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Worried_Dad

IVIG Round 2 - Aborted

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Hi, y'all:

 

I promised a number of folks an update on our son's 2nd round of IVIG, scheduled for yesterday and today locally but using Dr. K's protocol. Turns out, it got derailed early.

 

About 2/3 of the way through Day 1, our son started feeling extremely dizzy, extremely weak, difficulty breathing. The nurse (understandably) stopped the Ig at that point and went to check with the "ordering doctor." That's when things fell apart.

 

They had Dr. K on file as the ordering doctor and contacted him in Chicago. He told them he could not possibly be responsible for patient care from several hundred miles away, and that our local pediatric neuro should be in charge of administering the treatment. Our local ped neuro's office then made it clear that they did not agree with the treatment and had merely facilitated arranging the local IVIG under Dr. K's orders.

 

So the infusion clinic nurse - sheepishly - explained that she had no ordering physician and could not proceed with any further IVIG. Day 2 was cancelled. We were taken to the ER for observation and discharged after our son's condition stabilized.

 

Personally, I think the combo of IVIG and blood sugar issues caused the problem. Unlike in Chicago under Dr. K, the local facility told us our son could not eat anything before the procedure or until at least 2 hours into the infusion. Of course, the hospital food did not appeal to him, so he was starving (and upset about it). Guess we'll never know for sure.

 

At this point, I guess we're probably done with IVIG. We can't afford another round in Chicago where we have to pay in full up-front. Plus, our son's reaction this time was a bit scary; not sure it's worth chancing it again.

 

Have to admit, my wife and I are depressed. We had high hopes for Round 2, and Dr. K had been very optimistic. Maybe the 2/3 of 1st day's dose will help a little; I don't know.

 

I hope others considering a 2nd round have better luck and avoid our "nobody's at the wheel" experience. Man, do I wish I had better news to share!

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Hi, y'all:

 

I promised a number of folks an update on our son's 2nd round of IVIG, scheduled for yesterday and today locally but using Dr. K's protocol. Turns out, it got derailed early.

 

About 2/3 of the way through Day 1, our son started feeling extremely dizzy, extremely weak, difficulty breathing. The nurse (understandably) stopped the Ig at that point and went to check with the "ordering doctor." That's when things fell apart.

 

They had Dr. K on file as the ordering doctor and contacted him in Chicago. He told them he could not possibly be responsible for patient care from several hundred miles away, and that our local pediatric neuro should be in charge of administering the treatment. Our local ped neuro's office then made it clear that they did not agree with the treatment and had merely facilitated arranging the local IVIG under Dr. K's orders.

 

So the infusion clinic nurse - sheepishly - explained that she had no ordering physician and could not proceed with any further IVIG. Day 2 was cancelled. We were taken to the ER for observation and discharged after our son's condition stabilized.

 

Personally, I think the combo of IVIG and blood sugar issues caused the problem. Unlike in Chicago under Dr. K, the local facility told us our son could not eat anything before the procedure or until at least 2 hours into the infusion. Of course, the hospital food did not appeal to him, so he was starving (and upset about it). Guess we'll never know for sure.

 

At this point, I guess we're probably done with IVIG. We can't afford another round in Chicago where we have to pay in full up-front. Plus, our son's reaction this time was a bit scary; not sure it's worth chancing it again.

 

Have to admit, my wife and I are depressed. We had high hopes for Round 2, and Dr. K had been very optimistic. Maybe the 2/3 of 1st day's dose will help a little; I don't know.

 

I hope others considering a 2nd round have better luck and avoid our "nobody's at the wheel" experience. Man, do I wish I had better news to share!

 

oh gosh...

As I was reading this I thought that, well...maybe that bit of the dose that he got will help...I'm hoping for you that it does!!!! That must have been so upsetting and scary with the reaction. I just can't imagine how you guys felt leaving there. How does your son feel today? What a mess with the docs not wanting to take responsibility as the ordering physician. I'm shocked that the ped neuro dumped you like that. In the medical field there is no way that Dr. K would be considered the ordering physician from that distance. I'm surprised the nurse even called him. Well, I will be thinking of you guys and hoping that what little dose he got will be what he needs. Have you changed antibiotics or are you still using the Augmentin? What about transfer factors? I haven't tried them yet - I have them in my fridge just in case- but if my dd gets sick again I think I will try them. I read a book "Transfer Factors and Immune system health" and you can get it at amazon. It was pretty convincing... even talks about pandas in it, among other autoimmune illnesses.

 

We thought many times during my dd's IVIg that they were going to have to stop the infusion...but hers was due to rages. Many times we literally had to hold her down in the bed while the IVIg slowly dripped in because she was raging so bad. They wanted to send her to a 'higher level of care' but luckily our doc fought for her to stay.

 

Hang in there and keep us posted on how your son is feeling.

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I am so sorry. It is sure disappointing when you were hanging your hopes.... Perhaps the amount will help. I have thought that perhaps these IVIG kids should have a few "tune ups" post IVIG. Please keep us posted.

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Hi Worried Dad, So sorry to hear what you went through and thanks for sharing with us so we also can learn from this..I have wondered if more IVIG would help my son..He only had 3 and he is 11....hang in there, Sarah

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ARRRRGGGGGHHHH!!!!

 

We've decided to at least explore the possibility of trying Round 2 of IVIG again locally and just need a local doc to collaborate with Dr. K. Met with our PCP yesterday. Their practice has no interest in helping us at all. He actually told us that the pediatric neuro who was supposedly "helping us arrange the IVIG" locally (but refused to return phone calls when the infusion nurse tried to contact her on that ill-fated 1st day of Round 2) sent them a note that she had talked to Dr. K, did not believe he was qualified to make the diagnosis, did not concur with the PANDAS diagnosis, and did not agree with IVIG as a treatment. She never told us any of that and left my son hanging in the ER because she "had no responsibility." The woman works in the same building as the infusion clinic and the ER and would not get involved, despite the fact that our son is her patient.

 

So - because of her note - our PCP has "serious concerns" about the PANDAS diagnosis and the IVIG treatment and wants nothing to do with it. They actually said "who is this guy, Dr. K?" and I felt like saying "somebody who tries to help these kids instead of telling them to go see somebody else!!!"

 

I'm trying to work through our HealthAdvocate service to find a local doc who might at least talk to Dr. K and Dr. Leckman and might consider PANDAS as a possibility. The service rep with whom I spoke on the phone was simply shocked that we have approval from our insurance company for the treatment but can't get a doctor on board. She says it's always the opposite.

 

I know everybody has felt this same pain... but it's so maddening when the evidence is there, the out-of-state experts are willing to consult, and the local docs just give you that patronizing stare and say "PANDAS is not real disorder." (Or worse: they nod, say nothing to you directly, and then send a note to your referring doc dismissing the whole thing.)

 

Ah, well. Back to the drawing board.

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Brian - I'm so sorry that you guys are having so much trouble with these docs. Have you considered trying Children's Hospital in Detroit again? I know that you had one bad experience, but not all of these docs are the same. The female associate of Dr. Chugani was supportive (even though not very knowledgeable), but she works closely with Dr. Chugani (who is harder to get in to see) and she made this PET scan possible for us. Why don't you try getting an appt.? Pat

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That is so frustrating! When you are done with this horrible PANDAS, atypical SC, post infectious neurological/movement/neuropsychiatric disorder (whatever the docs want to call it), you need to write a book about it. (You know like, "Against Medical Advice".) What you are going through is just ridicuous! :angry:

 

As an aside: One thing I have been wondering is the pro con of doing IVIG vs. Plasmaphoresis at this point.

1) is plasmaphoresis more likely to be effective in an older chid?

2) if there was a possible adverse reaction to IVIG is plasmaphoresis a safer option?

 

Good questions for Dr. Swedo, Dr. K., and Dr. Leckman? (You could try to call or e-mail Swedo. She has answered some of dh's e-mails in the past.)

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I'm also so sorry the second infusion didn't work out and you are once again getting the run around. As I write this, I'm on my son's bedroom floor and he is hooked up for his second IVIG treatment. The first one in January made such a huge difference for him. Our doctor has recommended doing it once per month for 6 months. We still aren't sure we are going that far, but feel confident in doing it a couple of more times. We've been very fortunate in that we received full coverage and a visiting nurse service is able to do it here at home. I'll say prayers for your son and this maddening situation. Take care and keep on pressing.

 

Jena

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Thank you all for your patience with my venting, for the sympathy, and for so many great suggestions! We're kind of following them all right now: have sent e-mails to Dr. Swedo, Dr. Leckman, Dr. Chugani, checking with the doc who took over for the DAN! doc who originally diagnosed our son locally (but passed away late last year), and working through Health Advocate. And Jena, the home infusion sounds very appealing. Dr. Chugani actually e-mailed me back and mentioned that this is an option after the 1st infusion, so I think we'll explore that one seriously: would make the process so much easier for our son!

 

Jena, how did you go about arranging for in-home infusion? Do you think they would be willing to collaborate with an out-of-state doc (like Dr. K) on that type of procedure?

 

Thanks again, y'all. This forum is saving my sanity!

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I know it can be so frustrating, worrisome and exhausting. Keep moving forward... hopefully, there is some positive help around the next turn.

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Our home infusion company does work with our out of state doctor. The name of the company we are using is Accredo Therapeutics. Apparently they are national (per their nurse I'm sitting with right now). We were given the choice of going to our docs office for the procedure or doing it at home. Our insurance company didn't seem to have a preference. If you need me to dig further and find out what happened behind the scenes to make it work, email me at jdpez@hotmail.com. I don't get to check in here very often. I can only do it today as I have grandparents watching my other two little ones during the procedure. Did you guys ever get reimbursement for the first IVIG? We lucked out in that they paid the infusion company directly. Take care and keep me posted if you need more info.

 

Jena

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Jena,

 

what dose of IVIG is your son getting (gram/kg)? Also, what brand of IVIG are they using? I was thinking IVIG would only be needed once or twice...6 x sounds like a lot!

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Jena,

 

what dose of IVIG is your son getting (gram/kg)? Also, what brand of IVIG are they using? I was thinking IVIG would only be needed once or twice...6 x sounds like a lot!

 

For his first infusion, he got 25 grams two days in a row for a total of 50 grams. He weighs 55 pounds. Yesterday, we did another 25 grams again, but will just do it one day per month instead of the two days in a row. We have approval to do it once per month for 6 months, but are going to monitor his progress and make the call whether or not to continue after the first three months. We are using Gammunex.

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I'm also so sorry the second infusion didn't work out and you are once again getting the run around. As I write this, I'm on my son's bedroom floor and he is hooked up for his second IVIG treatment. The first one in January made such a huge difference for him. Our doctor has recommended doing it once per month for 6 months. We still aren't sure we are going that far, but feel confident in doing it a couple of more times. We've been very fortunate in that we received full coverage and a visiting nurse service is able to do it here at home. I'll say prayers for your son and this maddening situation. Take care and keep on pressing.

 

Jena

how have your results been? how old is your son? I am just beginning the PANDAS? and do not know what to do or who to turn to for help?

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