Negative Personality and Vision Changes

[Pezmom]

We've been slowly brining our son back from a severe bout with PANDAS in the Fall. He's now had 4 rounds of IVIG and has been on Ceftin daily since September. As I posted previously, he was approximately 75% recovered from the injury when we had another smaller round of PANDAS a month ago. Things are improving again, but as the smoke clears I'm noticing other changes I hadn't noticed previously. Specifically to do with a very negative attitude and vision changes.

 

He has become a very negative person (at 7). Everything "sucks" and he automatically goes into a negative tirade when anything upsets him. I had been thinking this was due to his frustration with PANDAS changing his life and requiring him to be homeschooled this year, but had a thought last night that it could be due to brain injury. I've read about negative personality changes due to brain injury. What do you think and have you seen this in your kids as well? I'm not talking about the rages as we've definitely had that as well. I'm talking about an overall negative outlook on life and negative response. Is this something we can hope he'll recover from as well as the inflammation goes down?

 

Also, I've noticed he has to stand close to the TV now in order to see it. I asked him if his vision has changed and he said it has. I've got to get him into the Opthamologist, but am wondering if anyone else has seen vision changes. It also makes sense to me that brain injury due to PANDAS could have caused this.

 

Thanks again for any info you all can share. This is a long and frustrating journey.

 

Jena

[Pezmom]

Even though this didn't strike a cord with others, I thought I would still post an update. We saw the developmental Opthamologist today. Since PANDAS, our son's vision has changed from 20/20 to 20/60, he's gone from farsighted to nearsighted, and his eyes are no longer working together. He had previously finished vision therapy (over a year ago) and now we have to start back to doing it again. An interesting twist is that his PANDAS symptoms are much improved the last couple of days (amazingly so) and he announced this morning that his vision wasn't blurry today. So, even on a good day when he's saying his vision is improved, we have these documented eye changes. The doctor wants me to bring him back in if things flare again so we can see what happens with his eyes when PANDAS is doing damage. Of course, I'm hoping that doesn't happen. This improvement in PANDAS symptoms was predictable to me. Each time we do IVIG, we have about a week of difficult times and then things improve dramatically for a few weeks.

 

Still trying to figure out all the pieces to this darn puzzle.

 

Jena

[bronxmom2]

Hi Jena, my son's attitude is definitely more negative since PANDAS-- and I too am just hoping this isn't permanent.

 

If you don't mind my asking... do you pay out of pocket for the IVIG each time? Who is approving and ordering the treatment? Thanks

[EAMom]

Hi Jena,

I'm also curious what dose of Ceftin you are on and if you give it once or twice a day (and how much your son weighs). We were on Ceftin (2x daily for 10 days) when our dd's PANDAS was really bad last May (started with Augmentin in March where she improved but still had lots of ocd; then switched to amoxcillin 2x daily for prophylaxis and dd then got worse; then tried the Ceftin x 10 days which didn't help at all....finally in June we started Azith. and we say a huge improvement).

 

Also, have you tried (or considered) Azith? I also wonder if their is some strep exposure that is causing the IVIG to not help for more than a few weeks?

 

Shaesmom recently posted about vision changes (blurry)...I don't know what came of it or if she saw the eye doctor.

[Suzan]

Hi Jena, I don't yet feel like I have the authority to compare too many of my children's symptoms since I don't yet know whether they have pandas. But I do know that my daughter seems to have up and down vision issues. She will go through period of times where she says she has trouble seeing, blury vision, spots, flashes of light..... I have tended to think she's making things up because she wants glasses but now I am wondering if it's related to strep?! So far, all vision testing has been normal though.

 

Good luck to you!

 

Susan

[Pezmom]

Hi Jena, my son's attitude is definitely more negative since PANDAS-- and I too am just hoping this isn't permanent.

 

If you don't mind my asking... do you pay out of pocket for the IVIG each time? Who is approving and ordering the treatment? Thanks

We were actually fortunate (an understatement, I know!) to have insurance coverage for 6 rounds. Our doctor simply sent in our son's lab results and the insurance company approved it. We decided to take advantage of the full course of treatment to try to completely knock PANDAS out. Diana P. left me a message the other day asking for my son's lab info in an effort to determine why our insurance company provided coverage. I just haven't had a chance to pull out his hefty medical file to dig for that info yet. I'm still going to get it to her. I obviously don't want to rock the boat with the insurance company by calling them to ask why it was covered. I do know that we never mentioned PANDAS, just let the labs speak for themselves.

[Pezmom]

Hi Jena,

I'm also curious what dose of Ceftin you are on and if you give it once or twice a day (and how much your son weighs). We were on Ceftin (2x daily for 10 days) when our dd's PANDAS was really bad last May (started with Augmentin in March where she improved but still had lots of ocd; then switched to amoxcillin 2x daily for prophylaxis and dd then got worse; then tried the Ceftin x 10 days which didn't help at all....finally in June we started Azith. and we say a huge improvement).

 

Also, have you tried (or considered) Azith? I also wonder if their is some strep exposure that is causing the IVIG to not help for more than a few weeks?

 

Shaesmom recently posted about vision changes (blurry)...I don't know what came of it or if she saw the eye doctor.

Our son weighs 55 pounds and takes 250 mg of Ceftin 2 times per day. He was originally diagnosed with PANDAS at age 5 and our doctor would prescribe a 5 day course of Zithro whenever we had a PANDAS episode (these were very mild with slight tics and impulsivity - I didn't know enough about PANDAS at that point to know what else to look for). Last summer, he was on Zithro at least a couple of times and the PANDAS stuff wasn't going away. So, our doctor had him on Zithro every three days with no change, and then upped it to every day. While he was on the daily dose of Zithro, our worst PANDAS episode occurred which caused all of the cognitive changes, full Tourette's, OCD, ADHD, impulsivity to the point that he had to be removed from school. We did a 10 day round of Ceftin and saw improvement and then tried Zithro again for a week. Symptoms increased again and that's when we went to the Ceftin daily. He's been on it ever since. I've posted previously that I think the disodium EDTA given with an enzyme an hour before the Ceftin helps the antibiotic to work better. When we added the EDTA, we saw gains and then lost some of those gains when we decreased the EDTA. We are now giving it two times per day and also give him zinc at night. He's also been on Low Dose Naltrexone lotion at night for at least 2 years.

 

Our younger son (age 4) showed some signs of PANDAS a month ago (at the same time as our 7 year old's newest regression), and we treated that with a 10 day course of zithro. Our doctor now has the younger guy on Zithro every 3 days. I found out later that he was getting gluten at school during that same time period and he's also developed an extreme sensitivity to phenols. So, I honestly don't know if it's the gluten, phenols, PANDAS or a combination. I'm going to take him off the zithro soon and see what happens. I hate having them on antibiotics. If I had known all this was in my future, I definitely would have gone to Medical School or become a scientist.

[ShaesMom]

Hi Shaesmom recently posted about vision changes (blurry)...I don't know what came of it or if she saw the eye doctor.

 

 

Shae has stopped complaining about any problems with her eyes since she has started the proph. abx. So, I've put it on the backburner right now since we are already at the dr at least once a week.

 

Sam

[EAMom]

My dd had ocular migraines when her PANDAS was bad...could this be what your dd is going through? She saw irridescent bubbles and ghosts.

[Suzan]

My dd had ocular migraines when her PANDAS was bad...could this be what your dd is going through? She saw irridescent bubbles and ghosts.

 

Yes, this is what it is like, she says blue dots and green snowflakes. If her sister does have strep, this would explain a lot. They have died down the past week though, or at least she is not complaining of them now.

[bronxmom2]

Oooh, I understand your not wanting to rock the boat with your insurance company, but I would LOVE to know how and why they approved the IVIG.

 

My son occasionally complains that everything has a "green tinge."

 

Gotta love him, anyway... he is 6 and actually uses the word "tinge" to describe it.

[Ela]

Hello, I am new to this board and in search to answers that would explain my son’s behavioral changes. They started in the Fall of 2016 and it has been a nightmare ever since. Nothing, other than PANS, explains the severe OCD, ticks, severe aversion to food, oppositional and regressive behavior, forgetfulness at times, personality changes. The last one especially has hit me very hard; I miss my son and he just isn’t back to being himself. He’s been treated only for the psychiatric symptoms and that has been reduced to therapy sessions once a week. My son has refused to continue taking his antidepressant and psychotropic medication since October ’2017. My worries and questions regarding potential PANS, my son most likely has, have been dismissed or at best left unanswered. I find it strange and so frustrating that I cannot find a provider specialized to evaluate and treat my son for this condition. Wisconsin must really be behind in new scientific findings. The most aggravating advice I get from medical providers is to not rely on internet for information. Meanwhile, my son is suffering in silence. He has to be scared, but he will not open up. The only way for him to vent is through irrational resentment and anger. I am fascinated to read posts mentioning the different approaches to treating  PANDAS, at a time when I cannot even find a provider for evaluation. And, in fact, this is 9 years after the previous messages on this link have been posted.

[bobh]

10 hours ago, ela said:

The most aggravating advice I get from medical providers is to not rely on internet for information.

I am with you on that aggravation.  They aren't helping, "so don't you go to the internet for help."  I would like to use some expletives here on how I feel about that, but am restrained by respect for the group and site.

How old is your son?  There is one phychiatrist listed for Wisconsin here: http://www.pandasnetwork.org/research-resources/us-providers/ , and if you check nearby states, you may find others similarly close to you.

[MomWithOCDSon]

Ela --

Sorry to say, it isn't just Wisconsin, nor is it limited to more rural areas.  We're in the Chicago suburbs, and it took us 6 years for anyone to take us seriously regarding PANDAs.  The issue here is that the area's leading pediatric immunologist and infectious disease expert is a virulent PANDAS/PANs naysayer, and he's heading up our teaching hospital programs, as well.  So every pediatrician who comes through this prominent program tends to come with the same attitude:  that PANDAS/PANs is a condition "made up" by the internet and parents who simply refuse to accept that their children have, overnight, become mental disaster zones.

We finally got help and some relief when, at 12, our DS fell off the cliff with respect to his mental and emotional state.  "Saving Sammy" had just come out in the bookstores, and after I read it and realized my DS was practically a carbon-copy of Sammy, I took a copy of the book to DS's regular pediatrician and begged her to help us.  She'd known DS for many years, and I think she realized that who he appeared to be at that point bore little resemblance to the sweet, calm, inquisitive boy he'd been before.  She remained skeptical about PANDAS/PANs but agreed to provide us with a 30-day antibiotic trial based on Sammy's protocol and her oath to "do no harm," which she felt trying antibiotics might do nothing, but it wouldn't harm our son.

When our son began to improve almost instantaneously (within 48 hours), I started keeping her abreast of his improvements via "snail-mail" notes (she didn't have email, and she wasn't insistent that we bring him in regularly).  And because he continued to improve with abx and seemed to initially regress when we ceased them, she continued to renew our prescription for quite some time.

Now, the rest is history.  Our DS had also been under the care of a psychiatrist since the age of 7 when the OCD he'd first displayed at 6 stopped responding to CBT alone, we couldn't get anyone to take PANDAs seriously, and he never showed classic signs of a strep infection.  So we continued with therapy and psychiatric supports while he was on abx therapy for the medical issues, and he continued to improve.  We switched to a psychiatrist who, while not willing to "treat" PANDAS specifically as she felt that it was a medical condition which should be addressed by a pediatrician or other medical specialist, accepts PANDAS as a viable diagnosis and thus is mindful as to other interventions she recommends alongside PANDAs treatments.

Healing was not instantaneous and the mental/emotional challenges continued for some time, also, perhaps because he went so long without adequate treatment for the underlying autoimmune issues.  That's one reason we stuck with the psych and therapy, along with the medical interventions; we wanted him to have as much support as possible so that, hopefully, he could climb out of the hole quicker and with less overall stress.  But he improved steadily and returned to being not just functional, but happy..

Hang in there, and keep dialing for dollars.  There are other folks here who have or still do live in Wisconsin.  The International Obsessive Compulsive Foundation web site has a "Find Help" page where you can search for geographically proximate professionals to help you.  I found our psych on this site; I called every one of them and interviewed them about their knowledge and acceptance of PANDAS/PANs before I even considered making an appointment.

And consider enlisting a current caregiver/doctor for help; someone who's known your son for many years, one would think, could see that he has fallen victim to something atypical, and they might be willing to step outside their comfort zone like our pediatrician did and give some help, even if only temporarily while you search for other options.

All the best to you!

[MC2]

Hi All (I realize orignal post here was in 2009 but it would be great to hear more/new updates!),

Vision: My DS (now 10) has complained of burry vision in full flare and has also had worsening of vision in recovery (needed reading glasses suddenly). Note that my son's treatments included 6 months of high dose Solumedrol infusions. We learned that high dose steriods can cause some vision issues, though generally relatively temporary. 

Negativity: We also have experienced significant negativity. This has become one of the biggest challenges because we have had a hard time figuring out how to manage this. Here is how I would describe it: during peak flare (the one that caused us to finally get diagnosed), our DS was so sick he was well beyond negative (high oppositionality, terror stricken look, panic, refusal to get treatments, running away, destroying things in his room, and then there were the litany of clear "physical" symptoms like joint pain, vision issues, frequent urination etc). Thankfully, we got overall vast improvement after 6 months of Solumedrol/abx/alleve/plaquenil (and now + methotrexate). BUT, we unfortunately continue to have break through flares following infection (currently in the midst of 6 weeks of MRSA sinus infection - love any help there! MRI is back but awaiting Ear Nose Throat apptmt).

We get significant negativity during flares, and a frustrating amount of negativity even during the relatively "good times." During the "good times," our DS's negativity is highly correlated to  our asking him to do things that he finds difficult - particularly from a stamina standpoint. The thing he finds most difficult is going to school for 7 hours a day (we do partial days but we still have negativity around this). He also has issues playing sports (even though he wants to for the most part) - he is still having continual joint pain (hence the new methotrexate med - this is a big RA drug in case not aware of it - but dr is hoping it might also help w/PANDAS) and stomach issues (likely from taking all these drugs  ). Regarding school, our DS will often say "it is just so long" and "it is so awful that I have to go for the next 8 years of my life." Note that DS is back to being quite social/ bright and at this point seems capable of doing much of the academic work, but is very negative about the prospect of doing school for hours and hours in a row. (It has been a year since he first began treatment and the first six months he really did no academic work whatsoever - was not able to).

I would love to hear other people's experiences ... so much of this seems dependent on eliminating further flares.... so they have time to fully recover...