Jump to content
ACN Latitudes Forums

Eye pain and Severe Headache - 2 wks post ivig


Recommended Posts

Hi, my son (10) had ivig with Dr. K two weeks ago. He had fever/headaches for all of the first week after. In fact, I posted asking advice on whether or not to take to e.r. it was so bad. However, this past week he was really good - headaches and fever gone, great mood, very minimal ocd remaining, at least compared to what he was like pre-ivig:) He was HUMMING yesterday - something I haven't heard in months!!! Then, out of the blue today he had severe headache (tears streaming down his face and said his head was throbbing) and said his eyes hurt so much that he couldn't keep them open, he also had chills, but wouldn't let me take his temperature to see if fever, although he didn't feel terribly hot. His ocd also ramped up starting last night and all through today. He slept for about 1/2 hour (very rare for him to take a nap) and took some children's liquid advil and now just says he still feels really tired and minor headache, still light sensitivity for eyes. I don't want to panic, but I was reading that headaches and eye pain and chills could be symptoms of bartonella infection. But, I also thought I had read somewhere on this forum that these could be signs of herxing. But, being that he is two weeks post ivig, is there less of a chance that this is herxing and should I have blood tests done to rule out bartonella? I should also note that I don't think this is a flu or sickness. We haven't been out much since ivig and he already has had the awful viral sickness that was going around - the coughing, rundown, sinus pressure (I had it at the time of his ivig and think I infected him:(...) I guess it could be possible that this is a new bug, but would appreciate anyone's experiences with herxing and/or bartonella infections if there is anyone - with herxing, specifically, what are the timeframes post ivig that this would show up and are headaches/eyepain/chills signs of this? Have not had the good Igenex lyme test done, but his ped did run lyme blood test (no idea what one) and she said it was negative. I think it was just a test of lyme titer levels, if that's possible. I'm scared to go look at the paperwork as I'm right next to my son and I don't want to wake him up!!! Thanks for any and all responses.

Link to comment
Share on other sites

I'm not sure if the symptoms are a sign of another infection, but you will not be able to run any tests until like 12-weeks post-IVIg due to the extra antibodies. My ds(7) had IVIg back in Nov w/ Dr. K & would have occasional fevers for a few weeks afterward. He also slept a lot. He will complain of light sensitivity occasionally even now but its never been to a high degree (& was not a major symptom). We are coming up on 16-weeks post-IVIg, & there's still healing happening. Some days are better than others. Have you been doing the fish oil Dr. K recommends. I know it took me a little while to find one my son could take. If you've just started that, perhaps there's been a reduction in brain inflammation inducing the headache...or just the IVIg & abx doing their stuff. Don't hesitate to email Dr. K if you feel like you need to do that. I know about the not going out much post-IVIg...can get stir-crazy staying inside all the time. :) I find even now that when we do go out for extended trips even now, we'll see behaviors that night or the next day(s). Good luck with the healing of your son.

Link to comment
Share on other sites

Hi Sarah Jane,

 

Thanks so much for responding! I think I am just a nervous nellie sometimes over any and all symptoms I'm not expecting. He seems much better this morning. I think like you said, it just takes time to heal and there will be healing taking place over the next several weeks that may come in different forms. My son was taking all recommended vitamins on Dr. K's protocol, but two days ago he stopped taking vitamin e, folic acid, vitamin c, AND the fish oil? basically, it's all i can do to get him to take the augmentin twice/day - maybe stopping all those caused the headache?! I hope your son continues to improve as well.

 

Sincerely,

Laura

Link to comment
Share on other sites

The worst symptoms are the ones that they've never have that show up & leave you scratching your head & then they're gone. Jesse's been going thru a phase of pulling his hair out. Has a little spot on the crown of his head. Made it in just a few days...now the "habit" seems to have passed. And actually writing that about the fish oil got me to thinking, & I halted ours again. His big flip back in Jan happened when I changed brands, then I started giving it to him a few weeks later with no issues. I stopped the fish oil today as an experiment. We'll see. DS(7) actually reminded us that he didnt' have it today...luckily he takes his medicine okay. We'd been to a museum on Wed, so it could be he was exposed (or my dh brought something home from work). After 2 weeks, my son hit a stride & did really well...then a kinda big flip around 6.5 weeks that passed within a week. Now, even at 16 weeks or so, we're still on the roller coaster. Just make sure your arms & legs are inside the car at all times. ;)

 

Good luck. If you ever wanna compare notes, just sent me a message. :)

Link to comment
Share on other sites

I'm really going to try to force the fish oil in him somehow today as well as other supplements. Tampicc, would LOVE to find chewable folic acid and esther c as he says those are "scratchy" and hates them the most!! He was taking XTEND Life from New Zealand for fish oil. I researched before I bought this (kind of expensive), but I do really think they had a positive effect and will beg him to take again; ordered online. I don't know how good it would be in smoothie; there is no bad aftertaste while in the gel cap, but broke one open to see if I could hide in a drink and it definitely wouldn't be disguised well as it is strong. So, might have to beg and/or bribe.

 

Oh Sarah Jane, I'm so sorry to hear about his birthday:( I keep having this day dream that this summer we will all be happy and healthy again, but I know there are no guarantees and lots of ups and downs to come. Let me know how the fish oil experiment turns out! To his teacher's dismay I am going to keep him out of school another three to four weeks b.c. there are such rampant sicknesses going around. He might be behind in school when he goes back (nothing new, sigh...), but I have to give him the best chance possible to heal from the ivig. I did take him to a museum Saturday as well, hoping he didn't pick something up:( It's scary and frustrating that our children are at the mercy of other's sicknesses. I feel like I look like I have ocd by the way I'm constantly rubbing hand sanitizer on him and myself, lol.

 

p.s. I think we both "like" the pepsi refresh project on Facebook, maybe we can be friends on there as well? (Laura Ingalls Ventura); I always notice your posts because my identical twin sister is named Sarah Jane (just goes by Sarah to most), but makes your posts stand out to me!

Link to comment
Share on other sites

Also, in regards to Aspergers symptoms. No, our son's OCD really ramps up and rage, defiance (mostly these last two relate to frustration with ocd though). He definitely cannot focus as well though when he's going through a bad time and will get a far off look on his face now and then. I believe it's that he is lost in some ocd thought or something when this happens though.

Link to comment
Share on other sites

Hi- we are day 13 post HD-IVIG. We did have our horrific rage episodes continue after treatment, but it's been 5 days free of one-

We did notice her social anxiety had really increased after treatment- which caught me by surprise, we had made great strides there- and she goes off more by herself.

We started to work on her stomach issues (yeast overgrowth) and she is calmer, and no rages (saying it again, lol) these past 5 days. Trying to get her to eat is exhausting.

I am seeing overall improvement- But if you had asked me last week, I was really discouraged and had some dark days. I am still tense and walk on egg shells.

I had to give up giving the ibuprofen, and once in a while she says her head hurts (not migraine bad.)

ETA: I also am hearing things about eye pain. Not bad pain, but she talks about her eyes- sometimes squints them- (I don't think it's a tick, doesn't happen all that often)

Edited by S & S
Link to comment
Share on other sites

We're using the capsules of fish oil (MorEPA). It says for 10 & up (I think becuz it's a pill vs. the chewable version), but I just give one vs. two as recommended. When I give 2 he wigs out for some reason (or at least that's what it seems like...may not be related). I skipped it yest & he wigged out last night. So...I'm not sure if the wigging out is related to the fish oil or not. I may have to check out those vitamins...right now I have him on a multi w/ extra C but it's not Ester-C. And I spoke too soon about the hair pulling...caught him doing it again last night. He twists until he has a knot & then can't get the knot out so he just pulls it out. I'm emailing Dr. K today. Last night, we had maybe our worst night since Nov or early Dec (we're right at 16/17 weeks...IVIg was 11/18-19. I got some ibuprofen in him & he calmed down after that but was up til probably 5am. I think we're going to be heading for a 2nd IVIg at some point. Could be because he was undx'd for probably 4 years since we suspect early onset now...as soon as we got the official dx we did IVIg. We'll see what Dr. K says.

 

@tampicc...I know the symptoms you're describing--we saw/see those at times.

 

@LauraMary...I figured that was you on FB this morning. :) I usu go by Sarah but just like Sarah Jane. Glad your sister spells her name correctly. (You too S&S!) ;)

Link to comment
Share on other sites

These capsules are junior size. Not those HUGE things. He can do it. There's a little bit of Omega 6 & 9 in it too...but it's mostly EPA with some DHA. Strawberry flavored too. If you have a Whole Foods, you could check it out there to see if you think he could do it. Jesse's doing zith in pill form too...they're maybe twice the size of the zith. And like I said, we just do one pill, which is just under Dr. K's recommended dose. When I did 2, that's when he flipped back in Jan. I tried 2 again on Fri, and we did not have a good weekend. Skipped it altogether yesterday & we did not have a good night. I'm not sure it's even related, but my PANDAS paranoia is high whenever I change something & see a behavior change. I think his issues have been building for a few weeks tho'...just all spilled out last night. I hope that was all. I need to wake him up & see how he is today. I know things weren't this bad a few weeks ago because I'd planned some outings for this week--now I need to cancel all of those. Total bummer! I had a 3-day mini out-of-town trip planned & really to go since 3/17 is a bad PANDAS anniversary (1st time I was called to school & my son was out of it like I'd never seen him before). Instead, I get to relive all that "fun" in real life. BLAH! I'm very affected by these anniversaries (that's part of MY OCD)...last spring was so bad. I was really hoping this spring would be good. And if we do head for another IVIg, are we going to be confined to home again for the spring/summer months? GRRRRRRR. I'm not sure Dr. K would do one so soon tho'. I need to get that email written & sent. I'm procrastinating.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...