Post IVIg

[tapiash]

My DS had IVIG10 days ago. Lately he is is very whiny,inpatient and absolutely will not share with his sisters. Very extreme. He has started this new baby stuff when he gets upset. Last night he he became so upset he had a bloody nose. He yells at my husband because he was the one who made him upset," see what you did dad, you made my nose bled." We have not had that problem in a very long time. His blood pressure rises and causes his nose to bleed. It is so scary. Of course I am crying like a baby because I thought we were past that. I cant understand how these turning back symptoms are a good sign. Can someone explain this to me.

 

I felt so bad yesterday because prior to IVIG my son was able to answer questions without becoming upset . We could have a pretty "normal"conversation. Anyway, I flipped out because he was upset and didn't want to talk. I told him I was his mother and he would talk to me. It was rude and disrespectful for him to treat me this way .OUCH!. He was crying my daughter was upset because I upset my son and I am upset, confused and exhausted.

 

How do we know if our pandas children are being little turds or is it really pandas and they cant help it. I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.

[LNN]

How do we know if our pandas children are being little turds or is it really pandas and they cant help it.

 

Ah, my husband's sentiments exactly!

 

We're 5 weeks post-ivig. Weeks 3-4 were low points for us. One day took us back to a very dark place. My husband had to walk away before he said things he couldn't take back, both kids were crying and screaming and for the first time ever, I cried in front of the kids because I couldn't take it. The recovery with Pex and even with prednisone is so much easier than recovery with IVIG. Finally, 3 days ago, things started to look like they were turning a corner. Not an on/off switch - more of a dimmer switch, with things getting brighter.

 

I wish I could tell you why the IVIG recovery seems to follow this pattern for some and not for others. I wish there was some scientific explanation for what high dose IVIG does, for what "flipping the pages" is. It's a lot harder to trust in something that no one can explain to you with certainty. And even after all of this is behind us, I still won't be able to have any confidence that it "worked" long term, will still hold my breath all winter long.

 

For now, I can only hold on to success stories and the anecdotal support of doctors telling me this is the right course for our particular situation. I hope your son turns the corner soon. We've been doing Motrin 3xday and that seems to help with the irritability and mood swings. Hang in there.

[tapiash]

How do we know if our pandas children are being little turds or is it really pandas and they cant help it.

 

Ah, my husband's sentiments exactly!

 

We're 5 weeks post-ivig. Weeks 3-4 were low points for us. One day took us back to a very dark place. My husband had to walk away before he said things he couldn't take back, both kids were crying and screaming and for the first time ever, I cried in front of the kids because I couldn't take it. The recovery with Pex and even with prednisone is so much easier than recovery with IVIG. Finally, 3 days ago, things started to look like they were turning a corner. Not an on/off switch - more of a dimmer switch, with things getting brighter.

 

I wish I could tell you why the IVIG recovery seems to follow this pattern for some and not for others. I wish there was some scientific explanation for what high dose IVIG does, for what "flipping the pages" is. It's a lot harder to trust in something that no one can explain to you with certainty. And even after all of this is behind us, I still won't be able to have any confidence that it "worked" long term, will still hold my breath all winter long.

 

For now, I can only hold on to success stories and the anecdotal support of doctors telling me this is the right course for our particular situation. I hope your son turns the corner soon. We've been doing Motrin 3xday and that seems to help with the irritability and mood swings. Hang in there.

 

Thank You, LLM. That is so encouraging to hear. I appreciate the encouragement. For some reason I believed we would not "turn back any pages" I wanted to try PEX but our doctor wanted IVIG and I trusted him. My ds was on Zithro prior to IVIg but I took my son off because it didn't seem like it was helping. My son was acting the same on and off. I am going to try Motrin. Oh, the irribility is what drives me crazy. We cant even look at him without taking offense. You are absolutely right, steroid recovery is so much easier. We saw changes immediately. I too am holding my breath and praying for a long term cue, but at the same time I'm not too convinced IVIG is a permanent cure.

[mama2alex]

I've been thinking a lot about this lately, because my son is having a 2nd high-dose IVIG next week. From talking to doctors and other parents, I'm becoming convinced that "turning back the pages" is actually just the result of underlying infections - whether strep, Lyme, viruses, or other things - dying off. It makes sense that many of our kids' bodies have not been able to fully rid themselves of the infections that are triggering the autoimmune response, and when a flood of healthy antibodies are introduced suddenly, there is a massive die-off that the body then has to deal with. With Lyme Disease, this is a well-recognized response called a Herxheimer reaction, where symptoms worsen before they get better due to die-off. I spoke with our DAN doctor about this yesterday, and he agreed. He's giving us a number of "tools" to deal with it this time around, because last time it was awful (we weren't actively working with him then). As you describe, we saw things we hadn't seen in a long time (or ever) and they were often worse than before. It was extremely stressful for everyone, and I wondered later if he would have made more progress in healing if we had given his body this support after the first IVIG.

 

So here's what our doc recommended to mop up the dead bugs and help my son's body deal with it all:

1. Activated charcoal

2. Increase Bentonite Clay to 6 Tbsp/day (currently taking 1 Tbsp/day)

3. Supplement to support adrenals

4. Supplement to support thyroid

5. Homeopathic drops which help with detoxing

6. LOTS of water every day for at least 8 weeks post-IVIG (about 64 oz if possible)

7. Excercise every day

8. Aqua-chi foot baths alternated with epsom salts baths

 

I hope this is helpful, and I hope your son is feeling better very soon!

[Mary M]

We are 5.5 weeks post IVIg. I read about the "turning back the pages" and the "worse before it gets better" and our dd12 was in such excacerbation at the time that my dh and I literally said out loud, "how could it possibly get any worse". We were in a such a dark place...but it did get worse. And we did not see improvement until into week 4 but I know now that the IVIg is working. I think the de-tox, herxing is an excellent explanation although, as we learn more about the effect of IVIg on the PANDAS child, perhaps we'll learn that it is something even more than that. How I wish there was a way for healing to occur without the difficulties associated with turning back the pages and on good days I can hardly give myself permission to be happy about it because I know that another page will soon be turned but (and I like the dimmer switch analogy) the difficult moments are shorter in duration and less intense...

 

I know none of this is really any help when you're in the middle of it...crying or wanting to cry..trying to figure out if it's a PANDAS behavior or some learned response (yes, psychologist mumbo-jumbo!) but at least there are good moments...and, I think, at least for me, deep down in my consciousness, even though I knew it might get worse before better...we were getting IVIg as a treatment to improve things and when it takes weeks and weeks, well, that just feels pretty discouraging. And if I'm feeling discouraged by the slow progress...how discouraged are our kids at the slow progress of their improvement?

 

This disease is challenging and its treatments equally so...and I don't want to in any way misconstrue a cancer patient's experience but some comparison can be made to the challenges faced by the effects of chemotherapy...my friend Jim was never sick with his cancer, just tired, but he was horribly sick with his cancer treatment and was sick for many months from treatment. It's a horrible paradox...the treatment makes you sicker before you can get better.

 

In my perfect world in my head, all IVIg families would be able to stay in a Ronald McDonald type facility for 4-6 weeks post IVIg so the child could be worse in a place that doesn't trigger as many issues and the family members could stay there to receive the necessary support to get through the difficult treatment phase. But first, I guess we need this disease to be recognized, insurance to cover its treatment and then get a post IVIg support system in place.

 

Hopefully, just the reassurance that so many of us are with you will help...

Mary

from Michigan

[tapiash]

I've been thinking a lot about this lately, because my son is having a 2nd high-dose IVIG next week. From talking to doctors and other parents, I'm becoming convinced that "turning back the pages" is actually just the result of underlying infections - whether strep, Lyme, viruses, or other things - dying off. It makes sense that many of our kids' bodies have not been able to fully rid themselves of the infections that are triggering the autoimmune response, and when a flood of healthy antibodies are introduced suddenly, there is a massive die-off that the body then has to deal with. With Lyme Disease, this is a well-recognized response called a Herxheimer reaction, where symptoms worsen before they get better due to die-off. I spoke with our DAN doctor about this yesterday, and he agreed. He's giving us a number of "tools" to deal with it this time around, because last time it was awful (we weren't actively working with him then). As you describe, we saw things we hadn't seen in a long time (or ever) and they were often worse than before. It was extremely stressful for everyone, and I wondered later if he would have made more progress in healing if we had given his body this support after the first IVIG.

 

So here's what our doc recommended to mop up the dead bugs and help my son's body deal with it all:

1. Activated charcoal

2. Increase Bentonite Clay to 6 Tbsp/day (currently taking 1 Tbsp/day)

3. Supplement to support adrenals

4. Supplement to support thyroid

5. Homeopathic drops which help with detoxing

6. LOTS of water every day for at least 8 weeks post-IVIG (about 64 oz if possible)

7. Excercise every day

8. Aqua-chi foot baths alternated with epsom salts baths

 

I hope this is helpful, and I hope your son is feeling better very soon!

 

It makes complete sense. Can you explain to me what Bentonite is? Where can I buy it? Us rural folks do not have access to whole foods or organics markets so hopefully I can get it online. Thanks for your help!

[sf_mom]

There is no doubt in my mind it was herxing as well as new exposures that caused an increase in symptoms post IVIG. Our son had 3 hdIVIGs approximately 8 weeks apart with his last treatment being over 6 months ago and even this last week we noticed a herxing response. Our son even improved in 3 to 4 week cycles which is similar to the well documented Lyme herxing cycle. In an effort to push towards 100% we've been rotating antibiotics similar to a Lyme protocol and currently we have no OCD and no TICS but an increase in mood liability due to the recent change of antibiotics. There is definitely 'worse before better', 'flipping of the pages', 'herxing' that can initially last weeks, then days, then hours, then minutes until all symptoms fade over time. NOW, when we make a change in antibiotics we see immediate improvement for about 48 to 72 hours and then there is a flair of symptoms until things settle out over days and then a baseline adjustment towards full recovery again.

 

I get the impression your son is not currently on any antibiotics. Please clarify......

 

You can purchase Bentonite Clay at IHerb for about $7 a bottle. My son drinks approximately 1 1/2 cups a day under the guidance of a nutritionist that has used the product for years with all of her clients. This amount is way above recommended dosage but its helped tremendously in our son's recovery. Here is the link to our nutritionists talk about Bentonite Clay on YouTube

Edited July 24, 2010 by SF Mom

[bgbarnes]

My DS had IVIG10 days ago. Lately he is is very whiny,inpatient and absolutely will not share with his sisters. Very extreme. He has started this new baby stuff when he gets upset. Last night he he became so upset he had a bloody nose. He yells at my husband because he was the one who made him upset," see what you did dad, you made my nose bled." We have not had that problem in a very long time. His blood pressure rises and causes his nose to bleed. It is so scary. Of course I am crying like a baby because I thought we were past that. I cant understand how these turning back symptoms are a good sign. Can someone explain this to me.

 

I felt so bad yesterday because prior to IVIG my son was able to answer questions without becoming upset . We could have a pretty "normal"conversation. Anyway, I flipped out because he was upset and didn't want to talk. I told him I was his mother and he would talk to me. It was rude and disrespectful for him to treat me this way .OUCH!. He was crying my daughter was upset because I upset my son and I am upset, confused and exhausted.

 

How do we know if our pandas children are being little turds or is it really pandas and they cant help it. I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.

We are 10 days post IVIG too and we have seen turning back of pages- not as bad as what you have seen- I was planning on posting our update tomorrow- I started a new job last week too so i have been really BUSY!! It has been in spurts seeing things we have not seen in a while- the repeating of things ....that had stopped once we got on the abx. It definitely does not even touch our worst times- it is just bringing stuff up from time to time not every day and the duration is not as long as it could be. We have seen some interesting progress in ability to communicate what is going on too.I will go into more detail in my post. I just wanted to respond to you because we are in the same timing! Interesting about the bloody nose- because I noticed dried blood in ds's nose the other day.....

Hope it gets better soon!

Brandy

[Suzan]

How do we know if our pandas children are being little turds or is it really pandas and they cant help it. I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.

 

This is us at our house too. I am sorry you are experiencing this as I know first hand how awful it is. dd8 had IVIG 3 weeeks ago and since she's doing so poorly, we are already scheduling her next one. This will finally be 1gm. The other two were less and we've been working our way up with our neurologist. Many things are much better like she can wear socks now, it is not so hard for her to get dressed in the mornings, she will take her pills without any resistance (usually), and she gets along with her sister about 50% of the time (instead of 10%). But she does not know what to eat but wants to eat constantly, she's quick to be emotional, irritated, irrational, unreasonable, she cries that she feels "pandas'y", has pain and "only feels really good when I'm in the water". It really is the only time she is truly happy, if she's in the pool.

 

I am worried about our next IVIG and don't know how long to wait after this one before getting another. I never thought I'd be worried about that since I waited so long to even get the first one. Anyway, reading the responses to your post to hopefully learn something myself. You are not alone, in case that helps.

 

Susan

[tapiash]

There is no doubt in my mind it was herxing as well as new exposures that caused an increase in symptoms post IVIG. Our son had 3 hdIVIGs approximately 8 weeks apart with his last treatment being over 6 months ago and even this last week we noticed a herxing response. Our son even improved in 3 to 4 week cycles which is similar to the well documented Lyme herxing cycle. In an effort to push towards 100% we've been rotating antibiotics similar to a Lyme protocol and currently we have no OCD and no TICS but an increase in mood liability due to the recent change of antibiotics. There is definitely 'worse before better', 'flipping of the pages', 'herxing' that can initially last weeks, then days, then hours, then minutes until all symptoms fade over time. NOW, when we make a change in antibiotics we see immediate improvement for about 48 to 72 hours and then there is a flair of symptoms until things settle out over days and then a baseline adjustment towards full recovery again.

 

I get the impression your son is not currently on any antibiotics. Please clarify......

 

You can purchase Bentonite Clay at IHerb for about $7 a bottle. My son drinks approximately 1 1/2 cups a day under the guidance of a nutritionist that has used the product for years with all of her clients. This amount is way above recommended dosage but its helped tremendously in our son's recovery. Here is the link to our nutritionists talk about Bentonite Clay on YouTube

 

My son is not currently on antibiotics. I am going to start him on Omega 3 tomorrow. I really didn't see a difference when he was on and or off. Its the steroid thjat made all the difference in the world. he took a 4 week burst. Its interesting about the clay, I have never even heard such a thing. It is amazing what I have learned since this PANDAS came into our lives. We are scheduled for another IVIG in 2 weeks. I wonder why my doctor ordered monthly. I called him but still have not heard back. I do not even know if the IVIG is going to be successful and we are already scheduled for another. Every night when I go to bed I thank God for everyone on this forum. I would be lost without you. Well, I am still kinda lost but that is just me. Does IVIG effect appetite. I cannot get my son to eat a whole lot of anything.

 

What kind of results does the clay have on the body? He is soo excited to try it. lol.

[tapiash]

<br>

<br>How do we know if our pandas children are being little turds or is it really pandas and they cant help it.  I have been so impatient with him lately. I dont' know what to do. I feel like a horrible mother.<br>

<br><br>This is us at our house too.  I am sorry you are experiencing this as I know first hand how awful it is.  dd8 had IVIG 3 weeeks ago and since she's doing so poorly, we are already scheduling her next one.  This will finally be 1gm.  The other two were less and we've been working our way up with our neurologist.  Many things are much better like she can wear socks now, it is not so hard for her to get dressed in the mornings, she will take her pills without any resistance (usually), and she gets along with her sister about 50% of the time (instead of 10%).  But she does not know what to eat but wants to eat constantly, she's quick to be emotional, irritated, irrational, unreasonable, she cries that she feels "pandas'y", has pain and "only feels really good when I'm in the water". It really is the only time she is truly happy, if she's in the pool.<br><br>I am worried about our next IVIG and don't know how long to wait after this one before getting another.  I never thought I'd be worried about that since I waited so long to even get the first one.  Anyway, reading the responses to your post to hopefully learn something myself.  You are not alone, in case that helps.<br><br>Susan<br>

<br><br>Suzan<br><br>It really helps to know that others are right there with me. I wish it didn't have to be this way but we have each other and we will get through this one day at a time.  My son has always been afraid of water but lately that is one place he is truly happy. He is growing a garden and when he is out picking vegetables he is pretty happy them too.  He is pretty OCD with his garden but it is also therapeutic for him. When you mentioned socks I giggled because my son finally will wear white socks. For the longest time he would only wear black. His feet sweat a lot and the stink was unbearable at times. Edited July 25, 2010 by tapiash

[sf_mom]

Bentonite will help to eliminate toxins in the body from die off, decreasing symptoms. The die off can increase symptoms or create a whole new set of symptoms - HERXING.

 

I don't even know how to say this but.................. you take a huge risk with your child not being on antibiotics post IVIG. His body is weak and if its intercellular 'anything' strep or lyme the chronic infection will not resolve with IVIG alone. Additionally, he will be exposed to new bacteria's (our son was exposed to strep about once every other week in the winter) and will not be able to fight them off. Is your Dr. recommending you take him off? I suggest you speak with a PANDAS expert immediately before you make any further decisions about antibiotics or additional IVIGs. If its Lyme the IVIG will be a temporary fix. Its very possible that the antibiotic he was on needed to be changed or combo'd with another to assist in his recovery.

 

Good luck and I pray you'll get some further direction on the antibiotics.

[smartyjones]

so how/where do you draw the line between herxing reaction and a true disintegration? how do you know when to step in with another intervention?

[sf_mom]

The only good answer I have is 'YOU'LL KNOW'. Herxing does resolve, with regressions they will keep adding to symptoms without improvement over weeks, not days. I can say for certain our second IVIG was needed. Our son was exposed to strep between week 5/6 post the first IVIG and it felt like almost every day he added a new symptom without improvement. The third IVIG was questionable because he was bouncing back on his own when we retreated him again. However, he did shed all OCD after that third treatment so it helped.

 

Even this week we've had a little herxing. We rotated antibiotics back to Azithromycin/Omnicef combo and added Mesosilver (natural antibiotic) after being on Omnicef/Rifampin combo for two weeks. Currently no OCD, no TICs.... but huge up swing in mood liability and complaints of 'just not feeling well and sore throat'. I suspect this will last at least a week maybe more. We manage by making sure he gets the right amount of sleep, eats timely, gets some exercise, good hot shower in morning, lots of bentonite clay, Advil (when needed), etc.

 

You can google Mesosilver and Lyme Herxing and find a lot of information. We hope 'some day' our son will only be on Mesosilver as a natural antibiotic and will post when we hit that point....

 

Another example that will hopefully help: My girlfriends son had strep (all titers are now normal), has bartonella and Ehrlichia still and started Biaxin 500 m.g./Rifampin 300 m.g. on June 28th and he is 50 pounds. The 3rd/4th week post the start of Lyme treatment is known to be very difficult. Right at the beginning of the 4th week he started obsessively cleaning the kitchen and cried if he couldn't... this lasted for two days, third day he only cried about not being able to clean but didn't do it. On the fourth day of the fourth week he walked around like 'Saving Sammy'.... eyes closed and arms out. He had never had any of these symptoms previously and all the symptoms have stopped now for about five days. We knew the symptoms would come, what they would be are never determinable and ALWAYS SCARY. When Herxing is happening you think it will never resolve but somehow it does.

 

-Wendy

Edited July 25, 2010 by SF Mom

[LNN]

Wendy,

When you refer to Pandas kids 'herxing" - is this your feeling or is there research that supports this? I'm not trying to be argumentative - it's hard to convey tone of voice in posts. I'm genuinely curious. Some of our Lyme-literate members have posted that strep does not produce a herx reaction. On the other hand, I know strep does produce the rash of scarlet fever due to exotoxins and die-off. But whenever I've googled herx, strep is never mentioned. I also believe (tho I'm not absolute) that my son's last episode - the one he was having as we headed into IVIG in June, was triggered by exposure, not by direct infection. And yet weeks 3-4 post IVIG were bad ones. In his case, I don't believe herxing would be responsible for his behaviors.

 

Curious if this herx discussion of late is "gut instinct" or based on what you've read somewhere.

 

Thanks,

Laura