If the biggest symptom is mood/behavior...

[ajcire]

If your child's biggest symptom is mood/behavior, do you think you can actually get back your child once you get the pandas underr control or do you think a part of them is lost.

 

 

Just feeling really sad that my child might not really ever be who he really is and wondering if he feels it too. I have asked him questions trying to lead him into how he feels but he's only 7 and he just has no clue what I am talking about. He doesn't know anything is wrong.

[bubbasmom]

I don't know if my 12 year old will ever be the same again. But I know he has ruined every friendship he's ever had. Its so sad he has NOT ONE friend. I don't know how to fix that. And he started Jr. High this year so it really sucks, he's kind of ruined his reputation at a new school too.

We did IVIG 4 weeks ago. For about 4 days I thought it was going better. Now, it seems like we have started from square one again. We're getting blood tests done today I'm afraid he's been re-exposed.

 

 

If your child's biggest symptom is mood/behavior, do you think you can actually get back your child once you get the pandas underr control or do you think a part of them is lost.

 

 

Just feeling really sad that my child might not really ever be who he really is and wondering if he feels it too. I have asked him questions trying to lead him into how he feels but he's only 7 and he just has no clue what I am talking about. He doesn't know anything is wrong.

[faith]

Have you guys had any kind of behavioral therapy as well? I know it may not be the answer, but maybe after behaving or feeling one way for so long, its hard to kind of get out of it, kind of like re-learning how to interact. In our school, they have like a 'friendship' group for kids who are kind of impulsive, can't keep their hands to themselves, I guess the adhd type, and I think they talk to the psychologist in a group (or individually, not sure) on their feelings and how they think they can improve or better handle certain situations. it sounds like a good idea, for these kids kind of need some direction, some don't even really have an idea that they are going about it the wrong way. my son is not in it (he does fine with peers, he needs more of a 'mother/son' group, lol) but I've heard of it from a couple other parents, I think its a great idea. maybe you could find something like that.

 

I would also still look into food sensitivites and allergies, and maybe try a clean up of diet, maybe some of those things can contribute. I recommend the book "Is This Your Child", by Doris Rapp. it may help to fine tune some of the behaviors that may come from food intolerance.

 

Faith

[bubbasmom]

My son has such rage right now, we're in the midst of an 'episode' that there's no way he would cooperate with therapy. I wouldn't even be able to get him to go. He's very shy, he won't even talk things over with anyone including me. It's sad it really really is.

 

Have you guys had any kind of behavioral therapy as well? I know it may not be the answer, but maybe after behaving or feeling one way for so long, its hard to kind of get out of it, kind of like re-learning how to interact. In our school, they have like a 'friendship' group for kids who are kind of impulsive, can't keep their hands to themselves, I guess the adhd type, and I think they talk to the psychologist in a group (or individually, not sure) on their feelings and how they think they can improve or better handle certain situations. it sounds like a good idea, for these kids kind of need some direction, some don't even really have an idea that they are going about it the wrong way. my son is not in it (he does fine with peers, he needs more of a 'mother/son' group, lol) but I've heard of it from a couple other parents, I think its a great idea. maybe you could find something like that.

 

I would also still look into food sensitivites and allergies, and maybe try a clean up of diet, maybe some of those things can contribute. I recommend the book "Is This Your Child", by Doris Rapp. it may help to fine tune some of the behaviors that may come from food intolerance.

 

Faith

[FallingApart]

This is my question too. Our DD just turned 4 and has been in an exacerbation for an entire year. We had 2 brief reprieves with the 2 IVIGs we did. But I saw first hand that therapy was unable to reach her when she was in an exacerbation. We have just signed up for ABA therapy. This firm provides ABA therapy for autistic children and is taking our daughter even though she hasn't been labeled autistic. I'm wondering if she will benefit from the therapy and either unlearn the PANDAS behaviors or learn replacement behaviors instead.

[thereishope]

My son's biggest symptoms were mood, behvaior, OCD, and more. The first 2 times, it did all go away on its own. The third time, he had residual problems and we had to overcome those different than in a PANDAS exacerbation. I believe for some, some symptoms may end up becoming habit or the brain is so used to thinking that way, you need to eventually retrain it.

 

As it stands, my son still has some bad behvaior now and then, but he's 6. The difference now is I can reprimand him and reason with him. I can give utimatums and such. During PANDAS, that is impossible.

[ajcire]

Bubbasmom, hugs!

 

I think with my son it's more of an attitude. He also just doesn't seem happy. Even when he's happy he doesn't seem happy. He's the kid you can take to Disneyworld who will have the time of his life but yet if you watched him you would not know he was having a great time.

[Guest Angela Shaw]

If your child's biggest symptom is mood/behavior, do you think you can actually get back your child once you get the pandas underr control or do you think a part of them is lost.

 

 

Just feeling really sad that my child might not really ever be who he really is and wondering if he feels it too. I have asked him questions trying to lead him into how he feels but he's only 7 and he just has no clue what I am talking about. He doesn't know anything is wrong.

 

My dd's personality, now about a week into a 2000mg augmentin dose daily along with Advil, is coming back to the surface more and more. There are times I see her old self and I KNOW that she'll be okay eventually and that these problems are transient. Then the OCD rears it's ugly head and fear enters my heart again. But I HAVE to believe we'll get her back full time. My dh is a glass half empty kind of guy and he doesn't like to get his hopes up only to have them smashed so he's more cautious in his thinking but when I see those glimpses of her old self more and more, I JUST KNOW she's in there, waiting to be well.

 

Angela

[Worried_Dad]

Ditto! Since starting the "Saving Sammy" dose of augmentin, we're seeing more of our son's "old" personality surface. He's been through so much - and it's been so long - that I don't think he'll ever be the kid he was before this hit. But in some ways, maybe he'll be stronger.

 

I just remind myself how poised and together Sam Maloney was during the Today Show interview. That gives me hope!!!

 

 

My dd's personality, now about a week into a 2000mg augmentin dose daily along with Advil, is coming back to the surface more and more. There are times I see her old self and I KNOW that she'll be okay eventually and that these problems are transient. Then the OCD rears it's ugly head and fear enters my heart again. But I HAVE to believe we'll get her back full time. My dh is a glass half empty kind of guy and he doesn't like to get his hopes up only to have them smashed so he's more cautious in his thinking but when I see those glimpses of her old self more and more, I JUST KNOW she's in there, waiting to be well.

 

Angela

[bubbasmom]

I'm having trouble finding the Saving Sammy book and not that I have time to read a book right now anyway!!! So when you say Saving Sammy dose of Augmentin how much is that? Is that the 2000 mg a day the other mom was talking about?

Ditto! Since starting the "Saving Sammy" dose of augmentin, we're seeing more of our son's "old" personality surface. He's been through so much - and it's been so long - that I don't think he'll ever be the kid he was before this hit. But in some ways, maybe he'll be stronger.

 

I just remind myself how poised and together Sam Maloney was during the Today Show interview. That gives me hope!!!

 

 

My dd's personality, now about a week into a 2000mg augmentin dose daily along with Advil, is coming back to the surface more and more. There are times I see her old self and I KNOW that she'll be okay eventually and that these problems are transient. Then the OCD rears it's ugly head and fear enters my heart again. But I HAVE to believe we'll get her back full time. My dh is a glass half empty kind of guy and he doesn't like to get his hopes up only to have them smashed so he's more cautious in his thinking but when I see those glimpses of her old self more and more, I JUST KNOW she's in there, waiting to be well.

 

Angela

[dut]

Our dd has a lot of behaviour and mood changes with episodes. She becomes VERY combative/defiant and is impossible to discipline or reason with. The usual methods just seem to escalate her behaviour. When she is not in an episode all of her changes go away. She is 6 now and, I believe, has had this since as early as 2-3. So far she has come back to us 100% each time although it can take as long as 5 months or so each time to fully resolve. The anger/tantrums and bad attitude seem to be the last to go.

[ShaesMom]

Erica,

 

My daughter is also 7 and has had Pandas since 11/08. It was mild through 2008 and became severe in 1/09. She received IVIG in July (2g/kg over 2 days) and now receives monthly IVIG. She is also on prophylactic abx. I can tell you without hesitation that my daughter has not only returned completely to her prePandas self but is actually healthier & happier than she was prior to 2008. Today we were at the Doctor's office for my son and she was talking up a storm to both the nurse & Doctor. She would have NEVER done this before.

 

Do not give up hope. You can and will get your child back.

 

Sam

[matis_mom]

My heart goes out to all of you who are dealing with the rages/bad attitude side of this problem. Do you know if your children have any yeast issues? I remember reading a post a while back about a lot of those symptoms improving once yeast was addressed. I may be wrong, but it's something to look into, especially if you've been on abx for a while. For some probiotics, kefir and a healthy diet its all it takes. My son was having urinary issues related to yeast, so we are having to keep him on Nystatin for now.

If you search this forum for yeast / candida I think you'll find a threat with lots of good info on it... I have go make dinner now...

[T_Mom]

Erica, you have gotten alot of good feedback here--I want to add that YES I too see my daughter again--after ups and downs over a two year period of time, and she is on full-strength antibiotics, 10 months now. She is back.

 

I can tell you that when her personality started to come back, and her academic abilities...it was our daughter again--A stark contrast, stark. Hang in there--There IS HOPE...

 

If a mom were to come up to me tomorrow on the street, after our experience I would say: Antibiotics full strength for at least a month--WORTH A TRY. Then, if inflammation appears to remain--one of the treatments we have seen work on kids in the past, steroids, IVIG, or PEX would be what I would consider doing.

 

Their personality does come back--it takes time and healing.

[ajcire]

Thanks everyone! It is encouraging to hear. I feel like I can't even explain my son but you guys here are the closest to getting it for sure. He's doing fine in school, his teacher talked about his arguing but she said he is mature and respectful about it. I guess he can control it enough there. It's really clear to me that anyone I try to explain this to who isn't living it does not get it at all. I have heard I am making a big deal about nothing, just ignore him because it's for attention, he has control over what he is doing, he's just being a kid, I need to have better consequences.... just everything and it's from people who we care about and who care about us but ugh. It's got me in tears every time someone tells me that he's not being that "bad"... Yeah, what he is doing is not awful if it was a one moment thing but it's constant. It's not even all awful, he's a loveable kid but it's all "off"... even when he's being kind and mellow there is something that maybe only a mother can see.

 

Seriously, I thought I would handle this all better than I am.