Behavior issues vs. more serious PANDAS issues

[Phasmid]

FINALLY DID IT!! CAM KINASE OFF IN THE MAIL!!!

[Mary M]

phasmid-my dd12 doesn't take showers in exacerbation either. I firmly believe it's an ocd issue. I know everyone wants to interpret the OCD as wanting to be clean but it's not being clean that is at issue, it's the process and my dd gets so bogged down in the process she can't even get to the shower to get clean. It is cruel to watch and I can only imagine how painfully cruel it must feel like to our kids as they live through this terror.

[Mary M]

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...

 

 

You just described us a few weeks ago when we had dd12's Cunningham test drawn. It had only been 3 days since her last blood draw and she was irate! She defiantly screamed at us that she had been reading the American Girl My Body Book and it specifically stated that when you're growing up your body goes through changes, including behavior changes and that the doctors and us (her parents) have it all wrong--she doesn't have OCD or this PANDAS thing she's just going through puberty! I questioned our decisions but of course, I had to come back to reality...we have 2 other daughters and puberty doesn't look like PANDAS...Then a week later we got her CaMK score of 166, pretty much a confirmation that it's not a pre-puberty issue. You are doing everything right...this is not your imagination.

[EAMom]

During the worst of my dd's PANDAS (when she was 7.5 years) she went 3 weeks without washing her hands. I think she did take a few showers though....I don't really remember that part!

[pandakid11]

Hi

What do you do to get them to take a shower or bath? OCD is creating some type of fear. Thanks

 

 

 

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.

[911RN]

FINALLY DID IT!! CAM KINASE OFF IN THE MAIL!!!

 

 

 

Where did you send it? Is Madeline Cunningham's lab open for business and accepting samples?

[nicklemama]

I'm glad you are keeping the Dr K appt. DS has never been nonfunctional. He's very dysfunctional, though and that is not acceptable to me. We are two months post IVIG #2 with DrK.

 

We cannot live with the anger, aggression, rigid thinking, compulsions to play video games or whatever else is the compulsion du jour. They cause problems in our household. The separation anxiety, social issues. We don't function as a normal family and I'm not accepting of that. Going to school and school work has not been a problem. He probably appears to others as quirky and /or spoiled in public.

 

I don't think just because a child isn't completely nonfunctional, additional treatment should not be considered. I will fight this to my last breath.

[LNN]

Just wanted to point out that this thread is almost 3 yrs old. I haven't seen some of these members in a long time...