UPDATE:Biopsy Back- Methotrexate

[my little penguin]

So GI called this am.
DS's biopsies are clean:ybatty:
But his scope looked visually bad.
He seems to think most of his issues are in the small bowel so MRE/CTE have been of no use. He is pushing the insurance to cover a pill cam so we can really see what is going on in there. Otherwise he said there was another procedure but it was very risky and still would not give him a good view of all the small intestine. HE even consulted with the other GI's in the practice on Ds since he has followed the rule book.
While waiting for insurance to approve:voodoo: GI placed Ds on a 30mg pred taper with folic acid. Then we are to start Methotrexate this friday (injection).

I have to learn how to give it I go to the hospital Friday.


I have given the epipen twice before but that is easy no measuring- no syringe and if you don't do it kiddo dies so not a hard thing.

This well.....:stinks:

WE stopped the 6-mp/allopurinol tonight since We start the pred and GI is not sure that isn't causing some of Ds's stomach pain and nausea etc..

If this clears up the symptoms then great.
IF pill cam is clean and no symptoms even better.
If pill cam is clean and still symptoms then on to IBS meds in addition to crohn's meds
If pill cam is not clean then on to biologics.

This plan is subject to change at a moments notice and will self destruct in two minutes.:hallo3:

WE were prescribed folic acid every day- it that what everyone else takes???
DO you take it the day of the injection???
I will call GI in the morning to clarify.
:lol2:

SInce I don't call enough.

 

[kimmidwife]

I hope they can figure things out and get the pill cam approved! It is crazy that these insurance companies control our lives.

 

[AZMOM]

Claire has methotrexate injections. When we use the small insulin syringe, she actually gives it to herself. You can do it!

And the folic acid is daily.

Hugs.

J.

 

[Tesscorm]

I hope you can arrange for the pill cam soon!! (agree with you Kim - insurance companies should NOT have a say!!).

MLP - please make sure that they give him a dummy pillcam first!! I've read of two or three members here who did not have the dummy first and then had real issues because the pillcam got stuck (one did or may require surgery)! If the dummy gets stuck, it dissolves on its own.

One question - why was the MRE useless? Stephen's crohns is in the small bowel and that what they use to 'see' his inflammation???

 

[crohnsinct]

Oh my gosh! I don't know what to say. You are dealing with so much. I totally relate to the freaking out over the injection. But I KNOW that I KNOW that I KNOW you can handle it! I so hope this brings him relief and that the pill cam gets approved and that you have good solid answers soon!

I'll be praying for you both!

 

[my little penguin]

Ds has had two CTE's. GI said they are great if you have scar tissue, obstructions or a lot of inflammation since that will show up as thicker tissue. Otherwise he said when you are at the beginning stages of the disease or have ulcerations in the lining then that doesn't show up until it does damage. He wants to know how bad it is before there is damage to show up on the CT/MRE.
He is using the pred and Methotrexate but will be more aggressive if things look worse in there.
I forgot to ask about the caloprectin test if that would be a good idea.:ymad:

 

[Tesscorm]

Thanks MLP

I think next time we are at the GI's, I am setting up a conference call with all of you on the line!!! If I forget something, I know someone else will ask!! :lol:

 

[Mom2oneboy]

Sorry you don't have any solid answers! The not knowing stinks!

We were told to take folic acid every day except for the day of and the day after the injection. My husband is the shot giver around here. We use a 28 guage needle and he gives it to him in the tummy and S said he didn't feel it at all. I'm sure you will do fine because you are a Supermom!! We can do anything

 

[my little penguin]

just checked 26 gauge needle- pharmacist found the smallest ones they had.
DS should be fine- he gets allergy shots every two weeks and has since he was 4.
I am beginning to calm down- just hopeful this all works.

 

[crohnsinct]

Thanks MLP

I think next time we are at the GI's, I am setting up a conference call with all of you on the line!!! If I forget something, I know someone else will ask!! :lol:

LMAO! Doc meet committee...committee meet doc...it would save us having to retype the whole conversation online afterward!

 

[my little penguin]

some docs have online appts- I haven't tried it yet and so far its for adults docs only not kiddy ones - but a mom can dream-
1/2 hour lunch break- get online appt done- copy paste online to forum - done
so simple no drive and no wait.

 

[jmckinley]

So sorry there were no clear answers. Grrrrr....insurance! I won't even go there...we would be onto the next page already!

Our MRE didn't show anything either, so we really don't know what's going on in there. At this point, the colon looks bad enough, I don't even want to know. We take folic acid every day except the day of metho. Funny how we all have different schedules.

We will be in the same boat, but we can do it! R is currently taking metho by pill, but Dr wants to start the shot in 2 weeks after R's ear surgery. Come on, Little Engine!!!! "I think I can, I think I can...."

 

[DustyKat]

I hope the pill cam is sorted soon mlp and you know which path you need to take.

Can the pharmacy not supply insulin syringes? The needle on a insulin syringe is 29g.

Do you have pre filled Methotrexate syringes there? Or are they not suitable?

Good luck hun!

Dusty. xxx

 

[crohnsinct]

We are kinda used to it now .

Have to laugh. Isn't it funny how much "we" are doing and how "we" are going through. caught myself writing the same thing the other day. The kids should hear us!

Again...giving themselves shots...these kids amaze me! Good for S!

 

[S mom]

Ya, I think even he is surprised by what he has been able to do/endure in the past few months. Life can change on a dime!

 

[Sascot]

Good luck with the Methotrexate, I hope it all goes well. Hope you manage to get the pill cam soon!

 

[my little penguin]

One shot down- I actually did the shot while the nurse watched-
DS was fine.
now to watch for side effects and good effects......

I asked about a fecal caloprectin (SP?) study as well- GI thought it was a great idea so DS did his thing- hope to find out the results soon.

OF course 30 mg of pred is not hurting the situation either at the moment but still stomach aches and urgency issues.

 

[Mom2oneboy]

mlp, good luck. I hope this works for your little guy. We are 2 shots down and no bad side effects so far. Keeping my fingers crossed for both of us!

 

[jmckinley]

mlp, Glad to hear that learning to give the shot went well. We will be doing it tomorrow. Did you get the pillcam approved?

 

[izzi'smom]

wonderful news that the shot went well.
"we" all do it, right lol ?