Leaving school early again today

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Dizziness & lightheaded again. It seems to be lasting longer when it happens. She was in the nurses office for 20 minutes when the nurse called, and it still hadn't passed even with laying down for that time.

Nurse & I chatted for 10 minutes, and I decided to pick her up - she was still feeling the same way at that point.

Yesterday when it happened, it lasted about 10 minutes. Last week, it would only last 3-5 minutes at a time. I'm definitely going to ask the GI about the B12 & such next week. I just hate that she feels like crap all the time lately. Not really all the time, but it just seems as if we never know when she won't feel good again. She said the other day "yeah, my stomach feels fine right now! But I know it's going to hurt again later..." Such a jaded thing to say for a 10-yo kid.
 
I'm sorry that your daughter isn't well. It is so unfair that our kids have to deal with all these issues!

I hope you are able to get some answers from the GI next week! Good luck! And I hope you're daughter feels well until then!:rosette1:
 
I'm so sorry to hear that this is still plaguing your daughter. :hug:

Good luck with the appointment next week, bet it can't come soon enough!, I hope the GI is able to sort things and your daughter is soon feeling better, bless her...:goodluck:

Dusty. xxx
 
My son gets dizzy when he is dehydrated. Gatorade works best because it has the proper sodium balance. He keeps a water bottle at school too. Hope it makes her feel better.
 
I am sorry that your daughter is having a hard time with dizziness. I know that is not fun. I have myself have had issues with dizziness. One thing that helped was making sure to drink and eat some salty foods.
 
She's out of school today because of it, she started feeling it about 20 minutes after eating breakfast. And normally, she loves school - it's kind of her "escape" (she's a nerd like her Momma! :heart: ) so she really tried to push through it and go anyway, but riding in the car just made her feel worse and worse.
I called the GI this morning & waiting for a call back. At home in bed with lots of water.
Amazing that this disease crept up so suddenly & is turning her into such a different kid...
 
Yes, got a call back, and the GI was a real butthead. Said "if she is dizzy and feels lightheaded, that is her brain or her head. I am a specialist consultant. I deal only with her digestion. Don't call me if it doesn't deal with her intestines or her digestion. Call her regular pediatrician. I am not going to replace her regular pediatrician." *Click.*
Wow.
I was so stunned, I didn't even get to ask him whether her vitamin levels were checked in the past, and whether he could order them checked, or if he could coordinate that with whatever doctor was appropriate. That was what I was trying to ask. I realize he's not the person to call for every ear ache and sniffle. Geez. He was really irritable and defensive.

I texted her Dad and told him how the convo went. Asked him to call, maybe he could do a better job. Honestly, all I wanted was at least the GI to *coordinate* with the regular pediatrician. Let them talk to each other. If I go to the pediatrician and start talking doc-talk about what tests have been run, what I think her symptoms could be tied to, etc, his eyes will glaze over. I know docs don't like it when you talk on their level. I was just hoping they could talk to each other, whichever one is appropriate to order blood stores tests could do so, and we could make some progress on getting her well!
(Dad is retired after 20yrs in the USMC hehe).

He called both doctors. Funny thing is, the moment the GI got on the phone with him, the GI launched into the same defensive spiel with him. From the get-go. But he talked him down, told him to back off the defense and listen, we're not the aggressive parents trying to make him "fix" our daughter for things that may be outside his realm.. but that we don't want her having redundant or uncoordinated care, either. He then gave the example of his dad, who was seeing four different specialists at one time, and when he finally got in front of one doctor who looked at ALL his records, ALL his care, and ALL his medications, realized he was on about eight medications too many, and a lot of his "care" and "specialists" and "meds" was all just to treat side effects and reactions to other medications. We don't want Rosalyn to get lost or caught up in the system like that. And right now, the pediatrician is saying "it's all GI, talk to the GI" and the GI is saying "that's not from GI, see the pediatrician."
So after that, the GI changed his attitude a lot, said he'd called the pediatrician right away, and even called Dad back and said he'd talked to the pediatrician who would be giving one of us a call and letting us know his thoughts & the next steps on her dizziness & weakness.

....8:45 the next morning and still waiting for THAT call, but at least after that complicated, conflict-filled little afternoon, hopefully we made some progress and helped the GI realize we are not the enemy! He must have some PITA helicopter parents to be so defensive & cranky like that!!! :ywow:
 
Wow, it just amazes me how thoughtless and inconsiderate some doctors can be!!! :ymad: I suppose some have dealt with so many patients for so many years that these issues/worries have become routine for them and they've forgotten that these are real children who are sick and real parents who are worried; our children aren't just a file to us and we haven't dealt with these issues for years! I've been lucky so far and haven't had any problems with my son's GI (but, who knows, it's early days yet :eek2:).

So glad the day ended on a better note with the GI! Hope you hear from the pediatrician soon! :)
 
Yes, and I'm also a little surprised that he'd be so narrow-minded to think that issues of the GI couldn't have wide-spread effects on the body. I'd expect a modern doctor to look at the body holistically, not just focus on their 10 inches or so of specialty. As soon as I described how she was feeling to my Mom, she asked if I'd had her B12 checked, bc my little brother dealt with the same symptoms in high school & had to have B12 shots for months because.. surprise!! .. malabsorption due to Crohns..! and I hadn't told her that I was wondering about the B12 to begin with when she said that.
 
It's tough. We've been really fortunate with our GI and docs. The family doc actually proactively calls our GI and the GI will proactively call the surgeon who will proactively send records to the family doc.
That said, it's important to remember that

a) there are other docs. If you're really not happy, maybe it's time to change. You need someone who listens, not just someone who is clinically good. and

b) remember that the enemy is the disease, not the medical people. I'm not saying you should tolerate bad treatment, but I know I tend to get very angry with the medical people and forget that the real issue is the disease. Some things are complex. And some people are annoying. But our energy needs to go to fight the disease.

Hope things go well.
--kevin
 
Oh I so hate when doctors act like that! I am so glad he listened to her Dad and calmed down. Coordination of care is so important. We have had that a few times also for some issues which also ended up being GI related in the end like Caitlyn's erythema nodosum on her skin which I ended up diagnosing thanks to this forum!
 
I think I'm due for a rude awakening some day soon! :lol: I've been spoiled with my GP, whom I've had for 30 years; she begins every appointment in her office, relaxed, asking about my kids, husband, holidays, the weather, etc. before we even get to the medical issue. I've never felt rushed or that I was asking too many questions! (AND, somehow, she's never more than 10-15 minutes behind in her schedule!) Blood, urine, x-rays are all done right at the clinic - it wasn't until I had a pediatrician for my kids that I realized most people have to make a second trip and go to 'labs' to get tests done! :redface: I dread the day she retires! :ywow:

I don't know how common a practice this is but, over the holidays, when my son seemed to be off a bit, I just took him to the local walk-in clinic, briefly explained my concerns and requested specific tests be done. The walk-in doctor was a bit annoyed and not a pleasant person but, regardless, I just kept insisting that I wanted his CRP, sed rate, iron levels, etc. tested. Once I got the results, which were 'off' as I'd suspected, I forwarded these to his GI's office and asked if, based on the results, perhaps, his end of Feb appointment should be moved up - they moved up his appointment to next week. Unfortunately, sometimes you just have to find a way to work around the system. :devil:
 
GI doctors can really be frustrating people!! In the beginning of Brian's journey I would call the GI office if Brian was sick and they would also direct me to the pediatrician (A little more nicely than they did you...but with a "DUH!" kind of voice too! ), but I also would be puzzled that they didn't seem to feel they needed to know...But I would think that if the pediatrician would prescribe something, that would be important for the GI to approve of or not. Can't some medications and illnesses present a problem or complication for crohn's kids? And couldn't it affect the medication they are currently taking for crohn's? I always thought once you have a chronic disease, that specialist doctor should become the FIRST doctor in charge.

Our GI's nurse simply said, we only need to know if he has a fever and he can't get his Humira shot.
 
I agree, Kathy. I would be worried to give Stephen medication prescribed by his GP without his GI giving his okay. I'd like to think that his GI feels the same way???
 
Oh my...that is awful imwood! :hug: Thank goodness he finally saw some sense, it's a shame you just about had to beat it into him though! :frown:

I hope you have had that call by now??

@Tess, we are in a similar situation here. I just ring the GP and tell him what tests I want done and he just does the request no questions asked.

It certainly highlights how different systems are. Here the GP co ordinates care, so they ring the GI and discuss my children's care on a needs be basis. If the kids then see the GI the GI writes a letter back to the GP explaining what he has done and what he wants done until the next consultation. So essentially the GP is the one that all specialists refer back to for ongoing care.

Dusty. xxx

Just saw your post Kathy, the GP rings the GI before before making any adjustments to the kids overall care. Yes, I certainly agree that a specialist should be having input into medication changes!
 
That must be so reassuring Dusty! Knowing that the GP and GI consult and coordinate the care. I haven't had anything come up that's required that sort of coordination but, knowing Stephen's GP, I doubt she would put in that effort. When I had the tests run through the walk-in clinic, I had a copy sent to his GP. To get the results, it made sense to me to follow-up with her instead of the walk-in doctor (who didn't know Stephen and was miserable anyway). Stephen's GP's office told me there was nothing wrong with the results, I didn't believe it so did go for the follow-up with the walk-in doctor and, what do you know, CRP and SED rate were higher, HGB lower! Ugghh! Don't like her but as Stephen will be deciding on a university in a few months, I'm waiting to see where he goes so I can move him to a doctor that will be moderately convenient.
 
It will be a welcome change no doubt!

Just out of curiosity, do you keep a copy of all Stephen's blood results, imaging and correspondence?

Dusty. xxx
 
Sort of... His GI's office is great, so his nurse will send me a copy of all results by email when I request them - so I have the last one or two results. But, I haven't pressed for all the initial tests because when he is transferred to an adult facility (sometime this year), they told me that I will get a complete copy of the file that is transferred with Stephen. As I'm comfortable with their care, I haven't felt the need to get a copy of the initial results for now. (But, I plan on making sure I do have a copy when he moves to a new GI.)
 
Even more annoying - his GP's office told me the results were fine but wouldn't give the actual results over the phone (nor mail nor fax them) and because of her part time hours and distance, I couldn't get Stephen in for a one-on-one for weeks!
 
:thumleft:

Dusty. :)

ETA: Yikes, the thumbs up is for the first post! :lol: You really will be glad to see the ass end of her...:quack:...grrrrrr.
 
Oh absolutely!!!! Was so happy to get Emily transferred to my GP!! Hate the thought of even having to call Stephen's GP!

If he also goes to university in downtown Toronto, I'll be ecstatic to move him to my GP as well!! :luigi:
 
It certainly highlights how different systems are. Here the GP co ordinates care, so they ring the GI and discuss my children's care on a needs be basis. If the kids then see the GI the GI writes a letter back to the GP explaining what he has done and what he wants done until the next consultation. So essentially the GP is the one that all specialists refer back to for ongoing care.

Who are you kidding??? Neither the GP nor the GI makes a move until they consult you!! We all know who coordinates Matt and Sarah's care!!
 
Over here the GP coordinates care, whenever I see a specialist the results get forwarded to my GP, and they always take my Crohn's into consideration when prescribing meds. However, things do sometimes get lost in the system (eg when on weekly aza blood tests, they didn't pick up on anaemia until I had an actual check up 3 months in) so I try to keep my own records, and if I want something in particular (eg a certain vit level) I ask my GP for it.
 
Imwood,
I am so sorry you are going through all of this. We had the same issue with our GI, but after he (and his nurse) got to know us, we have a much better relationship. Hopefully the same will happen for you.
My DS was having dizzy spells as well. They usually occured when he has not been drinking water or eating much. What has helped him the most is carrying a water bottle with him in all his classes and visiting the nurse twice a day for a snack. (Protein drinks, smoothies, yogurt, etc.)


Who are you kidding??? Neither the GP nor the GI makes a move until they consult you!! We all know who coordinates Matt and Sarah's care!!

That made me LOL, literally.



Take care,
Vicky
 
Updating to say, the dizziness & lightheadedness has been reduced greatly by making sure she has at least two glasses of pedialyte or gatorade each day. Hasn't even come back after our serious sickness w campy.

I think she was just in a constant state of dehydration from rounds of constipation then diarrhea & not feeling hungry.
:ybiggrin: fixed it!
 
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