Behavior issues vs. more serious PANDAS issues

[Phasmid]

Hi everyone,

 

I am so confused and frustrated that I don't really know what to think or do anymore. Please help me straighten this out in my head one more time. I just can't think anymore.

 

My 11 y.o. son is doing okay after scary episode year ago. He has regrown eyelashes/eyebrows, which we always considered the biggest issue after he cleared up, but we are constantly hovering about him making sure he's not "picking." But he is tanking in school, can't do anything but play video games, and has serious short term memory issue. He has pretty bad moods that come and go. He can't sleep by himself. Impulse control is up and down. Anxiety comes and goes. But he doesn't have the OCD and craziness that makes him nonfunctional, like so many of your kids do.

 

Should I be thankful he is doing as well as he is?Are these things able to be controlled or improved by IVIG? He was on 30 days of biaxin. The first two weeks we saw improvement at home in mood and his ODD. However, that was the two weeks where I got emails from his teachers!

 

I have appt. with Dr. K on 15th. I just learned about Dr. Lin (Irvine, CA) from this forum. Could Dr. Lin (for those of you who saw him) help us you think, as much as Dr. K can? I just don't know what to do. Does anyone think the stuff above can be treated?

 

Again, sorry for the broken record. Thanks for your help...

 

OH... and do you REALLY think it is worth having cam kinase test done???

Edited June 3, 2010 by phasmid@earthlink.net

[JAG10]

I'm going to PM you

[Suzan]

Hi everyone,

 

I am so confused and frustrated that I don't really know what to think or do anymore. Please help me straighten this out in my head one more time. I just can't think anymore.

 

My 11 y.o. son is doing okay after scary episode year ago. He has regrown eyelashes/eyebrows, which we always considered the biggest issue after he cleared up, but we are constantly hovering about him making sure he's not "picking." But he is tanking in school, can't do anything but play video games, and has serious short term memory issue. He has pretty bad moods that come and go. He can't sleep by himself. Impulse control is up and down. Anxiety comes and goes. But he doesn't have the OCD and craziness that makes him nonfunctional, like so many of your kids do.

 

Should I be thankful he is doing as well as he is?Are these things able to be controlled or improved by IVIG? He was on 30 days of biaxin. The first two weeks we saw improvement at home in mood and his ODD. However, that was the two weeks where I got emails from his teachers!

 

I have appt. with Dr. K on 15th. I just learned about Dr. Lin (Irvine, CA) from this forum. Could Dr. Lin (for those of you who saw him) help us you think, as much as Dr. K can? I just don't know what to do. Does anyone think the stuff above can be treated?

 

Again, sorry for the broken record. Thanks for your help...

 

OH... and do you REALLY think it is worth having cam kinase test done???

 

 

Yes, I think you can be thankful he is doing as well as he is but at the same time, keep trying to get him better. You can tell he is not well and so you keep searching for answers and help. Until you feel it is all normal development stuff, keep at it. Those are my thoughts anyway. My dd's are not non-functional as I know they could be some day. But they do not function as normal children. Keep your Mommy instincts strong and honor them. You are your child's best advocate!

 

I relied on the can kimase test to reinforce what I already knew so it was helpful to me, plus my pedi agreed to treat with antibiotics if the test came back in the pandas range. That was back when it was $200 but at that time I was desperate so I may have paid more.

 

Susan

[Phasmid]

Thanks for this.

 

 

 

 

Hi everyone,

 

I am so confused and frustrated that I don't really know what to think or do anymore. Please help me straighten this out in my head one more time. I just can't think anymore.

 

My 11 y.o. son is doing okay after scary episode year ago. He has regrown eyelashes/eyebrows, which we always considered the biggest issue after he cleared up, but we are constantly hovering about him making sure he's not "picking." But he is tanking in school, can't do anything but play video games, and has serious short term memory issue. He has pretty bad moods that come and go. He can't sleep by himself. Impulse control is up and down. Anxiety comes and goes. But he doesn't have the OCD and craziness that makes him nonfunctional, like so many of your kids do.

 

Should I be thankful he is doing as well as he is?Are these things able to be controlled or improved by IVIG? He was on 30 days of biaxin. The first two weeks we saw improvement at home in mood and his ODD. However, that was the two weeks where I got emails from his teachers!

 

I have appt. with Dr. K on 15th. I just learned about Dr. Lin (Irvine, CA) from this forum. Could Dr. Lin (for those of you who saw him) help us you think, as much as Dr. K can? I just don't know what to do. Does anyone think the stuff above can be treated?

 

Again, sorry for the broken record. Thanks for your help...

 

OH... and do you REALLY think it is worth having cam kinase test done???

 

 

Yes, I think you can be thankful he is doing as well as he is but at the same time, keep trying to get him better. You can tell he is not well and so you keep searching for answers and help. Until you feel it is all normal development stuff, keep at it. Those are my thoughts anyway. My dd's are not non-functional as I know they could be some day. But they do not function as normal children. Keep your Mommy instincts strong and honor them. You are your child's best advocate!

 

I relied on the can kimase test to reinforce what I already knew so it was helpful to me, plus my pedi agreed to treat with antibiotics if the test came back in the pandas range. That was back when it was $200 but at that time I was desperate so I may have paid more.

 

Susan

[bgbarnes]

Hi everyone,

 

I am so confused and frustrated that I don't really know what to think or do anymore. Please help me straighten this out in my head one more time. I just can't think anymore.

 

My 11 y.o. son is doing okay after scary episode year ago. He has regrown eyelashes/eyebrows, which we always considered the biggest issue after he cleared up, but we are constantly hovering about him making sure he's not "picking." But he is tanking in school, can't do anything but play video games, and has serious short term memory issue. He has pretty bad moods that come and go. He can't sleep by himself. Impulse control is up and down. Anxiety comes and goes. But he doesn't have the OCD and craziness that makes him nonfunctional, like so many of your kids do.

 

Should I be thankful he is doing as well as he is?Are these things able to be controlled or improved by IVIG? He was on 30 days of biaxin. The first two weeks we saw improvement at home in mood and his ODD. However, that was the two weeks where I got emails from his teachers!

 

I have appt. with Dr. K on 15th. I just learned about Dr. Lin (Irvine, CA) from this forum. Could Dr. Lin (for those of you who saw him) help us you think, as much as Dr. K can? I just don't know what to do. Does anyone think the stuff above can be treated?

 

Again, sorry for the broken record. Thanks for your help...

 

OH... and do you REALLY think it is worth having cam kinase test done???

My ds is functional behavior, moody, sleep issues, impulse control, anxiety , ODD, ADHD symptoms are what we have considered his main problems-( that is until I realized he has to touch things evenly on both sides of his body last week so I feel like I analyze his every move now- from what he says he has had it for a while- he calls it his "addictions" he just never said anything and hid it well) but I also know he is not where he should be-not by a long shot- so we have many of the same issues you have.

I personally am glad I did the Cam Kinase- and we were not in exacerbation when we did the test- I just knew it was going to be positive- about a month after the exacerbation that led us to PANDAS 2 months ago. Surprise- we tested in the Pandas range-no question- for me it has helped when talking to the school & other Dr's- they may not know what the test is ( I have also worked hard at educating all of my Dr's about the test b/c it helps create awareness)- For the ones that did not know about it I pulled out the study with the graph and plotted where my ds is- and every Dr I have talked to now agrees. It is the proof I needed to keep moving forward. I am still testing for a million other things too but I have a piece of the puzzle. From what I understand Dr K is going to want the test at some point if you want to pursue treatment with him. Our consultation is on the 25th and I wanted to have as much of the testing done as possible to have the most informed meeting possible.

Good luck!

Brandy

[tpotter]

I don't know Dr. Lin, so I can't say anything there.

 

Dr. K. is WONDERFUL! If you can, I would definitely keep that appointment, and this is why. Once you have met with Dr. K., he is able to prescribe whatever meds your son needs. Also, Dr. K. is always available to answer your questions when you need specific questions answered. This is even the case if you switch to a dr. closer to home, like we did (ours had a family emergency, and wasn't available for an extended time...right after IVIG was done.) Thankfully, we had seen Dr. K., and he was more than willing to help me with questions, and also tell me what to do about abx when my son caught strep again.

 

Yes, yes, yes...CaMK test is well worth it, particularly since you have so many questions about is it or isn't it PANDAS. This will also help your doctors decide what to do. Yes, it is $400 now, but it is given through the foundation, so it is tax deductible. That brings down the total cost in the end. But, putting aside even the money is the peace of mind you get knowing without having to guess...is this, most likely (the test is not confirmed, but awfully close) really PANDAS, are the abx working, do I need to try something else.

[trggirl]

This is just my two cents, but I would keep the Dr. K appointment. It really helped me to talk to someone that had a lot of experience.

 

And on the CamK, again, it was just nice and worth it to have a hard number that pointed towards either PANDAS or something else going wrong in my daughter's body.

 

The way you describe your son is similar to my daughter. The ADD is our worst symptom. The doctors have all said I should just treat the ADHD with the typical drugs, but I have always been convinced that something else was going on in her body. Talking to an expert and having the CamK has helped back my position and given me the strength to keep pushing for answers.

[JAG10]

I'd like to add about the medication issue; IMO, they frequently don't work they way they are supposed to in our kids anyway. We were on this rat wheel with my girl for four years and she didn't respond the way doctors told me to expect. If it was a med that was suppose to take 4-8 weeks to build up in her system, she'd show good improvement after two days and that improvement would be gone by the time the med was just supposed to start working!

 

The psych who first identified her PANDAS, still wanted to treat her with the same psych meds that in any combination and dose hadn't worked in all that time! I would say over and over to these different doctors..."something's just not right".... one psychologist, in a condescending tone, said "it's never going to be right"... this was after her meeting my then 6 y.o. ONE time!!! We NEVER saw her again. Geez, why don't you go work for Burger King then!

 

No study or anything but my experience to back this up, but.... I felt like the medication failures or inadequate relief of ADHD and OCD symptoms was my girl's body's way of telling me- NO, this isn't right! Keep looking!!!

 

...and her body was correct!!!

[Phasmid]

So, what did work for her?

 

Thanks much...

 

 

 

 

No study or anything but my experience to back this up, but.... I felt like the medication failures or inadequate relief of ADHD and OCD symptoms was my girl's body's way of telling me- NO, this isn't right! Keep looking!!!

 

...and her body was correct!!!

[Phasmid]

This really helped freinds. This am I am taking the boy to get blood drawn this morning and send cam kinase test off (can I send out on a Thursday??) And, I am cancelling Dr. Lin and Keeping Dr. K appt. It is obvious after six years or more we just need to go right to the top. Y'all are absolutely right. He is in a really bad ODD thing right now.. WON'T take shower (i just had to go practically force him in after putting shampoo on his dry hair and making him brush through it at least before rinsing) or change clothes. Won't get off video game (dad's fault leaving the door unlocked again... sigh....). In a really angry thing right now. Yesterday i caught him staring at the tv sitting on the sofa, no socks on, should have left for school 5 minutes ago, and tv wasn't even on!!! Scary.

 

thanks again everyone! after so long i feel like im just crazy bad mom and nothing is REALLY wrong with him. Anyone else in that place? ugh...

[dcmom]

My dd was 8.5 when pandas hit. She had a much milder case than her sister. Mostly, sleeping issues, defiant behavior (never had this before), eating issues, and a loss of interest in hobbies and going out. Overall, though, she still did really well in school, and functioned on the surface. Her Cam K was normal, but her anti neurals were elevated.

 

She later had a drastic increase in pandas after illness, and received aggressive treatment.

 

Now- when we look back, so many of her difficult behaviors and changes were due to OCD. She was good at hiding the real reason behind a difficult, prickly surface.

 

So- I guess I am telling you to go with your "mommy instinct". From this post, and others, it certainly seems things are not right. The Cunningham test is an excellent piece to the picture- and if finances are not an issue- I would highly recommend. However- it is only a piece to the diagnosis.

 

Good luck.

[Phasmid]

what types of ocd behavior did she have?

[Megs_Mom]

Hi - the behavorial versus medical is always a really hard question. We choose to do both paths at once. The one thing that I want to say is about OCD. I know that your child may seem like there is not a lot of OCD. But kids are SO good at hiding this. The number 1 misdiagnosis for OCD is ADHD. I absolutely think that PANDAS can cause ADHD and related issues - but it can be hard to tease out the differences, just as OCD can also mimic SID. I realize that this is not helpful to just "say", so I'll give some examples from our life or good friends. I should add that it took about 4 months of very intense therapy, education, normalizing, etc, for our entire family to really understand how many areas OCD effected in our daughter's life. Treated with abx and now very occassional tools from ERP therapy, she is doing so well, and is such a funny happy kid. But we still occassionally find "echos" of OCD that we can only knock out because she knows what it is, and can talk about it.

 

Ways that OCD can mimic ADHD:

 

* a child that has contamination fears may have trouble sitting in a classroom. They may feel that a germ got onto a pencil & have to trade it in - so up they hop (teacher says "sit down", they cannot until they get the pencil). Child may brush back of your child's jacket in passing - child may need to wash hands, brush it off, may not be able to concentrate on work any more.

 

* a child with just right OCD may have the wrong number of pencils on their desk. They may feel that the child sitting in front of them has a chair at the wrong angle. They may need to touch a chair on the other side of the room 6 times because some one touched their chair. One shoe could come untied and mean that both shoes need to be tied 3 times each. They may need to sit down 7 times before they can do their work or the "teacher will die", so they are hopping up and down.

 

I should add that in all of these examples, the child will not want to seem wierd. So they will give excuses, or try to seem normal. They may try to make other kids laugh so that they do not see the panic. They may give up & simply stare into space, as they are trying to keep it together until they can get out of the classroom. They may be saying mental rituals in their head to ward off hard & therefore are completely unable to hear the lesson on fractions or do the work on the desk in front of them.

 

* a child with perfectionism OCD may not be able to accept a letter that looks wrong on the page. They may erase until the paper is ripped. They may not be able to explain why they are stuck on one word, and will throw the paper out.

 

* a child with doubting OCD may not be sure that they read a test question correctly. They may reread each question 6 times before being able to answer. It is like they are taking 6 tests.

 

* a child may not be able to walk on black squares. So they may leap about the room or refuse to stay in line. They may run in odd pattens that are not easily understood if you don't know what the compulsion is.

 

* a child may "forget" to bring a contaminated book home, and cannot do homework. Contaminated clothes or homework may be "lost" so that they don't have to touch it.

 

* A child may be unable to eat certain foods for fear of being sick. If they cannot explain this in any rational way (You liked it last week, honey, you have to eat that or there isn't anything else), then they may be hungry a lot - it is hard to concentrate when you are hungry.

 

* a child may have mental compulsions that cause them to seem like they are not "hearing" or concentrating. For example, if another child says "stupid", they may need to say "sorry, God" 40 time. if they say it "wrong" or are interrupted they may need to start over.

 

* a child with scrupulosity OCD may worry that they are cheating. They may spend so much time creating "walls" around them with folders & lunchboxes, and look disorganized & not finish the test. They may not be able to answer a question that they really knew, for fear that they saw it on another child's paper, and therefore would be cheating.

 

I could go on and on - that is likely a sad reflection of our last few years. But even at the worst, we did find help and support in ERP therapy (with a really good therapist, not just someone that does CBT - an expert). This may not be the issue for your child - but I do want to say that OCD is not easy to recognize - it often hides and causes a child to try to disguise it. Through therapy for OCD a child can learn how to understand what is happening to them, and are given tools to help. This then allows a parent to know if there is a lot of uncontrolled OCD that needs to be medically treated in another way.

 

There is a HUGE difference between the occassional small OCD habit that we suddenly realize has lingered. Meg beats those us with a certain joy in her ability, since she has the ERP tools and confidence. However, when a medical issue causes sudden onset, then our world is rocked and we treat medically. The ERP tools do help her get through her day or past a situation, but it is very hard & she needs a lot of help and support & allowances.

 

I also vote for Dr. K & for CamK test, if at all possible financially. You need confidence when you make these difficult decisions, and this doc & this test can help you have that confidence. I love Dr. L as well.

[Megs_Mom]

This really helped freinds. This am I am taking the boy to get blood drawn this morning and send cam kinase test off (can I send out on a Thursday??) And, I am cancelling Dr. Lin and Keeping Dr. K appt. It is obvious after six years or more we just need to go right to the top. Y'all are absolutely right. He is in a really bad ODD thing right now.. WON'T take shower (i just had to go practically force him in after putting shampoo on his dry hair and making him brush through it at least before rinsing) or change clothes. Won't get off video game (dad's fault leaving the door unlocked again... sigh....). In a really angry thing right now. Yesterday i caught him staring at the tv sitting on the sofa, no socks on, should have left for school 5 minutes ago, and tv wasn't even on!!! Scary.

 

thanks again everyone! after so long i feel like im just crazy bad mom and nothing is REALLY wrong with him. Anyone else in that place? ugh...

 

 

So it took me forever to write my last post (I'm at work!), so I just saw this one. Some of what you have listed above screams OCD to me. Especially the showering & clothing.

[Phasmid]

now he's REALLY a mess after telling him he's going for ANOTHER blood draw. Says WE are making him feel that he is not normal while he is just fine. Nothing wrong with him. Now I am sitting here feeling like it's all me, my imagination, my munchausen's syndrome, hypochondriachism, paranoia, own ocd... omg...