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01-08-2017, 12:08 PM   #1
DanceMom
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A is 12 - Update!

I can't believe A is 12! She's funny, competitive, hard working, talented, artistic, and beautiful. I love that girl!

We had her Hematology appointment a few weeks ago and I've been very discouraged. He wants to "watch and wait" which is what we keep hearing. He tested for CMV and Mono and she's negative for both. Trying to be patient...she's dealing okay. Her lymph nodes are getting larger...so we wait.

She's only grown 5 cm and gained .3 kg in the last year. She's no longer on the growth chart for weight. I'm not happy about that, but again, no doctors seem alarmed. "Her labs are okay. She's just small."

Her diet is going well and she does seem to feel better. Hopefully her gut is healing and her IgG will become more stable. Another wait and see....

Competition season starts in 3 weeks and she's ready. She looks frail but says she feels strong. She will do well, no doubt.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
01-08-2017, 02:39 PM   #2
Jmrogers4
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Happy Birthday A


I hate that "just supposed to be small" phrase. They said that about Jack and once we got him on the right treatment well apparently he wasn't meant to be small unless you consider 6 foot tall small.

Good luck at competitions!
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-08-2017, 03:35 PM   #3
Farmwife
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Happy birthday A!
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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
01-08-2017, 03:50 PM   #4
pdx
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Happy birthday to your daughter!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-08-2017, 04:30 PM   #5
Maya142
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Happy Birthday A !!! I hope she has a wonderful year!
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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
01-08-2017, 04:36 PM   #6
Sascot
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Happy birthday to A! Hope the diet keeps helping.
01-11-2017, 08:32 AM   #7
polly13
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Happy Birthday A
01-13-2017, 05:45 PM   #8
kimmidwife
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Happy bday to A!!!!!
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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.
01-14-2017, 08:44 AM   #9
CarolinAlaska
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I hear what you are saying. I'm glad that she feels strong.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-18-2017, 06:22 PM   #10
DanceMom
Senior Member
A had another reaction at her infusion today, even with Tylenol, and IV Solu-Cortef and Benadryl. The doctor thinks it's because her body is working too hard to fight a virus and it becomes overwhelmed during the infusion process. Her recommendation was to increase dosage or bump infusions to every 3 weeks. We'll see what insurance approves.

A is mildly Neutropenic but her IgG came up some. Hoping for a peaceful month.
01-19-2017, 09:45 AM   #11
CarolinAlaska
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Hoping with you.
01-19-2017, 10:55 AM   #12
kimmidwife
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Sorry to hear. Hope the bumping it up helps.
02-13-2017, 03:41 PM   #13
DanceMom
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A had her labs/infusion today. I'm happy to say that I think her low fat diet is working! Her IgG is 1130, the highest it has ever been! A few other things were a little off, but nothing too concerning. So happy right now!
02-13-2017, 04:01 PM   #14
ronroush7
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Happy birthday
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-22-2017, 05:39 AM   #15
DanceMom
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A has a UTI. Is protein in the urine common with UTIs? Her report read protein as greater than 300.
02-23-2017, 12:07 PM   #16
kimmidwife
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Yes, UTI's can cause protein in the urine. Hope she feels better quick. I had a UTI last month for the first time in years a and couldn't believe how painful it was.
03-15-2017, 05:29 PM   #17
DanceMom
Senior Member
Today was a difficult day. A's first IV didn't get a good return, and somehow she pulled her second IV out in her sleep leaking blood, saline, and ridiculously expensive medicine everywhere for 30+ minutes. The way she was sitting in the recliner her arm wasn't visible so we didn't notice until she woke for vitals. Also frustrating that her IgG went from 1130-944 despite sticking to her diet. Now I'm afraid the diet may not be working like I'd hoped. Regardless, we're going to try slowly spacing out her infusions and seeing what her body will do. All other labs looked pretty good. Liver numbers continue to be elevated so this must be her new normal. Just discouraged.
03-15-2017, 06:16 PM   #18
kimmidwife
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I am so sorry. We had a rough day here too.
04-05-2017, 06:23 PM   #19
DanceMom
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A has complained of nausea and stomach pain for almost a week. She vomited two consecutive days, but only twice the first day and once the next. Stools are normal. Her stomach pain has increased and is now left sided.

Yesterday I called the Immunology office, but I'm always directed to whichever Fellow is on-call. She knows A, but didn't seem to give two flips about my concerns and diagnosed a virus over the phone. Not satisfied, I took her to Urgent Care and she has another UTI. Labs looked great and the infection was considered minor. 3 doses of antibiotic and she doesn't feel any better. Any suggestions or ideas?
04-05-2017, 06:34 PM   #20
my little penguin
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Did you call the immunologist back to update them with the dx of UTI
Given she has immunodeficiency
And is not immunosuppressed like Crohns kids (over active immune system) the advice would differ
They would probably have a better idea on the type of abx strength and when to expect symptoms to get better especially vs urgent care with normal kids strength
Abx


Can your ped help you communicate with the immunologist ???

When you say not better
Do you mean she has UTI symptoms or more vomiting /feeling awful tired symptoms ...
Since abx may fix the UTI but may not fix the other stuff
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04-05-2017, 06:38 PM   #21
Maya142
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I would ask to speak to the immunologist directly. You may not be able to do that after hours, but she should be able to call you back tomorrow.

Poor A .
04-05-2017, 07:29 PM   #22
DanceMom
Senior Member
Unfortunately the Immunologist does not take or return phone calls. It's ridiculous, I know. She's a fabulous doctor but the office protocol sucks. I called to inform them of the last UTI and was told to have the Pedi handle basic infections. I chose Urgent Care because in my experience they've been more thorough and efficient than the Pedi. My frustration with doctors is at an all time high.

A never really had typical UTI symptoms. I only asked the doctor to order the test to rule it out since she's had UTIs in the past. She has left sided stomach pain and nausea (which is getting worse) and I'm worried we're missing something. I suppose it could be disease progression but her labs were fine. Frustrating.
04-05-2017, 09:20 PM   #23
Maya142
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I would ask your pediatrician to call the immunologist. Sometimes that works better...

It seems like a crazy policy to not take or return phone calls - I'll admit, I've never heard of a doctor who does that. Can you reach her by email? She is the one treating A's main problem, so I would guess she should weigh in on anything that involves her immune system

No wonder you are frustrated!!
04-05-2017, 09:36 PM   #24
DanceMom
Senior Member
I would ask your pediatrician to call the immunologist. Sometimes that works better...

It seems like a crazy policy to not take or return phone calls - I'll admit, I've never heard of a doctor who does that. Can you reach her by email? She is the one treating A's main problem, so I would guess she should weigh in on anything that involves her immune system

No wonder you are frustrated!!
The problem is that no one is really treating A's main problem - the lymphangiectasia. The Immunologist provides a bandaid with IVIG, but the medication she recommended for the lymphangiectasia was rejected by both GIs we've seen. We're only treating it with diet at this time and I thought her symptoms had improved, but now I'm questioning that. Hard to get a doctor to care when CBC and CMP look good though. And our Pedi has never been interested in coordinating her care. I've struggled with that on my own for the past 8 years.
04-09-2017, 07:20 AM   #25
Catherine
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Are they sure the UTI has not caused a kidney infection? Low grade UTI can have no symptoms at least for my daughter.

We did a twelve month course antibiotics due to UTIs
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Catherine
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)
04-09-2017, 06:25 PM   #26
DanceMom
Senior Member
A is feeling much better now. We may never know exactly what caused her symptoms, but hopefully they don't return. I reached out to the local GI (haven't seen him for a year) and he said he'd be happy to monitor/treat her. I feel relieved.
04-09-2017, 07:03 PM   #27
ronroush7
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Great news

04-13-2017, 07:44 PM   #28
kimmidwife
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That really stinks about the immunologist. That really upsets me. WTH is wrong with these doctors. I am glad the GI is stepping in.
05-02-2017, 07:00 PM   #29
DanceMom
Senior Member
We saw our GI this afternoon, the one we haven't seen in a year. I'm so glad we went! He brought in an Interventional Radiologist that has treated quite a few patients with Intestinal Lymphangiectasia. Both doctors think that A's Intestinal Lymphangiectasia is secondary to immune dysregulation. The IR doctor took one look at her swelling and lumps and said it was inflammation and part of an auto-immune process. She's severely underweight (I'm glad someone finally cares!) so we're starting Periactin to stimulate her appetite and increasing fat/protein since they don't think the gut is really the problem. We will continue to avoid fried foods and other foods high in fat because I have seen some benefit to the diet. We're also going to do a steroid burst and consider Tacrolimus in the future. I just wanted to update because I'm very relieved and hopeful that maybe we're closer to getting her better. If anyone has thoughts to share about Tacrolimus I'd love to hear.
05-02-2017, 07:10 PM   #30
Maya142
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We have no experience with Tacromilus, but just wanted to say I'm so glad you have a doctor that is helping!!

Hope the steroids work like magic - maybe they will help her appetite too !
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