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DD getting lVlG today @ Mass General Boston!


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so, a little history. DD had pancreatitis earlier this year. it was pretty severe, 3 days in ICU and a total of 8 days in Childrens Hospital Boston. She had just started Biaxin so they thought that might havr been the trigger but honestly they had no clue. 6 weeks later we headed to Dr K for her first lVlG treatment. After a few days really bad headaches and nausea. Started prednisone which helped, eight days later she had pancreatitris again. Looking back I started thinking perhaps the prednisone was triggering the pancreatitis. (she also did a burst before starting the Biaxin)

 

She got 70% better, it was amazing. Week 10 post lVlG she started slipping about 10%. Then she had swollen glands and some congestion,she did not get worse but thought i would mention it. she started begging for more lVlG. She is almost 18 and wants some control over medical decisions. Can't really blame her.

 

So now fast forward..we are having lVlG done inpatient. Running lVlG very slowly, 21 hours each day for 2 days. Running continious fluids as well. Hoping this will avoid bad side veffects. I will keep you updated.

 

DD (Drew) is all about spreading awareness. She has been giving the entire staff here quite the education on PANDAS.

 

So here is the part only a PANDAS parent will understand and find humor in...Drew's OCD all revolves around a vomit phobia. We checked in to the hospital last night because they were going to start lVlG at 7AM. Her roommate starts getting sick at 6PM last night. Dry heaving constantly. Drew tried covering her ears but that did not last too long. Roommate assures her she never throws up just heaves. Drew leaves the room and finds the nursing station where she insists on changing rooms. (very politely I might add). We switch rooms and start to relax. Then at midnight new roommate starts vomiting!! Now there are no more beds to be had,no rooms to switch to. Drew finally comes back into room and roommate feels better. Extra dose of klonopin and Drew falls asleep only to wake at 2AM to sound of vomiting again! That was it for her, spent the rest of the night on a cot in the parents lonuge and I slept in her bed. Now a year ago when she was doing ERP at OCDI showing her a picture of vomit sent her into a panic attack and pulling out her hair. We were able to laugh at all this , only thing that brought her this far was lVlG. Roommate just mentions she is not feeling well again and Drew is ok staying in this room..

 

Thanks for all the prayers and well wishes we really appreciate them . This forum has taught me so much and we are truly thankful. We will continue to pay it forward.

 

((hugs)) Tiffani

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@ Vickie--roommate is having crohns flare up and possible infection from stoma. I know she is not contagious. She is vomiting from the antibiotic which does not agree with her.

 

@ Kiera- we saw slight changes after a few days. Less rigidity,less panic ,less ocd.

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I pray that your dd is doing better!! I just wanted to make a comment on the vomiting. Dd stressed out after she had threw up last year. But I pull out some hello kitty pajamas the other day b/c she said she had nothing to wear and she said " I don't like those". They remind me of when I through up and does not want to wear them . I think she threw up eight months ago!! Really! She does not like to be around people who through up bc she thinks she will. Interesting.

Mar

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Same here with the vomiting fear - it is one of my DS14's biggest OCD fears, always has been. We can't even talk about vomiting. It seems like a lot of people report this about their PANS kids. My son also won't wear/use anything that reminds him of a time when he vomited, even if it's years later.

 

Hope the IVIG went well. My DS14 is waiting for approval from insurance for IVIG - hasn't had it yet. I'm encouraged by your story that it is helping your 18 year old daughter. I read a lot about younger kids getting help from the treatment, but not too much about teens.

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@mdmom-are you a dr or from MD? who will be doing your lVlG? Would you mind sharing how they are coding it to get coverage, it may help others? I have heard it done as post infectious encephalitis and also as auto-immune encephalitis. we are lucky,we have United ,you can just say PANDAS.

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Hello all,

 

I am new to this forum and to commenting on any blogs/forums sites so I apologize if I do something wrong or not post correctly. Anyways, I have a 15 yr old son who has OCD/Tourette's/learning disability and PANDAS (not sure if without the PANDAS, he wouldn't still have some of these conditions but not as bad). It's hard for me to say whether or not every bout of his tics, rages and OCD/anxiety are from a strep infection because it took us a very long time to put the pieces of the puzzle together. Long story short, my son has been in and out of specialty Drs. since he was 5 and he is now under the care of Dr. B in CT which my insurance won't cover and it's kind of far and inconvenient. However, I will do whatever must be done to get my son relief (hopefully LONG term) but I'm interested in knowing more about Dr. Pasternack in the Boston area. Minimaxwell, I noticed your posts about your daugher who is also a little older than the norm of patients with PANDAS and I was wondering if you could tell me when her symptoms started and how many years she had them prior to her IVIG. I have a feeling we'll need to go that route as well but there's now ay we can do it in CT. Please shed some light on which direction we should go...my son is on a high dose of Biaxin, aumentin, chlonodine for tics, sm amount of zoloft for OCD, etc. ALSO, he has a VERY high yeast count in his gut but will not adhere to a sugar free diet or gluten free or casein free as he should be. :) Thanks in advance. All of your posts have helped me and I've finally gotten on the bandwagon!

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