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DD is 7 and we just completed the first visit in the NIH study on PANDAS. There is a 50/50 chance she got IVIG. We won't find out for 3 months what she got, but if she isn't better in 6 weeks they will give her real IVIG. What should I be expecting if it was the real thing? She had one brief episode of dizziness and nausea within an hour or two of the 2nd dose completing and a couple of hours later had some shivering. The day after (today) she had a bad headache, but it was brief. Today (1st day after) she has had a few episodes of extreme hyperactivity. She's had huge mood swings, too. Her OCD for the most part seems improved, but it still has gotten pretty intense in the evenings. It's hard to know how to compare her symptoms to a normal day because life has been anything but normal this week - the world has revolved around her. She's had every fun activity imaginable available to her at NIH and we've been very, very busy causing extreme fatigue. The doctor here said to give it at least 2 weeks. It's so hard to be patient not knowing if she got IVIG or not.

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Congratulations on getting accepted for the study. We have not done ivig so I cannot speak about what you should expect, but just wanted to wish you all the best. Anxiously awaiting the conclusion of the study and the results. Did they happen to mention to you when the study will end and how soon the results will be published. Just curious.

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Thank you! It was surreal for my daughter to play cards with Dr.Swedo! We are number 28 out of 32 and the study has been going on for 2 yrs. It will depend on how long it takes to get 4 more kids in and then the 6 months of following them (at least that long- I'm not sure if they'll wait until the year mark). They did tell us that every child that has gotten IVIG so far improved.

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Wow-- great that you got in the study and great that they're seeing such success! Just wanted to let you know that both of my kiddos have had IVIG and with both kids we experienced an "it gets worse before it gets better" response in the several weeks following the treatment. I believe there've been some who've seen more immediate positive response, but it is very common for it to take a while to see the improvement (give it a month). It's also common to see some increase in symptoms or flare up of issues for a period following the treatment.

 

IVIG helped both of my kids. My son was complicated and he got sick again not long afterward and we've had some backsliding, so we have more work to do for him. He may need it again now that his tonsils and adenoids were removed and/or we may need to look further at what's causing him the recurrences, and whether it's all PANDAS or something else is in play. But, even with all of that, after the initial flaring up/out of whack stage calmed, we saw definite, marked gains (and others noticed a difference, even those who didn't know he'd had a treatment). My dd had PANDAS that went undiagnosed and untreated for many years so by time we found out it was PANDAS, she was so sick and debilitated by it she wasn't functioning in normal daily life. Now, post-IVIG, she's a thriving, happy kid able to live her life again. She's only had IVIG once so far, and has been on treatment dose Augmentin, and other meds only if/as needed.

 

 

Good luck to you!

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Thanks for updating! We have not had IvIg yet, so I can't offer anything except, good luck and its exciting to hear they are seeing success! I hope you did get IvIg but it sounds like either way you won't be waiting too long :)

 

Thenmama- would you mind expanding a little on your IvIg experience? How long did you see a backslide for in your kids? Also I was wondering, for personal reasons, if either of your children had tics? We are deciding on when to do IvIg and I am trying to determine if we should just do it now or wait until school is out for the summer. My dd has tics that get pretty bad and I would hate for then to get worse for the rest of the school year if we go ahead now. Thanks!

 

Please keep updating, Misty! Best of luck!

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DD is 7 and we just completed the first visit in the NIH study on PANDAS. There is a 50/50 chance she got IVIG. We won't find out for 3 months what she got, but if she isn't better in 6 weeks they will give her real IVIG. What should I be expecting if it was the real thing? She had one brief episode of dizziness and nausea within an hour or two of the 2nd dose completing and a couple of hours later had some shivering. The day after (today) she had a bad headache, but it was brief. Today (1st day after) she has had a few episodes of extreme hyperactivity. She's had huge mood swings, too. Her OCD for the most part seems improved, but it still has gotten pretty intense in the evenings. It's hard to know how to compare her symptoms to a normal day because life has been anything but normal this week - the world has revolved around her. She's had every fun activity imaginable available to her at NIH and we've been very, very busy causing extreme fatigue. The doctor here said to give it at least 2 weeks. It's so hard to be patient not knowing if she got IVIG or not.

 

Hi,

 

yay on getting into the study!

 

This is what we experienced with IVIG:

1) headache, some fever first 2-3 days after IVIG

2) "it gets worse before it gets better" increased PANDAS symptoms, irritability, some new symptoms (for example my dd had "altered taste sensation" for a short time post ivig)...things are rough for the first 2 weeks post-IVIG, then things slowly get better

 

I hope that helps. Maybe keep a notebook with symptoms and observations for the next several weeks (do they have you do that anyway?).

 

Are you giving anything like advil? benedryl? tylenol? while these are sometimes given to kids post IVIG.

Edited by EAMom
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Thanks EAMom and thenmama for sharing your experiences. We got home this afternoon and her OCD has been pretty bad again. She developed a new compulsion this week and it is sticking around. We've seen a couple behaviors we haven't seen since last summer. Hoping we're turning back the pages! One of her tics seems to be much better (maybe gone - too soon to tell) The other has been pretty mild today. She's had some pretty bad behavior things - anger and aggression and overly exuberant laughing. She had some nausea and stomach pain this morning on the way to the airport. I can't tell if that was anxiety about travelling or a possible side effect. I'm anxious to see how things progress now that we're home. I will be keeping a log of her symptoms - I've been doing that anyway since this flare began. I think the only thing they really want is for us to keep a log of her antibiotic doses.

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Good luck! I hope you got the IVIG this go round and don't have to wait! I'm not sure if there are any side effects associated with the placebo, but when my daughter had IVIG,we definitely ahd some nausea the first couple of days (she threw up the morning after the second dose -- just once) and she was a bit wired -- difficulty falling asleep for at least a week. I felt that within the first couple of weeks (days even), we had glimpses of the old her, but then also episodes of real PANDAS stuff and, with progress even, some very deep sadness (I attributed this to her coming out of the fog in some ways and then realizing herself how really bad she was and coming to terms with it). Between two and three weeks she really started to stabilize and from there on, the things that had been challenges for her started slipping away one by one pretty quickly. By six weeks things were very stable, she had shed most of her PANDAS behaviors, but we still had "bad days" about once a week and a couple of things she couldn't overcome. We're now 13 weeks out. I would say about a week ago we really felt like we hit 100% with her. We are still watching her like a hawk and are nervous, but are trying to enjoy having our girl back, at least for the time being! Good luck! I, too, have herad that the study has been very successful and my family certainly attributes my DD's progresst to he IVIG. I hope that it is successful for your child as well!

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Thanks EAMom and thenmama for sharing your experiences. We got home this afternoon and her OCD has been pretty bad again. She developed a new compulsion this week and it is sticking around. We've seen a couple behaviors we haven't seen since last summer. Hoping we're turning back the pages! One of her tics seems to be much better (maybe gone - too soon to tell) The other has been pretty mild today. She's had some pretty bad behavior things - anger and aggression and overly exuberant laughing. She had some nausea and stomach pain this morning on the way to the airport. I can't tell if that was anxiety about travelling or a possible side effect. I'm anxious to see how things progress now that we're home. I will be keeping a log of her symptoms - I've been doing that anyway since this flare began. I think the only thing they really want is for us to keep a log of her antibiotic doses.

 

What antibiotic and dose are they using?

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They left her antibiotic as it was - amoxicillin 500mg twice a day. They didn't want to rock the boat by making any changes. I don't think it matters too much to them which one they are on, as long as they are being protected from strep reinfection. Edited to add...I don't think they wanted to tamper with her symptoms because of the anti-inflammatory effect of beta-lactam antibiotics. If she was already fairly severe they wanted to keep things the same to get a true picture of whether she gets better or not.

 

Today was a really, really tough day. Her OCD is considerably better - it's probably at least 50% down...actually more than that. Her behavior is AWFUL. She was very hateful and aggressive today. She threw her socks and tennis shoes at me while I was driving. Her friends in her homeschool co-op kept looking at me, visibly confused with why she was being so bad. She stayed at my parents' house for a few hours this afternoon and was great. The minute she came home it all started back up. I am just really tired. I so, so hope this is "turning back of the pages". She's at the worst behavior level ever- the same as last summer when this all first started.

Edited by .Misty.
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They left her antibiotic as it was - amoxicillin 500mg twice a day. They didn't want to rock the boat by making any changes. I don't think it matters too much to them which one they are on, as long as they are being protected from strep reinfection. Edited to add...I don't think they wanted to tamper with her symptoms because of the anti-inflammatory effect of beta-lactam antibiotics. If she was already fairly severe they wanted to keep things the same to get a true picture of whether she gets better or not.

 

Today was a really, really tough day. Her OCD is considerably better - it's probably at least 50% down...actually more than that. Her behavior is AWFUL. She was very hateful and aggressive today. She threw her socks and tennis shoes at me while I was driving. Her friends in her homeschool co-op kept looking at me, visibly confused with why she was being so bad. She stayed at my parents' house for a few hours this afternoon and was great. The minute she came home it all started back up. I am just really tired. I so, so hope this is "turning back of the pages". She's at the worst behavior level ever- the same as last summer when this all first started.

 

Hang in there!! Hopefully things will get better in 2-6 weeks. :)

Edited by EAMom
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My daughter had IVIG twice. Both times she had headache and nausea for a few days after. After her first IVIG, we saw immediate improvement with all her symptoms. This is not a typical response. She did very well for a couple of months and then started to back slide. That was when we did the second IVIG. With this one she regressed immediately and we didn't start to see improvement until about 3 or 4 weeks post infusion. It was a very difficult month. We used Ibuprofen which helped some. Once the improvement started it was slow progress for many months but she made big gains eventually. I think it is different for each child, but most will see an initial set back followed by slow steady progress. Part of the progress (in my opinion), depends on whether or not there is still an existing infection. My daughter still had an underlying Mycoplasma infection and lyme. I believe that is why the first IVIG was not sufficient. She has been on antibiotics since her IVIG's. For my daughter, there is still more progress to be made, but we have come a long way since the initial diagnosis 2 years ago. If we had the money (we had to pay out of pocket), I would do another IVIG this summer, but our insurance won't pay.

 

I think it's great that you got in the study. I hope that you see some improvement soon. Hang in there...this is a tough time either way you look at it. Sounds like you are doing all the right things for your daughter. Please keep us updated on how things are going.

 

Dedee

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Headaches are so classical post IVIG infusion. I have to say if your daughter is part of a double blind study, it bothers me that they would NOT tell you precautions post infusion - even though thats a give away

that she may have had it. But the headaches can be brutal! I have to give my son Motrin several times a day, plus, small doses of Benadryl for days and bedtime. It can also give a child a stomach upset. As well they need lots and lots of liquids post infusion! They need it, because the Gumanex is very thick, like syrup and you want it to saturate better with fluids.

Anyway, good luck..

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