Managing Crohn's In Seminary - Any advice?

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amother

Pewter

Sun, Aug 26 2018, 11:19 am

Does anyone have any information about a private nurse I can hire to administer Remicade infusions to a seminary girl?

Right now, her American doctor will be issuing the Remicade here, and I get an entire infusion kit. I have to figure out a way to get it to Israel, but that's pretty much handled. Once that happens, I need to find someone to do the actual infusion. The kit contains everything, medicine, IV bag, tubing etc.

I know we can go to Shaarei Tzedek for the infusions, but they only do infusions on Tuesdays, and I can predict that this will sometimes be a scheduling conflict. She's Remicade-dependent, which means that she can't wait an extra week for an infusion. Also Shaarei Tzedek wants 400.00 (US) on top of what her student insurance will pay. That's a little steep for a monthly charge.

Anyone with any information?

amother

Tangerine

Sun, Aug 26 2018, 11:26 am

Try healthcareisrael.com

amother

Pewter

Sun, Aug 26 2018, 12:00 pm

amother wrote:

Try healthcareisrael.com

What is that? An insurance agency or something else? We've gotten the runaround from so many insurance agencies. It's like no one ever heard of Crohn's which is like the most common Ashkenazi Jewish health condition out there!

amother

Tangerine

Sun, Aug 26 2018, 12:09 pm

amother wrote:

It's also called EMA care, they are a concierge case management company. They guide you through the system. They are English speaking doctors and nurses who specialize in getting non-Israelis, including students, the care they need. They should be able to hook your daughter up with a private nurse. I don't know about their prices.

blessedjmom

Sun, Aug 26 2018, 12:14 pm

Chaim vchesed is an organization in Israel that's amazing. They'll help you, guide you and advise you! Try reaching out to them. Chaimvchessed.com 7184072448 (from the US)

shabbatiscoming

Sun, Aug 26 2018, 4:12 pm

OP, does your daughter have health coverage from the school? She could find out from there what nurses can help her out.
Also, Im going to think that anything private will cost you, so dont be surprised if 400 is the correct amount.

happyone

Sun, Aug 26 2018, 4:22 pm

Try Mr. Drummer at JCCSG . 718-63-JCCSG (718-635-2274) ~ Info@JCCSG.org ~ Twitter: @JCCSG.
I'm sure he has dealt with this before .

shabbatiscoming

Sun, Aug 26 2018, 4:39 pm

happyone wrote:

Try Mr. Drummer at JCCSG . 718-63-JCCSG (718-635-2274) ~ Info@JCCSG.org ~ Twitter: @JCCSG.
I'm sure he has dealt with this before .

Is this is america? How will this help the OP?

shabbatiscoming

Sun, Aug 26 2018, 4:39 pm

happyone wrote:

Try Mr. Drummer at JCCSG . 718-63-JCCSG (718-635-2274) ~ Info@JCCSG.org ~ Twitter: @JCCSG.
I'm sure he has dealt with this before .

Is this in america? How will this help the OP?

happyone

Mon, Aug 27 2018, 1:47 am

shabbatiscoming wrote:

Is this in america? How will this help the OP?

He guides families. I bet shes not the first student traveling abroad. He can advise resources that have worked well for others.

Shuly

Mon, Aug 27 2018, 10:07 am

I second Chaim V'Chessed - this is right up their alley.
Also, you should speak to her Eim Bayit about this.

amother

Pewter

Mon, Aug 27 2018, 12:15 pm

Shuly wrote:

I second Chaim V'Chessed - this is right up their alley.
Also, you should speak to her Eim Bayit about this.

Oh, we did. Her seminary knows about it but they have no advice.

Right now, we are hearing she has to go to Shaarei Tzedek for infusions, which are only done on Tuesdays (what if she's on a tiyul? She can't wait a week.), it will cost us 400.00 American per infusion, and we have to get the Remicade shipped from America once a month.

There has to be a more workable system!

amother

Brunette

Mon, Aug 27 2018, 12:19 pm

Can she go a week early, if she knows the next week is bad? (I know nothing about this; I know we've done that for other things, although sometimes insurance causes problems.) I assume this isn't something Terem could handle.

amother

Salmon

Mon, Aug 27 2018, 12:23 pm

OP I know this will sound a bit crazy but is there any way for her to learn to do it herself? It really is just hanging an IV and sticking her vein .....or get a hatzalah volunteer to stick the vein...or does Remicade require a nurse to be present?

amother

Pewter

Mon, Aug 27 2018, 3:20 pm

amother wrote:

No, you can't. Blood levels are measured very precisely. Plus, it's an extremely expensive medication, and when it runs out, she gets sick again.

Most seminary girls just go on self-administered meds, like Humira, but she doesn't tolerate Humira well. She's fine - not a symptom in sight - when she does her monthly infusions. That medication is like a nes min hashamayim.

amother

Pewter

Mon, Aug 27 2018, 3:22 pm

amother wrote:

I don't know if Terem can handle it, but Remi is not the kind of med you can self-administer. First of all, there have been known to be complications even 5 years after tolerating it well. It has to be administered by a trained nurse who has a crash kit with her.

Thanks for the idea, though. The world of Crohn's is relatively new to me too (my daughter was diagnosed a year and a half ago).

amother

Orchid

Mon, Aug 27 2018, 3:39 pm

SZ is charging you a fortune because they are using foreign residents as a money maker. I am not familiar with the med you are describing but any of the higher level medical centers should be able to administer it. In Yerushalayim you can try Haturim. If she is on the Harel insurance you can also try the Wolfson medical center. These are higher level clinics then the regular nursing stations and have monitoring equipment. You can also ask the aim bayit to contact Benny Fisher. He will be able to direct you as to where to go and who you want to use. Have you looked into purchasing the medication in Israel rather then shipping it from the US? Often the medication is cheaper here because the government regulates prices. This is true even when you are paying out of pocket.

amother

Beige

Wed, Aug 29 2018, 5:03 am

re amother above who says that SZ is "charging you a fortune", this medicine is EXTREMELY expensive. In the US, it costs over $5000 per infusion!!! $400/per is less than flying their dd back home and is really not so crazy (imho) given what the whole things costs, even in Israel.

It is also cheaper to get the medicine in Israel. My dd is on Remicade and quarterly I pay out of pocket for 7 bottles (which is a dose that is much larger than most people are on). 7 bottles at Maccabi costs me about 2500 nis. The other three months in the quarter she gets the medicine for free. We have made aliyah, so it's a different situation that the OP, but just wanted to give you more info.

My dd goes to Hadassah Ein Kerem for Remicade and they do Remi three times a week (although Sundays is their very busy day with pediatric day surgeries, so they prefer not to do it on Sundays). Remi is given in Ishpuz Yom L'yeladim (the pediatric outpatient day unit). We know other sem and yeshiva students who have received it there, despite being over 18. Their number is 02-677-9375.

I agree that Chaim V'Chesed is a very good resource for you to turn to. They have been very helpful to us in the past.

Lastly, if you set up an anon email address, I can pm you, as your dd is more than welcome to come to us for a Shabbos. Any dietary issues cheerfully accommodated Wink

Hatzlacha. b''eH it will be a great year for your daughter!

smileyfaces

Wed, Aug 29 2018, 10:29 am

$400 for 1 infusion seems like a bargain!

It’s a fortune in the US even with health insurance.
I would never have someone self administer remicade. Seems like a very bad idea. Also, usually there is a doctor (GI) that would need to prescribe it. Her GI in the US can’t prescribe her remicade in Israel. She should see a GI in Israel who will handle her case while she is there. And it is important to have a GI there in case of emergency.
In my experience it’s difficult to get appointments at GI’s and the wait time is usually a few months. Her GI in the US should be able to find a GI for her and get her an appointment.

amother

Pewter

Wed, Aug 29 2018, 11:59 am

smileyfaces wrote:

To clarify, we have to ship the medication to her from the US which we pay for w combo insurance and hefty co-pays. Insurance will only give one dose a month, which means we have to send it. Shaare Tzedek doesn't have to provide even the IV bag! A nurse told me providing the infusion will cost Shaare Tzedek less than 50 US dollars!

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