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two weeks post IVIg


amy s

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Today is two weeks since my dd had her first day of IVIg. The first week was hard...as was the IVIg itself due to rages. She had several difficult to handle meltdowns and had a strange bout of constipation which because of the discomfort, things were more difficult, I believe. The second week (all last week) we had a house full of family visiting type chaos so we weren't sure if we were seeing improvements or not but each day did get better. Currently she has zero OCD stuff going on and the emotional labilty is much much less. The rages are gone, in fact all my bruises have healed for the first time in a very long time. She has had a few moments of just mean behavior which was able to be gotten under control by basic parenting. Last night we were able to have one of my older children (age 22) babysit so we could go Christmas shopping and out to dinner. That was the first time we felt safe (for everyone) for someone to babysit her in months and months....well really since April and May 2008 when she was having a spontaneous remission. She seems happy almost all the time, just like she used to before August 2007.

 

So it is nice right now. I am glad we did the IVIg but it is disheartening to hear some of the stories about behaviors coming back. I'd like to be hopeful that this will all be gone and stay gone but I guess I'll just stay on pins and needles until I know something more. She's still not in school. We have been picking up her classwork and homework and trying to work on it when we can. Her new homebound teacher called today and will start coming tomorrow. She will be here 3 times per week for one hour each visit. Hopefully it will work because my dd doesn't always do the best in the late afternoons.

 

regards,

amy s

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  • 2 weeks later...

Hi all-

Just a 3 week post IVIg update and I'm happy to say that my dd is doing great. She is so calm and happy most of the time. ZERO OCD and her hand tremors are so much better. Emotional lability is still a bit there, but mainly she just has some tears and need for reassurance. NO rages whatsoever. She is working so hard on school work (here at home, still) and is reading chapter books and doing math, happily. She is switching gears easily. Sometimes at night having some sleep issues and therefore some fatigue issues during the day at times. But no night terrors or anything like that.

 

Homebound school is going ok. The teacher comes out for one hour 3 times per week, but basically just does the testing with her (spelling tests, math tests, formative testing that she's missed while at home) And so that leaves it to me to teach new content. Luckily it isn't that hard yet. But there is enough to keep us busy almost all day long until about 5pm, with short breaks through out the day. She's wanting to get back to school soon and since she's doing so well lately that I kinda wish I could send her but the agreement is to wait and reassess her on Jan 8th. We are going out to her classroom to bring some Italian traditional Christmas cake "Panettone" and read a book to her classroom about the cake called "Tony's bread"...we've got that set up for next wednesday, Dec. 17th. Hoping that will bridge the gap and get her excited to see her friends in school again and vice versa.

 

Basically we are really enjoying her. I hope this keeps up.

 

Ok, well that is about if for my dd's update this week. I'll keep you posted.

regards,

amy s

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Hi all-

Just a 3 week post IVIg update and I'm happy to say that my dd is doing great. She is so calm and happy most of the time. ZERO OCD and her hand tremors are so much better. Emotional lability is still a bit there, but mainly she just has some tears and need for reassurance. NO rages whatsoever. She is working so hard on school work (here at home, still) and is reading chapter books and doing math, happily. She is switching gears easily. Sometimes at night having some sleep issues and therefore some fatigue issues during the day at times. But no night terrors or anything like that.

 

Homebound school is going ok. The teacher comes out for one hour 3 times per week, but basically just does the testing with her (spelling tests, math tests, formative testing that she's missed while at home) And so that leaves it to me to teach new content. Luckily it isn't that hard yet. But there is enough to keep us busy almost all day long until about 5pm, with short breaks through out the day. She's wanting to get back to school soon and since she's doing so well lately that I kinda wish I could send her but the agreement is to wait and reassess her on Jan 8th. We are going out to her classroom to bring some Italian traditional Christmas cake "Panettone" and read a book to her classroom about the cake called "Tony's bread"...we've got that set up for next wednesday, Dec. 17th. Hoping that will bridge the gap and get her excited to see her friends in school again and vice versa.

 

Basically we are really enjoying her. I hope this keeps up.

 

Ok, well that is about if for my dd's update this week. I'll keep you posted.

regards,

amy s

Hi amy s,

 

I am new to this site and had a question for you. I saw that you have a civilian military dr. We are a military family as well, and I feel very strongly that my son may have PANDAS. I emailed Dr. K and he agreed that my son fulfilled all the criteria for PANDAS. I am going into the PED. clinic tomorrow to discuss all of this with a "seasoned' Pediatrician. I printed out much from Dr. K's website, as well as his email to me. My question is this. Did your insurance ( I am assuming that you are military) pay for the ivig treatment that your little girl went through? I am so encouraged by her success so far. My son is 9, and therefore close to the age that ivig does not work as well, so I feel like I have no time to lose.

 

Thank you so much,

Chris w

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Chrisw-

Hi, I'm so sorry to hear that your child is ill. I do not know if Tricare would cover the expense. I doubt it. But I will tell you one thing that I think I could have won to get reimbursement, if it came to that. It is important to have as much documentation as possible in case that could happen.

I have sent you a private message. good luck to you and welcome to this site. I hope our stories have been some help to you. Someday when you can please share your own.

regards,

amy s

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I am so happy to hear your daughter is getting better. Please keep us posted. It sounds like you have some fun things planned. We are Italian too. I pray she remains well and you can continue to enjoy the benefits of the IVIG. Happy Holidays.

Hi all-

Just a 3 week post IVIg update and I'm happy to say that my dd is doing great. She is so calm and happy most of the time. ZERO OCD and her hand tremors are so much better. Emotional lability is still a bit there, but mainly she just has some tears and need for reassurance. NO rages whatsoever. She is working so hard on school work (here at home, still) and is reading chapter books and doing math, happily. She is switching gears easily. Sometimes at night having some sleep issues and therefore some fatigue issues during the day at times. But no night terrors or anything like that.

 

Homebound school is going ok. The teacher comes out for one hour 3 times per week, but basically just does the testing with her (spelling tests, math tests, formative testing that she's missed while at home) And so that leaves it to me to teach new content. Luckily it isn't that hard yet. But there is enough to keep us busy almost all day long until about 5pm, with short breaks through out the day. She's wanting to get back to school soon and since she's doing so well lately that I kinda wish I could send her but the agreement is to wait and reassess her on Jan 8th. We are going out to her classroom to bring some Italian traditional Christmas cake "Panettone" and read a book to her classroom about the cake called "Tony's bread"...we've got that set up for next wednesday, Dec. 17th. Hoping that will bridge the gap and get her excited to see her friends in school again and vice versa.

 

Basically we are really enjoying her. I hope this keeps up.

 

Ok, well that is about if for my dd's update this week. I'll keep you posted.

regards,

amy s

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Today has been one month since the IVIg treatment on my dd so I thought I would give an update. My dd is doing great and continues to be off all antipsychotics. She has very low level OCD symptoms that crop up once or twice per day, very low level anxiety that is hanging around but absolutely NO rages since the week of the IVIg. Her temperament is very happy almost all the time. She does have some emotional times but those are becoming increasingly rarer each day and she does have some issues at night time such as difficulty falling asleep but this is not a huge problem. She continues to have very mild hand tremors, too. I would say she is about 90-95% (?) back to her baseline. She had a follow up with her doctor today and it was lovely because we just didn't have anything to say! Yesterday we went to her school and brought the panettone to school and read the story to her classmates. Since she's been out for this past month or so, she was greeted very warmly and the kids were all so happy to see her and it made her feel good :o which made me feel good too. She says she feels like she is able to go back to school and so when we meet Jan 8th for the re eval (hopefully everything will continue to go well) hopefully she can go back to school. I'm thinking of starting with half days for the first week. She still seems awfully fatigued at times. Did anyone else who's had IVIg have fatigue issues a month later? Perhaps it is just the nighttime sleep issues causing her trouble during the day.

regards,

amy s

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We are just slightly over 1 month post IVIG (4 1/2 weeks). I haven't noticed fatigue. My sons symptoms are somewhat better, but only about 40%. He is 10 and Dr. K said 8 -12 weeks for him and that tics are the most stubborn to go-my sons main symptom. He still has light sensitivity that worsens tics and nighttime separation issues. Hoping that he will continue to improve over the next couple of weeks!!! Glad to hear all is well over on your end.

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We are just slightly over 1 month post IVIG (4 1/2 weeks). I haven't noticed fatigue. My sons symptoms are somewhat better, but only about 40%. He is 10 and Dr. K said 8 -12 weeks for him and that tics are the most stubborn to go-my sons main symptom. He still has light sensitivity that worsens tics and nighttime separation issues. Hoping that he will continue to improve over the next couple of weeks!!! Glad to hear all is well over on your end.

 

 

bmom- thanks for your reply. I hope your son continues improving!! Is he in school all day? Maybe the fatigue is just something my dd has because of the waking up at night so much. She always just wants to come into our bed and 'snuggle'. I bet that is nighttime separation in which you speak of, except in my dd own way. My dd is 7 and since IVIg she hasn't been in school. She could take a nice long nap every day if we let her and also she doesn't wake up bright and early like she used to. She was always an early riser, before. I will keep your son in my thoughts.

regards,

amy s

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Hi, Amy:

 

Our son had IVIG about 10 weeks ago (early October). He's doing much better than pre-IVIG, but he has also frequently complained of fatigue. Worse on some days than others... and probably related to sleep difficulties he still has to some extent (trouble staying asleep). In the evenings, he's usually run-down and symptoms worsen. We figure (or hope) that his body is working harder to heal the damage to his brain, and that's tiring him out.

 

And bmom, hang in there! Our son is 12, so we got the same caution from Dr. K that recovery will take longer. After a month, we were probably at about 50%; at 10 weeks, I'd say we're now up to about 70-75%. Slow progress, but fairly steady (with minor ups and downs). Waiting is torture... but I believe our kids are on the road to recovery! Please let us know how things progress for your son: since both our boys in that older range, we'll be very interested to compare notes.

 

 

We are just slightly over 1 month post IVIG (4 1/2 weeks). I haven't noticed fatigue. My sons symptoms are somewhat better, but only about 40%. He is 10 and Dr. K said 8 -12 weeks for him and that tics are the most stubborn to go-my sons main symptom. He still has light sensitivity that worsens tics and nighttime separation issues. Hoping that he will continue to improve over the next couple of weeks!!! Glad to hear all is well over on your end.
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Thanks for the encouragement Worried Dad. Has your son stopped the screaming tic? Does he have any tics left or is he tic free now? I am sooo glad to hear the 75% improvement. I do believe he is improving a little at a time. Amy- my son has never complained of being tired and then after I posted later in the day, he said something about being tired at school. Hmm... he doesnt really seem tired though! He has always stayed in school. I took him out for 2 weeks in 2nd grade when the tics first started and were bad 1 1/2 yrs. ago. I have him stay home off and on because of tics here and there, but his attitude has always been really good-no problems, but tics, some anxiety, and night time separation. Well, a little daytime, but not about going to school. Most of the stuff, his friends dont even realize.

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Hi, bmom:

 

Unfortunately, the vocal tic has not gone away (it's a shrill, high-pitched screech that frays all of our nerves when it hits). But it has diminished somewhat in the past week or two. The motor tics are rare; when he's very tired, they sometimes surface, but they're much milder and less frequent than when he first got sick.

 

 

Thanks for the encouragement Worried Dad. Has your son stopped the screaming tic? Does he have any tics left or is he tic free now? I am sooo glad to hear the 75% improvement. I do believe he is improving a little at a time. Amy- my son has never complained of being tired and then after I posted later in the day, he said something about being tired at school. Hmm... he doesnt really seem tired though! He has always stayed in school. I took him out for 2 weeks in 2nd grade when the tics first started and were bad 1 1/2 yrs. ago. I have him stay home off and on because of tics here and there, but his attitude has always been really good-no problems, but tics, some anxiety, and night time separation. Well, a little daytime, but not about going to school. Most of the stuff, his friends dont even realize.
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Just as an added response to how Gaby is doing 10 weeks post IVIG. At home I see less anxiety, except maybe when she's tired, but I understand that at school she has moments where she either suddenly yells out at the air to "stop it" or she is worried about something that isn't happening. I think it may be that in school there is a little more stress (anxiety about performing academically, anxiety about other kids - what they think of her) Therefore, I would expect to see more of that behavior at school than at home.One positive note is that she has been falling asleep much easier for the last few weeks (takes between 1/2 to 1 hr, but is quiet while she is waiting to sleep, might toss and turn a little, but doesn't worry verbally) She might still wake up at night, sometimes I'm aware of her stirring, but I'm not sure how long she's awake because she doesn't tell me that she's scared or ask me to sleep next to her, so she may be sleeping through and if she's not - at least she doesn't seem to be overly anxious while she's awake. Thank goodness for small improvements. Other than that, she still talks about her imagination and will still say sometimes that it's being mean to her and she might have a worried look on her face. Still fairly spacey and unable to follow simple directions. I might tell her to go to the table and pick up the purple bag and hang it up on one of the coat hooks. She will walk right past it - I'll have to re-direct her - then she'll pick it up and walk around with it until I say again "hang it on the coat hook", then she'll pick up a coat and say "this one" - its like nothing really registers. Don't know if its just slow moving getting better on IVIG or if she has some yeast issues from the abx she's been on since first of October. She did have an OAT test done, and if you've been following any of my other posts, will see that the test did show that she has a high growth of yeast. The nutritionist advised a very high dose of probiotics that you can only get on line -not in the health food stores - like about 20 to 30 billion cFUs. I will be talking to DAN doc on Tuesday to see if I should give her nystatin and what else he recommends - could be her spacey behavior is due to yeast and not so much PANDAS stuff right now. Pat

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  • 3 weeks later...

Hi all,

Just wanted to give an update on my dd, now almost 7 weeks post IVIg. She is doing really great. I would say she is 95% back to her pre august 2007 self, some days it is 100% back. She is happy almost all the time and the rages are gone. No rages whatsoever since the week OF the IVIg. Right now she seems almost like any other kid. Slight hand tremors are still present and the very rare occasion she will say something or do something reminiscent of her OCD days. Even the anxiety seems to be going away and she even wants to go and do things again (actually wants to go out to dinner, go bowling, to movies, etc). Her pupils seem to react normally now and her urinary issues are fading. She's reading chapter books, changing focus easily. She is hilarious again! We are so happy to have her back.

 

She hasn't been back to school in a couple months. Her home bound teacher is not planning to come back and we have a meeting on Jan 8th regarding getting her back on track with school and such. I think she will be a little nervous to go back but she seems to really want to and I don't see why she can't go back. I was contemplating trying half days for a week to see how it goes but I am not sure. She's just doing really great, I can't really justify that. I guess my biggest concern is that she will come into contact with a classmate who is a silent carrier of strep. I find myself extremely protective of her and now I'M afraid to be away from her. This illness brought our family to it's knees and my poor dd has gone through so much. I know everyone understands, for sure.

 

I hope everyone else is doing good. Happy new year to you all.

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