Second Opinion Immunology Appointment

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Today A woke up with a sore throat. Looked a little red but she was very whiny so I let her stay home. After being home about an hour her eye started swelling shut again. What the heck?!? Why does her eye swell every time she gets any sort of illness???
 
Has she seen an opthamalogist when Her eyes were actually swelling?
Not uncommon when inflammation infection is overloading the body for the eye to show it .
 
No, she saw an ophthalmologist a few years ago (maybe 2?) and everything appeared normal. It is just bizarre to me how labs can look normal but she just starts swelling. Benadryl reduces the swelling some if taken quick enough, but I just don't understand what makes her swell in the first place. I mean, they can swell completely shut in 15 minutes.
 
The opthamologist can give you an idea of what going on .
But she needs seen during a swelling incidence
They see things in the back of the eye etc...
 
How are her eyes today ?
Did the Benadryl work ?
Have they tried topical steroid drops to make sure the inflammation is staying away ?
Ds is on fml drops 2-3 times a week in the winter on 7 days a week in the summer
He has had swelling that bad in years
Patanol 3-4 times a day worked for him when combined with allergy shots

How long again was she allergy tested for pollens ?
More than a year ??
 
Eyes are fine now, benadryl helped (and she's over the virus). It's been a few years since she's had allergy testing but this definitely isn't caused by pollen or environmental allergies. Her eyes aren't red, watery, or itchy. Patanol had no effect. We've been given a vague autoimmune explanation. Perhaps the CTA will provide more answers.
 
A has done well over the past few days. Only thing off is her appetite and she's lost 2 lbs. She seems to have energy though and gym tonight will be telling. Waiting on the GI to order the CTA so we can schedule it. I just want it done and over with.

A bit of exciting news.....A has been asked to speak at a local plasma donation center! She's very excited to share her story and tour the center. We have a few weeks to prepare her speech and of course buy a new dress, lol.
 
GI emailed and said he is deciding between CTA and standard angiogram. From what I understand (by googling, lol) the CTA really isn't so bad and is similar to the MRA that she's already had. A standard IV is started with dye given through the IV. The standard angiogram would require an IV through the groin and a longer recovery (laying still for 6+ hours after procedure, clean bandage for 48 hours, 1 week of physical limitations). He wanted to consult with some other doctors and said he would get back to me in a week or so. I just want what is best for her.
 
These tests are being requested by our 2nd opinion Immunologist who has been in direct contact with our GI. He is the one that advised us to seek out a second opinion and suggested this particular physician. She respects our GI a great deal and has a good relationship with him. Our Immunologist/Rheumatologist isn't as responsive and his team sorta sucks. It took them 2 months to get an MRA partially approved. We showed up for our appointment and we could only get the pelvic MRA, not the abdominal one. When I spoke to the Immunologist she advised me to work with the GI on ordering these tests. Either doctor could order it but the GI has a more efficient team, he seeks out many different opinions as to what would be best, and he will get the results in a timely manner.
 
Haven't heard back from the GI yet regarding testing so I emailed him. I just want it over with so we can move on. I fully expect results to be normal, but if they aren't then we need to know ASAP so we can change/adjust treatment.

A was doing really well until yesterday. Long story short she's due for her infusion this week. We usually do Mondays but I pushed back until Wednesday for several reasons. Yesterday she started with stomach pain, uncontrollable diarrhea, lack of appetite, fatigue, moodiness, painful lumps on her arms.....all very familiar things. It's funny how you can almost forget (or doubt) your child has a chronic illness when the medicine really works.
 
GI already emailed back. Said he wants to go with the angiogram. Immediate knots in my stomach. Recital is coming up, vacation, then Nationals....so hoping to schedule for mid-July.
 
So sorry to hear that. Really hope the test goes well and they can schedule it when she doesn't have to miss out on anything.
 
A had her infusion and is already feeling much better. Still has a poor appetite and lacking energy though. Last 2 days she has had very pale stools that appeared to contain blood. She did have strawberries on Monday so I'm hoping that's what we're seeing. Waiting on labs.

Update: 30 minutes ago she had the pale/red stool of normal consistency. Just now had explosive diarrhea (emphasis on explosive) that is watery with large chunks of white (undigested food?). What the heck is going on? I'd love to call the GI right now as I'm a tad bit freaked out, but she's insisting on going to dance and waiting to see if things get better or worse. Geez....
 
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Definitely wasn't mucus. Not positive it was food but I can't imagine what else it'd be. There appeared to be small flecks of blood. She says she feels fine but obviously she's not fine. No one that is "fine" explodes all over the bathroom like that. I'll give it more time before calling the GI. I wish her labs gave a more accurate picture of what's going on.
 
A's CBC is a little concerning to me. I have a message in to the doctor but of course I want to know what you all think.

WBC 3.3 (4.5-13.5)
Absolute Neutrophils 1330 (1500-8000)
Absolute Lymphocytes 1439 (1500-6500)

Update: GI didn't seem concerned because hemoglobin was normal. Said to give it 5-7 more days and if she was still having symptoms we could do Flagyl.
 
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That's what Grace runs normally on her CBC.
I was told it was because of her meds.

Is she still having symptoms?
 
A's WBCs are often low (4-4.5) but never this low. Lymphocytes are sometimes low as well and have been lower (1200s). But Neutrophils have never been low. It concerns me that all 3 are low. The only medicine she's on is Flonase and Privigen. Maybe the Privigen gave her system a little boost and her numbers have come up....I have no idea. Our Immunologist probably doesn't even look at the labs he orders.

She's still having diarrhea but only 2-3 times per day. Haven't seen any blood today. She's been feeling good since Wednesday so we went swimming a few hours today. Now she's back to being curled in a ball with a tummy ache and headache. Keep her in the house and she gets angry that she can't be a normal kid. Let her go out and be a normal kid and she suffers the consequences of feeling sick. Can't win.
 
Immunologist emailed and said it is to be expected with her immune deficiency. She's considered "mildly neutropenic" and at that point there isn't much to be done. A lot of watching and waiting.....
 
Dancemom,
Very glad the immunologist emailed you. I was wondering if it might be a normal thing with her immune disorder. Hope she is feeling better!
 
GI emailed about angiogram. They are working on getting insurance approval. I will call this coming week to try to schedule. She will have to lay flat and still for 6 hours after the procedure as a precaution. If things don't go perfectly we'll stay overnight.

A has been doing normal kid things but her attitude is hard to manage. She's cranky and irritable and not real fun to be around. I want my sweet and healthy girl back!
 
Your poor girl, sounds like quite a procedure. Hope it all goes smoothly and gives you some solid answers.
Good luck!!
 
Thank you Maya but A has low IgG and that article is about elevated IgG. Still an interesting read and may be helpful to someone else. The immune system is so complex....
 
A is feeling much better and working on getting her energy back. It is tough to watch her cycle and I'm not sure I'll ever get used to it. I'm working on realizing that she's in treatment and there is no cure. I so badly want her to be "normal" and these blips just suck. I'm sure you all can relate.
 
Glad she is a bit better, it's hard watching for the blips all the time. Good luck for the angiogram, hope it goes smoothly.
 
Dancemom,
I have to agree these blips really stink!!!! Prayers for a cure for all our kids and all kids suffering with any chronic illness.
 
Angiogram is scheduled for next month. Will be done by the head of interventional radiology. Will most likely be admitted but we'll see. I requested a Child Life Specialist to be present because she's scared and angry. For some reason having a date puts me slightly at ease.
 
Does she see a therapist ?
Might be a good idea to get one started since chronic illness has lots of tests and ups/downs which are tough on kids
 
Not yet, but I think she would really benefit from one. I'm going to ask the GI to recommend one that might be a good match for her and try to get something set up before school starts again. She just wants to be normal and I'm starting to see some anger that just breaks my heart. This journey was so much easier when she was younger.
 
Yes, their something easier about them being younger but they don't stay young.
I'm also starting to notice things in Grace's personality that wasn't there before.:frown:
They will always be something to do, take, feel, endure,.........

I just pray I can help her see how special she is the way she was made.

Hugs to your dd and you!
 
Hugs to both of you Dancemom and Farmwife!
It is harder as they get older and have to come to terms with living with a chronic illness. We went through this as well. I found an art therapist for my daughter that really helped her. I would highly reccomend that if you can find one in your area.
 
A was able to speak at a plasma donation center yesterday, sharing her story and spreading awareness about immune deficiencies. What an awesome experience! The staff was genuinely interested and so welcoming. The donors were very kind and seemed very happy to put a face to their donations. It was great to see A come out of her shell and be proud of her illness. Definitely hope to visit more centers! This is recital weekend and so glad A is back to her normal happy self! Going back to my happy little bubble!!
 
Still in my happy bubble! Recital was awesome and now we're enjoying vacation at the beach. This is the first year that A remained healthy through the stress and demands of recital time. Thank you IVIG!!
 
So, in true A fashion we can't get through a vacation without an issue. Two days ago we noticed swelling under her left eye. Her eyes swell fairly regularly so we thought it was related, just lower (top of her cheekbone really). It didn't bother her so we carried on as usual. Yesterday the swelling had gone down some and it appeared to be a bite, probably from a mosquito (she reacts pretty significantly to them). Last night she started complaining of facial pain on that side. I gave Tylenol and Benadryl but neither helped much. This morning she says the pain is much worse, even affecting her ear. If I barely touch her face she cries. Any ideas?
 
Sounds like it could be a reaction to the bite. I would call her regular pediatrician maybe and see what they think.
 
A started feeling worse and running a fever so I found a nearby clinic to take her to. She has a severe outer ear infection and most likely an inner ear infection as well. The outer ear is so inflamed the inner ear could not be seen. She also has a sinus infection and asthma flare. So glad I took her but so bummed she couldn't enjoy vacation to the fullest. Apparently the bite was just a bite and just threw us off a little.
 
I'm not sure. What are the potential concerns? She was given an oral antibiotic, prescription ear drops, and we're to give Tylenol, albuterol, and re-start her daily inhaler (we were told to take her off for the summer unless issues arise).
 
Immunosupressed or defeciency have a higher rate of mastoiditis which is a medical emergency.
Ear infections spread from the middle ear through the tiny canal to the mastoid bone ( porous and can later spread to the brain or blood stream or cns
Typically the ear infection does not get better within 48 hours of abx.
Pain on the flat bone behind the ear and sometimes the neck from below the ear
There maybe a red bump behind the ear or fever
 
We are headed home tomorrow evening, so she can be seen by the pediatrician on Saturday if she isn't better. Right now her pain is in her ear lobe, and whole left side of her face. She hasn't mentioned pain behind the ear or neck but I'll keep an eye out for that. Thank you!
 
A feels worse today. Rarely getting off the couch. Ear drops are draining better though so I know swelling is going down some. Having trouble getting asthma under control with inhaler so hopefully nebulizer works better when we get home. No more trialling off meds!
 
Still no change. Her pediatrician is out of town so we were told to take her in on Monday if she's not better. Ear infections are not the norm for her. The only other one she's had took 3 rounds of antibiotics and a nasal spray to clear it. Also got a letter in the mail that her Immunologist is leaving the hospital. Have an email in to GI to see who he recommends as a replacement. Feeling discouraged today.
 
No advice. Grace isn't prone ear infections either.
However my son and I do get infections from our bug bites.
I hope she feels better.
Poor A! Not how to spent a vacation!
 
Took A to the pediatrician today as a follow-up. Middle ear looks good, outer ear still infected. She prescribed a stronger ear drop. Asthma is still flaring so she prescribed a 5 day course of Prednisone. Just anxious to get her feeling better.

NP called about angiogram today. Child life will be present before sedation to make her feel more comfortable. The procedure will last approximately 3 hours and then she'll be moved to ICU as a precaution. Will be admitted or discharged from there. Yikes.
 
A is feeling much better. Ear pain is mild and asthma is starting to improve. Thank you Prednisone!

We have decided to see if our second opinion Immunologist will take on A since our current doctor is leaving the hospital. She's a fabulous doctor but we've become so comfortable at our current hospital that any change is a bit scary. I have a call in to our infusion center to see if we could continue to go there or if we'll need to move on to plan B. A loves how our center operates and has made relationships with the nurses there. I've urged her to consider subQ infusions and she agreed to at least think about it. I also plan on checking into home health to see if home IV infusions are an option.

And this weekend we leave for her National competition! Hoping she can stay healthy and have the energy to dance her best!
 
Glad she is feeling a bit better. Change is hard, I wish my son could stay with the paediatric team forever! Good luck for the competition.
 
A won 1st overall for her solo! She was absolutely beautiful on stage and danced with real maturity and passion. So happy for her! Groups start today so we're hoping that goes just as well.

She feels good overall except for this overwhelming feeling that she can't catch her breath. About every 20 seconds or so she does this open mouth gasp like she's desperate for air. The prednisone helped slightly but the albuterol seems to have no effect. Not sure what's going on.
 
So proud of A!

Is she on a maintaince med for her asthma?
A one point Grace had 4 difference meds (3 inhalers and one pill) to help her asthma.
She would also do the silent gasp.
 
Yes, we just restarted QVar40. She also did a 5 day course of Prednisone 20 mg and we've been doing albuterol every 4 hours for about 2 weeks.
 
We did Qvar 40 but they upped Grace to Qvar80 and that seemed to work better for awhile.
Now she's on Symbicort daily but
uses her Qvar80 plus albuterol during flares.
We finally got her off her Singular but might be adding it back Grrrrrr

My mother is in awe of all these meds for asthma. My poor brother only had one or two most of his childhood and it never seemed to help much.
 
The qvar will take 6 weeks to be fully effective
As Fw said may need a combo inhaler with a long acting broncodilator
Like symbocort or advair
Ds needed advair for a while same reason albuterol wasn't touching it
 
Quick dance update....A's large group placed 5th and will be recompeting in the Finals tomorrow evening! Small group is up next!

I have a call in to the Pulmo nurse. Hoping she can be seen soon.
 
Pulmo nurse advised me to take A to the ED so I did. O2 was 98-100, respirations 35-40, pulse 100-130, and she was gasping for air every 20 seconds or so. We were told she had costochondritis and her negative chest x-ray seemed to confirm that for the doc. They gave her a shot of Toradol and advised me to give Ibuprofen (even though I expressed concern about her GI issues). Does this sound like costochondritis? She did have costochondritis several months ago with sharp pain in her lower right rib but no breathing issues. This just seems different and I'm doubting the diagnosis and prescribed treatment. Particularly since the shot had no effect. Also, her rash now covers her entire body and is very itchy. Looks viral to me but the doctor said allergies. Benadryl is having no effect and I have no idea what she'd even be reacting to. Both of her group dances made it to the Finals today and my baby just wants to dance!
 
We happen to be staying about 20 minutes from our children's hospital so we went there. They had complete access to her files.
 
The Pulmo is the one that advised me to take her to the ED. She doesn't know A well though. Only seen her twice. The ED doc's theory is that she is so tender that she takes only shallow breaths then feels the need to gasp. Sounds logical, but her breathing just seems out of control. If prednisone didn't take care of it I'm not sure how ibuprofen will. Her infusion is tomorrow so I'm hoping the nurses there will advise. Meanwhile she's warming up for dance tonight! There is a live feed, so if anyone wants to watch just message me for the link. Starts at 5, Florida time!
 
Has she tried breaking into a paperbag to slow her breathing?
Or whistling ???
Blowing through pursed lips
Drinking water slowly
Vocal cord disfunction can occur mimics asthma attacks
Just as scary but albuterol has no effect
 
No wheezing, no cough, throat feels fine. The breathing relaxes slightly in her sleep but she still has increased respirations. We've tried all sorts of tips and tricks with no results. It's getting to the point that talking is difficult.
 
Does it occur even when hr is normal? When my autonomic dysfunction is acting up and my pulse goes over 110 my breathing changes. I tend to frequently gasp due to a feeling of being SOB because of the tachycardia.

I am also a shallow breather and have had to train myself but it doesn't take away the gasping when my hr is higher. In my case, it is part of the autonomic dysfunction or dysautonomia and also includes chest pain during this time.
 
Toradol and Advil should have helped if it was costochondritis. We've never had that kind of breathing issues and we've had a lot of experience with costochondritis.

It does sound like something else. Hope you can figure it out so she can dance.
 
At A's infusion and her NP just came by to see her. Agreed that her lungs sound clear but wants PFTs when she's done infusing. Also, A has developed lots of redness and swelling behind her ear (not the one that was infected) and there's a concern of mastoiditis. Waiting to hear the game plan for that. The stress is unbelievable and I'm just trying to be strong.
 
The only way to confirm mastoiditis is a head ct ( MRI is not as effective )
Just be prepared
If it's early iv abx for a day or two before oral abx at home
 
Doctor looked and decided it was nothing. I guess it's totally normal to have severe redness and swelling behind your ear. Said if it isn't better in a few months to have it rechecked. Said her breathing was normal and some people just develop odd breathing patterns. He didn't think she needed PFTs. I'm glad we're switching doctors because one would need to be on his or her death bed for him to take action.
 
We have a new Immunologist! Our second opinion doc agreed to take A as a patient and we're working on scheduling her next infusion. Such a relief! I can't tolerate doctors that discourage second opinions.

A is mostly the same but her ear looks a little worse. Waiting until Monday to see if she may need to see the pediatrician.
 
I could throat punch our former Immunologist (thank goodness I can say "former"). Took A to the pediatrician today and she has an ear infection and three infected lymph nodes. Something he could have acknowledged and treated last week but he chose to be a douche because we got a second opinion. Hopefully the antibiotics will help and she'll feel better soon. They are holding her lab results hostage, refusing to release them to the patient portal. This Mom is about to go full ninja on them.
 
Had GI appointment today which went really well. He was satisfied with her weight (5th percentile) and pleased with her height (11th percentile). No real GI issues at this time (YAY!!) so the plan is to keep on keeping on. We have an Immunology appointment with the new doctor in early September so I will raise my real concerns then. A's IgG continues to decline and is almost below the norm range even with infusions. Low IgG leads to infections and inflammation....and here we are.
 
That Doc sounds like a real Jerk!
We fired our first GI doc because her also did not believe in second opinions. We got one anyway and he refused to even consider the second guys reccomendations just kept saying her pain should be better so it must be in her head now.
 

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