We found a new ped! Trying to get off on the right foot...

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Momto2girls

Momto2girls

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May 18, 2012
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OK I interviewed a new ped yesterday and we're going with her. She seems smart and proactive but also really approachable and down to earth. She said she has several patients that she helps to coordinate the different specialists and I think she'll do great at managing our case! :thumright:

But, I do not have the best history with peds. I would like for this relationship to work out -- I really don't want to have to switch again. I am taking Gracie to see her on Feb. 1. She wants to examine her -- she needs a physical within 30 days of her MRE scheduled March 1. And she wants to go over more about her and look over her chart.

Some of the things I am wondering about now:
Her growth -- I picked up her old charts yesterday, so I have all of the numbers now, and it turns out she's gained 1.5 pounds over the past 1.5 years. She's grown an inch in the past 11 months. In weight she's gone from 90th percentile to around 60th. In height from 60th to 30th percentile.

Anemia -- could she be deficient? Do we need to do bloodwork AGAIN?

Diet -- I am so confused now. What should we be focusing on from gluten free to dairy to other potential allergies and B12 and iron and everything in between.

MRE -- should we scope or should we do the MRE or should we skip it?

Sulfasalazine -- should we start it? Skip it? Scope first?

Air hunger -- What does that mean?

So, as you can see I get to where there are too many things going on for any doctor to help me with it. What do you think I should focus on? How can I best try to get along with her? What can I expect?
 
I'm glad you found someone you feel comfortable with! I would take a list of all your questions and concerns. Thats what I did when we went to our new ped. I think I was telling you, Devynn started on sulfasalazine in Nov and is doing very well. I know all meds work different for different people etc. But she really is doing well. She had some diarrheah but I think it was because she had some milk. She has not had milk since October, and really wanted to have a drink of milk.
Has she ever had a scope (upper and lower)? If not, I would ask for one. From what I have been told, they are the best way to diagnose. Devynn has had upper and lower scopes, MRE, Barium swallows, ultrasounds, etc. Her scopes allowed them to do biopsies and that is where they found the Ulcerative Colitis. Her MRE looked great from what I am told.
Good luck with her appt!
 
Thanks so much! She did have a scope in April -- it showed non-sepcific inflammation so no dx. But they did start her on sulfasalazine at the time and same as your daughter -- she did GREAT on it! We were thrilled!! They took it away though b/c of no dx they wanted to see how she would do without it. Well, she's been going downhill every since. So, they did re-prescribe it -- and we have it here! But, the allergist had us trying one thing, and we were finishing up a gluten-free trial and I didn't want to make too many changes at once, ya know?

Now that we have a new ped I am not sure if we should wait on the sulfasalazine or go ahead and get started?

On another note, she's supposed to be going to gymnastics this morning, and she's saying she doesn't want to b/c they make her run around the gym at the start for a warm-up and that makes her out of breath. Sooo, I am going to give the allergist a little ring! Hello!
 
Aww I hate when they are feeling crappy :( Well I hope the new ped is awesome, and the sulfasalazine works! Did the allergist tell you NOT to start it? If not, I would go ahead and start. When we first got it, the ped had us trying milk free for 5 weeks AND probiotics. I didn't want to do it all at once, because I wanted to know if something was working, what exactly it was. So she told us to hold off on the sulfasalazine. We did probiotics for a month and didn't see any real improvement. Finished milk free and then started the sulfasalazine. We noticed an improvement within a week.
Good luck! I hope she feels better soon.
 
Thanks, Devynsmom -- I am so ready to start the sulfasalazine -- I think we'll do that tomorrow.

We are off to the allergist -- he wants to do a lung function test -- keeping my fingers crossed it is fine and just a fluke. Thanks!!
 
If she is complaining when she is running
Make sure she is running just prior to the test could be exercise induced
 
So, it does look like it is asthma. :( I didn't have her run beforehand (I didn't see this until after), but they started with the lung function test (the blowing out the candles on the screen). Then the nurse said she'd get the nurse practitioner (that's who our appt was with b/c you can't get into the allergist that quickly. So the nurse practitioner came in with another nurse and another hand-held type breathing test. Then the nurse practitioner said she needed to go talk to the doctor. When she came back she had all of the meds with her. They have a maintenance inhaler with a spacer for twice per day, and a rescue inhaler for before gymnastics, or anytime she has trouble. We are scheduled to go back in two weeks. They said if the meds help then they'll officially dx asthma. I guess b/c she's young it is hard to know if the tests are exactly accurate so trying the meds will help them confirm for sure.

She asked about pneumonias, which she has had one -- and was on a home nebulizer, and of course her eczema is a asthma thing, too. It sounds like they are pretty sure that's it.
 
((((hugs)))) I'm sorry :( My 18 year old son was diagnosed with Chronic asthma when he was young. He was on steroids, puffers, a home nebulizer for years. He ended up in emerg a few times a year with pneumonia. He has not had to use his inhalers in years, he has pretty much outgrown it. My oldest daughters were also diagnosed as young children (not chronic) and they outgrew it as well. Good luck! The inhalers will help her a lot.
 
I'm sorry it's looking like asthma :(
At least now you know tho, and hopefully the meds work.
My youngest son has had asthma since he was about a year and a half old.
He is 14 now and has "sort of" out grown it. He only seems to need an inhaler if he gets an upper respiratory infection or bad allergies.
He plays basketball, and runs, and plays football and all without inhalers most of the time; so maybe your girl will grow out of it at some point as well. A lot of kids do :)

big hugs !
and good luck with the new Ped doc ~ take that list with you !
 
My crohnie was dx with asthma at about 7 years.

She doesn't use she reliefer medication much anymore.

Sarah is a competitive swimmer. She main problems with her asthma now is when she has cold, flu etc or quick changes in air temperature.

Good luck!!
 
Thanks everyone! I am sort of sad for her that she'll have to do yet another medication, but honestly she never lets anything slow her down! I am sure she will get used to it. You know, Gracie took a lot of swimming over the summer and into the fall -- and now that I think back her coach mentioned trying to learn to breath more evenly and not gasping for air so much. Ummmm, maybe this was why?

I am so glad to hear so many kids outgrow it. Now I have something else to PRAY for! (We pray she'll outgrow her severe tree nut allergy, too).

Now I can't decide -- start back on the sulfasalazine tomorrow (3x per day) while also starting on the asthma meds (2x per day)? Or wait? Maybe it is best to just tackle it all at once.
 
Just do it all at once.
Both kids have had asthma since they were tiny.
Both still take daily maintence meds plus rescue meds ( albuterol)
Make sure the doc have you an asthma action plan
It should tell you when to call
What meds to give in an emergency how often etc when to go to the ER...
Plus what to do when she is sick with a cold ( meds change)
We have found the calmer the Ibd the calmer the asthma and vice versa
Both kids play sports etc.... They do need to pre treat with albuterol prior to swimming per our allergist but otherwise only concerns when sick .
They both have their share of ER visits and pred but you will ge a norm

http://www.healthychildcare.org/pdf/MedAdmin/AR_AsthmaAction0-5.pdf
http://www.health.state.mn.us/divs/hpcd/cdee/asthma/AAP-nonpro.html
 
Thanks, MLP. I am sure you're right -- best to just jump right in.

So I am wondering about something else: I just noticed she's got really big patches of eczema right on her bum. This is new. Just a flukey thing? That doesn't mean anything, right?
 
Ezcema food allergies and asthma are the atopic march or triad since kids start with ezcema move on or add food allergies then later come into asthma .
A few overachievers like DS do it all at once :)
A lot of atopic kids also have auto immune disorders since their immune system response is already heightened .
 
Sorry to hear about the dx.:frown:
Grace started asthma at one, oh sorry I mean pediatric wheezing when she was one. The allergist said she was to young to have asthma:yfrown: and just said for now he'll call it that. We going to NEW allergist next week.:thumleft: Her asthma flares with illness and exercises.

HUGS
 
Ok, well she's always had eczema -- we used to have to give her soaking baths with wet wraps every night. She's not that bad anymore but has spots that never go away. But right on her bum is a new spot and these are very large areas.
 
Momto2girls said:
Now I can't decide -- start back on the sulfasalazine tomorrow (3x per day) while also starting on the asthma meds (2x per day)? Or wait? Maybe it is best to just tackle it all at once.
Click to expand...

I'm going to risk showing complete ignorance here but, is there any possible connection with asthma and the ongoing intestinal inflammation? Did the allergist have an opinion about starting the sulfasalazine?
 
Sorry to hear about the asthma, at least it's diagnosed now and she will hopefully feel better once the meds kick in. Hope she starts to feel better once you start the other meds as well! I had an inhaler when I was younger, but outgrew it in my teens.
 
Dexky said:
I'm going to risk showing complete ignorance here but, is there any possible connection with asthma and the ongoing intestinal inflammation? Did the allergist have an opinion about starting the sulfasalazine?
Click to expand...

Wow, that is so super interesting. I would be curious to know? When they explained yesterday that asthma is inflammation I thought -- well, is there anywhere she's not inflammed? Hmmm...so maybe if we treat the asthma then we'll reduce the other? I did start both meds last night -- new chart for meds, with stickers and everything!

I am hoping we'll see a new kiddo very soon!
 
Momto2girls said:
Wow, that is so super interesting. I would be curious to know? When they explained yesterday that asthma is inflammation I thought -- well, is there anywhere she's not inflammed? Hmmm...so maybe if we treat the asthma then we'll reduce the other? I did start both meds last night -- new chart for meds, with stickers and everything!

I am hoping we'll see a new kiddo very soon!
Click to expand...

Good luck! Thanks, now I'm all chuffed! Dusty???
 
So interestingly, we aren't sure the asthma meds are helping. In fact, we think that they aren't. Now, the allergist said they wanted to confirm it is asthma by whether or not the meds help. If they don't, then it is likely something else. One of the things she said was reflux. Well, we already know she has gastritis in her stomach with h. pylori -- and she was on zantac back at the time of her scope. She went off in August, but I am wondering, could reflux or GERD or whatever be the cause of the breathing problems?
 
Depends on the meds
Albuterol should help right away after 20 minutes but she would still flare prior unless you pre treat before any exercise ( running playing etc...)
Flovent or pulmocort take 4-6 weeks to get the inflammation down in the lungs
So you would expect to see less of a need for albuterol by that point.
 
Yes, reflux can show up as breathing symptoms.

Have you been to see the GI about this issue or contacted their office?

The allergist and GI need to be talking to each other.

Like MLP says the albuterol is rescue medicine.

IF, IF, IF it is being used correctly then it should alleviate her breathing symptoms almost immediately because it causes the bronchial muscles to relax and the tubes expand/open up allowing air to pass where before those tubes were closing shut due to either inflammation or muscle contraction. At least that's the way my son's pulmonologist explained things to me.

Did they give you a spacer to use when she does the albuterol? Did they make you practice while there in the office so they could see if you were doing it right? Did they give you a peak flow meter (she is a little young for that Iguess) and show you how to use it?

If you're at all uncertain about whether you're doing it right, I would go ask the allergist office to let you come see the nurse and get a coaching session so there's no doubt on that front. And get really clear instructions on how many puffs to use in a given period of time. If you don't use enough then it won't work well. Also ask them how long the effects should last so if she starts having problems again in 20 minutes or whatever you will know whether that's to be expected or not.

Asthma can kill. It can kill fast, in a few minutes time, if the circumstances are "right". So make sure they know you understand that and expect them to take it seriously when you ask for help learning how to use the inhaler, etc.

We don't want it to kill anybody but we especially don't want it to be your little one.

She could have BOTH things going on which is why the docs need to coordinate their care.

I would work on the assumption she may also have refulx and take a couple of practical measures to treat it.

Raise the head of her bed 6"
Stop feeding acidic things like tomatoes cooked/raw, oranges, lemonade, chocolate, etc
Don't feed her a bunch of food before she goes to bed
 
I think I need a tip toe foot when it comes to doctors! :)

OK, this is all really great info! We do have a spacer -- I am not worried about not doing it right as it all seems to be working properly. I will look more carefully at the exact meds when we get home. The allergist and GI talking to each other is almost hilarious! I haven't found any doctor wanting to be helpful like that AT ALL!?

OK more later! Thanks!
 
Seriously, if you like this doctor and think you can trust her then let her take the reins and run the show. With supervision of course. LOL

Make a separate appointment with her - tell the office that it needs to be a long appointment, at least 30 minutes if possible. Scheduled before she does the physical exam by a couple days.

Take her a written list of your concerns in order of priority. Don't put down or tell her all your "what about's", just give her a bulleted list of symptoms or signs that concern you.

Briefly, in bullet fashion, outline your daughter's health history with dates or ages including whether your preg was normal, delivery normal, birth weight and APGARs if you know them. If she had no other health problems at a given birthday then it would be really simple.

For example:

*normal pregnancy, full term
*vag del, no problems, epidural
*APGARS 8 and 10
*age 2 weight 20 # height 26" no known health problems

Only list pretty major issues and if possible the month/year and or age/month.

* age 3 yr to 3yr 6 mo 8 ear infections

*age 3 yr 6 mo ear tubes

It's OK to tell her that doctor's offices make you anxious and you hope she understands. This may help you feel less anxious, her understanding and patient and you won't have to say anything bad or specific about previous doctors and what they did to make you anxious.

Give her time to review the list, ask questions if she has them and then see what she says. She may say - I need to look this over, review her records (which you have hopefully been able to get transferred) and examine her. Then we can talk in more detail about your concerns.

Or she may talk things over with you as time permits.

You want to know how she ranks those concerns in terms of seriousness - or if she even sees any of them as serious.

You want to know what she thinks is the best strategy for figuring out what's going on with the most serious problems.

I wouldnt' really expect her to come up with or commit to a strategy for investigating your concerns until she's actually examined your daughter.
 
Last edited:
I can't really add anything to fab advice you have already been given Mum.

She said she has several patients that she helps to coordinate the different specialists
Click to expand...

I too would take the questions along and discuss each with her. If she is true to her word then she can coordinate the care required to oversee each issue. :) Good Luck!

Dusty. :heart:
 
Here's praying that your visit this week will go well with your pediatrician, that you will feel a good connection and find her knowledgeable and trustworthy, and caring. Don't be afraid to bring your list of questions, but I would also suggest that you list them from most important to you to the least important in case you run out of time and she wants to schedule another appt with you to finish the list, then you will have covered the ones that are most important before that happens.

Hugs to you and I hope the meds are all starting to work...
 
Thanks, Patricia. That's a fantastic suggestion. Luckily when I had my meet and greet with her we got straight to the point -- we discussed a lot about Gracie, so it sounds like we probably did the initial meeting you suggest at that time. She even asked which GI and which allergist and she even knew that the GI we switched to is awful and was glad we were back to the original GI. She was really on top of it all. I did leave the charts that day -- and so she'll have plenty of time to look them over (and said she would). So I take Gracie on Friday -- and I'll do the outline you suggested -- with the dates so she has a nice overall view of what's going on.

Now, the possible asthma is new since our initial meeting, but that's OK -- I can get that sent over from the allergist -- and she already said she has access to all of the files at Children's Mercy. I will work on my timeline/outline now...thanks again!
 
Momto2girls said:
Thanks, Patricia. That's a fantastic suggestion. Luckily when I had my meet and greet with her we got straight to the point -- we discussed a lot about Gracie, so it sounds like we probably did the initial meeting you suggest at that time. She even asked which GI and which allergist and she even knew that the GI we switched to is awful and was glad we were back to the original GI. She was really on top of it all. I did leave the charts that day -- and so she'll have plenty of time to look them over (and said she would). So I take Gracie on Friday -- and I'll do the outline you suggested -- with the dates so she has a nice overall view of what's going on.

Now, the possible asthma is new since our initial meeting, but that's OK -- I can get that sent over from the allergist -- and she already said she has access to all of the files at Children's Mercy. I will work on my timeline/outline now...thanks again!
Click to expand...

That is great news. Doesn't it feel good knowing your daughter is in good hands? I like the link on the recently bumped links for the notebook. I think I'll print one out myself...
 

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