# Should I be concerned?



## DanceMom (Nov 3, 2014)

A has been complaining of lower right rib pain for about 2 weeks now.  First set of labs on 10/20 were perfect.  Labs on 10/29 were not.  She still has the same pain and I'm not sure if the labs are related, an entirely new set of issues, or just a blip that is no cause for concern.  I have an email in to the GI (Rheumo ordered labs but getting him to take notice is an act of God) but I want to know what you all think.  Trying not to panic....

RBC 3.97 (4-5.2)
Creatine Kinase 373 (<143)
TCO2 16 (19-30)
AST 35 (12-32)

RBC is only barely low, but has never been low in the past.  CK was last checked in January and was 69 at that time.  TCO2 was low at last infusion but is typically normal.  AST has always been normal when not on MTX or 6mp.

Any ideas?


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## kimmidwife (Nov 3, 2014)

Maybe one of the drugs is affecting her liver? I wouldn't panic. Can you call the Gi tomorrow and get her in with him ASAP?


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## DanceMom (Nov 4, 2014)

GI emailed and said to ask the Rheumo. Ugh! She isn't on any medication other than IVIG.


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## my little penguin (Nov 4, 2014)

Ask about autoimmune hepatitis
Rare but may fit


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## DanceMom (Nov 4, 2014)

Rheumo nurse emailed and said if I don't hear back from doctor by Thursday to let her know.  Fortunately A feels okay.  She had some blood in her stool last night but I'm choosing to ignore that.  I refuse to come out of my happy bubble yet.


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## DanceMom (Nov 5, 2014)

Rheumo called and doesn't feel her Creatine Kinase is anything to worry about.  He said #s under 1000 shouldn't cause symptoms.  I hope he's right.  He said #s in the 300s just means she's an active kid (and she is).  He feels her AST is elevated only because CK is, saying they are related.  He said an AST of 80+ would be a concern.

So I'll continue floating along in my happy bubble.......


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## 04jag_2 (Nov 7, 2014)

I wouldn't panic, but stay vigilant. Make sure your doctor continues to monitor these things- signs of liver and kidney injury should never be shrugged off, and IVIG can potentially cause both. You're a great mom and your daughter is lucky to have you!


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## DanceMom (Nov 8, 2014)

Ugh..... very bloody stool this afternoon. This is unreal. She feels great. Ran a 1k (much of which was uphill) in 4:44 this morning.  Good time for her considering she's a dancer, not a runner. My plan is to hold off until the next set of labs to see how they read. As long as she's feeling okay another 2 1/2 weeks should be okay, right? If things were critical she'd feel sick, right? Once again I need reassurance not to panic. Lol


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## my little penguin (Nov 8, 2014)

If it's a newer symptom for her I would give an update to the GI
Saying she feels fine but....,, 
That way if they are concerned they can decided 
That is why you pay them


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## Cross-stitch gal (Nov 9, 2014)

DanceMom, what was she diagnosed with?  Is the blood bright red or closer to black?  When I'm in a flare, I usually pass a bunch of bright red blood.  If it comes with pain, I would make sure to get her checked out sooner, or at least contact her doctor.  Is she getting enough iron and liquids?  I'd be more concerned about keeping her hydrated and preventing her from being anemic.  Just keep a watch on it.

I'm here if you need someone to talk to.  Just let me know.


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## rsilverlining (Nov 9, 2014)

I've had similar symptoms, so I thought I'd weigh in... depending on where she's affected (jejunum, colon area, etc.) there can be the issue of pain being felt in other places. (I don't remember the word for it-- I'm sorry, I know it's a simple one, but...)

During a bad flare-up, particularly one where I'm having bloody stool, the pain will be primarily just below my ribcage. But when it gets bad enough, sometimes it'll feel like a kidney has burst. Or I'll feel it in my back. Or uterus. Anywhere, really, because my brain gets overloaded and can't fully process it. It's all coming from the same place, but I feel it everywhere. Just a thought.


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## DanceMom (Nov 9, 2014)

A has an immune deficiency, labeled as Common Variable Immune Deficiency but subject to change if we are able to get more specific answers. Bloody stool has been a symptom of hers for years, but since starting IVIG in August it hasn't been an issue (until now). She assures me she's fine, but her rib pain does concern me. When I barely touched her this morning to wake her she grimaced in pain. GI thought it was costochondritis, Rheumo said to give Tylenol for pain (which we haven't). There are no active immune deficiency boards that I've found, and everyone here is awesome, so I keep coming back for advice and support. Lol


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## Maya142 (Nov 9, 2014)

Costochondritis is very painful (According to my daughters and husband), so if A really does have it, I wouldn't be too surprised that she grimaced when you touched her. We use heat (heating pad or hot shower) and ice and Tramadol if it's really bad. 

I hope she feels better soon!


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## Cross-stitch gal (Nov 9, 2014)

DanceMom said:


> A has an immune deficiency, labeled as Common Variable Immune Deficiency but subject to change if we are able to get more specific answers. Bloody stool has been a symptom of hers for years, but since starting IVIG in August it hasn't been an issue (until now). She assures me she's fine, but her rib pain does concern me. When I barely touched her this morning to wake her she grimaced in pain. GI thought it was costochondritis, Rheumo said to give Tylenol for pain (which we haven't). There are no active immune deficiency boards that I've found, and everyone here is awesome, so I keep coming back for advice and support. Lol


I know nothing about this thing she has.  But, can sure understand the scare of both the pain and the blood.  It can get pretty scary especially seeing so much blood coming from the back end.  Glad to have you here even if it's just for support.  I try to pop in once in awhile to see if there's anything I can help the parents with from my knowledge of experience.  But, you guys know where to find me too...


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## DanceMom (Nov 9, 2014)

Whatever is causing the rib pain.....is now worse. She went from running and dancing to crying and barely being able to move. Tylenol and ice packs weren't much comfort (she hates heat). Hubby freaked when he saw the stool pic, and he doesn't get riled easily. Says I need to email the pic to the GI tomorrow. Is it possible that the rib pain is a small intestines issue?


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## my little penguin (Nov 9, 2014)

It depends on where the rib pain is ?

For Ds it was the breastbone 
Hope you get answers soon


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## Maya142 (Nov 9, 2014)

We've had both breastbone pain and pain on the sides. The pain on the sides has been much worse for my girls.

Rib pain has been really bad for them in the past, crying and refusing to do stuff is common until we get it under control. M is usually given steroids when it gets that bad, not sure if that's an option for A?


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## Farmwife (Nov 9, 2014)

My dd was one sided rib pain.Its not returned............. yet.
I pray A is better soon.


BTW, even is their was another on-line support group, we would still suck you back into this one. lol


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## DanceMom (Nov 9, 2014)

The pain seems to be the lower tip of her right rib. I'm not sure if it is the actual rib or perhaps underneath. Does costochondritis suddenly get much worse, for no apparent reason? I'm hoping she wakes up tomorrow feeling much better. Like maybe this is just a bad dream. She's been doing so well....


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## Maya142 (Nov 9, 2014)

It could get worse suddenly - we've had mild rib pain that's suddenly become bad enough that's it hard for M to take a deep breath.

I hope she starts feeling better soon.


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## Cross-stitch gal (Nov 10, 2014)

Is the bloody stool with dripping blood and diarrhea?  If so, I've had that too.  The main concern is the pain.  If the pain hasn't gotten better, I'd say the ER would be the best place to go.  In the echo of Maya, "I hope she starts feeling better soon."


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## DanceMom (Nov 10, 2014)

The stool is soft, mostly formed. No dripping blood and no blood when she wipes.


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## Cross-stitch gal (Nov 10, 2014)

Ok.  I admit that it's still scary to see.  But, no diarrhea and no dripping blood along with no blood when she wipes is a good thing.  The main thing is to get that pain down, keep her hydrated and make sure she's not anemic.  A call to the clinic would also be a good thing.  Sending lots of hugs your way.


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## Catherine (Nov 10, 2014)

Didn't A have a cold?  Any chance she has pleurisy?  

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Pleurisy_explained


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## DanceMom (Nov 10, 2014)

GI wrote back, asked if she was constipated. Ummmm.......no.  Said to get with Rheumo about rib pain.  I already did and he said to give Tylenol, which we are doing.  So this just sucks.


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## DanceMom (Nov 11, 2014)

GI wants IVIG pushed up or dose increased. Rheumo thinks numbers look okay and that the pain is unrelated to CVID. I don't know what to think. Next infusion is in 2 weeks so I guess we'll just deal quietly until then. Frustrated for my baby.


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## Mehita (Nov 12, 2014)

I know IBD has pretty much been ruled out, but... what other diseases/issues can cause blood wih stools and stomach pain like that? 

I'm so frustrated for you.


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## DanceMom (Nov 12, 2014)

Immune deficiencies can cause a Crohn's-like syndrome....basically all the symptoms of Crohn's without the chronic changes.  I think that's what is going on here.  GI wants to treat by adjusting IVIG dose/schedule.  Rheumo wants to leave things alone.  The blood has stopped but the rib pain continues.  We're giving Tylenol 3x/day and she wears an ice pack throughout the day as well.  

Now my little one is showing signs of an immune deficiency (cough, sinus infections, etc.) and the Pedi doesn't want to test her.  I'm losing my mind over here!


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## my little penguin (Nov 12, 2014)

Can you get the LO an appt with the Rheumo?
I know for my two the ped like horses and have a hard time seeing zebras .

Good luck


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## Maya142 (Nov 12, 2014)

DanceMom - for the rib pain sometimes Voltaren gel or Lidoderm (Lidocaine) patches help. Even a pediatrician could prescribe either. We were told Voltaren gel is better than taking an NSAID since less is absorbed.

I hope A starts feeling better SOON and next infusion works like magic!


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## DanceMom (Nov 12, 2014)

A says her rib feels a little better.  I'm glad that things are heading in the right direction.  If she starts to get worse again I'll take her to the Pedi and ask about the Voltaren gel.  Sometimes I forget we can use the Pedi, lol.

M has always been a sinusitis/asthma/croup sort of kid.  She's had her tonsils removed once, adenoids removed twice, and was scheduled for a sinus surgery but we elected to try sinus rinses per our new ENTs recommendation.  She has confirmed sleep apnea due to her airway issues.  She presents like a typical PID kid, we've just never had the testing done.  Our Pedi thought I was being a nervous mom when I asked for her IgG levels to be checked and said it wasn't necessary.  Our plan now is to finish out this course of antibiotics (14 day course) and then take her to the Pedi to ask for testing again.  If she refuses I'll take her back to the ENT and try to persuade her.  The thought of going through this with 2 kids terrifies me.

On a positive note, I ordered A a therapeutic play kit from Baxter and a PID magazine for kids/teens.  The play kit comes with a bear and infusion supplies so she can play at home or take him along for infusions.  I can't wait until it comes!


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## my little penguin (Nov 12, 2014)

Sorry to hear about M
Hope you can get the testing done .
Was this the same ped since the kids were babies ?
We switched peds after the crohns Dx for Ds .
The prior one thought I was a worry mom and Ds was just skinny with lots of extra issues .
Basically ignored me so went jumped to the go on our own .


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## Sascot (Nov 13, 2014)

Glad that A is a bit better. Sorry to hear about M, hope they listen to you and do the tests. I am just starting with the paediatrician with kid no. 2 which I am dreading.


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## DanceMom (Nov 13, 2014)

MLP- We went through several Pedis when they were younger.  We've been with this one for about 6 years.  My hubby was able to get M an appointment for 11 today so we'll see what she says.  M's cough is horrendous and she says her chest burns.  She also says her head hurts when she looks down, which I'm assuming is her sinuses.  Kinda crazy since she finished her antibiotic last night!


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## DanceMom (Nov 13, 2014)

Pedi thinks M's issues are asthma/allergies.  We haven't done allergy testing in a few years and we are holding off on it for right now.  We are adding a daily inhaler back into the mix (bums me out!) and continuing with the Xoponex at night.  We're also trying Nasonex again and continuing the sinus rinses.  Once she has been healthy for 2 weeks we can test IgG levels.  I'll sleep better at night knowing this is just asthma/allergies!


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## my little penguin (Nov 13, 2014)

Does she have a pulmonogist /allergist ?
Ped generally do not do well with asthma or allergies...
Both if not under control can cause a host of reoccuring issues .
Both my two needed aggressive allergy /asthma meds .


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## DanceMom (Nov 13, 2014)

Both girls saw a Pulmo at our former children's hospital. He was a med pusher and never took the time to explain things to me. We switched hospitals and I found a new Pulmo for M. A was doing well (asthma-wise) and she hasn't seen M's new Pulmo. Unfortunately I don't care for this doctor either. Another pill pusher. I'm not opposed to medication, but both doctors would prescribe several new medications at every appointment.  A has an appointment with a different Pulmo in 2 weeks, and if I like her I'll transfer M.  I just want a thorough doctor that I can trust, but that doesn't go overboard with prescriptions and scopes. I love our GI so much so my expectations are high!


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## my little penguin (Nov 13, 2014)

Unfortunately most asthmatics do need meds to keep from forming scar tissue in their lungs. Polyps in their noses and a whole host of other issues .
NIH has guidelines for asthma that the docs should be following.
It's a step wise program depending on severity and lung function numbers .
Just like crohns that is likely to change with time .

Fwiw my kiddo is on Flovent , dymista , Singulair , Zyrtec  and steriods eye drops plus patanol eye drops just for asthma /allergies .
I will look for the link for you 
It's easier when you can see the chart and guide .


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## my little penguin (Nov 13, 2014)

http://www.nhlbi.nih.gov/health-pro/guidelines/current/asthma-guidelines/summary-report-2007.htm

Table 12 I think in the back


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## DanceMom (Nov 14, 2014)

A was on Advair, Singulair, Albuterol, Nasonex, and Pataday drops. M was taking QVar40, Nasonex, Xoponex, Patanase, Singulair, Dexamethasone, and Zyrtec. M's allergy tests were negative! Now that we know A has an immune deficiency and is at risk for lung scarring I'm okay with preventative meds, even without asthma symptoms. I'm not okay with a small pharmacy in my kitchen for girls with "mild asthma" that we were told they'd likely outgrow as their airways grew. I will continue to look for a doctor that doesn't push whatever pill gives out the nicest kickbacks.


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## DanceMom (Nov 16, 2014)

A received her therapeutic play kit and Igi bear yesterday!  She gave Igi his first home infusion last night and hasn't stopped caring for him since.  It is adorable.  Yes, A is almost 10, but her innocence and love for stuffed animals is precious and this bear seems to be a positive coping mechanism for her.  I'm ecstatic!

Her rib pain is gone, her stools are back to normal, and all is well again.  I'm assuming she had a funky virus of some sort. M is doing a little better too. Thankful for the good days!


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## my little penguin (Nov 16, 2014)

Ds is 10 as well and has a warm buddy
A panda bear with a hot pack
Glad it is helping her


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## Maya142 (Nov 16, 2014)

Glad A is enjoying her bear and feeling! My older daughter (who is 21!) still likes stuffed toys (though she pretends not to :lol


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## Farmwife (Nov 16, 2014)

Grace got her warming bear through the Arthritis foundation. 
She is in love with it. I'm not ashamed to admit I want one too!!!!


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## Maya142 (Nov 16, 2014)

Here you go FW  :http://www.warmbuddy.com/warmbuddy_plush.html


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## DanceMom (Nov 16, 2014)

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

This is the Igi bear. A's medication is not through Baxter, but I signed up for their patient support program and they've been wonderful. I'm going to start looking for IDF events in our area. Time to start owning this disease!


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## Cross-stitch gal (Nov 17, 2014)

Glad you've found something close to home for her!!!  Good luck with everything!!!  Sending lots of hugs your way!


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## DanceMom (Nov 25, 2014)

Infusion #5 today!  All went well and she was an easy stick!  Height hasn't changed in the last 4 weeks (no biggie...she had a pretty big spurt right before that) and weight hasn't changed in the last 8 weeks - exactly 56.44 lbs. the last 3 infusions.  Still up 3 lbs from her first infusion, not bad.

We also met our new Pulmo - love her!  I'm going to switch M's care to her as well.  A's PFTs "weren't terrible but they could be better."  She also heard wheezing in her lower lungs.  Said her throat looked red and irritated as well.  This probably came on gradually so A never really complained....just kept plugging along.  She now has a daily inhaler and nasal spray and we'll re-evaluate in a few months.  She's bummed to have to take daily meds again, but CVID puts her at a greater risk for lung damage.  I'm upset that she's had an undetectable (without a stethoscope) wheeze for who knows how long and I didn't know.  She's a tricky one.


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## DustyKat (Nov 26, 2014)

Thanks for the update DanceMom.  

So fab to hear that the infusions are going well! Long may that continue! :ghug: 

But so sorry to hear about the wheeze and the need for meds, bless her. I hope the meds make a difference and she feels much better now she has started on them. 

Sending loads of hugs and healing thoughts your way! :heart:

Dusty. xxx


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## Farmwife (Nov 26, 2014)

I hope the step up in asthma treatment helps.
Grace's Allergist stepped up her treatment and seems to be helping.
Her nose spray seems to a help but dries out her nose.

I'm glad overall she's better.:dance:


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## my little penguin (Nov 26, 2014)

Ayr gel helps for dry nostril farmwife 
Just make sure it's not the kind with aloe.


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## Farmwife (Nov 26, 2014)

my little penguin said:


> Ayr gel helps for dry nostril farmwife
> Just make sure it's not the kind with aloe.


We use Ary  saline nasal mist. I haven't seen the gel. Thanks


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## Mehita (Nov 26, 2014)

my little penguin said:


> Just make sure it's not the kind with aloe.


Why no aloe?


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## DanceMom (Nov 29, 2014)

Despite using post-meds A is experiencing a severe headache and vomiting/reflux from her infusion. We're about to try Motrin, and depending on the effect may be making an ER trip. She's lethargic and I'm worried she may be getting dehydrated. Anyone else ever have post-infusion reactions like this? I realize the medication is different, but I'm looking for some BTDT advice.


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## Maya142 (Nov 29, 2014)

We were told to call our doctor (whoever is on call) if M had a reaction like that. You could try that but if it's really bad, I would head to the ER.

Hope A starts feeling better soon!


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## DanceMom (Nov 29, 2014)

She perked up a little after the Motrin. Even ate a few bites for dinner and showered. Then her left eye (bottom lid) started swelling pretty suddenly. Gave her Benadryl and she's icing it. Looks like an allergic reaction or infection to me. Waiting to see if this helps.


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## kimmidwife (Nov 29, 2014)

I would give them a call tomorrow just to let them know. Sorry she is going through this.


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## my little penguin (Nov 30, 2014)

Didn't her eye swell before ...
Not from infusions 

So maybe something completely different at play .
Hope she is feeling better


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## DanceMom (Nov 30, 2014)

I don't remember it swelling before but I do have a terrible memory. This swelling came on suddenly but Benadryl helped significantly. She did start Flonase recently so we are going to skip a few days to see if that makes a difference.

*eta: I looked back at a previous thread and saw that she did have an eye issue quite some time ago. That was her top lid and wasn't as red/swollen as today.


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## Sascot (Nov 30, 2014)

Hope everything settles down soon


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## DanceMom (Nov 30, 2014)

She's back to her normal perky self today....head and eye are fine.  She lost 2 lbs in the process but her appetite today was great so I'm sure she'll gain it back.  Labs from infusion came back and they were perfect.  Going to talk to Rheumo about slowing down future infusions.


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## DanceMom (Dec 5, 2014)

A has done fairly well the last few days though she's been dealing with some constipation issues.  There's a first time for everything! lol  I really think it is because she got slightly dehydrated last week when she felt so sick and wouldn't eat or drink much.

Spoke with our specialty pharmacy yesterday and I'm still in a bit of shock.  We will meet our out-of-pocket max with her first infusion in January and then be responsible for a $45 co-pay for each additional infusion.  Add in $100 in asthma meds per month and $45 co-pay for specialist visits (usually 1 every 6 weeks or so).....and that's a lot!  That doesn't even factor in the $40/month supplements, OTC meds for post-infusion, plus gas and tolls when we travel for appointments.  I don't even want to calculate it all up right now.....ugh.....


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## DanceMom (Dec 12, 2014)

I spoke with A's Rheumo today about her post-infusion reaction. He was concerned but not surprised. He said that flooding the blood with protein can make you very ill. So for her next infusion we're going to add prednisone, more saline, and slow the rate. If that doesn't help we can change the brand of medication. I'm pretty hopeful it will help though. So our infusion time just got a little longer. Lol


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## Farmwife (Dec 12, 2014)

Well hopefully that will all work.
How is she lately?
Hugs


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## Sascot (Dec 13, 2014)

Hope it works!


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## DanceMom (Dec 13, 2014)

Farmwife- She's doing great! She still hasn't gained back the weight she lost after her infusion so I'm going to order some Benecalorie today. She looks very thin which I hate to see. But she feels good and has plenty of energy, so if weight gain is our biggest issue I'll happily take that!


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## Brian'sMom (Dec 13, 2014)

Have you used Benecalorie before? I've heard it's really oily. And even made from an oil.


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## DanceMom (Dec 13, 2014)

No I haven't. I assumed it was a powder. She hated the Boost juice boxes so this was plan B. I feel like she eats plenty, and she's grown in height, she just can't seem to put on weight. She's starting to look unhealthy.


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## my little penguin (Dec 13, 2014)

Was it a matter of her not liking the taste or physically getting ill after drinking it...?
Has your gi given you samples of
Elecare
Neocate junior
Eo28 splash
Peptide
Peptamen jr
As well as the grocery versions
Kids boost
Pediasure
Carnation instant breakfast
Pediasure powder ( can be hidden in things )
Bright beginning (soy drink)
Pediasmart ( organic drink)
Kids orgain ( organic drink )

We made Ds try the elementals ( few sips - 2oz)
Then the semi elemental next day 
Lastly the grocery version

When we did it in that order 
Suddenly the grocery store versions tasted good like dessert .

Just not sure how you would both feel
About a tube
Since docs will let it go only so far if she isn't gaining /losing and won't drink orally .
There are also smoothies
My oldest liked this one
Almond milk ( or whole milk)
Ice cream ( Coconut or milk version)
Pure pumpkin
Cinnamon
Nutmeg
Maple syrup
Nut butter ( lots of it for protein )
And crushed ice

Other smoothies 
Oatmeal cinnamon and banana plus milk I cream etc...

Have you added oil to cooking all veggies
Butter under peanut butter /jelly sandwiches
Tried tracking her calorie intake in fitness pal or something else for two weeks
This might help you figure out if she just isn't getting enough calories due to appetite
Or type of calorie needs to change .

I know it's not easy 
Way too many people including nurses etc...
Would jokingly say "let me take him to my house I'll fatten him up ."
If only it were that easy .

:sigh


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## my little penguin (Dec 13, 2014)

https://www.neocate.com/shop/p-49-polycal.aspx

Thus one is powder based polyocal


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## DanceMom (Dec 13, 2014)

MLP- She didn't like the taste of the juice boxes and they did have a terrible smell. Typically she isn't picky about juice but she just hated those. We've tried Boost and Pediasure and she didn't like those either. The GI didn't have samples to give us, we tried the ones the stores  offer. We've told her that if she chose not to drink then she risks having to get a tube. I don't think she takes us seriously. We're going to try the Benecalorie at the GI's request, then we'll see what he says at her February appointment (or sooner if he doesn't like her weight at infusions).


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## my little penguin (Dec 13, 2014)

Neocate and/or nestle nutrition store sometimes will send samples ( free if you ask )
That was how ds tried e028 splash btw.
Hope the bencalorie works it's magic.

Good luck


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## Tesscorm (Dec 13, 2014)

My son was always a picky eater and always thin...  it's a tough go trying to convince them when they're young. :ghug:  One other suggestion I've made on other threads - try looking up Boost recipes, most of the recipes are baked goods (muffins, pancakes, etc.) but they also have some soups, quiches, casserole, etc.  And, using the shakes in the recipes, you can increase the calories and nutrition.  I'm sure you can substitute Boost shakes with some of the other brands as well. 

Good luck! :ghug:


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## kimmidwife (Dec 13, 2014)

Tess,
What a great idea! I am going to look those up!
MLP!
That was a great list! Thanks! We are also trying to boost Caitlyn's weight so I a, going to try some of those suggestions.


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## Catherine (Dec 14, 2014)

Things we were told by sports dietitian to gain weight.

3 meals and 3 snacks per day.

Snacks - a piece of fruit doesn't count as as a snack as too low in calories.  You need to add something else like yoghurt 

Supper - a milk drink eg milo and a biscuit.

Add butter or oil when ever possible.

Avoid plain water, add favouring.

Keep a food diary.

If you decide see a dietitian make sure you do a food diary for least two weeks leading up to the diary.  Otherwise the first appointment will be wasted.  They should try an tailor to the individual ours was aimed at increasing weight and ferritin levels.


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## DanceMom (Dec 14, 2014)

I did call Nestle when I wanted samples of the juice boxes. They said they couldn't send samples because it was considered a medical product. I was really surprised the juices were so awful.

We have seen a dietician and she felt A ate plenty. Her only suggestions were to drink more milk and add butter/oil to foods when possible. A eats 3 meals plus 2-3 snacks per day.  Here's a sample of what she ate yesterday.....

Breakfast: bowl of cereal with milk, raspberries
Lunch: taco pizza rolls (homemade with meat, cheese, sour cream), rice, juice
Snack: Apple slices with peanut butter, milk
Dinner: chili, chicken nuggets, pizza rolls, crackers, cookies and cake, lemonade (we were at a party, lol)
Snack: popcorn, juice
Snack: milkshake

Typically she has some veggies in there but she really does eat enough for an almost 10 year old. Appetite definitely isn't the issue. Benecalorie should be here tomorrow.


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## Brian'sMom (Dec 14, 2014)

Let us know how the Benecalorie goes. I was going to order some until I heard the oily thing. I'd love to find something that can be added to food... Not a separate drink like the pediasures we are doing


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## Maya142 (Dec 14, 2014)

My extremely picky daughter actually liked Carnation Instant Breakfast - you can just get it in a grocery store and there are several flavors. It did make her nauseous though. Duocal is another powder that was also suggested to us.

In terms of the ones she tried, she didn't like Boost, Ensure, Pediasure peptide but got used to Peptamen Jr. However, she does say that though she was VERY against the tube at first, now she thinks it's much easier than drinking Peptamen.


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## DanceMom (Dec 14, 2014)

The GI has mentioned a tube to A and even showed her a doll with a g-tube. She was pretty adamant that she didn't want that, but I don't think she takes the idea very seriously. We are very busy, so the idea of being able to mix a liquid with something she is already eating/drinking sounds perfect. I also like that Benecalorie is relatively inexpensive. Our medical costs are really adding up.  I'll definitely update to let you all know what she thinks of it and if it helps!


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## crohnsinct (Dec 14, 2014)

Is she still doing a lot of dancing?  Did the nutritionist know exactly how much she was doing and the intensity?  I am amazed at how many extra calories are needed when you take their physical activity into account. 

Why was the doc talking about a g tube?  If she is eating most of her calories and it is just supplemental stuff you are talking about would an ng tube and feedings overnight suffice? 

I feel your pain.  I grew up a very skinny kid with no diseases and was still constantly watched and told to gain weight.  O is "medically anorexic"  always has been and I dare say always will be.  Her doc is a super skinny beanpole so he gets it and says, "being skinny isn't a disease".  Luckily O is doing very well on all other fronts so the weight isn't really an issue...unless of course you consider the amenorrhea:/   We are starting with the shakes but the fine line for us becomes shakes decrease her appetite so it is finding the right balance.


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## DanceMom (Dec 14, 2014)

She dances 5-6 hours per week. Sometimes a little more. Her doctors and the dietician are aware.  Her GI's daughter is the same age and dances competitively as well. We've done Periactin in the past, but her appetite really isn't the issue.

I'm not sure why he didn't discuss the NG tube. I did talk with A about it as an alternative but she was completely freaked about putting something up her nose. She said she'd prefer the g-tube (but who knows how she'd really feel if it came right down to it).  A was in the 8th percentile for weight prior to losing recently. She's in danger of falling completely off the chart.  Her face has lost that healthy look and it does concern me a little.


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## DanceMom (Dec 15, 2014)

Well.....we are currently having a crying fit over the Benecalorie. I'm letting her dad play "bad cop" on this one because my heart isn't tough enough. I tasted the liquid and it has a slightly sweet chalky taste. I really think she's making a bigger deal out of it than what it is, but she can be stubborn when she wants to be.  I seriously can't go through this every night.....


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## crohnsinct (Dec 15, 2014)

AW Dancemom, I am right there with ya.  O missed swim yesterday because I old her shakes and swim or no shakes and no swim...her choice.  It's hard because she has a BIG meet coming up this weekend up in Boston but a parent has to do what a parent has to do eh?  

Can you give her a choice...shake or....avocado sandwich or some other high good fat food?


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## Maya142 (Dec 15, 2014)

My daughter is much older but within a few days, the arguments over Peptamen Jr stopped and she just got used to it (it helped that we bribed her for the first few weeks :lol. 

If she has to drink some kind of shake, what about giving her a choice of several shakes (Boost, Pediasure, Benecalorie, Carnation Instant Breakfast, whatever else your GI has samples of) and let her choose? That way she'd have some control over it.


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## DanceMom (Dec 16, 2014)

Night #2.... Still a fight. She got so mad tonight she actually kicked the box of Benecalorie. We tried mixing it with applesauce tonight but she's just not having it. We've tried high-calorie shakes but they made her full and she ended up eating less at meal time (so she didn't gain weight). She says she's had diarrhea 7 times today (I only witnessed it once) and she blames the Benecalorie. She could be right but I don't want to give up just yet. This just sucks so thanks for listening. I know you all get it. I also know we're in a pretty good spot overall.....I just want things to be "normal" and since they aren't I want to whine.


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## Maya142 (Dec 16, 2014)

M got nauseous/had diarrhea on most shakes too - what worked was Neocate. I don't know if it's palatable though because she already had an NG tube when she tried it.
Sorry  I know how hard it is to try to get them to gain weight, it really feels impossible sometimes!


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## DanceMom (Dec 17, 2014)

Last night was an epic fail.  After 2 hours of struggling to get her to eat the applesauce/Benecalorie she vomited the entire thing up....and then some.  I'm hoping that the vomiting was more from being upset than the actual food.  We're going to try one more time tonight.  She's agreed that I can spoon feed her and that will take away some of her anxiety, and she can have a piece of candy when she's finished.  Fingers crossed for better results!  She's down to 52.8 lbs now which is about a 4-5 lb loss.


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## Tesscorm (Dec 17, 2014)

I hope tonight is a bit easier for her and you.   My son was so picky when he was younger, I sooo understand your struggle and frustration. :ghug:

I've never used benecalorie but is there any way it can be mixed in with food when she's not aware of it?  Is it best given in a single dose or can it be split over the day? For example, 1/2 a teaspoon added in her morning cereal, another 1/2 spread into a sandwich at lunch, etc. ?  Even if you have to start with a 1/4 tsp and gradually work up to 1/2 tsp??  When S was as young as A, my best successes were with covert actions and white lies!  :lol:  Pureed soups worked and were the best at masking veggies/flavours.  To increase fruit intake, I'd send cut up fruit with cake sprinkles/sugar to dip into (cud benecalorie be added there?), made chocolate fondue with fruit (benecalorie in the chocolate?)...  

:ghug:


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## DanceMom (Dec 17, 2014)

The Benecalorie is a white, oily/chalky liquid.  There's quite a bit in a cup and it is easily detectable even when mixed.  Oatmeal would probably be perfect to mix it in but she won't eat that.  She also won't eat pudding or yogurt.  I think it is a texture thing.  I tasted the Benecalorie myself and it has a slightly sweet taste that leaves a chalky feeling in your mouth.  I don't think it is the taste she hates as much as the texture.


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## Tesscorm (Dec 17, 2014)

Ugghh!!  For some reason, I thought it was a powder...  I guess it was mentioned somewhere but I didn't read it correctly. 

Well, if white lies didn't do it with S, bribery came next!  :ytongue:  But, seriously, I remember it was next to impossible to convince S to eat/drink something he didn't want to.   As far as yogurt, my kids also wouldn't eat it when they were very young - I used to freeze it in popsicle moulds...  (not the frozen yogurt you buy, but the actual yoghurt).  But, really, it sounds like she would taste/feel it even mixed in yoghurt.

Would it be more palatable if it was diluted with water? ... making it less oily/chalky?  Can you make drinking it into a game?  Ie if she drinks it in 5 minutes = $2, 10 minutes = $1, etc.  Or, break it down into smaller portions - a sticker on a board for each 1/4 or 1/5 cup and xx number of stickers equal something she wants??  This way she can see a reward without having to drink the entire 1 cup (hopefully, the more 1/4 cups she drinks, the easier it'll become and she'll become more 'motivated' as she gets closer to the 'prize'.

One more thing I used to do to try to increase the 'veggie' intake :lol: - I had a Treasure Box of small prizes - if the kids ate a new veggie (in S's case, any veggie!), they could choose a prize from the box.

I used all of the above over the years...  :lol:  They never worked for long but, would work for a little while.


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## kimmidwife (Dec 17, 2014)

Dancemom,
I just went out and bought for Cailtyn and myself whey protein powder. You can add it to milk and it is supposed to taste good. I will let you know how it goes. It was not to expensive either.


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## Tesscorm (Dec 17, 2014)

If protein powders will do the job for A (and for Caitlyn), this is a recipe my daughter uses to make protein powder pancakes...  (she also adds cocoa powder to the mix for chocolate pancakes).  Instead of using maple syrup, she mixes flavoured protein powder (oreo cookie or peanut butter flavour??) with milk and uses that as her syrup for the pancakes.


Ingredients
■1 cup raw oats
■1 scoop protein powder
■3 egg whites
■1/4 cup water
■1 1/2 tsp cinnamon
■2 packets sweetener
■1 1/2 tsp baking powder


Directions
1.Place all ingredients in a blender and blend for 30 seconds. 
2.Then pour onto a hot grill and cook like a normal pancake.
3.An optional addition is to add some frozen fruit after the batter is blended.


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## kimmidwife (Dec 17, 2014)

Thanks Tess! This sounds great!


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## Clash (Dec 17, 2014)

I feel your pain, C never could stomach the formulas(even otc) orally! I hope you can find something she can work with! HUGS!


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## DanceMom (Dec 17, 2014)

Oreo flavored pudding was a success! I think it also helped that I fed her and it wasn't a long, drawn-out process. She said she feels bloated but not nauseous. I feel like we achieved something! Lol


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## Brian'sMom (Dec 18, 2014)

Maybe after the Benecalorie nights the pediasure shakes will seem like a treat! I feel your pain. Weight issues are exhausting!


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## DanceMom (Dec 23, 2014)

At A's infusion now. She's only down 1 lb so not too bad. Things have gone well so hopefully that continues post-infusion as well. Her BP is definitely more stable with the solumedrol. Both my girls have caught some sort of virus that includes a sore throat and diarrhea. Hoping they are better ASAP!  We can't test M's IgG until she's been healthy for 2 weeks and we can't seem to make it to that point.


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## DanceMom (Dec 26, 2014)

Both girls are feeling better, only left with coughs now. The changes we made to A's infusion really helped and we were even able to cut down on post-meds. Now to focus on weight gain! Her appetite has decreased some with the virus and excitement of Christmas.  Just thankful she feels good and our holiday was great!


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## Farmwife (Dec 26, 2014)

I'm so glad to hear she had a good Christmas.
I hope the new increase will do the trick.


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## DanceMom (Dec 28, 2014)

The title of this thread is so appropriate for this post, lol......

A's labs came back and a few things have me concerned.

1. *Absolute Lymphocytes are 1247 (1500-6500):*  Her lymphocytes tend to range from 2200-2900 so this is a definite drop.  Could this be from the virus she was fighting?  What does a low lymphocyte count really mean?

2. *Hematcrit at 44.9% (35-45%) and Hemoglobin at 15.1 (11.5-15.5):* I realize that these aren't out of range quite yet, but Hematocrit typically stays steady at 35-37% and Hemoglobin is always around 12-13.  The only other time it was elevated was during her last hospitalization in February when Hematocrit was 41% and Hemoglobin was 14.6.  I'm assuming the reference ranges were lower at that time due to her age, so they were marked as being elevated.  Does this sudden increase indicate anything in particular?

3. *Potassium is 3.7 (3.8-5.1):* So only slightly low.  Doesn't concern me too much, just don't like seeing anything out of range I guess.

4. *Calcium is 10.5 (8.9-10.4):* Also only slightly high.  Is too much calcium even a problem?

IgG looks great, and even IgA and IgM have increased!  She still has a cough despite following her sick plan given by Pulmo.  I'll give it another few days before calling.  Just wanted to see what you all thought of these lab results.


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## kimmidwife (Dec 28, 2014)

Potassium believe it or not is concerning even when only slightly lower then normal. Get her to eat bananas. They help with potassium.
Here is a nice article about lymphocytes and what you need to know.
http://www.healthcentral.com/encyclopedia/408/336.html


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## Catherine (Dec 28, 2014)

2. Hemoglobin and hematcrit.  Dehydration can give a false high for both of these.


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## DanceMom (Dec 28, 2014)

She hates bananas. I'd have better luck getting her to eat Benecalorie. Lol Any other foods high in potassium? And the article seems to only discuss high lymphocytes, not low. Unless I missed it....

And she definitely isn't dehydrated. If anything she was over-hydrated. She has to drink a ton of water before and after infusions to limit side effects.


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## malorymug (Jan 1, 2015)

Potatoes are high in potassium!


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## DustyKat (Jan 2, 2015)

How many milligrams (mg) of potassium you'll get from these potassium-rich foods:                                               

Winter squash, cubed, 1 cup, cooked: 896 mg
Sweet potato, medium, baked with skin: 694 mg
Potato, medium, baked with skin: 610 mg
White beans, canned, drained, half cup: 595 mg
Yogurt, fat-free, 1 cup: 579 mg
Halibut, 3 ounces, cooked: 490 mg
100% orange juice, 8 ounces: 496 mg
Broccoli, 1 cup, cooked: 457 mg
Cantaloupe, cubed, 1 cup: 431 mg
Banana, 1 medium: 422 mg
Pork tenderloin, 3 ounces, cooked: 382 mg
Lentils, half cup, cooked: 366 mg
Milk, 1% low fat, 8 ounces: 366 mg
Salmon, farmed Atlantic, 3 ounces, cooked: 326 mg
Pistachios, shelled, 1 ounce, dry roasted: 295 mg
Raisins, quarter cup: 250 mg
Chicken breast, 3 ounces, cooked: 218 mg
Tuna, light, canned, drained, 3 ounces: 201 mg

Source:

http://www.webmd.com/food-recipes/features/potassium-sources-and-benefits?page=2


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## Catherine (Jan 2, 2015)

Paging SarahBear, I think she is the member with high calcium.


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## DanceMom (Jan 2, 2015)

Thank you for the list of foods high in potassium!  Of that list, A likes potatoes, orange juice, broccoli, pork tenderloin, milk, salmon, raisins, and chicken breast.  I will try to increase those foods in our weekly meal plan.  I've noticed that her appetite is slipping after each infusion.  Last infusion I attributed it to the severe reaction she had.  But this infusion she only had a mild headache that eased with Tylenol and she seems to be eating less as time goes on.  Her GI appointment is in February and I think I'd be willing to give Periactin a try again.  This Benecalorie just isn't putting on the pounds the way I'd like.

And as for my little one.....we are going to get her immune labs done today.  The Pedi agreed that we should just get it done to see where she stands since she continues to get sick more than once per month.  I really hope that this is just a case of stubborn asthma and jacked-up sinuses because the thought of having 2 on IVIG turns my stomach in knots.  Regardless, we need answers so we can make the best plan for her.  Praying for perfect labs!


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## DustyKat (Jan 2, 2015)

I hope all turns out well for your little one DanceMom. :ghug: Sending loads of luck and well wishes your way! :goodluck: 

I imagine the Benecalorie is only going to be as good as her appetite IYKWIM. Refresh my memory, how often are the infusions and does her appetite pick up at all between them?

Thinking of you. :heart: 

Dusty. xxx


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## Sascot (Jan 2, 2015)

Hope you get to the bottom of it. Just thought I would add, that I have been reading up on parathyroid glands as I have a lot of the symptoms. High calcium is something to keep an eye on. The website I read said it could mean a problem with the parathyroid glands. You can have a look on www.parathyroid.com.


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## DanceMom (Jan 2, 2015)

In the past A always had a great appetite. In fact, too good. She would eat as much as an adult, yet not grow or gain weight. It was a clear sign something was wrong. After she started IVIG I noticed her appetite wasn't as great, but I took that as a good sign. She had finally achieved a more normal appetite and she did grow vertically, just didn't gain weight. But that normal appetite seems to have decreased after these last 2 infusions, particularly this last one. We've been doing the Benecalorie nightly, mixed with ice cream, but she definitely isn't gaining. I made her a high calorie shake for breakfast and she skipped lunch. I made her one to go with her dinner and she drank it, but only nibbled on the dinner. She seems to feel good and has energy, just not much of an appetite.  Her infusions are every 4 weeks, and they are definitely helping her overall, but with her last labs being off and her change in appetite I can't help but be a tad on edge.


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## DustyKat (Jan 2, 2015)

It would be hard for you not to be edge hun. :ghug: 

It surely puts you between a rock and a hard place when drinking the high calorie shakes leads to a reduction in appetite for food.  

Is loss of appetite a side effect of the infusions? 

Dusty. xxx


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## DanceMom (Jan 2, 2015)

Well......we have a problem.  A told me yesterday that it hurt when she peed.  She complains of this from time to time and then the symptoms seem to go away.  I didn't think much of it.  This evening she tells me that her bottom hurts and itches and that she's had diarrhea three times today.  Said she didn't tell me earlier because her friend was over.  I assume the area is irritated from the diarrhea but decide to look and OMG! She is extremely red, from her vagina all the way up her butt crack (hope I can say those words....geez....).  I don't mean just a little red and irritated, I mean the skin is bright flaming red and looks horrific.  I can't imagine that this happened overnight.  Maybe a strep infection?  Anyone dealt with anal strep before?  Her birthday party is tomorrow and I don't want to interfere with that but I also don't want to let something potentially serious go untreated.  Or maybe it isn't serious?  Oh somebody please give me some advice......my mommy instincts are tired!


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## crohnsinct (Jan 2, 2015)

Not that I think this is what she has but both O and I have had yeast infections that caused that and most recently psoriasis that sounds just like that.  

Could also be something in her stool that is affecting the area.  I wouldn't apply any medicated creams unless you speak to a derm.  The skin there is very thin and steroid creams can do damage.  Witch hazel wipes...apple cider vinegar diluted in water can help in the meanwhile. 

So sorry!  I hope she feels better for her party tomorrow!


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## my little penguin (Jan 2, 2015)

Muripursin has helped the area with air more than once for Ds


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## DanceMom (Jan 2, 2015)

Isn't that by prescription only MLP?  She is airing the area overnight but I doubt that will make much of a difference.  This isn't the mild rash she used to get.  This is very different.  Very defined borders, no scaling or patches, no bumps.


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## my little penguin (Jan 2, 2015)

Muripursin is prescription 
Neosporin is similar just not as strong
The muripursin took care of the bleeding , bumpy kind .


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## DanceMom (Jan 2, 2015)

We do have Neosporin.  I can try that in the morning.  I just don't want to cause her more pain if that isn't what she needs.  Seems like anything I put on it will burn.


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## DustyKat (Jan 3, 2015)

Do you guys have Canestan cream there? It’s an OTC anti-fungal. 

Also a barrier cream like Calmoseptine may be helpful but use sparingly. 

Hope things settle DanceMom and she is on top of things for her party! Good luck! 

Dusty. xxx


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## DanceMom (Jan 6, 2015)

Just a quick update....bottom area looks a little better (no treatment other than giving the area air during bedtime).  She asked me to hold off on notifying the doctor until her appointment next week so I respected that.  She doesn't like these things to interfere with her schedule, lol.

My other concern right now is her bruises.  She is covered in bruises of varying sizes, all over her body.  She's always been an easy bruiser but she looks like a victim of abuse - seriously.  The ones on her legs are easily 2 inches in diameter and she also has them on her hip, her shoulder, her elbow, her arm, and the back of one thigh.  She had a break from dance for 2 weeks so the bruises aren't from that.  Anyone else's child bruise this easily?


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## Farmwife (Jan 6, 2015)

EN spots ?


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## crohnsinct (Jan 6, 2015)

Gosh, I have seen easy bruising mentioned as a sign of a lot of things.


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## DanceMom (Jan 6, 2015)

Farmwife - These definitely look like bruises.  Her EN/vasculitis spots usually start out very red and raised.  These are mostly flat and varying degrees of black/blue/purple.  

I've notified the doctors before of this sort of bruising (probably wasn't to this extent) and they usually run a CBC to check platelets.  Last CBC on the 23rd her platelets were low-normal at 192 (140-400).  The only thing flagged was lymphocytes (low).  She'll have another CBC at her next infusion 2 weeks from today so I guess we'll see then.  It just looks awful.


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## Farmwife (Jan 6, 2015)

That's Grace's EN!!! The dermatologist said that EN spots can change appearance depending how "deep" in the fat layer they go.  
She said if the spots turn the yellowish/greenish than that's a regular bruise. Grace's NEVER turn that color. Hers BTW can disappear within a day. Regular bruises don't do that....well at least mine don't.


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## Johnnysmom (Jan 6, 2015)

It can also be a sign of liver issues.  Johnny had this temporarily when his liver enzymes were too high, it ended up correcting itself by the time they figured out what it was.  He is still on the medication that caused the issues, somehow is body adjusted.


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## Farmwife (Jan 6, 2015)

Does her dx cause liver or blood clotting disorders?


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## Maya142 (Jan 6, 2015)

Is she on an NSAID by any chance?


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## DanceMom (Jan 6, 2015)

CVID isn't known to cause liver issues but IVIG is. She does have a finicky liver so she has a CMP with every infusion. Sometimes her numbers rise slightly then go right back down. The only other medication she takes is an inhaler, nasal spray, and Tylenol/Benadryl as needed. She told me she's still having diarrhea (since Thursday). Something is definitely off.


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## DanceMom (Jan 6, 2015)

So I just checked out her "bruises" today and almost all of the leg ones are gone! The one on the back of her thigh is still there, and her shoulder. Hip one is gone, so is elbow. Arm spots are still there along with 2 new ones. This is why I take pictures! You may be right Farmwife! Surely bruises couldn't heal that fast. A's EN spots usually last at least 3-4 days but I suppose things could change.


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## Brian'sMom (Jan 6, 2015)

I'm sending you hugs. You've all been thru so much lately. I hope things get figured out soon.  It's hard when things keep popping up- Puts you on high alert and is stressful. Hang in there 

I agree that bruises might turn greenish yellow before going away.


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## my little penguin (Jan 6, 2015)

http://www.rarediseasesnetwork.org/pidtc/Wiskott-Aldrich/


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## my little penguin (Jan 6, 2015)

http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/autoimmunity/


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## my little penguin (Jan 6, 2015)

http://www.rocketswag.com/medicine/...cy/Primary-Immunodeficiency-And-Bruising.html

Three different links on bruising associated with CVID


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## kimmidwife (Jan 6, 2015)

Sorry to hear you are having another thing to worry about. Did you call the doctor about it?


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## DanceMom (Jan 7, 2015)

I haven't told the doctors any of this yet.  She wants to settle back into school and dance without being hassled by extra doctor visits and labs.  I do understand and try to respect her wishes.  She sees the Rheumo next Friday so I will bring up all of my concerns then.

Waiting for the Pedi nurse to call with M's lab results.....


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## Sascot (Jan 7, 2015)

It is hard having to drag them out of school, etc for appointments. I hope you get some answers next Friday and nothing new pops up before then


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## DanceMom (Jan 7, 2015)

Per nurse, M's results were all within normal limits.  IgG was 786 (673-1734).  I will go later this week to pick up a hard copy of results because I've learned the hard way that that is necessary.  So now that we've ruled out immune deficiency (I think) we can focus on treating her asthma and chronic sinusitis.  So thankful that her labs looked good!!

And today is A's 10th birthday!  Can't believe my sweet girl is 10!


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## crohnsinct (Jan 7, 2015)

Great news on M's test results! 

:bdayparty: to A!  Hope you enjoy your day! Double digits!


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## Farmwife (Jan 7, 2015)

:bdayparty:


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## kimmidwife (Jan 7, 2015)

Happy birthday!!! Amazing how fast it goes by!!!!


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## Maya142 (Jan 7, 2015)

:birthday2: Happy Birthday A! Hope she had a wonderful day!


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## upsetmom (Jan 7, 2015)

:bdayparty:

Happy Birthday A


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## DustyKat (Jan 7, 2015)

A GREAT BIG HAPPY BIRTHDAY TO YOU A! :dusty::dusty::dusty::dusty:







Dusty. :heart:


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## Catherine (Jan 7, 2015)

Happy Birthday A!!!!


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## DanceMom (Jan 11, 2015)

This month just hasn't been a great one. A had bloody stool today. She says she feels fine, but with the recent diarrhea, red bottom (which is now significantly better with no real treatment) and the "bruises", I'm just thinking that something is off. Not to mention she can't seem to gain any weight. Her IgG is good, which concerns me that there could be some sort of autoimmune issue beginning. Frustrating.


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## Farmwife (Jan 11, 2015)

A is an amazing kid. I'm so sorry so has to go through this.

Who do you call for this?


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## DanceMom (Jan 11, 2015)

We see the Rheumo Friday and the GI beginning of February. Knowing them they'll argue about what it could be, lol. The GI tends to be more aggressive with testing so we'll see. I know he won't be pleased with her weight. Could possibly be an indicator that things inside are inflamed again. Odd thing is that she's in no pain. She's always had severe stomach aches in the past. Maybe I should just accept that she'll never be "normal" and these things are just minor?


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## Maya142 (Jan 11, 2015)

Is it possible that she has something else going on too? I remember at one point vasculitis was a possibility, was that ruled out?

Have you considered an NG tube for A? M was very against getting one and now thinks it's so much easier than constantly fighting about drinking Peptamen/Boost/Pediasure etc. There are some great videos online that show kids about her age inserting them by themselves!

Hope the rheumatologist and GI have answers for you.


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## DanceMom (Jan 11, 2015)

She's adamant that she doesn't want an NG tube, saying she'd prefer a g-tube if it came down to it. Considering she isn't very compliant with the supplements, that would probably be the way to go. However, my husband seems very adamant that none of that is necessary and we just need to find the right supplement. I trust our GI and will go with his recommendations. And maybe things will be okay after her next infusion. Maybe this month was just a blip. Who knows.


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## my little penguin (Jan 12, 2015)

Unfortunately
She would need a NG tube prior to a g tube.
That is pretty standard . 
So you can tell is supplementation will actually work prior to having surgery.
Not saying they wouldn't do the g tube but most Gi I know of require the NG first regardlessincluding insurance .
So you might want to have a long talk with her given she is only 10.
Surgery has risks and putting a g tube in also increases the risk of infections at the site.
Skin breaks down and granulates -most need covers around the button.
Emergency tube supplies to keep at school and when you go out.
Changing the g tube every couple of months to twice a year at the hospital when she is growing or the buttons wear out.
Which depending on her pain tolerance involves means anaesthia.

I know a lot of moms and kids with g tubes for other reasons so I just wanted you to be aware so you could prepare yourself and your kiddo.
I know more than a few kiddos who are doing well with the g tube.

Is she still refusing to even try supplements to drink ?
Is the plan for her to wear a backpack full of formula during the day while at school?
Or just night feeds where she tethered to the pole to sleep ?
Realizing the pump typically needs refilled at night so your waking up at night to add formula or turn off beeps
More expensive pumps have two sides but most insurances makes you rent the pumps 
Again something to look into .
Hope it works out but better to be prepared ahead of time .


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## DanceMom (Jan 12, 2015)

We haven't discussed fine details of getting a tube and I hope it doesn't come to that.  I'm aware of the risks, but I'm also aware of the risks of being malnourished.  I'll do what the GI recommends.

She takes the Benecalorie every night with ice cream.  She complains and sometimes cries and it isn't a pleasant experience.  She gags, retches, and sometimes vomits.  I can only imagine the fight of trying to get her to insert an NG tube nightly.


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## my little penguin (Jan 12, 2015)

Wasn't try to scare you away from the g tube...
As I said I have seen it work miracles for many kids who go from sickly to healthy .
Just wanted you to have the info since there is way more to it in daily life than most realize.
Also from what you have posted it's doesn't seem like a single serving of benecal is enough to do much for her .

One last question 
Have you made the supplements negotiable ?
Or treated them like a normal food /dinner
Versus meds/safety helmet sorta thing....
It can make a difference for some.

Ds was told either he drank a shake ( he got to pick ) or he got a ng tube -
Period no kinda sorta thing.
He got to chose the route of intake not whether he was going to drink it.
First one took well of three hours of me pinching  his nose and him crying 
Second one a little better 
By day 4 minimal crying 

Some kids can't physically drink them no matter how hard they try -which means a trial with a ng tube automatically after a week of oral trial 
Can you try the benecal three times a day ???

Good luck


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## DanceMom (Jan 12, 2015)

Our written orders were to use Benecalorie 1-2 times a day.  Once a day is such a battle that we haven't attempted two.  She will only take it with ice cream and that isn't very portable (she doesn't eat breakfast or lunch at home).  In the beginning there were screaming/crying fits that lasted for hours (I think I posted about it).  Now it takes about 30 minutes for her to get it down.  She's always been very compliant about things in the past, but now that she is getting older she wants her voice heard and I get that.  The whole situation is stressful for our entire family.  I'm hoping the GI will lay out the options when she sees him and she can make her choice and go from there.


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## my little penguin (Jan 12, 2015)

http://community.kidswithfoodallergies.org/topic/feeding-tubes-101

http://community.kidswithfoodallergies.org/forum/elemental_diet

Links to KFA
No foods /Tubey group
Requires login but free
Has btdt parent advice on tubies /photos pitfalls etc...
Highly recommend Tubey 101
And Tubey 201 stickies at the top of the threads .

Hope it helps


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## Farmwife (Jan 12, 2015)

I'm a tubey fan! Yes , their are a lot of things to remember but just like we asthma moms get use to carrying around inhalers, remembering asthma plan, avoiding allergen and trying to make sure they don't get pneumonia, it all becomes old school quite quickly.
Does it every feel normal? NO!!!!! but we get use to it.

But I always have in the back of my mind Crohn's hitting around the g-tube...is it worth it?
I don't know and right now it doesn't matter. It's about the here and now and I can tell you Grace's tube has pulled her thru many iffy situation.

HUGS


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## kimmidwife (Jan 12, 2015)

Sorry to hear she is having such a rough month. Caitlyn is losing weight again too. I am worried they are for going to want to do the PICC line and TPN or an NG tube for her with formula. These poor kids they go through so much. It is so hard.


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## Maya142 (Jan 12, 2015)

There's also a great guide for parents from http://www.feedingtubeawareness.com

Just in case you want A to see what NG tubes or G tubes look like. Honestly, when our GI first mentioned an NG tube to M, she hated the idea so much that it was a real incentive for her to drink more Peptamen! Whatever works, right?!


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## Brian'sMom (Jan 13, 2015)

Does your Doctor say why he thinks she isn't gaining weight? Was it ok in the beginning of her IVIG? The weight gain thing is so hard. When my son has inflammation he can't gain. And even the NG tube is hard because when he cramps hard he vomits.  The past 3 weeks he's been feeling good. He gained 3 lbs and 8 ounces. He drinks 2 Pediasure a day. (350 calories each). When he sees the weight gain.. He grabs the drinks by himself. At first he hated them... He said he's used to them now. Refrigerating them helps them to be not as thick. Not sure if this helps you. (He also did the NG tube for quite a long time. He says he does NOT want to do it again. So drinking them is a thing he'll do now without complaining)


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## DanceMom (Jan 15, 2015)

My worry is that there's inflammation in the small intestine again....maybe an autoimmune condition of some sort.  I've read that approximately 25% of people with CVID have an autoimmune disorder.  I'll talk with the Rheumo about this possibility tomorrow, but the GI will likely be our best bet on getting answers.  She was down another pound this morning.  So 53 lbs...was 57 lbs at GI visit end of October.  This is despite doing Benecalorie nightly.  She asked me this morning if she could quit since it didn't seem to be helping anyway.  I told her I'd let her make the decision but she would have to work with the GI to come up with a plan at her next appointment, and then stick to that plan.  She's angry that she had no input into this Benecalorie bit, she hates it, and she is still losing weight.  I feel for her.

And my poor little M has had croup for 2 days now.  She hasn't had croup in years (she used to get it twice a month for nearly 2 years.....it was awful....) so I'm hoping this is just a viral fluke.  Her immune system has been tested and is fine!!! lol


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## my little penguin (Jan 15, 2015)

Few things
Kids generally are complicated and messy and mostly angry about having to do things that are no fun or not their  choice . Medically complicated kids get the short end of the stick since they have to do many things tests meds etc ...without a lot of choice.
Some parents of medical kids give their teenagers a bigger say in the medical choices but that generally doesn't start till 13 or 14 .
Your kiddo maybe different 

When any of my kids decided they didn't want to take med xyz ( which in this case benacal is doc ordered ) I told them if they were old enough  to decide this then they were old enough to call the doc and explain that day why they were not willing to comply with doctors orders.
I get that nothing is working and your frustrated /she frustrated but if your stopping the med:treatment have you called the Gi to let them know ?
Also are you doing biweekly weigh ins at the peds office.
I know it's annoying but getting weight checks -same office same exam room when you kiddo is supplementing and not gaining weight is important to get the inssurance to more readily cover the more expensive formulas . Mommy weight checks don't count on the medical record but ped weight checks do.
Our Gi had us do weight checks every two weeks for months and had us call the office with the updates every two weeks to see which amount and kind of formula would work for Ds .
Because of this even though he does not have a tube his formula has been covered for 3.5 years even prior to crohns dx.

Hope they can get to the bottom of her issues soon and back to a healthy weight .


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## DanceMom (Jan 15, 2015)

A just turned 10 but she's very mature in many ways. She'll have no problem explaining her reasoning to the GI and he'll listen. They have a great relationship. He can lay out her options and she can choose. People in general are more compliant when they feel they are being heard and I want her to always be active in her care.

We only visit the Pedi when absolutely necessary. The germ exposure isn't worth the risk at this point. She is weighed every 4 weeks at infusion (same scale) and has GI, Pulmo, and Rheumo appointments routinely as well. If it comes down to needing more frequent weights for insurance purposes we'll do what we have to do, but at this point home checks and scheduled visits are sufficient. Our scale is very accurate.


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## DanceMom (Jan 16, 2015)

I'm pretty disappointed after today's Rheumo/Immuno appointment.  This may just be the push I needed to see the Immuno recommended by the GI.  My hesitation was because she is at a different hospital and we love our hospital so much.

First I brought up the bruises and showed him pictures.  He claims she will be an easy bruiser because she has "hypermobility syndrome".  She's flexible because she stretches every day for dance!  It doesn't come natural!!  I've told him this for the past year but he just nods and ignores me.  I don't think she has "hypermobility syndrome", but whatever.

Then I mentioned the redness/inflammation on her bottom.  He quickly changed the subject.  Like maybe that wasn't his area of expertise??  Okay.....I'll save it for the GI.

So then I brought up the diarrhea.  He told me that kids with "hypermobility syndrome" often have unexplained GI issues.  WTF?!?  I didn't even bother to mention the bloody stool.  Wouldn't have mattered.

So next I wanted to discuss her weight.  She was 56 lbs (6th %ile) at today's appointment.  She was also 56 lbs (10th %ile) in September.  He felt that her trend was fine and that it is normal to jump around a few pounds here and there.  He told her she didn't need to supplement with Benecalorie and that her weight was perfectly acceptable for her height.  That's all she needed to hear.  Just to top it off she barely ate dinner tonight.  When I encouraged her to eat she said, "Mom, my weight is fine!  Didn't you hear?  I don't have to force myself to eat when I'm not hungry."  So fabulous.

Annoyed is an understatement.


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## DustyKat (Jan 17, 2015)

No trouble seeing why you would feel that way DanceMom. It sucks!  

I’m so sorry that the appointment wasn’t more productive and supportive. :ghug: 

So you will move onto to the doc recommended by the GI? 

Dusty. xxx


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## DanceMom (Jan 17, 2015)

At our last GI appointment he talked with hubby and I about seeing an Immunologist at another children's hospital.  Apparently she is the best in this area and the GI felt that A would benefit from seeing her.  Hubby was hesitant because A was doing well and he was afraid adding another doctor in the mix might shake things up.  I was hesitant because she is at a different children's hospital (the only place around that would run her immune labs...but then screwed them up) and I'm deeply in love with our hospital.  I took the long wait list as a sign that we weren't meant to go see her.  Now I am rethinking that.  A is so complicated and I'm worried our current doctor isn't concerned enough about all the possibilities that do go with CVID.  Yes, she's far better today than she was when diagnosed, but the risks will always be there and I just want all bases covered.  I'll discuss it more with my husband this weekend.

So A asked me to check her bottom again last night because it was itching/burning.  Very red and inflamed again.  Should I see if the Pedi can see her on Monday?  Wait for our GI appointment on the 3rd?  This thing comes and goes.  Yeast infection?  

And then this morning she vomited.  Very random.  It happened all of a sudden and as soon as she was done went right back to dancing.  Swears she isn't sick and nothing hurts.  Do normal people just vomit and then go on about their business?  I feel like I'm on another planet sometimes, lol.


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## Maya142 (Jan 17, 2015)

It doesn't hurt to see another doctor, even if it's kind of pain and you love your children's hospital. You don't necessarily have to switch to him/her. Often a second set of eyes is what is needed. We have seen many second (and third and fourth) opinion rheumatologist's for my daughter's arthritis. It's tough finding pediatric rheumatologists but good ones are worht their weight in gold!

No idea about her bottom but I would take her to the pediatrician particularly since it may not be there when she sees her GI. At least you can rule out simple things like a yeast infection.

Hope things start looking up soon. A is such a tough little girl!


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## crohnsinct (Jan 17, 2015)

I agree on the second opinion.  

Vomitting for no apparent reason...no it isn't normal.  But it doesn't necessarily mean something horrible.  My niece does that and has been checked up and down.  She has cyclic vomiting syndrome..don't ask me I haven't obsessively googled it yet.  T has done that for about two years and sadly we now know she has Crohns.  Definitely mention it to GI.  

Darn!  I was googling a rash for T and came across something that might fit what is going on with your pumpkin but then you said all gone and better so I didn't send it...now I have to see if I can find it again.  It fit your description to a T! Do you have a derm in your arsenal of docs?  I would try to find one and have them look at her bottom.  From my experience, GI's and GP's aren't that well versed in skin rashes.


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## DanceMom (Jan 17, 2015)

We do have a Derm and usually see her NP. Love them both. I can try calling but they aren't always good about squeezing her in. Might be more valuable than seeing Pedi though.


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## my little penguin (Jan 17, 2015)

We play phone tag with both
I call them both telling ped/derm that I informed the other 
Whoever gets him in wins . That said we have had the ped exam and be on the phone with the other specialist describing in doc speak what was being seen 
This has worked well for times that ds couldn't be squeezed in 

Good luck


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## my little penguin (Jan 17, 2015)

Oh on the random vomiting then be fine Ds did that 
Started out once every three to four weeks then built up to higher frequency 
He was dx with cvs prior to crohns
Which basically means your stomach is getting abdominal migraines of sorts and vomits 
Then is fine afterwards 
There are drugs that can prevent it
For Ds it was simply getting his crohns under control since his duodendum is affected


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## DustyKat (Jan 18, 2015)

Agree with the above DanceMom. 

I would take her to the Derm but if you can’t get a quick appointment go to the Paed so your lass has a chance at getting some relief from it. In the meantime, if A will allow it I would take a photo and email to the Derm, assuming an appointment won’t happen soon, with a description of its onset, how long it lasts and its symptoms. 

Random vomiting…yeah we had considerations of CVS with Sarah as her vomiting was very cyclic, down to the days of the month at one point (the 7th and the 21st, weird). Abdominal migraine was a pre Crohn’s diagnosis here too. Keep tracking and journalling everything mum. :ghug: 

Dusty. xxx


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## kimmidwife (Jan 19, 2015)

I also agree with seeing the other immunologist. I can't believethe Rheumy said that to her that is crazy!!!!!


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## DanceMom (Jan 20, 2015)

We ended up not seeing a doc yesterday. The rash is mostly gone. It is so crazy how this thing comes and goes. We'll show the GI pictures and he can swab if he wants.

We are at her infusion now. She's lost a pound since Friday (go figure, no Benecalorie....).  The nurse used a neat vein finder with a red UV light. First vein blew. Then things got dramatic. Most veins had visible scar tissue. Did get her on the second stick, thank goodness. 

I did want to share a link for an organization that makes doll sized hospital gowns for sick kids. A just got hers this week and she loves it.  www.wishersanddreamers.com


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## DanceMom (Jan 21, 2015)

5 confirmed cases and 1 possible case of the flu in A's class.  Kept her home today and will tomorrow as well.  Can't believe how quickly it has spread!


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## kimmidwife (Jan 21, 2015)

Call her doctor and let him know they may want to put her on tamiflu proactively. They did that for my daughter with the swine flu.


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## DanceMom (Jan 21, 2015)

I let the Rheumo know and his suggestion was to use my discretion as to whether to send her to school or not.  He's never concerned about anything.  She woke up with a cough yesterday, just had a BM in her pants....so I'm on edge just a tad.


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## kimmidwife (Jan 21, 2015)

So sorry to hear. If she has a cough maybe she should get swabbed for flu to be on the safe side? Tamiflu needs to be started within 48 hours to be effective.


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## DanceMom (Jan 23, 2015)

Seems to be just an asthma flare for A.  Unfortunately the asthma can throw everything off.  We still aren't sure if it is just common asthma or CVID associated lung disease.  Does seem to hit her right before infusions though.

Sent her back to school today.  She reminded me I can't put her in a bubble and she was anxious to go back.  Six cases of the flu and 1 case of fifths disease so a bubble would be nice.  

Last night her eye swelled again but now we know it is just a side effect of the Privigen.  So much she puts up with.


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## DanceMom (Jan 25, 2015)

Absolute Lymphocytes still low, WBC now low. Lymphocytes have come up, but Rheumo assured me they'd be back to normal and they aren't. I'll email him but he'll say it is fine. Vitamin D is low now. What causes low Vitamin D in a non-IBD person?


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## DustyKat (Jan 25, 2015)

It can be location and time of year. 

Winter is normally not a good time to test unless you live in the tropics. 

Does A get outside much? 

Are Winters harsh where you live? 

Dusty. xxx


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## Farmwife (Jan 25, 2015)

Can I ask how low her wbc and lymphocytes are? 
Grace has these same issues. Matter of fact these are the only numbers that are usually off.


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## DanceMom (Jan 25, 2015)

We live in Florida and A is outdoors every day. It is usually in the 60s-70s this time of year so t-shirts and capris or leggings on most days.


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## DustyKat (Jan 25, 2015)

Does she wear sunscreen? 

Even T shirts and leggings can be enough to stifle Vit D absorption, just not enough skin exposure. 

Dusty. xxx


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## crohnsinct (Jan 25, 2015)

Yes.  I am always low. Low vit D is a chronic issue in the US.   Almost everyone is low.  Even in Florida (although less so in FL than say CT).  Doc told me you have to not wear sunscreen and go out in your bikini top, mid day sun for 15 minutes a day.  Since everyone's lives are busy and we are concerned about sun exposure we all typically do not get the dose of sunshine we need.


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## DanceMom (Jan 25, 2015)

I really don't think lack of sun exposure is the issue.  A is outside at least 2 hours per day without sunscreen.  She has an hour of PE (no gym), 20 minutes of recess (no shade on their playground), 30 minutes of safety patrol duty (her post is in direct sunlight), and she plays outside whenever possible  She also drinks plenty of Vitamin D fortified milk and OJ.

Farmwife - A has had low WBC in the past, but since starting IVIG in August they have returned to normal (until now).  Her lymphocytes have been low since December, but never prior.  I'm just praying this isn't a sign that treatment is failing.  Her IgG level also decreased for the first time since August.  Still normal, but I'd like to see it a little higher.

Absolute Lymphocytes 1351 (1500-6500)
WBC 4.4 (4.5-13.5)
IgG 977 (821-1835)
Vitamin D 25 (30-100)

What are Grace's #s for a comparison?  What do her doctors say?


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## my little penguin (Jan 25, 2015)

I have low vitamin d as do other non Ibd family members
Ds has had a level of 21 for years even with sun exposure etc in the summer 
Only when we added VIT d at 2000 IU for both of us did it go up to normal
Honestly low vit d is more the norm than not in the US .


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## DanceMom (Jan 25, 2015)

I get that it is "normal" for other people, but it isn't normal for HER.  The only other time she has been low was in May 2013 when she was very ill.  She's been tested 6 times since then (also in winter) and only now is it low again.  She isn't extremely sick right now, but things are "off" and I'm just trying to put the pieces together.


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## my little penguin (Jan 25, 2015)

As you posted her asthma is flaring now
Any inflammation in the body correlates with low VIT d
Asthma
Allergies
Ibd
Arthritis etc
So it would make sense it's lower now and when she is sick 
Since her body is fighting something off


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## DanceMom (Jan 25, 2015)

Specifically, what I'm trying to figure out is if there could be GI inflammation again.  She has diarrhea intermittently.  I know everyone gets diarrhea from time to time, and hers isn't severe, but it is urgent.  She has diarrhea maybe 7-8 times per week.  We've noticed 1 bloody stool, but it wasn't an alarming amount of blood.  She really doesn't complain of stomach pain, even with the diarrhea.  And weight gain continues to be an issue.  ESR and CRP never show for her, and FC doesn't always correlate with symptoms.  I'm wondering if a pill cam or scope would be beneficial or overkill at this point.


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## DustyKat (Jan 25, 2015)

*Hugs* DanceMom. 

It must be so difficult trying to separate the GI symptoms of CVID from IBD or establish if in fact your lass has both. :ghug:

I personally feel that until a clear cut answer for the GI symptoms can be established then ongoing testing is warranted when symptoms appear. Although overlap of symptoms do occur between the two diseases such as weight loss, diarrhoea, bloating, abdo pain, etc I don’t believe blood is seen with CVID. 

Thinking of you mum. :heart: 

Dusty. xxx


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## DustyKat (Jan 25, 2015)

I also meant to add that due to the immune deficiency I would also run faecal tests for bacteria and parasites. 

Dusty. xxx


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## Catherine (Jan 25, 2015)

I have a 15 year old girl with low vitamin d.  It's also not due to lack of sun exposure.

She doesn't have IBD.


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## kimmidwife (Jan 26, 2015)

Dance on.
Sorry she is going through this. Hope it is just a bump in the road. It does sound like it might be worthwhile getting some imaging done. Might be worth asking th GI doctor if he thinks it is a good idea.


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