Scheduling IVIG with Dr. B, what to expect?

[lmkmip67]

Well, we are just waiting to schedule the IVIG with Dr. B in CT. We just got insurance approval. We have been on antibiotics since Sept. with not enough improvement, so are going this route. My main concern right now is kind of what to expect? Dr. B told us a little about the day, and that type of thing. I am more curious about side effects and that kind of thing. My son is 7, 50 pounds. Dr. B said he will be doing a 2 day treatment. can anyone share their experience with IVIG and Dr. B? How long during the day does it take? What kind of side effects might we say, and for how long? How might we avoid the side effects?

 

Thanks!

 

Lisa

[Tamistwins]

Hi Lisa,

My 7 year old twins had ivig with Dr. B, we did not experience some of the bad side effects that others experience. Some have bad headaches, nausea, vomit. Make sure you administer orapred two days before treatment then continue till 2 days following treatment. If you didn't get a script, call the office and make sure the nurse Louise calls in the script. They give motrin before treatment and you can give it again before bed. Make sure to try and encourage your son to stay hydrated. He will probably have to urinate frequently during the treatment. It should probably be 5-6 hours. Good luck, I hope your son feels well soon!

Tami

[monarchcat]

Here's what our experience was like. Dr. B usually wants the child on prednisone 2 days before, the 2 days during treatment, and 2 days following treatment. He also usually wants the child on motrin and benedryl every six hours during the treatment days and the day or so after.

 

When you arrive at the infusion center you'll be put into one of the little treatment rooms. There are maybe six little rooms all off the main room where the nurses' desk is. In our experience all the rooms are filled most days. After arrival they will give motrin and benedryl and put in the IV and get your child settled in their room. Each room has a comfy recliner for the child and a guest chair or two for parents. There is a TV in each room but we found the stations kind of lacking for kids. They also have a few portable DVD players if you want to bring some DVDs. The second time we went we actually brought a full size DVD player and hooked it up through the HDMI slot on the back of the TV.

 

They start the drip fairly slowly and then increase the rate every so often as long as there are no side effects. Our treatments took about 4-5 hours per day (total of 75g). At the end of the first treatment you usually have the choice to leave the iv needle in over night (they wrap it up) or remove it and then get restuck the next day. If your child wants to bath/shower or swim you would need to have it removed. The first time my son chose to leave it in, but it irritated him a bit to have it there . The next time he chose to have it removed so that he could swim at the hotel.

 

Expect your child to be pretty drowsy and worn out during and after the treatment.. they are taking a pretty whopping dose of benedryl every six hours. My son got a headache the morning following the first day, but it went away with a morning dose of advil. The second treatment he didn't get a headache or any other side effects during the treatment.

 

Dr. B usually does "rounds" around lunchtime (maybe 1-2pm). The first time he came into the infusion center to talk to parents, but the second time, they seemed to have a new system whereby they took parents into the office area exam rooms to meet for a quick visit to discuss whatever issues needed to be addressed. In our case it was a quick update on progress, new prescriptions for abx, and a lab slip for followup labs.

 

HYDRATE!!! Lots and lots and lots of fluids the week or so before the treatment (especially the few days before... really push the water). Encourage your son to drink a lot during the treatment and then for a week or so after the treatment. They will give IV fluids along with the IVIG, but you need to push the drinking as well, especially that night... it will help stave off the headache/nausea.

 

I made sure to keep up with the probiotics during the days that my son was on the prednisone/advil, etc... it seemed like a lot on his stomach so I wanted to put as much "protection" in there as I could as well. Make sure to to the prednisone AFTER a meal to help avoid stomach upset, and food w/ the motrin as well. My son had a good appetite and ate normal food throughout the treatment.

 

In our case, he had some headache and vomiting 3 days after the first treatment (lasted about 6 hours then went away). The second treatment he had a heachache that lasted 24 hours starting four days after the treatment.

 

There is a little kitchen at the office with a water cooler, microwave, coffee, etc. There are restaurants around that you can go get lunch at and bring it back to the office, or if you don't want to leave your child, the nurses have menus from places that deliver.

 

Bring snacks, drinks, books, cards, etc for your son, but don't forget to bring a book or something for yourself as well. There is internet access. I found the cell phone reception not great in the office (I have sprint), but could walk outside and it was fine.

 

There are two nurses there, Judy and Louise. Both are wonderful in our experience.

 

Hope this helps... it's the kind of stuff I wanted to know before we went as well!

[lmkmip67]

We got a date, April 27th and 28th. Thank you so much for all the info! That is exactly what I needed to know! I am now a little nervous. I am sure it will be fine, but the side effects and the aftermath do make me a bit nervous. But I know it is necessary and am just going to take it one step at at time. How long did your children have to stay out of school?

[monarchcat]

We got a date, April 27th and 28th. Thank you so much for all the info! That is exactly what I needed to know! I am now a little nervous. I am sure it will be fine, but the side effects and the aftermath do make me a bit nervous. But I know it is necessary and am just going to take it one step at at time. How long did your children have to stay out of school?

 

The first time we had treatment on Monday and Tuesday and I kept him home wednesday and thursday as well. He seemed to feel good so I sent him to school on Friday. He came off the bus friday afternoon and vomited every hour for the next 6 hours. The second treatment I kept him home the whole week. He ended up having a headache all of that Saturday, but no vomiting.

[lmkmip67]

Ok, that is helpful. We are going in on a Wed and Thursday, so I will likely keep him home through the weekend then.

[NancyD]

Can't add much more except if you take dye-free benedryl and Motrin you will have to bring your own. Theirs has dye. And be sure to keep well hydrated for two weeks after. That really helps keep the headaches away. If you like Whole Foods there is one 5 minutes away -- the nicest I have ever seen. There is also a Barnes & Noble and Starbucks near the hotel. Hope it goes well! It's very low key and relaxing there and they are very accommodating.

[tpotter]

I would also suggest that you might get a better rate if you bid for a room on Priceline.com. We got an amazing price at a 3 1/2 star hotel in Stamford (quite a bit less than the Doubletree in Norwalk.) Start bidding about 4-5 days before you go, because you only get one bid per day. If your bid is not accepted, you can go up a little the next few days.

[Tamistwins]

I would also suggest that you might get a better rate if you bid for a room on Priceline.com. We got an amazing price at a 3 1/2 star hotel in Stamford (quite a bit less than the Doubletree in Norwalk.) Start bidding about 4-5 days before you go, because you only get one bid per day. If your bid is not accepted, you can go up a little the next few days.

Did you get the discount with double tree? If you tell them you are there for treatment with Dr. B you get the room for I think 83.00 as opposed to 173, it's still expensive considering all of the out of pocket expenses but the discount helps.

[lmkmip67]

Good to know on the Double Tree. Does it have a pool? That will be the big thing for Ian. He loves to swim and I think if he knows he can, that will help get through the first day. even if he isn't up for it, the option is a positive. lol. $83 isn't too bad. And yep, he also has a milk allergy, so a trip to Whole Foods will be a nice distraction for a bit.

[JAG10]

You need to call and ask for the "we care" rate at Double Tree.

 

Yes on the indoor pool, but if you/your child chooses to cap the IV instead of being poked twice, it takes the pool out as an option.