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Crohn's Disease Forum » Parents of Kids with IBD » C winter update-frustrated


 
12-23-2013, 06:05 PM   #31
Jmrogers4
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Hope the flu passes quickly with no problems. Don't know anything about Tamiflu - sorry.
Hope they get a treatment in place that you can tolerate soon. Maybe getting your Vitamin D and B12 up will make a difference.
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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
12-23-2013, 06:27 PM   #32
Clash
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I feel so horrible for putting the flu shot off, we actually went to Walgreens one day to get it but since C wasn't 18 he couldn't get it there. Ughhh.

His fever got to 103 Saturday night but has been from 99-100 on fever meds. Then today the fever went away for most of the day, so at the doc appt he had no fever. Now tonight it is back up to 102.7.

The GP didn't seem real concerned about him having the flu on Remicade/MTX but I am. I just wonder at what point before I grab him and run to the ER.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-23-2013, 07:54 PM   #33
Brian'sMom
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DS tested positive last year with the flu. We did Tamiflu while on Humira. It cleared up the Flu quickly. I was impressed. (We did catch it really early)
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
12-23-2013, 08:00 PM   #34
Clash
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Thanks for your experience, Brian'sMom, the GP said we caught it early and that was a good thing.

His started with just the low grade fever, then headache now he is complaining about joint pain. I am flooding him with fluids and he took his first Tamiflu as soon as we got back from GP.

Scary thing was we called all around and all of the pharmacies were out of Tamiflu! Finally, Hubby found one Pharmacy that had one pack left, we zoomed straight over there!
12-23-2013, 11:41 PM   #35
Tesscorm
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Hope the tamiflu helps him get over the flu really quickly!!

And, I hope, you too find some relief soon!!! Perhaps as Jacqui mentioned, getting your vitamin/minerals levels up may help!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-24-2013, 09:29 AM   #36
my little penguin
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just a secret for next year- the in store clinics - take care( walgreens), minute clinic (CVS) etc... will give flu shots and are covered by your insurance- so in theory they can't get the flu shot at the pharmacy but can get it in the "Store clinic" by the NP for those under 18 .

plus flu shots take two weeks to work -so don't beat yourself up.

tamiflu really help ds before.

hope the fluids help
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12-24-2013, 11:01 AM   #37
crohnsinct
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When they feared O might have the flu Tamiflu was suggested with just a little warning that it could cause diarrhea.

Poor pumpkin. I hope he perks up a bit for Christmas.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-24-2013, 11:11 AM   #38
kimmidwife
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Sorry he caught the flu. Don't beat yourself up though. The statistics show the shot only is 50% effective so he could have caught it even if he had the shot. Tamiflu works great though. Hopefully he will get better fast!
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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.
12-24-2013, 03:45 PM   #39
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Hope he feels better soon!
12-24-2013, 08:18 PM   #40
CarolinAlaska
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Sorry to hear that he got the flu I hope he's feeling well soon.
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J's story: http://apathnotchosen.blogspot.com
*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.
12-24-2013, 08:27 PM   #41
xmdmom
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Hope he is already feeling better and that no one else in the family catches it!
01-03-2014, 11:52 PM   #42
Clash
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So the tamiflu kicked butt and although he felt pretty bad for a day or two it was all over pretty quickly for C. The only downside was the weight loss, uggh, we have added in smoothies with boost in an effort to put some weight back on. He is feeling great and hasn't slowed down over break.

I was admitted to the hospital earlier this week, got out on New Years Eve. It all started with a flush over my body, then feet and hands went numb and tingly and legs started cramping. Cardiologist thought it was low potassium but admitted me since I've been back and forth to ER here lately.

My heartrate stays fairly high. Doc still thinks POTs and has me on Cardizem since hospital stay. I'm also supposed to take in huge amounts of fluid and a high salt diet. Problem is the high salt is cause the gastritis to flare.

So once in hospital and on constant fluids and starting cardizem I felt awesome. I thought it was the cardizem. My heart rate was mid 60s to low 70s lying down and low to mid 80s standing in hospital.. Once I got home the rate started going up again, 90s lying down and 120 or so standing up. I now think it was the constant fluid helping more than the new med. Oh I'm also dealing with constipation and bloating.

We have decided to see the docs at mayo and have an appt the first of February. We actually wanted to go to Vanderbilt because the have an autonomic dysfunction center that is supposed to be awesome but its like a 9 month wait.

Last edited by Clash; 01-04-2014 at 12:32 AM.
01-04-2014, 12:11 AM   #43
DustyKat
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So fab to hear about C! Yay! I hope he soon gains the weight back.

But you Clash I am so sorry to hear that things are still topsy turvy for you and I can so see the catch 22 of a high salt, high fluid diet. I wonder if enteric coated salt tablets would be better for gastritis rather than ingesting the salt through diet?? It wonít eliminate the issue of fluid retention though. Such a delicate balance.

I hope the docs at Mayo have a better solution and even better if you were able to get an earlier foot in at Vanderbilt. No chance of someone doing you a favour?

Dusty. xxx
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01-04-2014, 12:21 AM   #44
Clash
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I was really interested in going to Vandy but the cardio I'm seeing is not very forthcoming. I point blank asked did he think it was POTs and he said that is what I'm thinking. In the hospital they ran numerous blood test. The only thing that showed was potassium was a tad low and as well as lipase being off a little he said. I asked about the vitamin D level being 14 and isn't that concerning, he said its low but not a factor in your symptoms.

So I'm hoping that mayo can get to bottom of everything and if it is dysautonomia then maybe try to get into Vandy.
01-04-2014, 12:36 AM   #45
DustyKat
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I hope they can too Clash. Good luck!

Some time ago when researching through low Vitamin D I came across references to POTS and dysautonomiaís. It seems that those suffering these conditions frequently had low Vit D and whilst they could not find a direct link between low Vit D and syndrome/disease symptoms correcting the deficiency often resulted in a greater feeling of well being for the patient.

Dusty. xxx
01-04-2014, 08:25 AM   #46
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I hope Mayo can give answers. Are you going to the in FL?
Are you able to still get around and do things?


HUGS
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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
01-04-2014, 09:12 AM   #47
imaboveitall
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Violet has POTS (HR typically goes from 80's sitting to 120+ upon standing), her hands are often mottled and she gets "visual snow", (white dots in her field of vision), other weird stuff attributed to vascular issues related to dysauto. Also diastolic hypotension, her diastolic BP often in the thirties.

She was trialed on Florinef and atenolol, common use drugs for POTS. They didn't help her but they do help many, check into those. Hyperhydration and sodium loads, for sure are advised, she carries small packets of soy sauce with her for emergency sodium.

Vit D levels always low end of normal until last time in Nov when they were mid-range normal.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
01-04-2014, 09:35 AM   #48
Clash
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Dusty- I've read similar about vitamin D levels and disautonomias, I was just hoping the.doc would give me that connection too, I'm working on my Vit D levels now.

Farmwife- yes in Fla. I'm able to get around I'm just wearing out really easily. When the potassium was just a tad low my legs were all wonky so not good on my feet. The doc is unsure why I react to the potassium just being a little low.

Imaboveitall- So far I've trialed toprol xl, florinef, and pindolol. I keep having horrid reactions to the beta blockers and they drop my blood pressure. I took the florinef with the pindolol and ended up at ER, I think it was the pindolol but he took me off both.

Last edited by Clash; 01-04-2014 at 10:14 AM.
01-04-2014, 11:56 AM   #49
Jmrogers4
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Oh Clash I so hope you get answers soon and a treatment plan that gets you feeling back to normal. I don't know anything about POTS but just wanted to send you a big hug!
Glad C is feeling better and able to enjoy the last few days of break
01-04-2014, 12:13 PM   #50
Clash
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You know it is strange. We all know the frantic research that began when our kids were diagnosed. A chronic illness that is incurable, with many facets regarding treatment, prognosis, EIM's.

It is the same with POTs, I try to stay away from most of the forums or blogs because, like here you get an overwhelming number of people that have the disabling level of the syndrome. But the research goes in so many different directions with very few concrete answers.

I've read about one study done by a cardiologist in Texas that thinks POTs mimics the deconditioning NASA astronauts face after returning from space. In a small study, he used an exercise protocol for astronauts on POTS patients, something like 10 of the 17 studied no longer qualified as POTs dx after the regimen. This information has been met with extreme divisiveness among POTsies. You can now get the protocol through your doctor contacting the cardiologist at no charge. I'm seriously considering this and will be discussing it with the docs at Mayo.

For some reason, I can read through the hours of research on CD, treatment, etc and come away feeling like I have gained some beneficial knowledge. With POTs it seems much more difficult to understand all the facets. There can be different "categories" of POTs and most of the credible research suggests it is important you find out what category you are in which involves testing. The cardio I have now, seems uninterested in all of this so I am hoping to get those answers as well at Mayo.

There can be some sources that cause POTs as well and I hope to be checked for those. The most common is Ehlers-Danlos syndrome, which I don't believe that I fit at all.

Thank you all for your support! Such a great place with great people here and it definitely gives me strength during the uncertainty!
01-04-2014, 01:35 PM   #51
imaboveitall
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The link to Ehlers-Danlos has to do with the laxity of the tissues, including vessel walls. Interestingly, Violet has joint laxity, dislocates often, but does not have an Ehlers-Danlos dx.

Dysauto is indeed a frustrating thing, as it can present not only different ways with different pts, but different ways in the same pt. V has had temperature dysregulation for example, as a dysauto related symptom, then suddenly she didn't. Also the beta blockers can/do lower BP, yet in V's case were hoped to RAISE her low diastolic BP.

Hydration and sodium loads are the only things that give her some relief.
01-04-2014, 01:57 PM   #52
Clash
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Yeah, I read up on it some. I remember something about hypermobility of joints which is not an issue I have at all.

I am interested in the Mast Cell Activation Disorder association, with POTs as those with that connection should not be on beta blockers or calcium channel blockers, as I am. It also interests me because GI issues predated the tachycardia by a few years and I do have chronic gastritis that is h. pylori negative and experience flushing both of which are strong indicators when you have POTs that you should be tested for MCA. Of course there is also the fact that C has Crohn's.

It frustrates me more than anything, I mean I sit around literally trying to will my heart rate to a low 60! Ha, it actually makes sense as I spent some nights trying to will C's issues away as well. If it worked I would make a great superhero with a unique power...willpower! Ha!

Last edited by Clash; 01-04-2014 at 04:55 PM.
01-04-2014, 03:46 PM   #53
DustyKat
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Bloody hell! My heads mashed just reading what you have written Clash! Little wonder you donít know whether you are coming or going.

Thank goodness you are wicked smart!

Dusty.
01-04-2014, 07:48 PM   #54
crohnsinct
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Was just praying for you and C yesterday and today. Overjoyed at the C update but so sorry about all you are dealing with! What an incredible amount of information and if thens you are having to juggle. Good thing you have you on your team! I hope Mayo really gets a handle on things and comes up with a good plan!
01-04-2014, 08:05 PM   #55
Brian'sMom
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Sending support your way that Mayo helps you.
(Glad the Tamiflu worked for C)
01-04-2014, 08:10 PM   #56
my little penguin
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http://mastcelldisorders.wallack.us/...d=Mastodoctors

May help you find a good mast cell doc near you.
01-04-2014, 08:49 PM   #57
Clash
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Thanks you guys for all the support and info!
01-05-2014, 09:38 AM   #58
imaboveitall
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Clash this will sound odd but V also has/had a mast cell disorder, urticaria pigmentosa, from ages 7mo to 6yr. (resolved without tx). It is the cutaneous version of mastocytosis and I had her tested for gut masto at scopes, also had a tryptase level done. Both negative.

A high tryptase level is associated with systemic masto but NOT WITH mast cell activation disorder (MCAD). Well worth investigating, especially if you have the random flushing. V had that for years when she had the skin lesions.

The response to mast cell degeneration is similar to dysauto reactions.
01-05-2014, 09:57 AM   #59
Tesscorm
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Clash, I'm glad C is feeling better!!

But, in Dusty's words, my mind's mashed at all it seems you are going through! As if you didn't have enough worries! I do hope you can get some answers and get moving with feeling better!
01-05-2014, 10:28 AM   #60
Clash
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imaboveitall, that is where I'm not sure I match with MCAS as I have never had uticaria in any form although I do experience pruritus mainly on my back and head, it is exacerbated when I sweat.

Another odd thing, I have had cats all my life, throughout out childhood and adulthood. Last year we adopted two cats and I can't be around them. After about 10 minutes of contact my eyes start itching watering my nose fills with mucus and my throat gets thick causing short of breath. How odd is that to get an allergy at 39?

I've read that a bone biopsy is the gold standard for MCAS? But that was just lightly browsing since I don't really know where to start with it. I have an appt with my GI this Thursday and he knows I'm going to be asking about MCAS, I could tell from his nurse's convo with me that he doesn't think I have this.

I guess time will tell. I just want to rule out anything serious causing my POTs before moving forward on just a treatment regimen, kwim?

I've read ovarian tumors as well as something with the adrenal gland can cause POTs like symptoms. I do have an endometriomia(not proven by laproscopy only by vaginal ultrasound but it has shrunk which gyn says is a good indicator it is nothing insidious) on my right ovary. We are going to check it again in two weeks just to be sure.

The only other thing is a couple of weeks ago I had a severe bladder infection(I was having no symptoms they just found it with routine sample at gyn ofc. she was surprised I was having no symptoms with the severity of infection) I took the antibiotics, then a week later retested, no infection present but trace of blood. GP chalked it up to being on my period. 3 days ago I had gyn test and no infection but trace of blood, minute trace. I go tomorrow to give another sample and they are going to culture it.

Just ready for some answers
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