10 days post ivig

[norcalmom]

anyone else have this symptom after ivig? Everything else is good - we haven't had any terrible turning back of pages. we saw some head shaking tics the first 3 or 4 days that he hasn't had in a while, but very minor, and gone all together now.

In the past ds only wet his bed if going into exacerbation. its been like every other night since the ivig. Its weird. Everything else is good - mood improved but its a "saw tooth" recovery . We are seeing some moments of great happiness, and less anxiety, but he's still having irritable times (just not all the time anymore!). He is looking into the sun a lot less, but still a few times a day... I counted 28 what we called "sun tics" during a one minute video clip I took two weeks before the ivig to send to dr k...so that is huge improvement.

 

He was not in exacerbation when we did ivig. Can't imagine how hard that would have been stress wise. HIs baseline of symptoms was creeping after each virus last winter, and the sun thing was one of the things that came back after an exacerbation and stuck. Between that, and finding out that a specific part of his brain is not working at all, we decided to do ivig.

 

OH - I have another question too - we got recommendation for a 504 plan from psychologist, but ds wants NOTHING to do with anything that will single him out, like using a laptop to type, or extra time on tests. He was distrught that I would not allow him to take the advanced math, and is insistent I not tell any of his teachers he has pandas, because he thought that his 5th grade teacher treated him differently last year (teacher knew, and was GREAT, but yes, he might have had a little soft spot for my ds...his one son was diagnosed with epilepsy 6 months before)

 

so, I dunno what to do. perhaps the ivig will work, but will it improve his math/handwriting fast enough that he won't need the support from 504 plan that was recommended (photocopies of notes, a hard cory of anything written on board that they are suppposed to copy, an alpha-smart or lap top to type instead of write,nothing major)

 

DS is pretty anxious about middle school, and desperately wants to fit in, so do I let him struggle and fit in, or do I single him out and get support. I've told him several times that he is not to get stressed about school and that health is first, hobbies are second and school is third this year. It makes him feel that others will think he is stupid if he has these things. I'm torn. I don't wnat him to feel like that - don't want the stress of it, but the stress of struggling because you cannot copy letters and numbers or write fast enough to take notes is stressful too.

 

I'm in wait and see mode, unless I get some sage words from anyone out there thats been through it.

[nevergiveup]

Middle schoolers do not like to stand out!!!! But part of their development into high schoolers is learning how to start to embrace their own individualness. I find my middle schooler was the same. One big issue u have is if he starts to fall behind it is very hard to catch up and stress is not good for the immune system. IVIG changed my dd's ability to concentrate and her grades were better than ever though. I always look for a compromise that satisfies my dd's needs versus wants. We look to the school for extra support on her illness also. Obviously, the kids will ask him what the computer is for and why he gets to use it, if he comes up with a reasonable answer on his own, it will most likely never be mentioned again. Middle schoolers will ask for sure, so he will need to be prepared. My feeling is one day of stress is far worth one year of stress struggling daily in the classroom. Kids know who is struggling in the classroom also and that is a ongoing public embarrassment to some children. (Feeling confident about his ability with the computer could prevent this) This will not be the only time ur middle schooler does not want to stand out. It will come up a lot over the next several years, so I would pick the areas of most importance for his future and stand strong, and give in to the others that will surface daily. (For example: what u say to his friends, where u drop him off, what he has to wear, his hair, how u cheer for him while he play sports, if u call him "sweetie", if u laugh too loud in front of his friends, if u tell a stupid joke in front of his friends, if u cook the wrong food for his friends, If u come in to see a teacher and u stop by his locker,(the very worst possible embarrassment any middle schooler could suffer) if he has to take any medicine during lunch and his friends know. If he is late for school or an event. Etc..................., actually I am not sure there are very many things that don't embarrass a middle schooler! name='norcalmom' date='17 August 2010 - 11:30 PM' timestamp='1282105810' post='80272']

anyone else have this symptom after ivig? Everything else is good - we haven't had any terrible turning back of pages. we saw some head shaking tics the first 3 or 4 days that he hasn't had in a while, but very minor, and gone all together now.

In the past ds only wet his bed if going into exacerbation. its been like every other night since the ivig. Its weird. Everything else is good - mood improved but its a "saw tooth" recovery . We are seeing some moments of great happiness, and less anxiety, but he's still having irritable times (just not all the time anymore!). He is looking into the sun a lot less, but still a few times a day... I counted 28 what we called "sun tics" during a one minute video clip I took two weeks before the ivig to send to dr k...so that is huge improvement.

 

He was not in exacerbation when we did ivig. Can't imagine how hard that would have been stress wise. HIs baseline of symptoms was creeping after each virus last winter, and the sun thing was one of the things that came back after an exacerbation and stuck. Between that, and finding out that a specific part of his brain is not working at all, we decided to do ivig.

 

OH - I have another question too - we got recommendation for a 504 plan from psychologist, but ds wants NOTHING to do with anything that will single him out, like using a laptop to type, or extra time on tests. He was distrught that I would not allow him to take the advanced math, and is insistent I not tell any of his teachers he has pandas, because he thought that his 5th grade teacher treated him differently last year (teacher knew, and was GREAT, but yes, he might have had a little soft spot for my ds...his one son was diagnosed with epilepsy 6 months before)

 

so, I dunno what to do. perhaps the ivig will work, but will it improve his math/handwriting fast enough that he won't need the support from 504 plan that was recommended (photocopies of notes, a hard cory of anything written on board that they are suppposed to copy, an alpha-smart or lap top to type instead of write,nothing major)

 

DS is pretty anxious about middle school, and desperately wants to fit in, so do I let him struggle and fit in, or do I single him out and get support. I've told him several times that he is not to get stressed about school and that health is first, hobbies are second and school is third this year. It makes him feel that others will think he is stupid if he has these things. I'm torn. I don't wnat him to feel like that - don't want the stress of it, but the stress of struggling because you cannot copy letters and numbers or write fast enough to take notes is stressful too.

 

I'm in wait and see mode, unless I get some sage words from anyone out there thats been through it.

[LNN]

HUGE urinary issues for us post-ivig. DS hadn't had any daytime issues in over a year. Post-ivig, he was constantly having to go, for about 8 weeks. Also washed sheets ALOT, even with using a pullup. His body just seemed to be producing huge amounts of fluid 24 hours a day. It is only now just starting to wane, along with other things. He was 2 weeks into an exacerbation when we did IVIG, now we're 9 weeks post. So it's been a very long, tiring 3 months for the whole family. 4 days ago, he finally started to turn the corner and we're seeing definite upswing all around. No laundry yesterday! What was really hard is that this was probably the longest episode in a very long time. I expected things to get worse before better, but I wasn't emotionally prepared for such a marathon.

 

We got a 504 at the end of the school year in May. I don't have experience with middle schoolers yet. I guess I'd initially respect his request that you keep his confidences and not tell the teacher about things right off the bat. I'd monitor his homework and behavior and give it at least a few weeks to see where you're at. But as much as you don't want his disease to make him feel singled out, my recollection is that ALL middle schoolers feel there is something that makes them horribly different from the herd. A zit, 5 extra pounds, a bad hair day...so keeping his disease a secret may be understandable but not wise in the long run. You can keep it secret only to have him obsess over some other perceived flaw. I'd lay low for a time - as you yourself said, school is not your top priority this year, but you'll both have to strike a balance.