaska (Jan 3, 2016)

Prilosec gives my daughter diarrhea - profusely.  I don't know why she'd have it worse off of it.  Acid reflux can cause asthma-like symptoms.  This doesn't surprise me at all.  Is it possible for your daughter to use Tums or Maalox for a few days until she is in the 7-10 days prior to test window?


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## DanceMom (Jan 8, 2016)

Emailed GI nurse today. A's diarrhea has gotten worse with 4 accidents in the last week and waking once at night. Been a long time since she's done this. She's frustrated that she isn't dancing to her full potential because she isn't feeling well. She cried about it last night which breaks my heart. Hopefully we get some answers soon.


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## CarolinAlaska (Jan 9, 2016)

Did you hear anything back?


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## DanceMom (Jan 9, 2016)

I emailed late Friday afternoon so I figured I wouldn't hear back until Monday. Her appointment is Thursday so I'm sure they won't make a plan until then.


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## Maya142 (Jan 9, 2016)

Is the pH probe on Thursday too?
I hope A feels better. It's really just the worst when it affects all aspects of their lives :ghug:.


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## DanceMom (Jan 9, 2016)

She will be admitted Thursday morning for upper scopes and the ph probe. Insurance wouldn't cover the ultrasound inpatient so we'll have to come back Monday for that. Follow-up visit is at the end of the month.


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## my little penguin (Jan 9, 2016)

They can discharge her and schedule you for the ultrasound right after the discharge 
The docs can make it happen
--they did that for ds 
Much better than an extra trip


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## kimmidwife (Jan 9, 2016)

I hope you get some answers next week! Fingers crossed and hope she is feeling better quickly!


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## Sascot (Jan 10, 2016)

Thank goodness it's not too far away, hope you get some answers!


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