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17 weeks post IVIg


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Hi all,

I wanted to post a quick update on our situation. My dd is post IVIg 17 weeks and is doing really great. Most of you know that after months of severe pandas symptoms, relocating back to the US and finding a great pediatrician, my dd had IVIg in November. She has had continued improvement, so much so that not only is she back in school, but I have started working again (and full time, at that!!) Things have finally turned around for her and our family. While I am still concerned that she could have a regression at some point, we are no longer on pins and needles. I check the boards here on a regular basis, but have been very busy. I would say that my dd is 99% back to her normal self, still a bit hyperfocused on things she likes (cartoons, video games, certain friends, etc) and a 'loud talker', her learning ability is coming back but the brain has had some catching up to do (math facts, etc). She is a voracious reader and excellent with spelling, very humorous and playful again. Before IVIg she began having bowel issues in addition to the usual pandas urinary issues and now all of that is resolved. We have had several household illnesses and she has not had any significant issues...except for a limited amount of time (30 minutes?) whereby she was not acting like her normal self...more like her pandas self (minus the OCD part)...and these were definately during times there were household illnesses. She does still have mild hand tremors, which she had prior to the sudden onset severe pandas symptoms, but as I've said before that I read that could be a 'soft sign' along with milkmaid grip, prior to symptom explosion. In her case, it was true.

Those that have questions on how we got to the decision to have the IVIg..... we had to. First...the steroid burst that Dr. K recommended worked and we felt we had confirmation that this would work. Thinking about the risk of IVIg vs possible benefit was all it took due to the severity of my dd's symptoms. She had a very severe case that in my mind was life threatening. We had tried antipsychotics and SSRIs, had all the labs, MRIs, Spect scan, EEGs to rule everything else out and nothing helped (meds only worsened her IMO). What helped our case.... finding the right pediatrician...seeing a pediatric rheumatologist to back up that IVIg was a possible treatment for her...and Dr. K's help with email and a telephone consult...he worked with us by sending his IVIg protocol. He was wonderful. Would I do IVIg again? In a heartbeat if the symptoms come back. I probably will not be able to do it the way we did it before so I will go to Dr. K next time and pay upfront...which is why I am going back to work while I can.

We are enjoying our dd so much now...we realized all those months (15) that we lost with her and now that we have her back every day is precious. I hope that you can all find this joy as well.

I've had a couple of emails lately asking for an update and so I wanted to post! I am thinking of all of you dealing with this. I will continue to post on the boards but am so tired this week from my first week back to work!!

regards,

amy s

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Amy,

thank you so much for posting that update. Is your dd still on antibiotics, which one, and what dose? Do you know how long you will continue with abs?

 

Thanks, my dd is still on Augmentin 250mg daily (70lbs). I want to keep her on prophylactic abx for the next 10 years at least...however, Dr. K recommended one year post ivig (and then re eval). We'll see what happens.

regards,

amy s

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Amy,

thank you so much for posting that update. Is your dd still on antibiotics, which one, and what dose? Do you know how long you will continue with abs?

 

My dd is around 70lbs and is taking Augmentin 250mg once daily. Dr. K recommends to have antibiotic therapy prophylaxis for one year and then re eval....however I want her on AB prophylaxis at least until she is 18-20. But, that's just me.

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