# Our new GI



## upsetmom (May 27, 2015)

Finally got to see our new GI today.:thumleft:

Appointment went good, l was quite impressed with the GI. She didn't like how M has never reached remission since diagnosis. She spoke about putting M on steroids that don't effect the bones...she did tell me the name but l can't remember. A lot was discussed but till she's done her own tests we don't know what's going to happen next. Blood test were ordered and a FC. Now this is interesting...FC results get done in 30 mins by the IBD nurse. I've read of people waiting 3 weeks for results. Now all we need is a stool sample from M.


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## SupportiveMom (May 27, 2015)

Are you in a hospital setting with the GI? I noticed the difference when we moved to the hospital GI. Tests that used to have to be sent away are done in house (at no extra cost) and tests (except biopsies that have to wait) are done same day. Glad you could see results quickly. 

When you know the name of the steroid Id love to know it & if it works as well. I hate prednisone. Hope this GI helps you find remission soon!


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## Catherine (May 27, 2015)

The hospital must be doing it own testing.  It is only done a few hospitals and they usual wait until they have a number of tests to process.

The test usually takes 10-14 days when done via one of the private labs


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## crohnsinct (May 27, 2015)

There is a point of service quick test on the market (Probably similar to the at home test that we are all coveting) but not a lot of docs use it. Just as easy to send the sample out and wait.  Unless there is an urgent need in which case they probably don't need FC to tell them something is wrong.   Probably similar to the at home test that we are all coveting.  

Sounds like the appointment went well.  Hope this GI is a keeper and she gets your girl back on track!


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## Maya142 (May 27, 2015)

Is the steroid something like Entocort? That generally has fewer side effects than prednisone-- in fact, when my daughter was on it, she had no side effects at all. 

So glad she finally has a good GI!! Hope M starts feeling better SOON.


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## upsetmom (May 27, 2015)

Supportivemum ...It is in a hospital setting. 

It started with a B. Doing a bit of research l think its called Budesonide or Entocort as Maya mentioned.


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## kimmidwife (May 27, 2015)

Upsetmom,
Entocort is a steroid that focuses on working in the gut. It is true it has less side effects then prednisone. The biggest issue with it is it does not always work for people with Crohn's disease. We have tried it multiple times on and off throughout the years. Sometimes it has worked and sometimes not.


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## Catherine (May 27, 2015)

Make sure you find out how much budesonide is going to cost if you take this path.

It could be very costly is you have to fill the script yourself.  When we last checked approx 6-12 months ago it was $200 per script.  I believe for 90 Tablets.  At that time it was a private script and not covered by PBS.


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## Mr chicken (May 27, 2015)

Encore only covers certain sections of the GI tract so if damage is else where it doesn't tend work
Which is why it works for some folks but not others

Hope it helps and they get a long term plan quickly .


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## upsetmom (Jun 17, 2015)

Well so much for our new GI. 
After M's blood tests and FC l was told if anything was abnormal l would get notified straight away.  I never heard from them so l assumed everything was normal. I've been having my own issues and with all the running around l never called up to see how everything was. M has still been getting a lot of pain and bleeding so today l decided to call the nurse. M's blood tests are all good but her FC is 1118...normal is under 100. I don't know why l was never contacted. So obviously she still has a lot of inflammation. She told me she would send out an appointment for 5th August..:yfaint:...in the meantime if M gets worse l'm told to take her to the ER.


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## Sascot (Jun 17, 2015)

Wow, that is frustrating. With a FC that high I would have assumed they would see her straight away. August? Maybe they can put M on a cancellation list to be seen sooner. Sorry you're having to wait and worry


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## Maya142 (Jun 17, 2015)

Wow, that's awful. Poor M! I hope they can get her in sooner - this has been going on much too long :ghug:

Did she at least prescribe the Entocort so M could have some relief while she is waiting?


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## Mr chicken (Jun 17, 2015)

Well that stinks
Can you call and ask specifically to the GI for justification on the lack of a plan when damage is being done potentially ???


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## upsetmom (Jun 17, 2015)

Nothing was prescribed or suggested...only the ER. She told me there was a long wait to see the GI.... I think the only way to get M to see the GI sooner is through our GP, she usually starts making phone calls and faxing letters.


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## crohnsinct (Jun 17, 2015)

Agree with everyone!  With symptoms, a kid who has never been in remission and an FC that high she needs a plan!  So you haven't even gotten the script for the Entocort (Budesonide)?  At a minimum I would be pushing for that!


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## SupportiveMom (Jun 17, 2015)

When we switched from a GI in an office to the hospital setting I was surprised how much more advocating I had to do. I figured they could see the severity, they had all the reports, they were told. My D should be one of the top priorities just like at the GI office.

I learned through other parents we are just one of many priorities and its harder to get your voice heard. It also took me 6 months to find the doc's angle on what makes her react. Not every doc worries about the blood work when they are used to a typically higher level. Its like hospital GIs have a higher threshold before action. I had to find my voice again like I did when getting D diagnosed. Even then it is me chasing & following up all while trying not to piss off the nurses. If you piss off the nurses good luck getting anything!


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## pdx (Jun 17, 2015)

I'm sorry to hear this--so frustrating!


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## DanceMom (Jun 17, 2015)

That seems like an awfully long time to wait when she is obviously not well.  I never like using the ER as Plan A.  Maybe you could ask to speak to the doctor directly and ask why he thinks that is acceptable.


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## Catherine (Jun 18, 2015)

Upsetmom, they be able to start a treatment without appointment.

Good luck with your GP.

Also for your information Sarah's second course of steroids was started by the ER doctor.  When I rang the GI office, I was told that the wait for appointment was over month until I said the ER doctor has said she need to be seen in a week.  They found appointment two days later.

I always ring to follow up results and request a copy.


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## upsetmom (Jun 18, 2015)

I'm trying to avoid the ER. We can't see our GP till Monday and M still has bleeding and now shes also got diarrhea. I don't know how much bleeding she has...she tells me its around the stool. I just hope things don't get worse over the weekend.


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## kimmidwife (Jun 18, 2015)

Very sorry to hear this! This is very frustrating. I scent believe they never called you with the requests. I suggest you call back tomorrow and ask to speak with the office manager. Tell the office manager how upset you were that you were not informed of these abnormal results and that if you had not called they never would have told you and that now they are. Ot even giving you an appt until August.
Remember the old saying the squeaky wheel!


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## awmom (Jun 19, 2015)

That is way too long to wait.  A lot of good it does to get the test done quickly if they are not going to treat quickly! I agree that at least they should give her the entocort or let you talk to a nutritionist to consider a liquid diet.  My son was put on Entocort when he was first diagnosed and I think it helped at first. I Believe it is most effective for the last part of the small intestine which is where he had issues.  You may also ask to be put on a cancellation list.  I once called our gi (also part of a hospital and very busy)  to check for last minute cancellations on a daily basis for three weeks straight!  The appointment lady said I could call three time a day if I wanted!  i do hope you get an appointment soon and that she does better this weekend.


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## upsetmom (Jun 22, 2015)

Scopes are booked for the 15th July thanks to our GP.


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## Mr chicken (Jun 22, 2015)

Yippee
Good luck


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## Tesscorm (Jun 22, 2015)

Glad to hear!!  Hugs... :ghug:


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## Maya142 (Jun 22, 2015)

Glad you got an earlier date :ghug:


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## Mehita (Jun 22, 2015)

Thank goodness! Glad you were able to get in sooner.


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## kimmidwife (Jun 25, 2015)

Good news! Good luck!


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## upsetmom (Jul 13, 2015)

This is ridiculous, M has her prep tomorrow and we were given no instructions on what time to take the prep. When l went to pick it up from the hospital the only thing they told me was she was to take the tablets at 10am. So now we are going to follow the instructions on the box which says take it at 1pm,                                        5pm an 9pm...l hope we're doing the right thing.


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## SupportiveMom (Jul 13, 2015)

That is crazy. I would do more prep than not enough. Nothing worse than getting there & they say 'you should have done...." & "she will have to wait because she isn't ready yet". Smart mama. Thank goodness for box instructions. 

Have you tried calling the GI's office again? The fact they gave you no prep instructions might have been an oversight thinking one told you versus another. They should be called on it so it is less likely to happen again. (one would hope)


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## upsetmom (Jul 13, 2015)

I think the reason we never got any instructions is l asked for a different prep that they don't usually use. I asked for the picoprep because it's only one glass compared to the 2 litres of the other prep...l knew M couldn't handle drinking 2 litres.  

From what l remember soft drinks are allowed as long as they're not red, so lemon lime and bitter drinks are OK?
I hope so because l have a fridge full.:ysmile:


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## Catherine (Jul 13, 2015)

Clear fluids are allowed.  Avoid red, orange, blue and purple.


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## awmom (Jul 13, 2015)

What kind of tablets are they?  I have never heard of a bowel prep composed of just pills in the am?  I would definitely call the GI's office and get clarification.  Wishing you all the luck with the prep and the results.


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## Tesscorm (Jul 13, 2015)

Good luck!  I hope both the prep and scope goes well! :ghug:


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## upsetmom (Jul 13, 2015)

The tablets were called Bisacodyl. 
I called the nurse and was told M needs to drink the prep at 5pm, 8pm and 6am.


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## pdx (Jul 13, 2015)

Hope the prep isn't too bad, and that the scope gives you some answers (and pushes your doctor to make some decisions about treatment soon!)


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## upsetmom (Jul 15, 2015)

After the scopes the Dr came to talk to us and said M's scopes aren't too bad. She said there was a lot of inflammation on the right side but the ulcers were artificial and not deep. She said she didn't want to put M on steroids or change her medication for now. First she tells me the scopes aren't bad then she says lots of inflammation but nothing to worry about...l'm so confused. 
We have a follow up in a few weeks.


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## crohnsinct (Jul 15, 2015)

Are they going to image the small bowel or have they already done that recently?


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## Catherine (Jul 15, 2015)

Is the inflammation less than the previous scope?

Did they do a faecal calprotectin?


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## pdx (Jul 15, 2015)

I would think that with a FC over 1000, and inflammation on scopes, your doctor would be thinking about some change in treatment, or at least ordering small bowel imaging.  That said, I think it's hard for a doctors to come out of a scope and instantly know what they want to do.  I'm glad that you have a followup visit scheduled, and hopefully your doctor will suggest a change at that visit, or at least more imaging.


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## upsetmom (Jul 15, 2015)

The last MRE was done about a year ago. I don't know if the DR has a plans to do another one.

M has had inflammation on all her scopes. Different Dr doing it this time so l don't know if its any better. Last FC was done a few moths ago and it was 1180. The Dr did say there was inflammation throughout her whole bowel, so there's no change there. It doesn't make sense to me, if there's inflammation and M is getting a lot of pain why wouldn't they try something different.:confused2:

We were also told to  have a follow up with her old GI, but l have no plans to go back there again.


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## kimmidwife (Jul 15, 2015)

I agree that something does not sound right here. They need to change her meds if she is still having lots of inflammation and an FC that high. Can you get another opinion?


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## Maya142 (Jul 15, 2015)

Seems really ridiculous that they wouldn't try something new. Your poor girl!!! I agree you need a second opinion if you can get one. 1180 is quite high for a FC, our GI was worried when my daughter's was in the 400s.

Sending hugs!!


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## Tesscorm (Jul 15, 2015)

When is the follow-up apptmt?  Certainly ask why her GI feels that no change in treatment is necessary!  I would ask why the current treatment would work now when it hasn't in the past.  And, if staying with same treatment, how long before deciding that current treatment is not working.

:ghug:


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## Catherine (Jul 16, 2015)

We need DustyKat.  I don't understand the public system as we have always used the private system.

We increased medication after scope showed a few pin size spots.

Your DD faecal calprotecton is high, she is having symptoms.  THEY NEED TO DO SOMETHING.

Does she have a health care card?


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## upsetmom (Jul 16, 2015)

Our follow up appointment is on the 5th August and l'll be asking heaps of questions. 

I don't know if getting a second opinion is an option, we've just changed GI's. I'll have to talk to my GP and see what she recommends. 

M does have a healthcare card but from what l understand most private practices still charge full price even with a card.


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## Catherine (Jul 16, 2015)

Our GI practices has two rates.  The healthcard  rate is cheaper.

I think it was $80 instead of $130.  Although not fully bulk billed, the out pocket was much less.


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## DustyKat (Jul 17, 2015)

:ghug::ghug::ghug: 

What a frustrating situation you have found yourselves in!  

No, it doesn’t make sense upsetmom given that best practice would dictate that the end point is a deep and stable remission which naturally means the elimination of inflammation. For the life of me I cannot understand why this would not be what a GI strives for?? 
You may recall that Matt has just been through this and with what I would venture to say would be less symptoms than your lass, and the same maintenance meds (Imuran and Pentasa), it prompted a switch up of meds. I would add here that the GI is twitchy with Matt due the severe presentation of his disease at the outset but to me this still doesn’t negate the end goal for everyone…remission. So I would certainly be asking…Just what are you aiming for by keeping the same treatment regimen when it isn’t doing what it is supposed to, keeping inflammation at bay? 

The health systems: 

Public. *Anything* done through this system, that is within the confines of the hospital campus either as in or outpatient, and most short term community services, are fully funded by the medicare system. If in the public system you declare your private health status you may incur costs from the visiting doctors that attend to you that you will need to claim back from your health insurer. 
Private Hospital - Speaks for itself. You don’t have to be privately insured to be an inpatient but you then incur the full cost of your stay. The out of pocket expenses that are attracted by an inpatient vary depending on what coverage you have taken out. 
Seeing a doctor or any service outside of the hospital system will incur an out of pocket fee but most will attract a Medicare rebate. Who bulk bills varies greatly and who they extend it to also varies greatly. In the vast majority of cases pensioners and health care card holders will be bulk billed by GP’s, imaging that does extend to more timely and complex things like MRI’s. Most pathology is covered by Medicare so all Australians are bulk billed, but we all know that FC’s aren’t!. 
The exception to extending bulk billing to selected patients are specialists, remember, once you leave the hospital setting *all* health services (including your GP) are private practices and so they are free to do and charge as they see fit. Everyone will get a Medicare rebate of some description but unless you are a gold card DVA (Department of Veteran’s Affairs) holder the vast majority of specialists will not bulk bill. Having said all that my kids GI bulk bills all of his IBD patients! To say I was shocked would be an understatement! :lol: 
The other thing to remember with specialists is referrals. A referral normally lasts 12 months. You will be charged the full consultation amount on your first visit of a new referral but any subsequent visits within that 12 month period should drop to at least half of that initial rate. In the case of having a chronic condition suss out if the GI accepts indefinite referrals and if so have your GP do one as that eliminates the cycle of a higher fee every 12 months. For those that are seeing a paediatrician bear in mind that if they are doing the referrals to the GI then a specialist to specialist referral only lasts 3 months and you don’t want to fall into the higher fee with a new referral trap every 3 months!
Dusty. xxx


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## Catherine (Jul 18, 2015)

Victoria maybe slightly differ from NSW but we have never had to paid the new patient fee a repeat referral.  Including for the child who had a five year gap between visits.


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## upsetmom (Aug 5, 2015)

The biopsies show M has active inflammation throughout the whole bowel. She said it's obvious that the Imuran and Pentasa are doing nothing so its time to move on.  She gave M an option to do Humira or Remicade. M chose Remicade as she doesn't have to do the injections herself.  Now we have to wait for approval through medicare which takes about 3 weeks. M has had on going inflammation since diagnosis so l'm glad something is finally being done.
l think l like this GI after all.:thumright:


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## Maya142 (Aug 5, 2015)

I'm SO glad this GI is doing something!! Hope Remicade works wonders for M :ghug:


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## DustyKat (Aug 5, 2015)

Hallebloodylujah! 

Hate that it has come to this but happy that finally something is being done for your girl! I hope the Remicade works wonderfully well and your lass will start feeling the best she has felt in a very long time, bless her. :ghug: 

Dusty. xxx


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## Mr chicken (Aug 5, 2015)

So very happy for you and her .
Hope remicade does its magic and you don't even recognize your kiddo soon.


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## Farmwife (Aug 5, 2015)

Finally!!!!!!! I hope it works it's magic soon!

How are you doing?


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## awmom (Aug 5, 2015)

So glad a new plan is in place. Waiting for results, appointments, can so difficult and exhausting........I hope the remi works well and fast!!!!


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## upsetmom (Aug 5, 2015)

Thanks everyone. I'm happy something's finally being done but for some reason l'm scared. 

M was told she still has to take Imuran and Pentasa for at least 6 months after starting Remicade. Does that sound right? I have a feeling once she starts remicade she'll start skipping her tablets.

FW, I still avoid sitting down for too long as it causes pain, other than that l feel good.


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## Maya142 (Aug 5, 2015)

There is some research that shows that being on an immunomodulator (6MP, MTX or Imuran usually) with Remicade for the first six months can prevent antibody formation. Tell M that if she takes her Imuran, the Remicade might work for longer -- that should convince her (hopefully)!

Some GI's discontinue the immunomodulator after 6 months, some continue it and some don't use them at all! It really varies. But it does seem to be accepted that they do decrease the likelihood of antibody formation.

Hope M responds to Remicade quickly!


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## Mr chicken (Aug 5, 2015)

Yep Ds stopped his mtx when he started remicade 
He had a reaction at infusion #7 and #8
So he had to stop remicade
That might convince her to keep taking the pills
Since Ds wishes he still had remicade - humira hurts


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## DustyKat (Aug 5, 2015)

Matt started Humira close to 6 weeks ago and he remains on Imuran and Pentasa. I asked the GI about his other meds before commencing the biologic and his view is to keep him on them for another 2 years. 

Dusty. xxx


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## kimmidwife (Aug 6, 2015)

Glad to hear there is finally a plan in place. I too would try to convince her to stay on them if it helps reduce the risk of antibody formation. I really wish Caitlyn could have continued on remicade and she wasn't allergic to it. It really gives so many kids good results from what I have seen.


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## awmom (Aug 7, 2015)

I would do as the doc says.  When I took N to Boston Children's for a second opinion, the GI also said to do mtx with his Remicade.  His GI in Houston did not seem to think it was necessary and now I think the remi might be loosing effectiveness.


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## crohnsinct (Aug 7, 2015)

O is on mtx with her Remicade.  We added it at the one year mark.  Lots of studies and presentations posted around these parts about how effective the immunomodulators are with keeping antibodies at bay and increasing longevity of the effectiveness of biologics. 

Here is one

http://www.ncbi.nlm.nih.gov/pubmed/25911120?dopt=Abstract


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## upsetmom (Aug 19, 2015)

We have a bit of a delay with sending the papers to get approved for remicade as M needs to have been on steroids for 6 weeks to get approved. Also M has never had the chickenpox so she needs to 2 vaccinations. First one's done, next is due next month. So if all goes to plan she can start remicade around the 10th October. 

M is getting a lot of pain every few days on the left side under her ribs, this has been going on for over a year. So many tests and still no answers to why the pain is there. Gi said very unlikely to be crohn's related as it's not occurring after food. So she needs to have an upper ultrasound again tomorrow.


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## my little penguin (Aug 19, 2015)

Hope they figure things out for her soon


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## Maya142 (Aug 19, 2015)

Poor M, hope you can get things sorted out SOON :ghug:


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## DustyKat (Aug 19, 2015)

:ghug::ghug::ghug: 

I’m sorry I don’t recall but has M never been on steroids before? 

Thinking of you both. :heart:

Dusty. xxx


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## pdx (Aug 19, 2015)

I'm sorry that you have to wait so long on the Remicade, and I hope that the ultrasound gives you some answers.


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## kimmidwife (Aug 19, 2015)

Please let us know how it goes. Fingers crossed for answers.


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## awmom (Aug 19, 2015)

The waiting is tough but hopefully will go fast.  Is this her second ultrasound?  Do you know what they're looking for?


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## upsetmom (Aug 20, 2015)

Dusty, M has only been on steroids when she was first diagnosed and it was only for a few weeks. The old GI always put her on Flagyl because of her low bone density. She has now been put on budesonide, l don't know why it was never offered to her by her old GI.

awmom, This is her 3rd ultrasound. The GI has suggested her spleen. I just wish they'd find the problem.


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## DustyKat (Aug 20, 2015)

I don’t get the whole she needs to be on steroids for 6 weeks before she qualifies for Remicade. She already has a proven failure of steroids, 5ASA’s and Imuran. 

Just my take on things, particularly in view of the fact that this was not a requirement for Matt and he received approval, but I think they are misreading the conditions and prior treatment...

Failed to achieve an adequate response to prior systemic therapy including:
a tapered course of steroids starting at a dose of at least 40 mg prednisolone (or equivalent) over a 6 week period

http://www.humanservices.gov.au/spw/health-professionals/forms/resources/pb087-1508en.pdf

…it states a prior tapered course of Prednisone, not a tapered course immediately preceding the application. 

Matt is the same situation med wise as M. Currently taking Pentasa and Imuran with his only experience of Prednisone being a 6 week course 4.5 years ago at diagnosis. 

Dusty. xxx


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## Catherine (Aug 20, 2015)

Unless they  did 30mg pred course first time.  Then course wouldn't count.


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## crohnsinct (Aug 20, 2015)

UGH:voodoo::voodoo::voodoo:

Well hopefully the steroids will get her feeling better at least.  :ghug:


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## Jmrogers4 (Aug 20, 2015)

Hope they get things figured out quickly and remicade finally provides some relief


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## Farmwife (Aug 20, 2015)

I hope it all gets sorted soon.


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## upsetmom (Aug 20, 2015)

From what l remember M was on a low dose for 2 weeks. Even with the steroids now, she's only taking 9mg.  Either way M had to wait 1 month after her next chickenpox vaccine before she can start the infusions. 

Had a bit of a sad day yesterday. M had an appointment with an adult endo for her ovarian failure. After going over all her paperwork she asked M had anyone told her that she could never have kids naturally. The last endo told me to tell her but somehow l never had the heart to tell her...now l wish l had told her instead of this Dr telling her.


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## pdx (Aug 20, 2015)

So sorry to hear about yesterday--that's rough.  We've had a few much smaller things "revealed" by doctors before we had talked to E about them, and it's always hard.


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## Maya142 (Aug 20, 2015)

Really sorry to hear about your appointment. How did M take the news? I can't even imagine hearing something like that when she's so young, your poor girl.

9mg is the standard dose for Entocort, my daughter was on it too.


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## crohnsinct (Aug 20, 2015)

Aw hugs mama! :ghug: You probably thought you had some time on that one....and I am surprised the doc announced it like that.  I mean if you are thinking to ask "has anyone ever told you" I would think you would ask the parents first but guess she just slipped.


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## my little penguin (Aug 20, 2015)

Super big hugs
Hope you and her can have a few more talks about it now that she knows when she is ready


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## upsetmom (Aug 21, 2015)

She seems ok today. Last night she was very quiet and stayed in her room. Poor thing it would be a lot to take in at her age. I told her l'm here if she needs to talk.

We were told the ultrasound was normal but we still have to wait for the Drs report. Still no answer to what this pain is.


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## Sascot (Aug 21, 2015)

Sorry to hear things are difficult. It's hard watching them trying to process these things.


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## DustyKat (Aug 21, 2015)

Oh my upsetmom. :ghug: What a very difficult and sad time you have both had.  

Sending much love and healing thoughts your way. :heart: 

Dusty. xxx


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## awmom (Aug 21, 2015)

Awww upsetmom,  I am so sorry to hear that, and I can imagine your heart must have sunk when the doc told her.  I think it will take some time for her to process this and I'm sure you and her will have many conversations going forth.  Sending warmest thoughts to you both.


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## Maya142 (Aug 21, 2015)

Sending HUGS as you both try to process this :ghug:


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## SupportiveMom (Aug 21, 2015)

Its always so hard to hear disappointing news from the doc. Sending hugs!


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## kimmidwife (Aug 22, 2015)

Upset mom,
I am so upset hearing about this doctor doing that! She really should have discussed it with you first. Please tell your daughter there is a lot of research into this area. There are some women that have had transplants of a piece of ovary from a relative and that has jumpstarted their ovaries into working and they have had babies from that. I will try to find the story and post the link for you.


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## kimmidwife (Aug 22, 2015)

Here it is,
http://www.infertile.com/news-coverage-ovary-transplantation/


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## kimmidwife (Aug 22, 2015)

Second article,
http://www.srf-reproduction.org/portals/0/education/kay.pdf


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## upsetmom (Oct 16, 2015)

M has been approved for remicade. First infusion is on the 30th and she can't wait.

M got early entry into university to become a registered nurse, not the career l would have chosen for her but l'm glad she's happy.:ysmile:


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## Farmwife (Oct 16, 2015)

I'm so glad it all came through. I hope it helps.
Congrats on the entry to nursing school for her.
I agree, Is not what I would necessarily push for Grace but nursing does make sense since she's around it a lot.

HUGS


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## pdx (Oct 16, 2015)

Great news!  Hope Remicade works really well for her.  And congratulations to her on the early entry!


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## Sascot (Oct 16, 2015)

Congrats on the early entry to uni. I'm sure she'll make a great nurse. Good luck for the Remicade


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## Maya142 (Oct 16, 2015)

Way to go M! Our GI told us that kids who have chronic illnesses and have been in hospitals a lot often want to go into healthcare. She even tried to convince my daughter to go to Med School (it did not work). 

I'm sure M will be a wonderful nurse. And SO glad remicade was approved - hope it's her miracle drug!


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## kimmidwife (Oct 16, 2015)

Congrats on both!!! That is wonderful news!!!


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## upsetmom (Oct 18, 2015)

The infusion is done at 11am and l was told it would take about 3-4 hours, which would bring us to 3pm. M starts work at 5pm. I'm just wondering if she'll be ok to work or should she change her shift. We really don't know what to expect.:yfrown:


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## Maya142 (Oct 18, 2015)

My daughter tended to be tired after remicade - starting right after the infusion and lasting a day. She did get Benadryl and Tylenol as pre-meds so perhaps that was part of the tiredness. Some kids are absolutely fine, others feel better immediately -- it really varies. I would change her shift since the it's the first one, after an infusion or two you'll know what to expect.


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## my little penguin (Oct 18, 2015)

Same here day of infusion da would be wiped out 
Next day he was ok 
Good luck


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## crohnsinct (Oct 18, 2015)

O goes to swim or track practice right after with no problems.  But they stopped premedicating her.  When she was premedicated she would take a nap in the car then go to practice. 

I agree with Maya, since it is the first one switch until you know how she will react. 

Good Luck!


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## Catherine (Oct 18, 2015)

Get a certificate for work.


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## Mehita (Oct 18, 2015)

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.


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## Jmrogers4 (Oct 18, 2015)

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.


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## upsetmom (Nov 3, 2015)

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.


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## crohnsinct (Nov 3, 2015)

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.


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## my little penguin (Nov 3, 2015)

Opthamalogist not optometrist
Opthamalogist is the md
And deals with Ibd eye issues


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## Catherine (Nov 3, 2015)

There are a lot of season allergies at the moment.


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## Catherine (Nov 3, 2015)

my little penguin said:


> Opthamalogist not optometrist
> Opthamalogist is the md
> And deals with Ibd eye issues


You will need a GP referral to a eye specialist.


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## upsetmom (Nov 4, 2015)

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.


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## my little penguin (Nov 4, 2015)

Glad to hear it was just allergy related


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## CarolinAlaska (Nov 4, 2015)

Yeah, glad that it was an easy fix!


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## Tesscorm (Nov 4, 2015)

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.


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## kimmidwife (Nov 6, 2015)

Caitlyn had blood work with every infusion with remicade


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## upsetmom (Dec 22, 2015)

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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## CarolinAlaska (Dec 22, 2015)

She can tell the health team.  Don't they require a physical?


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## ronroush7 (Dec 22, 2015)

Congratulations


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## kimmidwife (Dec 22, 2015)

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.


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## upsetmom (Dec 22, 2015)

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.


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## Maya142 (Dec 22, 2015)

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!


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## upsetmom (Dec 22, 2015)

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.


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## Maya142 (Dec 22, 2015)

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:!


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## Catherine (Dec 22, 2015)

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.


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## upsetmom (Dec 22, 2015)

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.


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## kimmidwife (Dec 22, 2015)

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.


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## upsetmom (Mar 25, 2016)

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.


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## kimmidwife (Mar 28, 2016)

Upset mom,
This sounds like POTS.
http://www.dysautonomiainternational.org/page.php?ID=30
Has anyone mentioned this?


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## upsetmom (Mar 30, 2016)

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.


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## Clash (Mar 30, 2016)

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.


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## upsetmom (Mar 31, 2016)

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.


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## Catherine (Mar 31, 2016)

How high is the ferritin level?  Is she taking iron supplements?


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## upsetmom (Mar 31, 2016)

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.


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## Maya142 (Mar 31, 2016)

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!


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## Catherine (Mar 31, 2016)

Have you got the other iron numbers?

Did the hemoglobin level rise as well after the iron infusion?


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## upsetmom (Apr 1, 2016)

Hemeglobin did go up after the infusion, all the other iron numbers are within the normal ranges.


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## Catherine (Apr 1, 2016)

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.


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## upsetmom (Apr 1, 2016)

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.


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## upsetmom (Apr 1, 2016)

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.


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## kimmidwife (Apr 1, 2016)

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)


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## Catherine (Apr 2, 2016)

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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