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MUCH milder episode today between 1st & 2nd infusions of IVIg


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My DD11 had her first IVIg infusion last night. It was 1g/kg and she will receive the same again tonight for a total of 2g/kg.

 

She had an episode today, but there was no violence, no thrashing and no limp phase. Also, it was fairly short-lived.

 

I don't want to expect too much, too soon... is it typical to see such dramatic improvement so fast??? I thought there was actually a period of worsening for them first, before they improve over a few weeks and months.

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I have heard that some people have pretty drastic, instant results. Like I mentioned in another post, ours took a while. We did notice a change in one of her OCD behaviors the day after the 1st ivig. We got all excited, then all ###### broke loose a week later. I am not telling you this to discourage you, all kids are different, but I do like to let others know so they can prepare themselves if it does happen, and also to give hope if if brings you that far down. For 2 straight months after 1st ivig we felt so hopeless and desperate. That is when I really learned to live one day at a time, I was thankful that we made it at the end of each day, and at the same time scared to start the next. It did get better though. So glad to hear that things have calmed a little, maybe your little (or big) Christmas gift :) Hope things only get better from here!

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Thanks Priscilla... I'd really prefer to know the truth about people's results so I have some idea of what to expect and our family is prepared. I thought I remembered that there can be a really bad spell following the beginning of therapy & I really want to know, one way or the other what people have experienced. I appreciate your honesty - Merry Christmas! :)

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YES. We noticed changes between day 1 and day 2 of IVIg. When you have a very severe case, I think the changes that you see are extreme. However, please know that we continued to see changes for many many months post IVIg. In our case, our dd is doing wonderfully more than 2 years post IVIg and I really hope that your child will as well.

Happy Holidays to all!

Regards,

amy s

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Did they use soumedrol?My DR believes that is why things are so good after the IV.Glad to hear it went well.IV on Xmas??

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I am so glad for you that she's doing well. I believe that you said that she's diagnosed with Primary Immune Deficiency? If that's so, does she need to keep getting the IVIG every 21 days? Also, will she continue on abx? I know that continued abx for my children has made all the difference, especially my son who was suicidal and depressed like your daughter, and the abx (like your IVIG) worked overnight. It was miraculous. I would suggest that you talk to your doctor about continued care. As I recall, you are scheduled to see Dr. B? If so, that's good.

 

Happy Holidays. You and your daughter deserve it.

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Yes - we saw a difference too. The healing isn't linear however, at least it wasn't for us. But - my ds had a throat clearing tic disappear after between day one and two, and ont he afternoon of the first day was VERY happy - and had not been truly happy for a long time. I thought coincidence and wishful thinking at first, as he did have ups and downs, but it did start immediately.

 

Best to you!

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I can't say my DD ever got worse after IVIg but she did have a slow saw-tooth healing after the first infusion and it took exactly 10 weeks to see a major difference. But the wait was well worth it!! Her daily violent rages stopped completely for a year and her motor/vocal tics, which were REALLY bad, also stopped permanently. She started sleeping in her own bed for the first time in 10 years and came off Risperdal also for the first time in 10 years. Her grades went from Cs and Ds to As and Bs and she started making friends for the first time. REAL friends!

 

Her OCD and anxiety, however, was never helped by IVIg. In fact, it got worse. The healing during the second high-dose infusion was even more difficult. But again, it took exactly 10 weeks to see major improvement. This time we switched DD to Augmentin XR and a month later tried a month-long tapered prednisone. That may have helped to kick her back into remission but hard to say since this was the 10-week point.

 

The third high-dose infusion was a completely different experience. By then DD had already been dx and treated with Lyme disease for 48 days. I saw positive results immediately and we have not had that same saw-tooth healing that we experienced before. I even saw a decrease in DD's anxiety and OCD for a few days. Unfortunately though she was sneaking candy canes at school and dyes make her worse. Now that she is away from school she does not seem nearly as anxious.

 

Right now we are at my parents and they are truly AMAZED at the difference in DD in just the past month. They said they have never seen anyone change so fast. She's so engaged in conversation, self-controlled, and very aware of how she affects others.

 

So hang in there...IVIg can be a life changer! But please keep mind, you also need to make sure she is on the right abx and high enough dose. You don't want another severe exacerbation to mess up all the good you are doing. AND, most of all, you want to be sure another co-infection (like Lyme, Babesia, Bartonella, Mycoplasma, Ehrlicliosis, etc) is not preventing you from clearing the PANDAS completely.

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Yes Melanie, she had her second infusion starting around 10 pm on Christmas Eve, so it ran over into Christmas morning. They continued the D5 with 20% K after that until she was discharged later that morning. No, they did not use Solumedrol or any steroids in her case as her Ig levels are already low so they are trying to avoid the use of steroids.

 

Yes, we will see Dr. B in early Feb and I will be calling about five-six on the medical team this morning... depending on who I can reach - we had a snowstorm & many places are closed, so I may have to try over the next couple of days to reach them.

 

I do not yet know about the continuation of IVIg or antibiotics. The pediatric neurologist who covered for hers told me that he doesn't make that call & that this one would last 4 weeks... given that and because our own immunologist said she would need it once a month before she was hospitilized and she is dramatically improved, although not all the way better, I anticipate it will be continued. As for the antibiotics, I suspect they will be consulting with Dr. B on that one as well to determine what is best in her case. For the last several months, she has not cleared a strep test (still waiting for results of titers), so she has been on them for months, but we only recently learned of the Immune deficiency, so that may drive things more. Immunologist said she may be showing signs of early PIDD.

 

So, a couple days after we got home, she is still having episodes, but they are not nearly as severe or long lasting - definitely a very dramatic difference from a few days ago. The aggression, when it happens, is more half-hearted now; not intensely determined like before.

 

She's still flat on her back today due to the reaction from the spinal tap - bad headache & lots of nausea, but no vomiting so far today. Hopefully, she will be able to eat some today - she's felt too sick to eat much of anything last few days.

 

We also learned that her LFT is about 2.5 times normal, so we are hoping that comes back down - they repeated those labs before we left Saturday. He thought it was probably due to the SubQ Ig and/or the Ibuprofen - she was taking 300 mg BID - TID.

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Thanks Nancy... we must have been posting at the same time! lol Yes, I anticipate high dose antibiotics for a while - Dr. B in CT will likely be driving most of her care now... we're cautiously optimistic at this point. :)

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I am glad things are going better...and it must feel nice to have a plan..and relinquish some of the "what next" to a doctor...

 

Amy and Nancy...i caught your recent updates and i appreciate that you added some of the details on the journey...thanks

Not that i'll remember in an hour from now :blink:

Edited by Fixit
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Hi Denise

Congratulations on the improvement, that is so hopeful.

 

In our office, while doing IVIG for PANDAS kids, we have seen 2 children experience some positive results between days 1 and 2, one of them having an extreme reduction of chronic debilitating anxiety, and one having an experience of feeling "in control" in a way he could barely articulate and had not felt before or at least in a very long time.

 

I appreciate what norcalmom said about the non-linear nature of the healing post ivig so continue to try to not over expect. In fact, I did not expect anything for weeks or months post ivig for my DS. He did not see any difference between the days but over the course of just one week his tics noticeably reduced and he has continued to have overall improvement. Now one month post ivig, I can see his mood and confidence just being better, and a tic flurry this past week after several consecutive weeks of improvement, and now better again following a cranial adjustment session.

 

All in its own process, but at least, early on, experiencing hope.

Good luck with it!!

amy

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