• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Should I be concerned?

D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
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
 
D

DanceMom

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!
 
DustyKat

DustyKat

Super Moderator
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
 
Sascot

Sascot

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.
 
D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
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
 
D

DanceMom

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!
 
C

crohnsinct

Well-known member
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!
 
D

DanceMom

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.
 
D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
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
 
D

DanceMom

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?
 
D

DanceMom

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.
 
Farmwife

Farmwife

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.
 
Johnnysmom

Johnnysmom

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.
 
D

DanceMom

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.
 
D

DanceMom

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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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.
 
D

DanceMom

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.....
 
Sascot

Sascot

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
 
D

DanceMom

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!
 
D

DanceMom

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.
 
D

DanceMom

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?
 
Maya142

Maya142

Moderator
Staff member
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.
 
D

DanceMom

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.
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
D

DanceMom

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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
D

DanceMom

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.
 
Farmwife

Farmwife

I'm a tubey fan! :DYes , 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
 
kimmidwife

kimmidwife

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.
 
Maya142

Maya142

Moderator
Staff member
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?!
 
Brian'sMom

Brian'sMom

Location
Midwest
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)
 
D

DanceMom

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
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
D

DanceMom

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.
 
D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
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
 
D

DanceMom

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.
 
Maya142

Maya142

Moderator
Staff member
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!
 
C

crohnsinct

Well-known member
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.
 
D

DanceMom

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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
my little penguin

my little penguin

Moderator
Staff member
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
 
DustyKat

DustyKat

Super Moderator
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
 
D

DanceMom

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
 
D

DanceMom

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!
 
kimmidwife

kimmidwife

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.
 
D

DanceMom

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.
 
kimmidwife

kimmidwife

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.
 
D

DanceMom

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.
 
D

DanceMom

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?
 
DustyKat

DustyKat

Super Moderator
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
 
Farmwife

Farmwife

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.
 
D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
Does she wear sunscreen?

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

Dusty. xxx
 
C

crohnsinct

Well-known member
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.
 
D

DanceMom

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?
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
D

DanceMom

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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
D

DanceMom

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.
 
DustyKat

DustyKat

Super Moderator
*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
 
DustyKat

DustyKat

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

Dusty. xxx
 
kimmidwife

kimmidwife

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.
 
You must log in or register to reply here.
Top