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Crohn's Disease Forum » Parents of Kids with IBD » Second Opinion Immunology Appointment


 
04-02-2015, 06:06 PM   #1
DanceMom
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Second Opinion Immunology Appointment

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

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

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

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

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

I'm glad that our current plan is sufficient, but it is definitely important to get more details so we know what to expect for the future. This doctor did rave about our GI (we already knew he was fabulous! lol) also stating that she doesn't care for most doctors (I tend to agree!). Can't wait to hear back from her!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
04-02-2015, 06:34 PM   #2
Farmwife
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I'm so glad it was a good meeting.
Did she seems concerned with A's height and weight?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-02-2015, 08:31 PM   #3
Maya142
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Glad it went well!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-02-2015, 10:25 PM   #4
DanceMom
Senior Member
We didn't really discuss height/weight much. She did mention that many kids with immunodeficiency are on the smaller side. A has lost a little weight recently, but she's feeling good and has plenty of energy so I'm not too concerned. I'm starting to get used to the fluctuations.
04-03-2015, 12:51 PM   #5
kimmidwife
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Dancemom,
That is wonderful news! This doctor sounds like a keeper! I will be curious to hear what she says after she reviews the records more thoroughly.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
04-05-2015, 05:07 AM   #6
DustyKat
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So happy that the appointment went well and you walked away satisfied DanceMom, and there is nothing better than having opinions validated...that is priceless!

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

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

Dusty. xxx
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04-11-2015, 06:06 AM   #7
DanceMom
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So I never received a call from the new doctor. I'll give her a few more days before bugging her.

A had been feeling great....but big dance competition just a few days before her infusion and things are starting to fall apart. She's backstage for her trio and I get a phone call from one of her teammates that her eye is starting to swell. I run and give her benadryl but the poor girl does the dance with her eye nearly swollen shut. They manage to place second (my girl is a trooper!). Then her feet break out in painful hives....but she manages to dance beautifully in her group dance and they place 3rd. Before the end of the night she informs me that her rash is back....looks like strep again. Two more dances to go this weekend!!
04-11-2015, 06:52 AM   #8
CarolinAlaska
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That is awful! Could stress be triggering this, like anxiety before a performance causing hives?
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-11-2015, 07:46 AM   #9
Sascot
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Poor thing. Well done to her being able to keep going!
04-11-2015, 08:20 AM   #10
Farmwife
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Sweating can trigger my hives.
I'm glad she pulled thru but sorry she has to go through this.

HUGS
04-11-2015, 10:30 AM   #11
DanceMom
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These are the autoimmune issues we're concerned about - hives, swelling, etc. She's been dancing competitively for 6 years so she doesn't get major stress from these competitions. We've noticed these symptoms seem to come right before infusions and when she has a virus or infection. I think her immune system knows it's supposed to be doing something but turns on itself instead. Frustrating.
04-11-2015, 10:41 AM   #12
Farmwife
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Ya, that makes sense.
I know your still in the process of figuring out things but do you know what she'll have to live with or what will go in remission?
Sorry just don't know a lot about this stuff.
Your the one teaching all of us.
04-11-2015, 12:37 PM   #13
DanceMom
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I'm really not sure if there is a "remission". Her IgG has been declining so it's possible that this month her trough levels are inadequate. We'll know in about a week. I'm not sure what the answer is for the autoimmune stuff. I do know that doping her up on benadryl isn't ideal. And if this turns out to be strep again we may be looking at long-term antibiotics as well. Trying to be patient while I'm waiting to hear back from the doctor.
04-11-2015, 08:20 PM   #14
lisadc1
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So glad you like the new dr.! Interesting about the cord time to fall off. When my youngest, Kaitlyn, was born, her cord also took a long time to fall off - 4 weeks. She had lots of allergy/asthma issues and her specialist diagnosed her at 9 months with asthma. He, too, told us that it was an indicator of health issues, for her, the lungs and allergies. And now, she also has early crohns symptoms/markers/results...

Hope you hear back from the dr soon! Let us know how she is doing, please.
04-11-2015, 08:46 PM   #15
kimmidwife
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Sorry to hear she is going through this. Wish we had some answes for you. Keep us,posted what the new doc says.
04-13-2015, 10:37 AM   #16
DanceMom
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A isn't feeling too well today- stomach cramps, looks like skin infection may be progressing, sleeping a lot. At her infusion now so hopefully this gives her the boost she needs.
04-13-2015, 11:32 AM   #17
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Sending a prayer that the infusion helps!!!!
04-13-2015, 11:36 AM   #18
araceli
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I hope she wakes up full of energy and feeling great. Sending prayers.
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04-13-2015, 04:09 PM   #19
Farmwife
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Prayers here also.
04-14-2015, 07:59 AM   #20
CarolinAlaska
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Sorry to hear it. I hope the infusion starts turning things around!
04-14-2015, 04:03 PM   #21
Sascot
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Hope she feels better after the infusion
04-16-2015, 02:17 PM   #22
DanceMom
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IVIG is like a light switch for my girl! The very next day she was full of energy and her skin infection was already improving. She had some stomach cramps before the infusion and some nausea afterwards, so I'm not sure what to make of that. Hoping that the nausea was just a side effect because I'm almost positive she didn't drink enough water....stubborn little thing. We should get lab results in the next 48 hours so we'll see what they look like.

Still no word from the new Immunologist. Left a message this afternoon so anxiously waiting for a call back.
04-17-2015, 06:51 PM   #23
DanceMom
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A is being treated for a probable UTI. She's in a lot of pain so we're starting antibiotics and will get culture results on Monday. If it's positive she'll need an ultrasound of her bladder and kidneys to look for structural abnormalities. Always something right?
04-17-2015, 08:00 PM   #24
Farmwife
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Yup, always something. Grace went thru this 6 or so months ago.

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

I hope she feels better soon.
04-18-2015, 12:00 AM   #25
Catherine
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Yup, always something. Grace went thru this 6 or so months ago.

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

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

This test is traumatic for any child past toilet training. I can only imagine how hard it would have been without any preparation.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-18-2015, 07:02 AM   #26
Farmwife
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We had that test done with the middle child. They were looking for urinary reflux which they found. Urinary reflux is the most common cause UTI in children.

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

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

Last edited by Farmwife; 04-18-2015 at 07:33 AM.
04-18-2015, 04:01 PM   #27
DanceMom
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Got A's lab results and all looks well except an elevated AST. This happened a few months ago then it went back within normal range. She just has a picky liver. Even her IgG went up so I'm very pleased with that.

She's feeling improvement after just one Cefdinir (antibiotic) pill. Thank goodness for that!
04-18-2015, 07:14 PM   #28
CarolinAlaska
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Got A's lab results and all looks well except an elevated AST. This happened a few months ago then it went back within normal range. She just has a picky liver. Even her IgG went up so I'm very pleased with that.

She's feeling improvement after just one Cefdinir (antibiotic) pill. Thank goodness for that!
Cefdinir can cause stool to turn orange - just in case it happens and you aren't aware.
04-19-2015, 02:48 PM   #29
DanceMom
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So I admit, I have googling problems. But when A told me today that she leaks urine and has been making homemade "pads" out of toilet paper I became very concerned. In my reading I came across "vaginal fistulas". Anyone have any experience with this? I could be way off, and hopefully I am, but as much as I believe recurring UTIs are typical of a PID I've had 3 doctors tell me they aren't.

Last edited by DanceMom; 04-19-2015 at 03:34 PM.
04-19-2015, 03:59 PM   #30
Farmwife
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Yes, docs considered that for Grace but she cleared that hurdle.
But Grace was dx with Bladder and Bowel Dysfunction.
The Urologist believes that Grace's nerves are effected by her disease because of pressure and pain in her pelvic area over the years. She also has IC (bladder inflammation) which is not normally see in children this young but does happen.
I bought panty liners (small) and put them in. Can you ask A that when she sneezes does leak a good amount of urine (as in she needs to change quickly).

Has she seen a Urologist????
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