Q for those who have gotten IVIG

[JoyBop]

If your child has received IVIG, please tell me what the procedure is like. Is it over one day? Two?In hospital or in home? I know there are different protocols but explain yours. How much school does your child miss? Please also share if you got it covered and if your child has received an official immune deficiency diagnosis. If not, how much did you have to pay out of pocket.

 

I am going to try to pursue getting IVIG for DS8 but would love to know what I am getting myself into and how much school will need to be missed. (More because Im already being tempted to home school if that tells you where Im at right now....Ggrrrrrrrrr)

 

Lastly, and I know this is a lot of info to ask, so share what you can.....How were the results? Would you go through it again?

 

Thanks in advance...I know this was a loaded question and I will be grateful for any answers.

[Mayzoo]

We have not had IVIG yet, but we pursue the play resource kit for kiddo. I read through it, and I think it will help her when the time comes. The people at the help line were very informative. The one I talked to, her son has had IVIG numerous times before. Here is the resource kit link:

 

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

[bigmighty]

DS had HD IVIG 2x - both as part of the current NIH clinical trial. Each was about seven hour per day over the course of two days. In DS's case, since he was part of the study, he stayed in the hospital for the full week, as they were doing other testing. Most outpatient is seven or eight hours per day over two days in a clinical setting with the port for the IV left in overnight, so they don't have to find a new vein the 2nd day. For outpatient, the child gets to go home with you if local, or back to your hotel with you if you are visitors. I know some people arrange for visiting nurses to do IVIG in their homes, but have no experience with how that works. If you are doing IVIG, be sure to hydrate A LOT before, during, and after the procedure. Starting about two days before the IVIG, have your child drink 8 ounces of liquid every 90 minutes during waking hours. Keep it up for about three days after IVIG. The hydration reduces the risk of significant headaches.

 

DS's personality changes during IVIG - as in he gets angry and upset for a while, followed by silly and very immature. During the anger, it was important that DH and I seem to think this was perfectly normal and not react to it or look concerned or upset. Only a small percentage of kids have the mood swings. But, just in case yours is one of them, it's good to be aware that it's a possibility, so it doesn't take you by surprise. Do you have specific questions? Let me know.

[pr40]

dr b's assistant told us that IVIG is not covered by insurance unless there is a sever problem with immune system. so, if we want it, we can have it but have to pay for it. think about that aspect as well, will insurance cover it?

[bigmighty]

Forgot to add - after each IVIG, DS was extremely tired and run down. The 2nd was just as the school year had ended. But after the 1st, he missed two full days of school, then started attending just a few classes per day for the next couple of weeks. He would go to two morning classes for a couple of days, then two afternoon classes for a couple of days (he was in middle school at the time). So, beyond the two days off, he went to school only part-time for the next week and a half after that. Most of the teachers gave him work to attempt at home if he felt like it during his part-time days. So he really didn't fall far behind. I did end up doing some reading aloud of textbooks to him while he rested so that he could keep up with the academics. It is a good idea to prep the school so they know what to expect. Also, you'll need a doctor's note to the school to get permission for the flexible schedule. DS was told to shower every time he came home from school because of the reduced immune function post-IVIG.

 

Also, NIH gave DS benedryl before each of the IVIGs. I hear that this is commonly done.

[JoyBop]

BigMighty, thanks so much for all those tips!!

 

Pr40, I am already concerned as we will not have the funds to pay out of pocket. Some people on this site have said they have gotten it covered until encephelitis diagnosis and auto immune disorder NOS. We are being referred to a PANDAS immunologist in November and hope they can come up with something. We have never looked at his IGG count, so we will see. I was told by our infectious disease dr. that if the IGGs are low they have to cover it, no questions asked. But not wanting or banking on our child having that dx. He is usually healthy but did have a severe autoimmune reaction to foods from birth to age 5 and many doctors have thought there is a relationship between that and his current PANDAS condition.

[airial95]

My severe PANDAS son has had 3 infusions thus far, my less severe daughter has had it once.

 

My son: He does not have an immunodeficient diagnosis. However, we were able to get it covered by insurance because of his medical history (strep 10+ x per year prior to T&A, 6+ per year after - all while on full strength abx/multiple abx). The infusion was done over 2 days, and is prescribed by weight, so how long you are there will depend on that. Our son is a smally fry, and his were about 5-6 hours each day. The hydration is important, as is dosing with ibuprofen (or Tylenol) and benedryl 1 hour pre infusion and repeated every 6 hours. Some folks use steroids pre- infusion as well, he have not done that on every infusion. Some also use IV fluids prior to infusion, we have not done that. His first two infusions were done at Dr. B's infusion center. The first two were done over the summer, and because they were out of town, we took more time away than we would have if it were done at home. The first time he had some pretty gnarly side effects (bad headaches/vomiting) that came on about 8 hours post infusion on the 2nd day and lasted about 8-10 hours, the second time the side effects were less severe, and came about 10 hours post infusion and were over within 6 hours. He was tired after each infusion. As for results - the results from the first infusion were immediate, and we never went through the ups and downs others have reported. He remained 100% for about 8 weeks post infusion each time.

 

Because of the changes in Dr. B's office, we went to our local immunologist who was finally on board with IVIG. We got it covered because we had documentation of his improvement from the first two infusions (primarily no strep infections!!!) We did it at home (see my daughters explanation below for reasons why), with a nurse coming in. He had ZERO side effects for his third infusion. The results weren't as strong, but his sister had strep at the time of infusion, so we're thinking that has had something to do with it, or we are just seeing the ups and downs for the first time. (the infusion was only 3 weeks ago. The nurse struggled to get the IV started, which was a disaster. He was already nervous about not being in the Dr's office, so after the first miss, he was crazy. But we have a friend who works in the NICU at our local hospital, and she was able to come over and get it started.

 

Cost: The first infusion was about $1300 because we had to reach our deductible, 2nd was about $585 (20% copay until we reach our out of pocket max), the third was a bit more expensive because we switched to home infusion, at about $795.

 

For our daughter: In April she got strep, and for the first time since her onset, she didn't pull out of the flare after a 30 day course of abx, like all the other times. After changing/adding abx multiple times in 2 months, we immediately pursued IVIG, seeing how great it was for our son. The immune also agreed that was the right step and rx'd HD IVIG. Unfortunately, they filed the insurance information improperly from the start. We were able to get the drug and infusion covered without preauth (and had the rx already ordered!) but the hospital where the infusion center was located required it and that's where the glitch lied. When pre-auth was requested, the Dr. requested it for PANDAS, and coded it as "personality disorder" - which is obviously not what IVIG is used for. That's why we ultimately had to go with home infusion (could get the drug covered, but not the infusion, once we had the formal denial.) Overall it cost us about $1100, because we got a discount on the nursing for doing it at the same time. She did great for her first time, successful poke on the first time, and did great. She had side effects on the EXACT SAME schedule as her brother did for his first infusion but far less severe. She threw up a couple times, and she said her head didn't hurt as long as she didn't move around too much. Overall, she missed 3 1/2 days of school - 2 days for the infusion, and then 1 1/2 days the next week when the headaches came back. Her results for her first time weren't as strong as her brothers, but she also tested + for strep exactly 1 week before her infusion (while on 3 - yes 3 full strength abx) so that didn't surprise us, but it did reduce her OCD and anxiety immensely, down from practically round the clock, to may 1-2 small episodes per week.

 

We try to schedule the infusions on a Thursday/Friday schedule so they have 2 full days to rest before they go back to school. They will be tired, so we give them permission to call to come home at anytime for at least 2 weeks post infusion. We pull them from gym and recess during that time because if they overexert themselves, we found the side effects come back (my daughter was doing great until she decided she was going to go outside and play during recess in the hot Florida sun - the headaches came back that night.)

 

The playkit someone else referenced is WONDERFUL. Both of my kids have them and those bears are their best friends. The first two infusions my son didn't want to treat the bear during the infusion, but wanted him with him. This time, we had to hook him all up so he was getting his "super medicine" at the same time.

 

Neither of my kids are immune deficient on paper. Just a ridiculous history of strep. If you want to get it approved by insurance, the wording of the letter of medical necessity and the coding they use is critical. We got help from a special coordinator from one of our approved pharmacies, she was very familiar with PANDAS (3 of her kids have it), so she knew what to do. She said, basically, any mention of PANDAS/PANS/PITAND and you are basically dead in the water (the reason why we didn't try to get the home nurse covered for my daughter for the time being). It has to be coded as autoimmune encephalitis, immune deficiency-NOS (non specific) or specific AB immune deficiency (which is what we used for my son) based on specific antibody tests vs general IG numbers, or history of chronic infection not responsive to other treatments.

 

I know it's a lot of info, but hope it helps!!!

[airial95]

Oh, bigmighty mentioned a doctor's note for absences, we actually wrote that flexibility right into both kids 504 plan, and it has worked beautifully.

 

Another insurance note - UHC, BCBS and some other insurance companies have changed their IVIG coverage in May, making it even more difficult even for true ID patients to get it. While we were going through our insurance issues with my daughter, the PA in charge of the office was telling me they have been having problems with UHC since the spring for even their true ID cases. She mentioned one that has been getting IVIG monthly practically SINCE BIRTH, for 12 years now, and on their last yearly re-auth, they were told that they had to stop IVIG for 4 months, re-run the tests to determine if the IVIG is still medically necessary. So it's not as automatic as it used to be. Also, for traditionally ID patients, the proper dosing is a low dose - 0.4-.8 g/kg of weight, where for it to be truly effective for PANDAS it needs to be 1.5-2.0 g/kg of weight, making approval difficult even for the ID kids.

 

Not trying to be Debbie Downer, just trying to share everything I've learned. I know some kids have had no problem getting HD with an immune deficiency diagnosis, and others who have. I am friends with a mom who's child is severely immune compromised, and has been on LD weekly for YEARS, when he had his PANDAS onset, he improved to 100% with his first dose of HD, he had it for a while, and then she had insurance/doctor problems, and has spent the last 9 months looking for an new immuno/neuro to prescribe the HD. Finally found one and her son is getting his HD infusion next week.

[Guest]

Thanks for all the info, hard to process but will print out for my mom. We were wondering how we could possibly afford this if and when I am prescribed ivig.

I'm going to mayo clinic and they use it for severe dysautonomia cases - that is me. I also have UHC but through disability...........

 

An idea. When CFS patients get ampligen they also do saline iv infusions, this really really helps I hear......but we all have terrible dysautonomia. The saline helps the body to retain fluid.

 

 

The special coordinator idea is good and I have an insane history of strep (starting at age 5).

 

I've been sick for 12 years, very frightened of side effects....... My friend gets ivig covered for every month but he has ITP (fda approved) and my aunt gets it for: hypogammaglobulanemia.

 

Good luck all.

[qannie47]

Out of pocket, about 7k. Two days out patient. No side effects at all except headache and we had a steroid on hand. He took one pill, and he was good to go. We were lucky that he tolerated it well. We did it on a Thu/Fri and he went back to school on Monday. 7 hours in total each day. In hindsight, I would not mention Pandas, it would have been covered if billed with autoimmune diagnosis. I am going to appeal this, in case we need another one. The whole thing went very smoothly. Dr. K never left his side, pretty much thru the whole thing. Very vigillent.

[T_Anna]

We have done 3 HD IVIGs at home, they cost $10k each and were done through Walgreens infusion over two days. DS is about 120 lbs (15 years old). He didn't have many side effects just worn out. He won't really hydrate more and was ok. His one big complaint, things tasted funny afterwards. The first two IVIGs helped reduce rages and pupil dilation. The last ivig done post PEX seemed to really help, but he is still far from going to school, etc. we may try to do another next week (maybe 1g). It was ordered through Walgreens infusions.

 

T.Anna

Edited September 29, 2013 by T.Anna

[JoyBop]

Thanks to everyone for sharing all of your insight. Things are getting pretty rough in my home with ds8 and we are now desperate to try ANYTHING we can to help him. I'm not sure I will make it til Nov 21 when he has his immunology appointment. He's going tomorrow night for a sleep study and I am actually praying he has sleep apnea so he can have a T&A. My daughter is 100% at 4 weeks post surgery and she was back to normal from the moment she woke up.

 

I just found a mass law that I am so relieved to have found. All I need is a doctors note that my child will need to miss 14 or more days of school per year for medical reasons and they have to provide a home tutor without delay. He already has 7 days he won't be in school in the first two month she to doctors appointments. If he gets surgery or IVIG that will be the day we send a certified letter. The school has not been helpful and is making home worse each day. Sorry to vent.

[Guest]

Thanks to everyone for sharing all of your insight. Things are getting pretty rough in my home with ds8 and we are now desperate to try ANYTHING we can to help him. I'm not sure I will make it til Nov 21 when he has his immunology appointment. He's going tomorrow night for a sleep study and I am actually praying he has sleep apnea so he can have a T&A. My daughter is 100% at 4 weeks post surgery and she was back to normal from the moment she woke up.

 

I just found a mass law that I am so relieved to have found. All I need is a doctors note that my child will need to miss 14 or more days of school per year for medical reasons and they have to provide a home tutor without delay. He already has 7 days he won't be in school in the first two month she to doctors appointments. If he gets surgery or IVIG that will be the day we send a certified letter. The school has not been helpful and is making home worse each day. Sorry to vent.

That's encouraging about your daughter. In my 20's I'm getting my tonsils removed in 4 weeks. ENT said many adults feel much better after having them removed. They have been infected for months and an array of abx didn't help at all.

 

Good luck with sleep study.

[JoyBop]

Thanks Ophelia. And good luck to you on your T and A. I hope it brings you as much relief as its brought our dd.

[airial95]

For T&A, if you have PANDAS, it's a good idea to be on abx both re and post surgery and have IV abx during the operation. If the tonsils are harboring anything yucky, it can be released directly into the bloodstream causing bad PANDAS reactions. There are some folks that have even reported that it was the T&A that caused the onset of their kids PANDAS.