IVIg for PANDAS 7 days ago, almost no improvment, what next?

[DsMom]

My 12 yr old had IVIg 7 days ago (his 2nd time, first was futile due to an active Strep infection we were unaware of). His symptoms are maybe 5% better regarding the mental state, but his main complaint is all over body itching, and it seems to have ramped UP since IVIg. Is that all we have to look forward to for him? What do other parents do when IVIg doesn't give thier kids any relief? Do it again? Our doc, who we really like, has only done plasma xchnge 1 time, and with 'disasterous results' per her comment.

My son is primarily tic impacted (twitching and jerking, weird growling voiced statements about how itchy he is and that he needs to 'squish something' with wild eyes and facial contortions(Tourettes?)and non-stop itching that moves constantly all over his body which isn't dermatological, or histamine related, at least it's not remotely impacted by anti-histamines, and it's not anxiety induced either as has taken Valium to see if any impact, and itching became worse for him to manage). He's been on antibiotics non-stop since 4/12, had his tonisils out, and still he and his dad keep testing testing pos for Strep. He's had 3 clean rapid tests in a row, so in we ran for IVIg...but here we are a week later and I'm so bummed because it's not seeming to have helped him much if any.

We have tested for every co-infection we can think of, of course the TBDs have all come back negative and now since IVIg I guess he won't test accurately anyway. Sigh.

Anyone got any advice for a really worn out and sad parent(like a lot of you)not willing to give up, yet not certain of where to go now?

[beeskneesmommy]

I often hear that kids get worse before they get better after IVig. I know it must be excruciating, but try to hang in there a for a few weeks and keep him as safe from Strep as you can. Was his father medicated with long term abx as well? If he also has Strep issues, it would be a good way to go. I am on Augmentin right now for 30 days (my 3rd run) to mak sure the Strep is knocked out of me prior to my son's 1st IVig in a couple of weeks...

[nicklemama]

In my experience, 7 days is way too early to be counting on anything other than very small progress. Ivig is not a quick fix. It takes a long time. Dr K says you should see significant improvement by 3 months post and that was our experience. It wasn't overnight and it took a while. You will still have healing over the course of a year post ivig. Dr K will tell you that it takes a year to see what you will end up with. That was our experience, as well. You will see flares along the way, too, whenever your child is sick or exposed to strep.

[DsMom]

Thank you both so much for the positive words. It is SO helpful to hear that other families didn't see immediate results, but did see positives in time. So many stories that I have read over the last 9 months where parents see immediate and dramatic changes from IVIg in 2 days, in 4 days, etc., it is just scary not to see him get any relief, just getting worse.

BeesKnees - I hope that you are free from strep and that the IVIg process goes super smooth and is very successful for your child, just like Nicklemama's child had positive results over time.

After I posted I did read on Dr. K's website that in children over age 10 IVIg is often times a much slower fix than with children under age 10. I hadn't heard that kids get worse before they get better, but if thats how some of them go; wow,we are in that catagory! Today was just horrible, in fact we are going back in to test for another Strep infection day after tomorrow just in case the 'on button' has been pushed yet again.

Dad has been on either Augmentin or Clindamycin non-stop since April just like our son, but there was 1 week in there that he backed off and whamo - they both tested pos for Strep. It's maddening. My thanks to both of you for the boost in my spirits, it's huge when you are having a hard time seeing the light at the end of the tunnel.

 

[EAMom]

Thank you both so much for the positive words. It is SO helpful to hear that other families didn't see immediate results, but did see positives in time. So many stories that I have read over the last 9 months where parents see immediate and dramatic changes from IVIg in 2 days, in 4 days, etc., it is just scary not to see him get any relief, just getting worse.

BeesKnees - I hope that you are free from strep and that the IVIg process goes super smooth and is very successful for your child, just like Nicklemama's child had positive results over time.

After I posted I did read on Dr. K's website that in children over age 10 IVIg is often times a much slower fix than with children under age 10. I hadn't heard that kids get worse before they get better, but if thats how some of them go; wow,we are in that catagory! Today was just horrible, in fact we are going back in to test for another Strep infection day after tomorrow just in case the 'on button' has been pushed yet again.

Dad has been on either Augmentin or Clindamycin non-stop since April just like our son, but there was 1 week in there that he backed off and whamo - they both tested pos for Strep. It's maddening. My thanks to both of you for the boost in my spirits, it's huge when you are having a hard time seeing the light at the end of the tunnel.

 

 

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better.

 

Have you tried quecetin for the itching?

 

When did the itching start?

 

Could the itching be related to some kind of a food allergy?

[mdmom]

Itching makes me think that parasites could be involved. I'm not sure how to test for these. My daughter had itching and our LLMD diagnosed her clinically with parasites. She did a 2 month parasite protocol and the itching stopped.

 

Can anyone chime in on how to test for parasites?

[PowPow]

ivig did not make a quick improvement in our 12yo. however besides continuing an antibiotic protocol that had been in place for nearly a year pre-ivig, there were no medical interventions after ivig. a year later she was in a good place, and came to a much better place after intensive ERP.

So, I do think it helped quite a bit, just took a long time.

our pandas doc said the same thing for age and ivig,-the younger, the quicker the healing.

[PowPow]

could the itching be:

nerve based?

my child had severe itching in certain spots, it was recognized as some kind of neuropathy, and she was given Lyrica. It was very helpful.

 

anxiety?

Valium had ZERO effect.on my child. Drugs and brains work differently, so maybe trying a different med may help. Atarax or vistaril?

[bulldog24]

my son had his 3rd IVIG 3 weeks ago and he has been a horrible OCD disaster since getting it. I was warned that he would get worse for a few weeks. The first 2 this didnt happen. I spoke to the infusion center yesterday and they said this is a good sign ots doing what it should.

 

Did your child have any positive lyme bands? The itching could be a neuropathy. I have Lyme and get allkinds of creepy crawlies and itchies for no reason. I BELIEVE (but not positive) that IVIG can help this. I also take meds for the neuropathy. I dont know what they can use for kids with neuropathy, but I use cymbalta. Other drugs like neurontin can help.

 

BTW I think my son was SLIGHTLY less ocd yesterday and hoping that things will improve from here. But I agree with others 7 days is too early to judge. You might start to see a good day here, 2 bad days etc.. its a rollercoaster

[bulldog24]

we were also told to give Ibuprophen 2x a day. maybe this is something you can try?

[sf_mom]

Widespread itching that typically worsens at night can be a sign of the liver being too toxic. It is also sign of neuropathy or infections like others have stated. I too have had horrible itching along with my older son we both have Lyme et al (chronic infections). The IVIG 'might' be causing a toxin dump and hence the liver is overloaded. You could try some detox specifically for the liver and some Bentonite Clay (liquid, 1/4 cup at bedtime 2 hours away from antibiotics) which will draw toxins from bile to see if it helps with itching. Whole Foods carries the Great Plains - Bentonite Clay. It is tasteless but texture is funny.

 

I feel for your son, the itching is a horrible feeling.

[EAMom]

my son had his 3rd IVIG 3 weeks ago and he has been a horrible OCD disaster since getting it. I was warned that he would get worse for a few weeks. The first 2 this didnt happen. I spoke to the infusion center yesterday and they said this is a good sign ots doing what it should.

 

Did your child have any positive lyme bands? The itching could be a neuropathy. I have Lyme and get allkinds of creepy crawlies and itchies for no reason. I BELIEVE (but not positive) that IVIG can help this. I also take meds for the neuropathy. I dont know what they can use for kids with neuropathy, but I use cymbalta. Other drugs like neurontin can help.

 

BTW I think my son was SLIGHTLY less ocd yesterday and hoping that things will improve from here. But I agree with others 7 days is too early to judge. You might start to see a good day here, 2 bad days etc.. its a rollercoaster

 

okay Lyme experts...anyone heard of itching during taking a shower (this is one of many strange symptoms) being a Lyme symptom? This is for a friend's dd. I think swimming pools are are okay...so I'm not sure if it's the heat or the pressure from the shower (or something else).

[Mary M]

Our experience was that improvement post IVIg (we have done 2) is along haul...weeks if not months. It is extremely difficult to be patient after IVIg.

[EMT2000]

Thank you both so much for the positive words. It is SO helpful to hear that other families didn't see immediate results, but did see positives in time. So many stories that I have read over the last 9 months where parents see immediate and dramatic changes from IVIg in 2 days, in 4 days, etc., it is just scary not to see him get any relief, just getting worse.

BeesKnees - I hope that you are free from strep and that the IVIg process goes super smooth and is very successful for your child, just like Nicklemama's child had positive results over time.

After I posted I did read on Dr. K's website that in children over age 10 IVIg is often times a much slower fix than with children under age 10. I hadn't heard that kids get worse before they get better, but if thats how some of them go; wow,we are in that catagory! Today was just horrible, in fact we are going back in to test for another Strep infection day after tomorrow just in case the 'on button' has been pushed yet again.

Dad has been on either Augmentin or Clindamycin non-stop since April just like our son, but there was 1 week in there that he backed off and whamo - they both tested pos for Strep. It's maddening. My thanks to both of you for the boost in my spirits, it's huge when you are having a hard time seeing the light at the end of the tunnel.

 

 

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better.

 

Have you tried quecetin for the itching?

 

When did the itching start?

 

Could the itching be related to some kind of a food allergy?

 

Itching was really his first PANDAS symptom after painful ears, it felt like it fell out of the sky on him overnight, and it's not ever gone away (9months) while all the OCD anxiety stuff has roller coastered all over the place since then, but the itch seems to always be there, although it does go up in intensity as well, but its always bad. It moves all over his body, constantly, and a Neurologist we saw said he thought it was a tic and an excess of energy in his brain being released, and my son just 'reads' it as itching. We really dont know of course. We tried Quercetin about 2 months in, but no luck. He also did a really intense food elimination diet, no luck. Thank you so much for sharing your experience re/ recovery and time line on IVIg, so helpful to hear others experiences.

[EMT2000]

we were also told to give Ibuprophen 2x a day. maybe this is something you can try?

We have done an Ibuprofen therapy on its own, months back, and during both IVIg's Ibuprofen every 6 hours and then for the following 7 days as well. I think that's more to prevent headache and such....