Need suggestions for treating post lVlG headache

[minimaxwell]

We just got the green light to do lVlG at Mass General in Boston! It will be her second lVlG. She improved 70% but then started slipping and was begging for more.

A little history--DD17 did a 5 day steroid burst 1/24 with no improvement to PANDAS symptoms. 6 days later she was in ER with Pancreatitis. I thought at the time it was a possible reaction to the Biaxin she had started 2 days earlier. She spent 3 days in lCU and a total of 8 days in the hospital. We then decided to go for the lVlG which she had in March. On 2nd day of lVlG Dr. k gave her something in her iv to prevent headache, I think it was solumedral. He gave us a script for Prednisone to take home in case she got a bad headache. Sure enough 2 days later she woke with a massive headache and nausea. We started 5 day Prednisone. 8 days later she end up in Hospital again with Pancreatitis. Doctors can't tell me why,they ran tons of tests,scans,xray...

So now I'm starting to wonder if it was the prednisone....Don't you love it when we have to become a combination of Sherlock Holmes,MD.

 

So my question for all you smart PANDAS Mom's and Dad's. What can I use instead? Thanks in advance for all suggestions.

 

DD will be 3rd PANDAS patient getting lVlG at MGH. Our insurance covers so President of Blood Bank gave approval.

[philamom]

benadryl & motrin every 6 hours. lots of fluids before/during/after infusion.

[NancyD]

Yah...congrats! Which doc will be overseeing it?

 

Not to be a nag, BUT... have you (or will you) be doing IGeneX testing before proceeding with the next infusion? I think it's been ~3 months since your last infusion and it's really important to rule in or out TBIs.

 

Predisone could certainly be the cause of DD's pancreatitis. That is one of the possible side effects. I would definitely steer clear of prednisone, especially since she has a MTHFR mutation and you know she is prone to pancreatitis.

 

Here are the steps we take to ensure a headache-free infusion (my DD has had many over the years):

1. 2 weeks prior, she starts hydrating with lots of water.

2. 2-3 days before she starts taking 600 mg ibuprofen tid.

3. Just prior to the infusion, she eats a healthy meal (don't do IVIg on an empty stomach!), drinks lots of water, and takes 2 benedryls and 600 mg ibuprofen.

4. During the day of the infusion (or days, if she's doing a 2-day infusion) she takes benedryl and ibuprofen every six hours and drinks TONS of water non-stop.

5. The day after the infusion she takes benedryl only if needed, but continues to take 600 mg ibuprofen tid for two weeks. She continues to drink TONS of water for two weeks after. Also after the infusion she takes an epson salts bath 2-3 times per week. This helps with any herxing.

6. Keep stress to a minimum for days (even weeks) after.

 

What is key for my DD: WATER, WATER, WATER and ibuprofen tid.

 

Don't give tylenol as that will lower DD's glutathione levels. Particularly important since she has MTHFR mutation.

 

Hope it goes well! When are you doing it?

 

Nancy

 

We just got the green light to do lVlG at Mass General in Boston! It will be her second lVlG. She improved 70% but then started slipping and was begging for more.

A little history--DD17 did a 5 day steroid burst 1/24 with no improvement to PANDAS symptoms. 6 days later she was in ER with Pancreatitis. I thought at the time it was a possible reaction to the Biaxin she had started 2 days earlier. She spent 3 days in lCU and a total of 8 days in the hospital. We then decided to go for the lVlG which she had in March. On 2nd day of lVlG Dr. k gave her something in her iv to prevent headache, I think it was solumedral. He gave us a script for Prednisone to take home in case she got a bad headache. Sure enough 2 days later she woke with a massive headache and nausea. We started 5 day Prednisone. 8 days later she end up in Hospital again with Pancreatitis. Doctors can't tell me why,they ran tons of tests,scans,xray...

So now I'm starting to wonder if it was the prednisone....Don't you love it when we have to become a combination of Sherlock Holmes,MD.

 

So my question for all you smart PANDAS Mom's and Dad's. What can I use instead? Thanks in advance for all suggestions.

 

DD will be 3rd PANDAS patient getting lVlG at MGH. Our insurance covers so President of Blood Bank gave approval.

[minimaxwell]

Hi Nancy, You are not a nag, I totally appreciate all of your wisdom. Finally sent in igenex yesterday, I was going to call them tomorrow to find out how long it takes to get results. Dr. Walter will be overseeing it but Dr. T is calling the shots.Just got this email from Dr. t--thoughts?

 

Let's slow down the infusion rate to no more than 2 gms per hour (we typically infuse at about 6-8 gms/hr)

Drew is about 50kg so she would need 75 gms. Infuse over 36 hrs as a slow drip, during a two-day hospitalization.

Give zofran for nausea, lasix and/or diamox for headache. Avoid steroids entirely

Dr. T

Yah...congrats! Which doc will be overseeing it?

 

Not to be a nag, BUT... have you (or will you) be doing IGeneX testing before proceeding with the next infusion? I think it's been ~3 months since your last infusion and it's really important to rule in or out TBIs.

 

Predisone could certainly be the cause of DD's pancreatitis. That is one of the possible side effects. I would definitely steer clear of prednisone, especially since she has a MTHFR mutation and you know she is prone to pancreatitis.

 

Here are the steps we take to ensure a headache-free infusion (my DD has had many over the years):

1. 2 weeks prior, she starts hydrating with lots of water.

2. 2-3 days before she starts taking 600 mg ibuprofen tid.

3. Just prior to the infusion, she eats a healthy meal (don't do IVIg on an empty stomach!), drinks lots of water, and takes 2 benedryls and 600 mg ibuprofen.

4. During the day of the infusion (or days, if she's doing a 2-day infusion) she takes benedryl and ibuprofen every six hours and drinks TONS of water non-stop.

5. The day after the infusion she takes benedryl only if needed, but continues to take 600 mg ibuprofen tid for two weeks. She continues to drink TONS of water for two weeks after. Also after the infusion she takes an epson salts bath 2-3 times per week. This helps with any herxing.

6. Keep stress to a minimum for days (even weeks) after.

 

What is key for my DD: WATER, WATER, WATER and ibuprofen tid.

 

Don't give tylenol as that will lower DD's glutathione levels. Particularly important since she has MTHFR mutation.

 

Hope it goes well! When are you doing it?

 

Nancy

 

We just got the green light to do lVlG at Mass General in Boston! It will be her second lVlG. She improved 70% but then started slipping and was begging for more.

A little history--DD17 did a 5 day steroid burst 1/24 with no improvement to PANDAS symptoms. 6 days later she was in ER with Pancreatitis. I thought at the time it was a possible reaction to the Biaxin she had started 2 days earlier. She spent 3 days in lCU and a total of 8 days in the hospital. We then decided to go for the lVlG which she had in March. On 2nd day of lVlG Dr. k gave her something in her iv to prevent headache, I think it was solumedral. He gave us a script for Prednisone to take home in case she got a bad headache. Sure enough 2 days later she woke with a massive headache and nausea. We started 5 day Prednisone. 8 days later she end up in Hospital again with Pancreatitis. Doctors can't tell me why,they ran tons of tests,scans,xray...

So now I'm starting to wonder if it was the prednisone....Don't you love it when we have to become a combination of Sherlock Holmes,MD.

 

So my question for all you smart PANDAS Mom's and Dad's. What can I use instead? Thanks in advance for all suggestions.

 

DD will be 3rd PANDAS patient getting lVlG at MGH. Our insurance covers so President of Blood Bank gave approval.

[NancyD]

It takes 10 business days to get results from the time they receive the blood. The results will go directly to the doctor who ordered the test. How did her CD57 come out? And did you do c4a/c3a?

 

If IGeneX shows any Lyme-specific bands that are positive then you might want to consider postponing IVIg until after you have started treating (at least a couple of months). Otherwise the benefits from the infusion may be short-lived. You may even find you won't need IVIg after treating for TBIs.

 

I like Dr. T's suggestion to do a slow drip in the hospital over two days. I am not familiar with zofran, lasix, or diamo so I can't comment on that but I would check out their side effects and interactions with other drugs, supplements, and diseases.

 

Hi Nancy, You are not a nag, I totally appreciate all of your wisdom. Finally sent in igenex yesterday, I was going to call them tomorrow to find out how long it takes to get results. Dr. Walter will be overseeing it but Dr. T is calling the shots.Just got this email from Dr. t--thoughts?

 

Let's slow down the infusion rate to no more than 2 gms per hour (we typically infuse at about 6-8 gms/hr)

Drew is about 50kg so she would need 75 gms. Infuse over 36 hrs as a slow drip, during a two-day hospitalization.

Give zofran for nausea, lasix and/or diamox for headache. Avoid steroids entirely

Dr. T

Yah...congrats! Which doc will be overseeing it?

 

Not to be a nag, BUT... have you (or will you) be doing IGeneX testing before proceeding with the next infusion? I think it's been ~3 months since your last infusion and it's really important to rule in or out TBIs.

 

Predisone could certainly be the cause of DD's pancreatitis. That is one of the possible side effects. I would definitely steer clear of prednisone, especially since she has a MTHFR mutation and you know she is prone to pancreatitis.

 

Here are the steps we take to ensure a headache-free infusion (my DD has had many over the years):

1. 2 weeks prior, she starts hydrating with lots of water.

2. 2-3 days before she starts taking 600 mg ibuprofen tid.

3. Just prior to the infusion, she eats a healthy meal (don't do IVIg on an empty stomach!), drinks lots of water, and takes 2 benedryls and 600 mg ibuprofen.

4. During the day of the infusion (or days, if she's doing a 2-day infusion) she takes benedryl and ibuprofen every six hours and drinks TONS of water non-stop.

5. The day after the infusion she takes benedryl only if needed, but continues to take 600 mg ibuprofen tid for two weeks. She continues to drink TONS of water for two weeks after. Also after the infusion she takes an epson salts bath 2-3 times per week. This helps with any herxing.

6. Keep stress to a minimum for days (even weeks) after.

 

What is key for my DD: WATER, WATER, WATER and ibuprofen tid.

 

Don't give tylenol as that will lower DD's glutathione levels. Particularly important since she has MTHFR mutation.

 

Hope it goes well! When are you doing it?

 

Nancy

 

We just got the green light to do lVlG at Mass General in Boston! It will be her second lVlG. She improved 70% but then started slipping and was begging for more.

A little history--DD17 did a 5 day steroid burst 1/24 with no improvement to PANDAS symptoms. 6 days later she was in ER with Pancreatitis. I thought at the time it was a possible reaction to the Biaxin she had started 2 days earlier. She spent 3 days in lCU and a total of 8 days in the hospital. We then decided to go for the lVlG which she had in March. On 2nd day of lVlG Dr. k gave her something in her iv to prevent headache, I think it was solumedral. He gave us a script for Prednisone to take home in case she got a bad headache. Sure enough 2 days later she woke with a massive headache and nausea. We started 5 day Prednisone. 8 days later she end up in Hospital again with Pancreatitis. Doctors can't tell me why,they ran tons of tests,scans,xray...

So now I'm starting to wonder if it was the prednisone....Don't you love it when we have to become a combination of Sherlock Holmes,MD.

 

So my question for all you smart PANDAS Mom's and Dad's. What can I use instead? Thanks in advance for all suggestions.

 

DD will be 3rd PANDAS patient getting lVlG at MGH. Our insurance covers so President of Blood Bank gave approval.

[minimaxwell]

Her CD57 was fine, I don't remember the c4a/c3a. I will check tomorrow. I remember my Dad taking Zofran during his chemo,really helps nausea. I will look into the other ones. Kind of wishing we could continue iv fluids at home for a few days.

[ptcgirl]

Really pushing fluids and keeping the Ibuprofen/benadryl going every 6 hours seemed to help my DD. She's only had one IVIG so far, but the headaches weren't too much to handle. The Zofran helped with the nausea on day 3. Kept her from vomiting on the plane ride home! Strangely, keeping food in her seemed to help with the nausea too. When my DD had Lyme she had a bad reaction to predinsone (not like Drew's, but severe depression). Now that the Lyme is gone she was able to take it without any problems. Weird. Sounds like Dr T has the right idea on how to handle all of this. Good luck!

[Kiera]

Well lasix is a commonly used diuretic, and diamox is also used for diuretic effects in neuro patients to reduce cerebral edema. It is also the drug given to mountaineers to combat altitude sickness. Zofran is an anti-emetic, very expensive, used for chemo pts and now for morning sickness. My ds 9, got some zofran for a stomach virus/vomiting, it came in a chewable and works great! I also gave him one post ivig and worked great also. Just wondering about pushing fluids, then giving a diuretic to get rid of fluids, but if Dr T recommended it, he is a neurologist, I guess the aim is to reduce cerebral edema, but continue to hydrate the rest of the body. Just a few thoughts!