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Hyperactivity, Impulsivity etc....Please share!


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Hi All,

 

Before our son (6) was diagnosed with PANDAS in 10/12, he was always an absolute angel in school!! Since then, there are days when he is on yellow or red (instead of green) for being out of his seat, disrupting activities, talking etc... He wouldn't have behaved like this before as he always wanted to be on "green" and was afraid of getting in trouble. Do other parents see these behaviors in their PANDAS kids? Just wondering if this is normal or he is maybe showing signs of ADHD or something else.....

 

 

TX!

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Yes, we do see these exact behaviors during exacerbations. My DS started school, 1st grade this year with a Myco P infection so he was really off. Once I got the teacher educated on his 504 and helped her to understand that putting him on red did nothing to help him things got better. We developed some visuals on his desk that she could point to to get him to calm without calling him out in front of the other children. Also she allowed him to stand to do his work and move around some if he needed to. She also had a loudness visual to let the whole class know whether they should have No talking, whisper, normal voice or outside voice. She could just point to this if my DS was getting too talkative or loud. She had these cute little bugs she made called the "quiet critters". If my DS was quiet and seated he was allowed to have a "critter" on his desk. She also realizes when he just can't pull it together and has another room with a quiet space where he can go to stand, move an do his work. An understanding and creative teacher can make all the difference. Now, he is the star stuident! (well, most days.....) :)

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Our doctor did some bloodwork and found elevated titers but no other infections such as mycoplasma. However our son was not tested for Lyme or any viral infections. He started minocycline in Dec. and for the first two weeks all symptoms were gone! Then he slowly started showing symptoms again although not as bad. Even his teacher remarked during those two weeks that he was back to his old self! How do you know if its a flare or anything else? He just started zithromycin to see if that would make a difference....Does anyone have any thoughts on this?

tx!

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This is interesting always wondered about ds in school. In kindergarten he got a couple yellow stars for talking and got a couple of letters sent home. 1st grade okay I think . Third grade I recall a couple of phone calls with doing farting noises with armpits during lunch. But during every parent teacher conference I would ask about behavior and always he is great!! Which boggles my mind bc at home he would be all over. Come 4th grade once again he is fine but takes longer on tests which is fine they would say bc he completed in time but behavior fine. He has not been on any plans at school bc they have not mentioned that he needs help. Then in 3rd or 4th grade son tells me he falls of his seat at times

bc he rocks backward but do do a lot of kids. So in third grade he had a boy that sits on a yoga ball bc of adhd. By 4th grade he says j with i could sof o one of those. So once again don't hear anything from teachers, was getting great grades so never mentioned it. So 5th grade conference and once again ask teacher about behavior and things and once again he is fine. Over all these years he is very active at home and has a hard time doing homework and just everything here and there but okay at school!! He must really hold it in!! I never jumped on doing the plan for him bc he seems to do okay at school and just let out at home. these yellow, green red cards are great depending on the teacher. I remember dd getting a red card bc she talked in the washroom and got her seat moved all in the first three weeks of first grade. This really upset her and got spoke to teacher who was very strict said she should be talking in the washroom. She had a tough year bc the teacher was very harsh. Gosh of ds had her who knows. I would not worry about the signs so much especially when he is so young. It really depends on teachers. I wonder how ds has passed on through the years and dd gets screamed at in first grade when she was completely different.

Mar

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My son was hyper but managed to keep it together in school and never get in trouble. He's also an excellent student. How's he's managed, at times, is beyond me. Abx helped a lot but not completely. What has given additional help is working on getting his very low ferritin levels up. A new doctor we started seeing a few months ago wanted to treat it and gave me a very gentle iron in a different form called Ferrochel. DS is sleeping better. I've been able to lower the melatonin. He able to sit in his chair at dinner better. Overall, we are encouraged by the improvements we've seen. If you haven't checked ferritin, iron sat levels, I would encourage you to and treat under a doctors care.

 

I was told by two PANDAS experts not to treat the low ferritin. His new doc told me she's being seeing a lot kids with low ferritin, they've all had babesia and they are better when the low iron stores has been addressed. She actually asked me if the recommendation not to treat low ferritin was for a specific reason or because the other docs didn't really know how to address it.

 

 

My son has babesia but we haven't started that treatment yet. Babesia uses iron.

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My son was hyper but managed to keep it together in school and never get in trouble. He's also an excellent student. How's he's managed, at times, is beyond me. Abx helped a lot but not completely. What has given additional help is working on getting his very low ferritin levels up. A new doctor we started seeing a few months ago wanted to treat it and gave me a very gentle iron in a different form called Ferrochel. DS is sleeping better. I've been able to lower the melatonin. He able to sit in his chair at dinner better. Overall, we are encouraged by the improvements we've seen. If you haven't checked ferritin, iron sat levels, I would encourage you to and treat under a doctors care.

 

I was told by two PANDAS experts not to treat the low ferritin. His new doc told me she's being seeing a lot kids with low ferritin, they've all had babesia and they are better when the low iron stores has been addressed. She actually asked me if the recommendation not to treat low ferritin was for a specific reason or because the other docs didn't really know how to address it.

 

 

My son has babesia but we haven't started that treatment yet. Babesia uses iron.

Thank you for sharing this information.

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Nicklemama you mentioned an interesting point. Ds ferritin levels were lower at the time years ago and we supplemented for about a year. Along with diet and this he got better. I need to get this retested. Could low ferritin play a role in this. Interesting.

Mar

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Low ferritin can cause hyperactivity and poor sleep due to restless leg syndrome. DS was all over the bed during the night. He had ferritin levels of 14(where 22 was lowest normal) for 3 yrs. We've been supplementing for about 6 wks. His retesting is in another month. Can't wait to see if I'm right.

 

His doctor told me iron was essential in having a healthy immune system.

 

Dr K and Dr T said not to supplement because it could be feeding bacteria and we might get increased symptoms, so I left it alone all these years. We know we are most likely feeding his babesia but we've seen no flares or worsening of his symptoms. He's actually in a pretty good place right now.

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Hyperactivity is one of our stubborn symptoms. From day one it was there, and our ped has always discussed the possibility that the ADHD may just be "separate" from the PANDAS. Yet - it fits the criteria, but for our son, it was the one thing that just would not resolve with any treatment. When he got his tonsils/adenoids out a while back, the hyperactivity (and ALL other symptoms) were gone, which helped us determine that - yes - his ADHD was PANDAS. Unfortunately, he got strep again 6 weeks post-op and we were back at square 1.

 

The hyperactivity was the first symptom to come back, and it had gotten progressively worse over the year. Finally, in December, we made the decision to add ADHD meds (low dose Vyvanse) to the mix. He was becoming so impulsive, it was becoming dangerous. Darting into traffic, running off in parking lots or crowded places. Things that could ultimately get him killed (standing at the bus stop every morning was a nightmare!!!) The meds helped - we are 4 weeks post IVIG right now, and we took him off for a couple of weeks and he did well. We added them back this week, because we saw that he needed it again. His sister currently has strep, and while he has not reacted to her (Thank God!) the hyperactivity is back.

 

It was a tough decision for us to add the ADHD meds - and one that took 3 years to come to, but in the end, I'm glad we did. We chose vyvanse because it's a low dose, and you don't have to wean them off if you want to stop it.

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My son was hyper but managed to keep it together in school and never get in trouble. He's also an excellent student. How's he's managed, at times, is beyond me. Abx helped a lot but not completely. What has given additional help is working on getting his very low ferritin levels up. A new doctor we started seeing a few months ago wanted to treat it and gave me a very gentle iron in a different form called Ferrochel. DS is sleeping better. I've been able to lower the melatonin. He able to sit in his chair at dinner better. Overall, we are encouraged by the improvements we've seen. If you haven't checked ferritin, iron sat levels, I would encourage you to and treat under a doctors care.

 

I was told by two PANDAS experts not to treat the low ferritin. His new doc told me she's being seeing a lot kids with low ferritin, they've all had babesia and they are better when the low iron stores has been addressed. She actually asked me if the recommendation not to treat low ferritin was for a specific reason or because the other docs didn't really know how to address it.

 

 

My son has babesia but we haven't started that treatment yet. Babesia uses iron.

Wow. Good to know. My dd has babesia, but I have never even thought about this, much less been told about it. It makes sense now because my older daughter has babesia but does not have PANDAS symptoms. She has extreme pain in her sternum area and air hunger. I just recently read up on babesia again and told her that the reason that she feels that she can't breathe is not because she's not bringing o2 in but because babesia is destroying red blood cells (she's 16, and I said it in a low-key, don't freak her out way). Red blood cells which bring o2 to your vital organs. And, of course, anemia follows. Why was I not thinking of that?

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Our doctor did some bloodwork and found elevated titers but no other infections such as mycoplasma. However our son was not tested for Lyme or any viral infections. He started minocycline in Dec. and for the first two weeks all symptoms were gone! Then he slowly started showing symptoms again although not as bad. Even his teacher remarked during those two weeks that he was back to his old self! How do you know if its a flare or anything else? He just started zithromycin to see if that would make a difference....Does anyone have any thoughts on this?

tx!

Maria Mako--

 

I received you PM but I am also replying here just to make sure you see it. Everyone's journey is different but here is a little of mine that hopefully might give you some insight"

 

What I have learned during this last 18 mos with my son is that he flares with mainly the following issues: (His initial trigger was Strep/Scarlet fever)

 

1. Allergic reactions-- he has a lot of allergies and when pollen etc is bad his meds don't cut it.

2. Viruses colds etc-- ANY illness causes a flare a mild cold, a stomach virus etc.

3. Exposure to someone else with strep

4. Strep

5. Myco P

6. Gluten exposure- he also has celiac disease

7. Dermatalogical issues/skin infections

8. Stress

 

I figured all of this out by carefully tracking his symptoms on a rating scale and then noting any illness, medication change etc as well. I then graphed it and wrote in the changes, illnesses etc. If you would like for me to email you my charting system I would be more than happy too, Just give me your email.

 

Our PANDAS doc had my DS tested for celiac, allergies, immune deficiencies, Myco P. etc. His initial Myco P was negative, but one can catch that at any time-- my DS did last August. Know that it is difficult sometimes to catch the rise in the IGM from Myco P== you may get a high IGG that is indicative of past infection but does not rule out current infection. I would encourage you to have viral titers run and to test for Lyme and co infections. If your DS has any gastric or bowel symptoms it might be worth it to test for celiac. Also an allergy scratch test would be good. I never knew that my DS had such severe allergies because his body was reactive in an autoimmune way vs traditional allergy. Treating them has been so helpful.

 

It is a process and it takes time so do what you can when you can. It is like peeling the layers of an onion. You find something, treat it then go on to the next thing. If one antibiotic does not work, try another. For my son Augmentin is the most effective Hope this helps you!!

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Yes, we do see these exact behaviors during exacerbations. My DS started school, 1st grade this year with a Myco P infection so he was really off. Once I got the teacher educated on his 504 and helped her to understand that putting him on red did nothing to help him things got better. We developed some visuals on his desk that she could point to to get him to calm without calling him out in front of the other children. Also she allowed him to stand to do his work and move around some if he needed to. She also had a loudness visual to let the whole class know whether they should have No talking, whisper, normal voice or outside voice. She could just point to this if my DS was getting too talkative or loud. She had these cute little bugs she made called the "quiet critters". If my DS was quiet and seated he was allowed to have a "critter" on his desk. She also realizes when he just can't pull it together and has another room with a quiet space where he can go to stand, move an do his work. An understanding and creative teacher can make all the difference. Now, he is the star stuident! (well, most days.....) :)

WOW...what an incredible teacher. Cyber hugs to her!

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