Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (sort of....)


 
07-10-2014, 07:40 PM   #1
DanceMom
Senior Member
We have a diagnosis! (sort of....)

A had her Rheumo appointment today. The Rheumo was unable to locate the results of the specialty immune labs we had done but said he would follow up with that at a later time. He did look at the Pneumovax lab we recently had done. We reviewed the lab in the office but unfortunately he didn't post it to her online account yet so I don't have it to reference. Anyway, she is no longer considered "protected" to an additional 3 serotypes (when compared with March's Pneumovax lab) and another 2 are borderline. So A is definitely immune deficient.

At this point we aren't sure if her symptoms are a direct result of her immune deficiency or possibly an autoimmune disorder as well. I'm hoping we can stick to one diagnosis but I think IBD will always be in the back of my mind.

The plan is to start IVIG as soon as we get insurance approval. If she does well and maintains adequate IgG levels we can hopefully switch to SCIG (subQ home infusions) within a few months. She is not overjoyed about getting an IV and let me know up front she accepts bribes, lol.

On the GI side of things....she lost 5 lbs since her April appointment, putting her in the 1st %ile. I'm not sure exactly how that happened. She did grow almost an inch so that makes the weight loss even more confusing. Maybe the nurse was a little tipsy? The bloody stools are making a comeback - 3 so far today. She sees the GI at the end of the month so we'll get his input then. I'm going to ask if he thinks Flagyl might be a good idea because she usually responds pretty well to that.

The Rheumo had 2 other patients to see after us (and it was already 5:30) so he said he'd finish up her clinic notes later and I could access them online. I did ask if her immune deficiency had a name and he said "CVID". I won't believe it until I see it in writing (he hasn't completed the notes yet) so we only sort of have a diagnosis. Now we just have to wait and pray that insurance will cover the IVIG. On the way home A did say, "Mommy, this may be my cure!" I sure hope it is!!!
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
07-10-2014, 07:56 PM   #2
Maya142
Forum Monitor
 
Maya142's Avatar
Great that she has a diagnosis ! Or even sort of a diagnosis - at least you're getting somewhere! I hope IVIG is her cure!
__________________
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
07-10-2014, 08:05 PM   #3
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Glad you have a plan.

Paging Malgrave, just to make sure she see this thread.
__________________
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)
07-10-2014, 08:23 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hope the dx fits and comes with a big improvement for her and you .
Good luck with the treatment .
__________________
DS - -Crohn's -Stelara
07-10-2014, 09:38 PM   #5
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I'm happy she has a direction for treatment . I hope she gets her answer to hoping this will fix everything.


I do hope you stick around because as you know things change quick.
__________________
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
07-10-2014, 10:07 PM   #6
DanceMom
Senior Member
Farmwife - I plan on hanging around! A shares a lot of similarities with the kids here so I still feel like we "fit in". So as long as no one kicks me out you're stuck with me! lol I'll also be on the lookout for other undiagnosed kiddos who present like A in case I can offer some advice/suggestions. Never in a million years would I have guessed A had an immune deficiency!
07-10-2014, 10:23 PM   #7
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
I know a little girl who did very well on IVIG (juvenile dermatomyositis) and is happy and healthy now. I hope this is your answer too!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
07-10-2014, 11:12 PM   #8
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
Thanks Catherine for tagging me and Dance Mom, excellent that you have diagnosis! This thread may interest you:

http://www.crohnsforum.com/showthread.php?t=43355

CVID is also possible diaganosis for my son, maybe even some sort of Nemo defiency (suspectible for mycobacteria, al lot of granulomas, also in stomach) , so many PIDs suspected, but no clear diagnosis yet, new tests all the time. He is on IVIG (and now also on anti-MAP treatment) still with rectal bleeding but otherwise now very healthy (no flus, running nose, nothing), skin problems disappeared completely!

I really wish that IVIG is your medicine. Good luck!
__________________
*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
07-11-2014, 10:48 PM   #9
DanceMom
Senior Member
Got the order for IVIG today (though it will still be weeks before we hear from the insurance company). The order reads: Immune Globulin (human) 10% injection; administer 120 ml intravenously every 4 weeks; dx of hypogammaglobulinemia, cvid.

Malgrave - Does that dosage sound about right? Does the insurance company decide which brand should be used?
07-12-2014, 10:31 AM   #10
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Glad you have some answers. Hope the insurance doesn't take too long!
07-12-2014, 05:25 PM   #11
knnamy
 
knnamy's Avatar
 
Join Date: Apr 2013
Usually the dr recommends a brand, not the insurance company. Do you know how many Grams of IVIG she will be getting. The 120ml sounds like the volume after it is premixed. I am glad you have answers and I hope this her road to recovery. Where will she be getting infused at? Home, hospital, Dr's office?
07-12-2014, 07:07 PM   #12
DanceMom
Senior Member
The order I'm able to view online does not specify a brand but perhaps one was submitted to insurance. Clinic notes were posted this afternoon stating that she is to receive 12 grams of IVIG every 4 weeks. Does that sound about right? It also states that after 4 hospital infusions she can switch to weekly SCIG at home. We've seen our hospital's infusion center; it is where we've met the GI nurse to do the pill cam. It is actually on the same floor as the Rheumo's office, right down the hall.

knnamy & Malgrave - Do either of you have experience with SCIG? I like the idea of being able to infuse at home and not fuss with IVs, but I'm not excited that it would need to be done weekly instead of monthly. Both situations seem intimidating to be honest.
07-12-2014, 08:18 PM   #13
knnamy
 
knnamy's Avatar
 
Join Date: Apr 2013
12 grams sounds good. I can't remember offhand how much she weighs? Once you have been on IVIG for awhile they dose more on infections than weight. Nick has been at 15 grams for several years and his numbers look great but infections are creeping in.. so I might request a dosage increase next week when he sees the immuno.

Nick has done SCIG in past but he prefers to get it weekly. He feels that it reminds him less that he is sick and sometimes in skinny kids it can hurt if there is not a lot of fat.
07-12-2014, 08:41 PM   #14
DanceMom
Senior Member
She weighed 47 lbs at her last appointment but she's been fluctuating between 52-53 lbs typically. She doesn't really get sinus or respiratory infections very often but we are hoping the therapy will improve her other symptoms (GI issues, joint pains, skin lesions, fatigue, etc.). I feel like we've been very fortunate thus far that she hasn't had a long list of infections, but it does concern me that at this point she is under-protected to say the least.

I feel very uneducated about CVID so I did order some materials from IDF. When the GI diagnosed her with IBD we were sent home with a lovely folder of materials and resources. This time I got nothing, and I was so shocked to actually have test results that clearly indicated an immune deficiency that I couldn't even formulate good questions to ask!
07-12-2014, 09:48 PM   #15
knnamy
 
knnamy's Avatar
 
Join Date: Apr 2013
The IDF is amazing. Also Baxter has amazing resources. http://www.immunedisease.com/help-an...-play-kit.html

Get her a bear that will help a lot. Plus they have a lot more! We have gone to several PIDD conferences held by the IDF and they are wonderful!
07-13-2014, 08:43 AM   #16
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
My son's dose is 0.4 grams per kg per month, in total he gets 10 grams per month, his weight is 22kg but they give him 10 grams because they don't want throw away the expensive medicine.
07-14-2014, 11:08 AM   #17
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I am glad you finally have a diagnosis.
Here is a good article about CVID:
http://primaryimmune.org/about-prima...ne-deficiency/
Hope it helps.
__________________

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.
07-15-2014, 10:12 PM   #18
DanceMom
Senior Member
It has been a very frustrating few days. A wants to do fun things like swim and go to the movies but when I wake her up she cries that she doesn't feel well. At night she cries again, sometimes to the point of being hysterical. She says her stomach and her head hurt and she will tremble and cry for hours. No fever, no vomiting, no diarrhea. Just bloody stools and nausea.

It is unlike her to cry like this and I can't imagine what is going on. I've questioned whether she was afraid or upset about something but she insists she is just crying because she feels sick. (Then of course I feel guilty for questioning what she is telling me). I've wondered if the Elavil is suddenly having some funky effect on her emotions. Is there something that we're missing? Frustrating situation.
07-15-2014, 10:17 PM   #19
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I am sorry to hear this. Definitly is possible that the Elavil is doing something funky with her emotions. Did you call her doctor?
07-15-2014, 10:22 PM   #20
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
It does list emotional symptoms as possible side effect on several sites. I thought so but double checked.
http://www.drugs.com/sfx/amitriptyli...e-effects.html
07-15-2014, 10:28 PM   #21
DanceMom
Senior Member
We saw the Rheumo last week. The bloody stools began the morning of her appointment and I did make him aware. She started feeling bad (nausea, stomach ache, headache) the following day. Maybe I should email the GI tomorrow to see if her appointment can be moved up. I didn't email right away because I really expected this to taper off.
07-15-2014, 11:11 PM   #22
Maya142
Forum Monitor
 
Maya142's Avatar
M does get stressed out and upset when she's feeling especially unwell. I would contact your doctor though because antidepressants can definitely mess with emotions, even at pretty low doses.

My older daughter was once put on Cymbalta (an antidepressant that was prescribed for pain) and got really moody and depressed. Her doctor suspected it was Cymbalta and took her off it and her moods went back to normal! It was like night and day, I was shocked.
07-16-2014, 10:26 AM   #23
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Poor girl. She is going through so much. Hope you can get the GI appt moved up
07-16-2014, 02:49 PM   #24
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
Since my son started on Elavil he has some episodes where he cries for little things or gets mad for no reason. He is a teenager so it may be due to hormones. He used to sleep right away after pill but now he is having trouble sleeping. I hope your daughter feels better soon.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
07-16-2014, 04:50 PM   #25
DanceMom
Senior Member
So I emailed the GI this morning listing my concerns. He spoke with the Rheumo and wanted him to call me but my phone was on silent (we'd been at the movies) and I missed his call. Fortunately the GI nurse called this afternoon and let me know that the 2 doctors had been communicating about A all day. The GI wants to see her tomorrow and told us to pack a bag, just in case. Either something serious is going on or this Elavil is really messing with her and we need to get her off of it.
07-16-2014, 06:44 PM   #26
nikimazur
Senior Member
 
nikimazur's Avatar
 
Join Date: Dec 2011
Location: New Jersey

My Support Groups:
I have selective IgA deficiency in addition to Crohn's and Autoimmune Hepatitis. Very interesting to see others with GI issues and Ig deficiencies
__________________
Original Dx: April 2011


Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)


Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira




http://lifeinthetimeofuncertainty.blogspot.com
07-17-2014, 02:20 PM   #27
DanceMom
Senior Member
Saw the GI and fortunately we did not get admitted. We had an abdominal x-ray, labs, and got a prescription for Flagyl. Also have to try some supplemental drinks because her weight is still an issue. The x-ray tech mentioned that her spine had an abnormal curve. Maybe this is causing her back pain? Her x-ray in February did not show this as far as I know. Oh, also weaning off the Elavil. Hoping she feels better soon!
07-17-2014, 02:46 PM   #28
Maya142
Forum Monitor
 
Maya142's Avatar
Does he mean she has scoliosis? M has mild scoliosis but doctors think it does not contribute to her back pain. She's never required any treatment for it, mostly because she's done growing.
Glad you guys didn't get admitted! Hope A feels better SOON!
07-17-2014, 08:57 PM   #29
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hope the weaning goes well and it makes her feel better.
Did the GI says anything about Ibd being a possible factor or has he ruled that out?
07-17-2014, 11:08 PM   #30
DanceMom
Senior Member
Maya142 - He did not specifically say scoliosis but I was surprised he mentioned anything about her back at all. It was an abdominal x-ray to check for constipation. Is it possible that she was just standing awkward for the x-ray? Maybe shifting her weight and it caused her spine to appear curved?

Farmwife - IBD is not being considered at this point due to the low fecal calp. We're doing stool tests but assuming it is a virus. Flagyl has helped in the past so we're trying a 30 day course to hold her over until she can get the IVIG. If she gets worse they'll admit her and do the IVIG inpatient. We also discussed the possibility of a feeding tube if she doesn't gain weight with the drink supplements. He's asked us to try Resource Breeze and high calorie shakes as well.

Also, had a different phlebotomist today who struggled to get the vein. After digging around a bit she got it but after 2 vials it just stopped bleeding. She dug around some more and it took about 10 minutes to fill the remaining few vials. She said the needle was sticking to her veins? Are these people feeding me lines about scar tissue and needles sticking to veins?
Reply

Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (sort of....)
Thread Tools


All times are GMT -5. The time now is 12:09 PM.
Copyright 2006-2017 Crohnsforum.com