ADHD type symptoms?

[butterflymom]

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Edited October 5, 2015 by tampicc

[Phasmid]

Hi,

 

ADHD was a HUGE part of the scenario for us. I have to say that antibiotics took care of most of this. However, over the course of six years we have found that a really nutrient-dense diet helps a lot. I think when the brain is affected so greatly, the nutritional needs of the child are even more than normal. I started his day in the morning with lots of protein rather than breakfast cereal. I also used magnesium citrate and I could really see a calming effect. A diet of mostly fresh, whole steamed veggies and lots of whole fruit helped my son a lot. He was totally off free sugar for about 9 months. I believe in nutritional therapy as much as antibiotic therapy.

 

 

[pathfinder]

Yeast medication helped my son with ADHD symptoms. I wish I did not put him through ADHD meds all those time and instead had him on yeast meds. He is still a little restless but his concentration improved so much with yeast meds. It is something to think about.

[Megs_Mom]

=He's hyper, silly, non-compliant, will color but won't write, has lack of focus and has to be prompted over and over to do what he's supposed to.

 

How was he in school prior to PANDAS? Is this a marked change in his behavior? Whew, you have listed a lot of challenges - I think you should be validly concerned. I think you raised a number of clues - silliness certainly makes me wonder re yeast, so you could try that protocol.

 

For a lot of children, abx, even at low doses helpa a lot with hyper behavior(it does for my daughter). Also, children with mild OCD are often misdiagnosed with ADHD. They may have compusions happening that cause them to be non-compliant. They are often very good at hiding these, and disguising a compulsion with a silly or even dumb response instead. Many kids would rather look goofy than crazy. So they may not tell you that they "have to get up and down in multiples of 12", they just act like they are bouncing off the walls. You mentioned that he will not write - which can be a PANDAS thing - I think they are having challenges getting the right signals from the brain to their hand. You may want to try the test of having him write a few phrases (do one that he copies, and another that you say out loud and he writes it). Then give him a dose of Motrin. 30 minutes later, do the same test with slightly different phrases. What is the difference? Is it easier for him, is he more compliant or cooperative? If nothing changes, that is not diagnostic , but if you see a huge difference, then you have learned an important clue. Hopefully you have a good PANDAS doc that you can go discuss this with as well.

 

I would second the diet comments - we are not extreme about it, but we are very serious about a protein based breakfast in particular.

Edited January 7, 2011 by Meg's Mom

[JAG10]

My dd11 has a very similar set of lingering symptoms, which you can imagine has a different set of consequences for a 5th grade girl than a K boy.

 

She was very silly/goofy by summer after 1st grade (we didn't discover PANDAS until 1 year ago.) So much so, she was "diagnosed" bipolar/mood disorder though we only saw the manic/Jim Carey side and never any raging, ODD, turn on a dime wickedness. The silly/goofy behavior has improved dramatically since her 1st IVIG in May, and it was REALLY bad for her age. She is scheduled for her 2nd IVIG in 3 weeks as we hope to get those lingering issues resolved.

 

The problem with our neurologically/cognitively sick kids is that their symptoms can back door them into so many different diagnosis, it's almost comical. Every time I've ever mentioned the "silly/goofy" symptom on the board, I've had many different folks mention yeast. She has no physical signs of yeast and the silly/goofy thing has improved with medical treatment for PANDAS. The months before her first IVIG, she had been on an unsuccessful cocktail of 3 different types of psych meds; a mood stabilizer, anti-depressant and stimulant to try to get her to a point where she could attend school with support. Now she's on NO psych meds, just zith., fish oil and probiotics.

 

She still reacts to immune challenges, she still has difficulty with task completion (needing prompts to do too much) and concentration, her pupils are still dilated a lot. Her ASO and DNAse B titers have never tested in the normal range (YET) but they are no longer off the charts & over the tilt measure...and neither are her symptoms. I hear you....I want that last 25% too and we are going to get there!!!

[butterflymom]

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Edited October 5, 2015 by tampicc

[dut]

Hello - also you might want to consider sensory processing disorder which, in our experince is high up on the PANDAS symptom list and the result can look a lot like ADHD. I had it explained to me that while they are trying to integrate all that sensory stuff, made difficult by the PANDAS I believe, they find it so much harder to focus, concentrate, do as told. Even the running, bouncing off walls behaviour can be sensory as they find it easier to be in motion than to be still, especially if dealing with vestibular issues.

 

Sensory issues came hand in hand with PANDAS for us and when we totally heal from each PANDAS episode the sensory issues go away too. There are ways to cope better with sensory issues that may make life easier during an episode. I'm not an expert but there are many posts on the forum if you do a search and some very knowledgable folks too if you ask some questions.... good luck....

[LNN]

While the "answer" for us was medical (correct treatment made the add/adhd go away), as a coping tool during all those endless months, we implemented a reward system. His teacher would give him a tally mark on a small paper taped to his desk every time she caught him "on task". Never any punishment for when his mind wandered (other than having to complete important assignments at home). When he earned enough tally points, he could "shop" from a menu of rewards we gave at home. Earn 10 points - he could "buy" a half hour of staying up late, 20 points = watching mom do an embarrassing dance in public, 50=ice skating. Some menu items cost money, many cost nothing.

 

At his worst, no amount of rewards could help. But when he was in better spots, it motivated him. It also helped make the teacher part of the team. It's not a solution, but it might help as a coping mechanism.

[smartyjones]

Sensory issues came hand in hand with PANDAS for us and when we totally heal from each PANDAS episode the sensory issues go away too. There are ways to cope better with sensory issues that may make life easier during an episode. I'm not an expert but there are many posts on the forum if you do a search and some very knowledgable folks too if you ask some questions.... good luck....

 

 

for us too, many of ds's issues fall under the realm of sensory. i recently found the book When Labels Don't Fit very helpful. it had some specific techniques to implement that we found very helpful.

 

just in our situation, not saying this is yours, last spring, we thought ds was doing quite well. he had had an exacerbation in the fall that seemed to take a long while to get out of. but, after the holidays, into the spring, we believed him to be doing rather well. we discovered at our spring conference, that was really not the case in school -- and i thought i was in quite good contact with the teacher. eariler in the year, i had found an integerative MD that i wanted to go to. dh wasn't so eager - $$ - and we thought things were good. after that conference, we did go to that dr and found a couple other infections, as well as strep still being a problem.

 

just my opinion, from how i read the symptoms you list, i'd say those are pandas symptoms. it may be that he isn't displaying this as often as previously or only in stressed situations. have you spoken with the dr who prescribed the abx?

Edited January 8, 2011 by smartyjones

[SarahJane]

Hey T! You may've done this, but ask the teacher if anyone has been out with strep (including her or the aide or their kids). Could even be that there's a carrier in the classroom. That's what we suspect was happening with our ds last year in K...he'd usually have good days when one particular boy was out (who was also the boy that picked on him/so there was some psychological stress involved there too. He'd also do really well after breaks. (Had a FULL week of good behavior after spring break.) I do also think that it's possible that the teacher is very likely focusing on EVERYTHING SINGLE LITTLE THING your son is doing. For all you know, there are 3 other boys in the class acting the same way. Because you're asking her about it, she's going to tell you, but the other 3 boys that might have been doing the same things probably didn't get notes sent home. Make sense? OR there's a chance she didn't see the other boys. I know when I would be at lunch with ds that I'd see the kids in line with several of them maybe jumping on each other...BUT the one that got in trouble is the one she saw. (My kid is an only child, so he didn't know how to be quick. He'd emulate the other kids & be the one that was caught. He was also an easy target.) Also, if your son's getting in trouble for interactions with other kids, it's usually the one that reacts that gets caught. (That's ONE good thing that came from the school psychologist...so the teacher used that as a mantra for a little bit until she forgot about it.) I also got the impression that K teachers ramp up quickly after winter break and actually start teaching new stuff for a few weeks until they start the incessant reviewing again before doing more skills testing. It seems that any issues they see with this quick change/transition is considered to be a problem the kid is having vs. classroom-induced. But seriously, no issues are ever classroom/teacher-induced, are they? Do you get the chance to observe the classroom to see if there's any "crazy-making" done by the teacher? I saw a lot of that in our class. I also found that if I could get my son talking about what else had happened in his classroom on days he got in trouble that there was usually another disturbance that didn't involve him. For example, there was a day when another little boy got in big trouble in art (totally separate from anything involving my son), but that incident stuck with my kid and affected him later that day. Stress was a big factor with his PANDAS behaviors at school since our ds is fairly sensitive. And he was scared of the principal but the teacher would always send him to the principal's office. Grrr. I have to stop now...can feel the PTSD starting...must breathe in, breathe out, breathe in, breathe out. Good luck!

 

(Also, we DO think our ds is getting a cold or something per our other messages. We've had really good behavior since about a week after his IVIG in Nov, so maybe we're just due for some flipping back of the pages here at 7 weeks post IVIG. Not getting too worried yet but concerned. Hoping it's just a glitch. I put him on a new fish oil after not giving it to him for a little while...maybe that's doing something. Changed other vitamins 2 weeks ago but didn't see changes then. We'll see how today goes.)

[butterflymom]

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Edited October 5, 2015 by tampicc

[Stephanie2]

HI. My son was treated with two months of abx this fall for sudden onset of tics and adventitious mvts, and has been off of them since Nov. 22. We've had intermittant tics (some eye blinking or head nods for an afternoon or two, but they've basically stayed away).

His kindergarten teacher, however, has written me numerous emails about his problems in school. He doesn't have an ADHD diagnosis, but the behaviors kinda seem like that, and I think it's residual PANDAS:

 

He's hyper, silly, non-compliant, will color but won't write, has lack of focus and has to be prompted over and over to do what he's supposed to. His teacher doesn't know how to handle him and is getting frustrated and going to talk to the school counselor for advice.

 

Should I wait this out and see if he will continue to heal and get over this, or should I try to put him back on abx for a while just for these symptoms?

 

This screams yeast to me (especially the silliness). One way you could test this is by giving him a couple activated charcoal capsules. If it goes away for an hour or two then you know it is gut related (most likely yeast). Have you had him tested? You would need to do the following test (or one like it):

 

http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp