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DS is usually tired for a couple hours after, but he also gets pre-medicated with Benedryl (and Tylenol and Solimedrol).

Since you don't know what to expect, I think I'd change her work shift if you can.
 
Yeah, first one I would switch. Jack was tired after the first 2 infusions although it hit him a little later in the afternoon but it was the kind of tired where he basically fell asleep right where he was in the middle of a sentence. No problems since then. He has rapid infusions done now (they are finished in an hour) and he has them first thing in the morning and goes to school afterwords. His only pre-meds is a steriod.
Congrats on nursing school and I hope the remicade works wonders for her.
 
M had her infusion 5 days ago and everything went smoothly according to the nurse. I wasn't allowed to stay with her as there was no room.

2 days ago she started to get sore itchy eyes. l don't know if this is just a coincidence or not but she's never complained about her eyes before. I've made an appointment with the optometrist but l don't know if l should contact the nurse as well.

I've read a lot of kids get a blood test before the infusion but M told she didn't. Does this sound right.
 
when were her last blood tests? I remember one I fusion they didn't pull labs on o because she had just had them done a week or so prior.
 
M was told to use eye drops and they helped straight away, so it looks like its just an allergy. I don't know why l didn't try that in the first place.

M's last bloods were about 2 months ago.
 
S has his blood tested every other infusion (every three months). But, I do check this. A year or more ago, when I thought S was getting bloodwork done each time, I noticed that bloodwork hadn't been done at one infusion. When I asked nurse, she said GIs have different schedules - some each time, some every other, some every six months, etc. When I asked about S's schedule, she looked and said that there was no set schedule for S, it was whenever GI requested it. I wasn't comfortable with this so called the office, turns out the bloodwork orders need to be renewed every six months and, somehow, the last renewal had been missed! :ymad:

Probably best to just verify what the schedule should be.
 
M starts uni next year and she had no intention of telling anyone she has crohn's. That was until our gp had to fill out her vaccination record card which required a blood test. We found out she has no immunity to hep B and pertussis, even though shes had all her vaccinations. Our GP has no idea how to treat her so he's referred us to an infectious disease dr.... so now she has no choice but to let the uni know, but who does she tell?
 
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Upsetmom,
Has she had testing for immune disorder? Lack of building antibodies to vaccines can be a sign of an immune disorder and I am sure you know that there is a link between immune disorders and crohns. If she has not seen an immunologist I would ask about seeing one ASAP.
 
Carolin, they don't require a physical. They only need to be up to date with all their vaccines.

Kim, I think she was tested by the endo when he was trying to figure out why her ovaries stopped working.

I spoke to my son (didn't think to ask him) and he said she should go to the main head quarters and they should guide her to the right person.

M said they start work placement in the first semester, so this puts her behind for at least 6 months. Not a happy girl.
 
We spoke to the Office of Disabilities here. Most schools have one in the US. They have been an enormous help. My older daughter was doing great before she went to school and refused to register with the Office of Disabilities. After many arguments, she finally agreed to. She ended up having a very difficult semester health-wse and was VERY grateful for their support.

So I know your daughter is upset, but perhaps this will actually help. No idea about the vaccines - I know we checked chicken pox before my daughters went on biologics and both had no antibodies and we had to redo the shots and wait for several months before starting biologics. The chicken pox vaccine is a live vaccine though, and I don't think Hep B is live. Not sure about the other one.

Sending hugs!
 
What makes me angry is M got tested before she started remicade and she had no immunity to chicken pox and hep b. Our GI said to only give her one shot of hep b as a booster and she should be right, there was no further testing after that one shot. Our GP didn't think it was right but went along with what the GI said.
 
Yikes - isn't she going to be a nurse?! Will she work with kids? I'd be worried about the lack of chicken pox immunity. I hope the infectious disease doctor can give you more insight :ghug:!
 
She need to register with disability services.

Sarah didn't register, and it made it much harder when she needed extra time due to a severe cold because normal there is no extension allowed for "colds". She needed to do lots of extra running around.

My middle daughter is registered with disability services at university and no one knows.
 
She did have the chicken pox vaccine before starting remicade. And yes she is going to study nursing and be working with kids.

Catherine thanks for guiding us in the right direction.
 
Upsetmom,
She needs to see an immunologist. She needs a full immune work up especially if she plans to work with kids. The endocrinologist may have done some testing but I dont think they would do as thorough a job as an immunologist.
 
So a lot has been happening with M the last few months.

Crohn's wise everything is good, still getting pain occasionally but not like before.

A few months ago M started to get these attacks. I've never seen it happen but she tells me she starts to see white spots, loses her vision, gets all sweaty and apparently she goes all white. This goes away after laying down for a while. Our GP tells me its fainting but for some reason l don't believe its fainting. We saw a ENT to rule out anything with the ears as M is also very dizzy most of the time. Blood sugar levels are normal. ECG normal. Our next step is a neurologist.

M has had knee pain for a few years which we were told was related to her crohns. As her crohns is under control our GP sent her to see a specialist. After examining her he told us the pain is coming from her hip. M was born with a clicky hip and had a harness on for 3 months, we were told all was good and there was no need for any more tests. This specialist doesn't believe the problem was fixed properly in the first place and that's why M is having trouble now. M had xrays done to see how bad her hips are, we go back to see him in two weeks. I'm praying her hips aren't that bad.
 
Kim no one's mentioned it. These attacks happen even when she's seated. Few weeks ago she was driving home when she started seeing white spots, luckily she was on a quiet street where she could pull over and lay down. I refuse to let her drive till we know what's happening.

At uni today all the students were practising checking each others heart rates. When M's heart rate was checked it was 100 sitting down, standing up it went to 168. The teacher was so worried, she told M to make sure she sees her GP. So maybe this has something to do with her heart. I've noticed every time M's blood pressure is checked her heart rate is always high, but no one ever seems concerned. I've made an appointment to see our GP, l'm going to ask him to put a 24hr heart monitor on.
 
If the heart rate is high even when resting (ie sitting, lying down) you may want to look at IST, inappropriate sinus tachycardia. Also like kimmidwife mentioned postural orthostatic tachycardia syndrome could be the culprit. Both are dysfunctions of the autonomic nervous system. An a cardiology electrophysiologist can run some tests which include a heart monitor (usually a longer span like a month is better), a tilt table test, blood volume etc. An EP can rule out true arrhythmias like SVT, WPW and such as well as make sure all looks well with the heart.

Also, has her anemia levels been checked? When my son was first dx with CD slight anemia caused a raised hr that would cause him to be dizzy and short of breath.

I was first diagnosed with POTs but now mine seems to be more in line with IST, although it's not rare to have both.
 
Thanks for all the information Clash. I'm determined to get down to the bottom of this. Something is wrong with M and its not just fainting like our GP thinks.

Iron levels are all normal except for fertin which has been quite high.
 
It was in the 300's. It was tested a few weeks later and it was still the same. GP then tested for haemochromatosis which came back negative. Testing again in a few weeks. No supplements are taken. M did have an iron infusion in October.
 
My daughter has also had a high Ferritin - in her case, it was caused by inflammation. Any chance it's just that and the Remicade just needs more time to kick in?

The fainting issue made me think of POTS too. My daughter's heart rate also went up a lot when she stood. She would faint if she got up too quickly. We never got around to testing for POTS and it has since gotten better (and she knows now to get up slowly and carefully).

She still has a high heart rate (tachycardia) all the time, but in her case, her cardiologist believes it is just the stress of chronic illness on her body. We did an echo and then hooked her up to a Holter monitor for 24 hours.

I hope they are able to figure it out soon. I'm SO glad her Crohn's is better on Remicade!
 
Have you got the other iron numbers?

Did the hemoglobin level rise as well after the iron infusion?
 
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Hemeglobin did go up after the infusion, all the other iron numbers are within the normal ranges.
 
You mentioned fainting/dizziness early. What was she doing when they occurred?

The high ferritin was most likely caused by the iron infusion. It can also be raise due inflammation.

She should avoid any supplements containing iron to ferritin levels normalise.
 
She's dizzy most of the time. Like l said l wouldn't call this fainting as l have seen M faint when she had her first blood test and this doesn't sound like fainting to me, she's still aware of everything that's happening. It happens randomly she could be sitting on her bed, standing or driving, so really there's no pattern to it. And it can occur at different times of the day.
 
I forgot to mention the dizziness started about 3 years ago, about a month after starting imuran and she also had one of these attacks back then. I did question her old GI about the imuran but he said there was no way it cause all of this. As M is so use to the dizziness we kept forgetting to mention it to her current GI.
 
Upset mom,
Two things,
Firstly of you noticed this started with imuran it could be from the imuran. I don't care what they say. Call the drug company and discuss it with them.
If you are saying she actually somewhat aware of what is going on around her that actually to me is a warning flag for a certain type of seizure called a simple partial seizure. Her symptoms are similar but not a complete match to me.
Ask for an appt with a neurologist ASAP. I am still leaning toward POTS though. I think the symptoms fit more. (That is my opinion I am not a doctor and I don't play one on TV, LOL)
 
My opinion is the dizziness and high rate sound like her most pressing issues.

Prior to Sarah's dx we saw a neurologist for fainting. He was was the one who arranged most of her heart tests. He also gave the OK for her drive. You are not allow to drive if you have a seizure or faint without dr approval.
 

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