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DanceMom

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The IVIG therapy was approved by our medical insurance company! Because we met our out-of-pocket max for the year already we won't have to pay anything for the infusions for the rest of this year. I'll worry about next year when that time comes. We may be on SCIG by then anyway. I emailed the nurse to let her know the medication should arrive at the hospital today, so hopefully she'll get back to me with appointment information soon. Both nervous and hopeful about this!!
 
Brilliant news DanceMom! :applause::applause::applause:

Sending loads of luck that all goes wonderfully well with the infusions and you soon have an appointment. :ghug:

Dusty. xxx
 
We have an appointment for Tuesday morning! For now I feel relieved that things seem to be falling into place. Come Monday night I'll be a nervous wreck! lol
 
A has been doing fairly well lately. She has a cold and some EN lesions but nothing major. She seems to have another affected joint though - her big toe! She says the Icy Hot helps.

I'm getting nervous. Trying to focus on the positive!
 
Good luck!! I hope they're able to find a vein easily and everything goes smoothly:ghug:!
Do you know if it's a long infusion? With Remicade, M takes a book and is able to watch TV there. She actually enjoys her infusions (after the IV is in) because it's a good chance to relax!
 
Your post caught my eye because my father in law gets IVIG for joint pain and he swears by it...lots of luck!!
 
A had her first infusion today! It started a little screwy because our not-so-fabulous nurse scheduled an appointment without actually entering it into the system (all she did was email me a time). The infusion director handled it but we got started an hour late. The center is nice and our nurse today was great.

They pre-medicated with Benadryl and Tylenol and had no trouble getting an IV started. They started the infusion extremely slow but she tolerated it well and they were able to increase the rate. They check vitals every 15 minutes. She developed a fever briefly, lasted maybe 30 minutes. The infusion lasted about 3 hours and then we were on our way.

She has a fever again this evening along with a slight headache. She keeps assuring me that she's "charged up for the month" and no need to worry, lol. We were told the headache/fever is common and expected (as long as it isn't severe). Going camping tomorrow and not worrying about a thing!
 
Glad things went well
Sounds very similar to the remicade infusions DS used to get .
Good luck camping
 
Both girls have stuffy noses and A also has a headache and fever. We are sitting in the camper pouting and drinking lots of water. Frustrating!
 
Glad the infusion went well. Sorry the camping isn't going great. Hope they feel better soon
 
A's cold/fever are gone and all is well again! She's really doing great besides her joint pains. I mostly credit the Flagyl. That stuff works wonders for her.

We have most of her pre-infusion labs back. They look good other than IgG. Her WBC are still low, but higher than her previous draw. Could be because of the cold/fever that was brewing. Her IgG dropped from 602 in March to 503 (673-1734). I think IVIG was the right decision at this time and we'll see how things progress.
 
Can someone give some info on Ivig therapy.
Is this something that will help with auto-immune diseases?


Oh and Dancemom how is your girl doing?:)
 
Farmwife - Did your docs mention IVIG for Grace? I've read that it can sometimes be used in autoimmune conditions but I imagine it'd be a nightmare to get insurance approval on. IVIG is extremely expensive! Our Rheumo was very thorough with the immune testing so that process was lengthy, but the hypogammaglobulinemia and impaired antibody response couldn't really be argued and insurance approved the pre-auth pretty quickly once submitted.

A is doing fairly well. She says her back pops more now which she feels offers some relief. She is wrapping up her course of Flagyl (finishes tomorrow) and the diarrhea started coming back today....her luck. She does seem to have a white spot on her tonsil which she says hurts some but it doesn't seem to be increasing in size. Just watching it for now. Her energy is pretty good and she's happy. AND......her hair (that she lost while on Mtx) is growing back! It is fuzzy like a baby chick and sticks up all over her head, lol.
 
No mention yet. I read a paper about a child that had multiple auto-immune issues and IVIg was used.

I'm glad A is doing better.
 
That's good she is feeling alright and happy. Hope things keep going in the right direction
 
What would you call stool that comes out semi-formed but turns into a pile of flaky mush as soon as it hits the water? That's where we're at now. Saw a little blood as well. Pretty disappointed. Her energy levels have dropped as well. I can always tell by how she tumbles. At least we had a few weeks of peace.
 
Sorry to hear that, poor A! Did they tell you how long IVIG typically takes to kick in?
 
I really don't know. It depends on how her body responds I suppose. Anxious to see where her levels are at next infusion.
 
Sorry to hear that. Can they bring forward the infusion, or is it really just a wait and see just now?
 
It is scheduled for every 4 weeks now. Some people do need to go every 3 weeks. It is based on labs and symptoms from what I understand. I really can't imagine infusing every 3 weeks for the rest of her life. SubQ is an option but she is very against that right now.
 
Big hugs... Sorry things have returned.
As far as iv vs sub q - if the meds are painfully ( not the needle stick).
Iv is easier on the kiddo since you as the caregiver do not have to inflict the pain .
Other thing to consider - it's better to think of things for this month or year vs a lifetime since things can and do change including the science /meds and kiddo .
We got caught up in the remicade for life bit when DS started that -
Turns out it was all of 8 months - wishing it was longer now .
Six years ago DS had life threatening food allergies to eight different nuts - we were told it was for life - the statistic for out growing one is 0.2%- there is no number for 8 different nuts. But today - no food allergies - yes he is an anomaly in many ways crohn's included but we have learned to try to focus in today since that is the only thing I have control over .

Hope the next infusion last longer - maybe just a tweak in dose is needed
 
Diarrhea and a low-grade fever. This is how it seems to go. Not sure if the Flagyl was the "magic pill" or the IVIG since she started the Flagyl about a week before her last infusion. Don't want to restart until we see what the next infusion does for her. A little over a week.....we can do this.....lol.

I'm wondering if we're dealing with recurring SIBO. After one set of scopes we were told A had SIBO but it hasn't been mentioned since then. I'll definitely ask the GI about this at her next appointment.
 
In my son's case it kicked in in 4 weeks. Severe rectal bleeding stopped just like that (the evening before was bleeding a lot, next morning nothing!) . The good period lasted for three months, then the bleeding started again little by little. That was 1,5 years ago. Still bleeding very badly, stomach full if ulcers;-). The IVIG didn't take his Crohns away but he is still on it. His immunologist still believes that he has an immunedeficiency. Otherwise extremely healthy, never fever, running nose or stomach flu!
 
The diarrhea is increasing in frequency. She's going 4-5 times a day with the occasional normal looking stool. The urgency gives her anxiety, and this year's teacher isn't quite as sympathetic as last year's teacher. Fortunately she is maintaining her weight, and the high-calorie juice boxes we ordered just came in.

Last night she began complaining that her bottom was itching, like an intense itch. Within an hour she said it started burning so I decided to take a look. Looks almost like a small sore developing, not at all like the "crack" of her last fissure. I'm wondering if she scratched and irritated it. I'll keep a close eye on it to be sure it doesn't get worse.

I went for my second plasma donation yesterday and had a rotten experience. I woke up with my face hurting and figured my wisdom teem were about to break through again (they can't decide if they want to come in or not, lol). Went ahead and donated and had to stop early because my blood pressure dropped drastically. I became very lightheaded and dizzy and remained so for the rest of the day. By mid-afternoon it was obvious I'd caught the cough/cold that hubby and my youngest have been plagued with. Somehow A has escaped this and I pray it stays that way! Small world though....while at BioLife I ran into a childhood friend who was donating because his son also receives IVIG. Just hoping my next donation goes better!
 
I really hope it isn't a fistula! Whatever it is it appears to be in the beginning stages, so time will tell. Can a simple fissure resemble a tiny sore? Her last fissure looked similar to a paper cut, just a small crack with minimal redness. This one is more round, almost like a tiny chunk of flesh is missing. (I apologize for my awkward descriptions, lol)
 
I hate to say it but the way you describe it sounds like a fistula. I could never see a hole well with my son but it did look like a bit of skin missing. I do hope it isn't though. The only way we found it was by MRI
 
Sascot - Did he complain of itching or burning? A had itching/burning with her fissure, but this just looks different. I'm still hanging on to the possibility that she was scratching and caused trauma to the area.
 
Doesn't she have a 504?
Teachers sympathy should be a factor at all.
It should be part of her 504 to have unlimited bathroom access without any questions from any teachers or need to ask/hall pass.
If it's not part of her 504 I would ask for a meeting and add it so all can be on the same page.
Legally they have to follow it and not give her grief.

She has enough to deal without having to "deal" with teachers .
We had to re iterate the terms of his 504 again this year but one email and the nurse took care of it.
Hope the d stops soon.
 
She does have a 504 that states that she has unlimited bathroom access. Last year's teacher cared very deeply for her, even came to her dance recital. I felt comfortable sending A to school even if she wasn't 100% because I knew her teacher would keep a good eye on her. This year's teacher just seems unattached. Didn't ask many questions about A's health or needs and I know A wouldn't feel comfortable telling her she'd had an accident. I'm not sure she bonds with her students the way last year's teacher did. It isn't a matter of her not letting A go to the bathroom, it is just that A doesn't feel that it is okay to keep going because her teacher doesn't even pull her aside to ask if she's okay. A is a people pleaser and doesn't want to make any waves.
 
I don't think it itched at all, but I was painful to start with although mainly because it was inflamed. I hope it's just a bit of tissue damage
 
Hope it turns out to be nothing and she is feeling better. That is not good about her teacher. Can you go in and have a talk with her?
 
Sore still looks the same and she says it doesn't bother her right now. She has been leaking stool and it is difficult to tell if the sore is oozing or if it is just stool. She's wearing a pad and taking baths to keep herself clean. Thank goodness she's not at all embarrassed about this and finds it amusing to moon me throughout the day. She has her infusion tomorrow so I'm hoping that clears up her current issues. If not I'll contact the GI.
 
DanceMom, definitely go in to speak with her teacher. As an educator myself, and having Crohns & Diabetes, I am very sympathetic with my students who have any medical needs. In fact, I have an open door policy about using the restroom, as long as they are not going in to play! Hopefully they develop a trusting bond soon! Well wishes for your daughter!!!
 
Second infusion complete! The IV was a nightmare. Had to get a second nurse. She had a minor breakdown but I felt she was entitled to it so I let her go. She's still adamant she doesn't want SubQ. The infusion was fine though her blood pressure dropped significantly (98/25 and 95/41). The nurse never seemed too concerned, maybe because A said she felt okay. She went to dance afterwards and now says her stomach feels weird. Hoping tomorrow she feels 100%.

As for her teacher..... She just doesn't seem very cheerful. A came home upset today that the teacher told them she doesn't make a big deal of birthdays so don't expect anything. Not even a 30 second song. This could be a long year.
 
Just wondering, is SubQ a regular shot? In my daughter's case, IVs are getting so bad (probably not like A's though) that she wishes Remicade came as a shot.

Anyway, could her rheumatologist put her in touch with another kid who's doing the SubQ version? Our pediatrician actually put us in touch with another family who had a daughter on Humira before M started it. It made her much less anxious about it.

I hope school gets better. That teacher does sound like no fun.
 
SubQ is an infusion that we could do weekly at home. Infusion sites are usually the stomach and thighs. Site reactions are common. She doesn't want to be reminded weekly that she's sick and I get that. It's definitely something I want to discuss with the Rheumo at her next appointment.

Almost forgot to mention that she gained a pound this month! 8th %ile! WooHoo!
 
Getting shots often... I agree that its a reminder for the whole family of illness being present, However... I think that's only the case if you are getting the shots and still feeling bad. So If she starts to feel great instead of feeling sick... then it would take on a different feel maybe. I sure hope this recent infusion helps her. I'm so interested in the IVIG
 
Yeah totally agree - M got to a point where she almost looked forward to Humira which is pretty amazing considering it really hurts.

I hope A starts feeling better soon!
 
Glad the infusion went well, hope she is feeling okay today. The school teacher does sound like a grump! That's good she is keeping her bottom clean, we were told to take the shower head off its bracket and give between the bum cheeks a good clean to stop infection.
 
Labs are in and they look great! IgG and WBC are normal! Glucose was high but we'd eaten 2 hours prior. TCO2 was low but considering everything else looked good I'm sure her doctors aren't concerned.
 
Regarding the TCO2.....I've read that it can be caused by diarrhea (which she is having). If her diarrhea truly affected this lab would other things be abnormal too? Or maybe not? She's having 2-5 stools a day, mostly explosive diarrhea with the occasional normal stool. She isn't having any stomach aches. I don't want to put her on Flagyl unnecessarily but I also don't want her to be out of balance in any way. Could she be dehydrated despite drinking so much water before her infusion? Maybe that was the cause of the difficult stick?

Yes, I still ask a million questions and have a million worries even when things are smooth sailing.....lol.
 
How about giving her Gatorade or powerade sometimes instead of straight water to help replace some of the electrolytes?
That teacher really does sound like a grump! I hope A will be okay with her. Very glad her labs overall looked good!
 
I wish she'd drink Gatorade but it reminds her of cleanouts and she won't touch it. We received her Resource Breeze juice boxes but she says they are disgusting and getting her to drink 1 a day is difficult. She drinks plenty of water, juice, and milk but I suppose she could still be dehydrated.

This afternoon she started experiencing a terrible headache and nausea. Weird that she'd develop side effects on the second infusion 48 hours later. She looks awful.

And yes, CRP and SED were done. They are always normal though, even when she had an obvious bladder infection. They just aren't good indicators for her.
 
To your earlier post about dehydration--My son has to be careful of dehydration. However, He's in a different state with having his large bowel diverted. So not sure if this helps, but he is supposed to drink 45-50 ounces of water or gatorade. He can drink milk, sugar drinks or juice... but they don't count in his required amount. Do you still feel like she may be dehydrated? (PS, My son hated the Breeze drinks too! I tried one... I didn't care for it either!)
 
I'm happy to report that A is doing well! Two days after the infusion she experienced a severe headache and nausea that lasted about 12 hours. I really think the diarrhea had her dehydrated and she just wasn't able to drink enough to prevent side effects. After that passed the diarrhea stopped, no more stomach aches, and she is full of energy! Others have even commented that she looks healthy! She is still having back pain but I'm hoping that will get better in time. Right now I'm very pleased with her response to therapy!

She has a Rheumo appointment in a few weeks. I have a lot of questions for him and I'm hoping we can make some changes if her symptoms start to come back before her scheduled infusion. I really feel like we're on the right path and that feeling is exciting!

Getting her to drink these juice boxes is awful. They do have a horrible smell and she hates them. She does seem to be slowly gaining weight though so I'm making her tough it out.

Hoping for another good 3 weeks until her next infusion!!
 
So.....A wakes up yesterday morning and is very upset saying her stomach hurts. I try to reassure her that everyone gets a tummy ache from time to time but inside I'm totally having a panic attack that maybe the infusions aren't really helping. I stress and worry all day at work only to come home and find her giggling and playing. She was so excited to tell me she realized her stomach hurt because her stomach muscles were just sore from dance the day before. Give me a heart attack child......lol. It may take awhile before I stop freaking out about the little things!
 
My happy little bubble isn't popped....yet....but I'm noticing a pattern.

Week 1 after infusion: all is well, no symptoms, full of energy
Week 2: still doing awesome, no symptoms
Week 3: 3-6 BMs/day, stools sometimes loose, small amounts of blood, still feeling great
Week 4 leading up to next infusion: full blown symptoms

We see the Rheumy next week so I'm hoping some adjustments can be made. I know this is one of the reasons some people prefer SCIG (weekly subQ infusions) but I know A doesn't want to go that route at this time. Going to try to enjoy the rest of week 3 before week 4 comes along!!
 

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