2 weeks into Augmentin....

[fightingmom]

So this morning DS woke up still very agitated. He was looking for a fight and blaming me for his meltdown last night, telling me how and why it was all my fault. I made him a smoothie and put some magnesium powder in it. I also gave him 600mg of ibuprofen. I realize that's 200mg more than regular dose but felt we are in a crisis right now and wanted to see if helped.

 

I stayed downstairs and out of the way. He came down on his own about 1-1 1/2 hours later to tell me he feels "better" and he's sorry my husband didn't get any sleep before work this morning. He asked me what my plans were for the day and said he may stay in because it's a little cold today.

 

I feel like as small as it may seem that this was a HUGE shift in behavior, simply from ibuprofen. And he also came down on his own to apologize for the same behavior he had just blamed me for earlier.

 

Our appt with Dr. B. is about 11 days away and feels like a lifetime away. I can't wait to see if there are any coinfections involved, but if not I feel we need to get on the fast track in treating this. He's already 14 and I don't want to miss the window of opportunity if there is one...

 

Honest and truly if we had not been already been down the PANDAS path last night he prob would have gone back to the hospital. It was that bad.

 

I have read that after the steroids wear off there can be a big explosion of symptoms. Could that be what happened last night? Any thoughts?

Edited March 31, 2012 by fightingmom

[EAMom]

So this morning DS woke up still very agitated. He was looking for a fight and blaming me for his meltdown last night, telling me how and why it was all my fault. I made him a smoothie and put some magnesium powder in it. I also gave him 600mg of ibuprofen. I realize that's 200mg more than regular dose but felt we are in a crisis right now and wanted to see if helped.

 

I stayed downstairs and out of the way. He came down on his own about 1-1 1/2 hours later to tell me he feels "better" and he's sorry my husband didn't get any sleep before work this morning. He asked me what my plans were for the day and said he may stay in because it's a little cold today.

 

I feel like as small as it may seem that this was a HUGE shift in behavior, simply from ibuprofen. And he also came down on his own to apologize for the same behavior he had just blamed me for earlier.

 

Our appt with Dr. B. is about 11 days away and feels like a lifetime away. I can't wait to see if there are any coinfections involved, but if not I feel we need to get on the fast track in treating this. He's already 14 and I don't want to miss the window of opportunity if there is one...

 

Honest and truly if we had not been already been down the PANDAS path last night he prob would have gone back to the hospital. It was that bad.

 

I have read that after the steroids wear off there can be a big explosion of symptoms. Could that be what happened last night? Any thoughts?

 

How about keeping him on 600mg of Ibuprofen 3x daily for the next week, and see if it helps?

[cobbiemommy]

Ibuprofen can be a big help. We use it as necessary. I feel for you so much. DS, 12 is 5'5" and 170 lbs, so I get that whole scared of their strength thing.

 

Hope you get fast track approval. We are waiting for our IVIg approval from the insurance company and just trying to maintain our gains.

 

Hope you have a good day.

[fightingmom]

I needed someone to give me the mental ok to keep going with the ibuprofen. I didn't give it to him yesterday and we had another melt down/rage. I'm dosing him before school today and when he gets home and will continue through the week.

 

My husband has slept on the couch the last two nights (he's NEVER done this) and I'm not sure how much longer our marriage will survive this. he puts up with so much but at a certain point will step in when my son is throwing things are slamming things and told me last night he is afraid my son will hurt me. Him intervening, no matter how small (a simple "that's enough" will send my son into overdrive) inevitably ends in my son calling him horrible names or wishing him dead. We've been together for 7 years and he's been very patient, but I think this ###### has become too much for him to handle. He's losing stream and patience and doesn't quite comprehend the ins and outs of this illness or how my son can be ok with his friends and be such a monster at home. It saddens me to think that an otherwise wonderful relationship without any other issues has been destroyed by this, but I fear it has.

 

At the same time, I am going to fight for my child and do what I can to get him well, even if it costs or has cost me my marriage in the process.

[bulldog24]

Fightingmom- It seems we have much in common. My daughter has been doing the same thing. Perfectly fine at school or at the BArn, but gets home, and she lets me have it. I simply asked her to grab me a paper towel the other day and she flipped her lid saying things like she wishes she was never born. For some reason its harder for me to remember that this is a medical problem not her just being nasty, than knowing when my son who is 6 does it and knowing its most likely PANDAS.

 

I feel like an awful mother and I FEEL lIke my daughter hates me. We have to try to remember they are sick and they cant help most of it.

 

While my husband has been a saint (married 11 years ago) through my LYme and this PANDAS stuff, He has no idea what its like to be stuck at home with 2 PANDAS kids and a 7m old and be disabled at the same time. I feel like all I do is give out meds, and get yelled at by everyone. Last week was a very rough week.

 

Could your husband sit in on some appointments with dr. B? Maybe that will enlighten him?

Oh and my husband also pulled the "I am not going to sleep in our bed" BS last week because "he needs his rest"... HA I darn near blew my lid.

 

Anywho- trying not to rant but wanted to let you know you are NOT alone.

 

I plan on calling Dr. B offic ethis am to try to get some help for my daughter! I dont know what else he can do but cant hurt to try

[EAMom]

I needed someone to give me the mental ok to keep going with the ibuprofen.

 

I give you the okay

 

Just be sure to give it with some food (not on an empty stomach).

 

Hang in there!!

[LNN]

I needed someone to give me the mental ok to keep going with the ibuprofen. I didn't give it to him yesterday and we had another melt down/rage. I'm dosing him before school today and when he gets home and will continue through the week.

 

My husband has slept on the couch the last two nights (he's NEVER done this) and I'm not sure how much longer our marriage will survive this. he puts up with so much but at a certain point will step in when my son is throwing things are slamming things and told me last night he is afraid my son will hurt me. Him intervening, no matter how small (a simple "that's enough" will send my son into overdrive) inevitably ends in my son calling him horrible names or wishing him dead. We've been together for 7 years and he's been very patient, but I think this ###### has become too much for him to handle. He's losing stream and patience and doesn't quite comprehend the ins and outs of this illness or how my son can be ok with his friends and be such a monster at home. It saddens me to think that an otherwise wonderful relationship without any other issues has been destroyed by this, but I fear it has.

 

At the same time, I am going to fight for my child and do what I can to get him well, even if it costs or has cost me my marriage in the process.

 

I think steady dosing of ibuprofen for a week or two would be very insightful. You might also consider using Aleve in the morning before school, as it lasts thru the entire school day. Then you can dose with ibuprofen after school. If you are super concerned about the liver, you can research milk thistle, as it's a great liver antioxidant (do not use if there's a ragweed allergy and do look up medication contraindications - there are a few meds that do not go well with milk thistle). If Aleve isn't as effective, when you see Dr B, bring a school form so he can give the school nurse authorization to administer ibuprofen during the day.

 

As for your marriage...Your DH has put up with a lot and is concerned about how you're being treated. He wants to protect you and shouldn't be made to feel like a villain for his views. Maybe he doesn't see things the way you do but his views are valid and should be considered. I'm not saying you shouldn't continue to fight for your son, but it doesn't have to be an either-or decision. Illness or not, our kids do need consequences for their behaviors. Perhaps doled out with understanding, but consequences nonetheless. Your safety needs to be a priority and DS needs to know there's a line he cannot cross. With a growing body and strength comes a greater responsibility for learning to control one's actions and words.

 

My DH is generally very patient and has fully supported our journey. But he has needs too and the kids can't always be in the driver's seat. We have a strong marriage but it has its scars and we're needing to do repair work after so many years. Any chronic illness affects the whole family, not just one person. Everyone needs to feel there's a point where their needs take priority. Sometimes, inconveniently, that means the sick child has to suck it up, even at the risk of provoking a meltdown. You are probably looking at a long journey. Take time to find balance so that you can travel with the support of your spouse. He has legitimate (IMO) concerns and needs of his own. If you take time to consider those and listen, you may find an opportunity to strengthen your marriage instead of having to lose it.

 

I don't mean to sound insensitive. My kids are my number one priority. But having been at this a long time, I know I couldn't have done as much if I'd had to do it as a single parent. Take some time to listen to what your DH has to say. Really listen. You might find that it helps you both.

[tpotter]

So this morning DS woke up still very agitated. He was looking for a fight and blaming me for his meltdown last night, telling me how and why it was all my fault. I made him a smoothie and put some magnesium powder in it. I also gave him 600mg of ibuprofen. I realize that's 200mg more than regular dose but felt we are in a crisis right now and wanted to see if helped.

 

I stayed downstairs and out of the way. He came down on his own about 1-1 1/2 hours later to tell me he feels "better" and he's sorry my husband didn't get any sleep before work this morning. He asked me what my plans were for the day and said he may stay in because it's a little cold today.

 

I feel like as small as it may seem that this was a HUGE shift in behavior, simply from ibuprofen. And he also came down on his own to apologize for the same behavior he had just blamed me for earlier.

 

Our appt with Dr. B. is about 11 days away and feels like a lifetime away. I can't wait to see if there are any coinfections involved, but if not I feel we need to get on the fast track in treating this. He's already 14 and I don't want to miss the window of opportunity if there is one...

 

Honest and truly if we had not been already been down the PANDAS path last night he prob would have gone back to the hospital. It was that bad.

 

I have read that after the steroids wear off there can be a big explosion of symptoms. Could that be what happened last night? Any thoughts?

 

How about keeping him on 600mg of Ibuprofen 3x daily for the next week, and see if it helps?

 

I would recommend only 400 mg on a regular basis or you could really mess with his stomach (we are dealing with gut issues, now.), and make sure he takes it with food. You don't want to create yet another problem, and we have found (with our older sons, too), that 400 mg on a regular basis should be enough.

 

Additionally, I found (way before I ever found this forum, and by pure lucky chance) that 1 - 2 T of peanutbutter (we use sugar free) or 1 - 3 small handfuls of peanuts will stop the rage attacks in their tracks. I hypothesized (after I found out) that it was probably due to the fact that pb is super high in tryptophan, and is also full of fat, so it goes straight to the brain. Dr. K. agreed with my hypothesis when I told him. BTW, it couldn't have been a placebo effect, because DS HATES peanuts, and I used to have to threaten him with taking away something really important or allowance or something. It typically worked within 2 - 5 minutes!

[StillHopeful]

Wow! That is very interesting about the peanut butter. I will try that with my boys.

 

Regarding the Advil, my DS's psychiatrist told me to give my DS11 a regular dosage of ibuprofen in the am and pm. I do worry about the long term effects as well but it seems to help. I have only been giving it to him for the past few weeks. Note we have not done steroids.

 

Just FYI, my DS14 used to have major rages that were due to his anxiety (which we didn't know at first). For example, if we tried to punish him by taking away his computer he would flip out, hit, curse, break the door, run away, etc... It was scary and very extreme. We had to learn his triggers. Instead of taking away the computer privileges completely we would say you can only go on the computer for 30 mins today because you did xyz. We also learned we could not take away the mouse or keyboard because this also was a tigger. He was very compliant once we realized how to handle him and his behavior greatly improved.

[EAMom]

I needed someone to give me the mental ok to keep going with the ibuprofen. I didn't give it to him yesterday and we had another melt down/rage. I'm dosing him before school today and when he gets home and will continue through the week.

 

My husband has slept on the couch the last two nights (he's NEVER done this) and I'm not sure how much longer our marriage will survive this. he puts up with so much but at a certain point will step in when my son is throwing things are slamming things and told me last night he is afraid my son will hurt me. Him intervening, no matter how small (a simple "that's enough" will send my son into overdrive) inevitably ends in my son calling him horrible names or wishing him dead. We've been together for 7 years and he's been very patient, but I think this ###### has become too much for him to handle. He's losing stream and patience and doesn't quite comprehend the ins and outs of this illness or how my son can be ok with his friends and be such a monster at home. It saddens me to think that an otherwise wonderful relationship without any other issues has been destroyed by this, but I fear it has.

 

At the same time, I am going to fight for my child and do what I can to get him well, even if it costs or has cost me my marriage in the process.

 

I think steady dosing of ibuprofen for a week or two would be very insightful. You might also consider using Aleve in the morning before school, as it lasts thru the entire school day. Then you can dose with ibuprofen after school. If you are super concerned about the liver, you can research milk thistle, as it's a great liver antioxidant (do not use if there's a ragweed allergy and do look up medication contraindications - there are a few meds that do not go well with milk thistle). If Aleve isn't as effective, when you see Dr B, bring a school form so he can give the school nurse authorization to administer ibuprofen during the day.

 

As for your marriage...Your DH has put up with a lot and is concerned about how you're being treated. He wants to protect you and shouldn't be made to feel like a villain for his views. Maybe he doesn't see things the way you do but his views are valid and should be considered. I'm not saying you shouldn't continue to fight for your son, but it doesn't have to be an either-or decision. Illness or not, our kids do need consequences for their behaviors. Perhaps doled out with understanding, but consequences nonetheless. Your safety needs to be a priority and DS needs to know there's a line he cannot cross. With a growing body and strength comes a greater responsibility for learning to control one's actions and words.

 

My DH is generally very patient and has fully supported our journey. But he has needs too and the kids can't always be in the driver's seat. We have a strong marriage but it has its scars and we're needing to do repair work after so many years. Any chronic illness affects the whole family, not just one person. Everyone needs to feel there's a point where their needs take priority. Sometimes, inconveniently, that means the sick child has to suck it up, even at the risk of provoking a meltdown. You are probably looking at a long journey. Take time to find balance so that you can travel with the support of your spouse. He has legitimate (IMO) concerns and needs of his own. If you take time to consider those and listen, you may find an opportunity to strengthen your marriage instead of having to lose it.

 

I don't mean to sound insensitive. My kids are my number one priority. But having been at this a long time, I know I couldn't have done as much if I'd had to do it as a single parent. Take some time to listen to what your DH has to say. Really listen. You might find that it helps you both.

 

when we first "discovered" ibuprofen, we tried Aleve as well, and did not get any beneficial effect.

 

SAM-e is also good for the liver...but that has it's own psych. type properties.

 

I think Dr. T. was using 600mg 3 (four?) times daily with the Le Roy girls. ???

Edited April 2, 2012 by EAMom

[fightingmom]

Anywho- trying not to rant but wanted to let you know you are NOT alone. I plan on calling Dr. B offic ethis am to try to get some help for my daughter! I dont know what else he can do but cant hurt to try

 

Thank you for this. It does seem we have a lot in common, I know they say misery loves company and it's an awful way to be, but sometimes you do need to know you are not alone. Did you get any recommendations from Dr. B's office?

 

I needed someone to give me the mental ok to keep going with the ibuprofen.

I give you the okay :)Just be sure to give it with some food (not on an empty stomach).Hang in there!!

 

Thanks, I gave the ibuprofen this morning at 600mg, and just now after school at 400mg. I'll see how it goes.

 

 

I think steady dosing of ibuprofen for a week or two would be very insightful. You might also consider using Aleve in the morning before school, as it lasts thru the entire school day. Then you can dose with ibuprofen after school. If you are super concerned about the liver, you can research milk thistle, as it's a great liver antioxidant (do not use if there's a ragweed allergy and do look up medication contraindications - there are a few meds that do not go well with milk thistle). If Aleve isn't as effective, when you see Dr B, bring a school form so he can give the school nurse authorization to administer ibuprofen during the day.As for your marriage...Your DH has put up with a lot and is concerned about how you're being treated. He wants to protect you and shouldn't be made to feel like a villain for his views. Maybe he doesn't see things the way you do but his views are valid and should be considered. I'm not saying you shouldn't continue to fight for your son, but it doesn't have to be an either-or decision. Illness or not, our kids do need consequences for their behaviors. Perhaps doled out with understanding, but consequences nonetheless. Your safety needs to be a priority and DS needs to know there's a line he cannot cross. With a growing body and strength comes a greater responsibility for learning to control one's actions and words.My DH is generally very patient and has fully supported our journey. But he has needs too and the kids can't always be in the driver's seat. We have a strong marriage but it has its scars and we're needing to do repair work after so many years. Any chronic illness affects the whole family, not just one person. Everyone needs to feel there's a point where their needs take priority. Sometimes, inconveniently, that means the sick child has to suck it up, even at the risk of provoking a meltdown. You are probably looking at a long journey. Take time to find balance so that you can travel with the support of your spouse. He has legitimate (IMO) concerns and needs of his own. If you take time to consider those and listen, you may find an opportunity to strengthen your marriage instead of having to lose it. I don't mean to sound insensitive. My kids are my number one priority. But having been at this a long time, I know I couldn't have done as much if I'd had to do it as a single parent. Take some time to listen to what your DH has to say. Really listen. You might find that it helps you both.

 

A lot of wisdom in your response and now that I'm a bit more cooled off and not in fight or flight mode, you are right. I do try to listen to him and understand where he's coming from but it seems so difficult to make him happy while understanding that my son is sick and this can't all be handled the same way as the average child who is misbehaving. Where do you find that balance. I am no pushover with my son either, I do take things away and do set rules, and this is generally where the biggest wars and meltdown erupt from. If I nodded my head and gave in to his every wish things would be much more smooth sailing. Though, there are a lot of times like Bulldog describes in her paper towel incident that he just screams out of no where and I'm left there like "really?"

 

My husband and I have always had a strong relationship, we've really found a great partner in one another, we have the same goals and generally get along great. Actually, the only thing we fight about is my son. So...it would be really terrible for this to tear us apart. I guess there is a part of me that thinks it's easier to just let him go, so it's one less person I have to fight with. Dealing with my son is exhausting enough, I don't have anything left for another fight. Ya know? And, that's not a fair way of thinking, and in the long run would be hurting both of us, but sometimes...it seems like copping out is easiest!

 

I have been taking milk thistle on and off since my gallbladder was removed - for some reason it never occurred to me to give to my son. I'll do that. Thank you!

 

I would recommend only 400 mg on a regular basis or you could really mess with his stomach (we are dealing with gut issues, now.), and make sure he takes it with food. You don't want to create yet another problem, and we have found (with our older sons, too), that 400 mg on a regular basis should be enough.Additionally, I found (way before I ever found this forum, and by pure lucky chance) that 1 - 2 T of peanutbutter (we use sugar free) or 1 - 3 small handfuls of peanuts will stop the rage attacks in their tracks. I hypothesized (after I found out) that it was probably due to the fact that pb is super high in tryptophan, and is also full of fat, so it goes straight to the brain. Dr. K. agreed with my hypothesis when I told him. BTW, it couldn't have been a placebo effect, because DS HATES peanuts, and I used to have to threaten him with taking away something really important or allowance or something. It typically worked within 2 - 5 minutes!

 

VERY, very interesting about the peanut butter. I will try this!!

 

Just FYI, my DS14 used to have major rages that were due to his anxiety (which we didn't know at first). For example, if we tried to punish him by taking away his computer he would flip out, hit, curse, break the door, run away, etc... It was scary and very extreme. We had to learn his triggers. Instead of taking away the computer privileges completely we would say you can only go on the computer for 30 mins today because you did xyz. We also learned we could not take away the mouse or keyboard because this also was a tigger. He was very compliant once we realized how to handle him and his behavior greatly improved.

 

You just described my son to a T!!! And, he's also been diagnosed with generalized anxiety disorder by one doctor (the one that I think had the most insight) but most recently another doc says he doesn't see any anxiety because his responses are not fear based...he's right they aren't, but I think there is more than one way anxiety can manifest. He does seem to have major anxiety over things. For example when I took away his computer, he freaked out because he was now going to piss off his friends. Apparently they are all playing a game that is hosted from my son's account and if he can't log in, his friends can't play either. This was a major issue for him and he lost it over that. Now, when I was his age, I would have just told my friends "Sorry, guys my mom took my computer away last night," and it would have been over but to him it's the end of the freaking world. And, if i take his keyboard or anything like that, or even a cord, he FREAKS out. Tells me he had it all set up just right and now I have ruined EVERYTHING. Huh? I just took the power cord...but to him it's a major big deal. He tells me to get out of his room all the time because he doesn't want me to touch anything. Picking up clothes off the floor or a piece of paper and putting it in the trash bothers him too.

[Fixit]

Again i have not read everything.

But i am happy, though it was short lived, about your few days of bliss.

NOw you have a goal you can shoot for.

i agree with the ibf for a few days....i recently did this with 2 of my children and it did help.

even though i am an old timer, you can forget some of the basics, and my family here helped to remind me.

we are not 100% but ibf with a few other things took it down a notch or 2 ..and really helped my middle ds.

 

i too have a good dh...but there is so much with this thing, that it is draining.

you need to find couple of the good articles, and/or threads and force dh to read them. my dh has said, well cant' you just tell me what is in them. NO, i have summarized alot. I NEED YOU TO READ THESE YOURSELF. So they don't get the info from you and can seperate the info from you, from your son and into the condition.

 

YOu're doing great. Just hold on

[fightingmom]

Again i have not read everything.But i am happy, though it was short lived, about your few days of bliss.NOw you have a goal you can shoot for.i agree with the ibf for a few days....i recently did this with 2 of my children and it did help.even though i am an old timer, you can forget some of the basics, and my family here helped to remind me.we are not 100% but ibf with a few other things took it down a notch or 2 ..and really helped my middle ds.i too have a good dh...but there is so much with this thing, that it is draining.you need to find couple of the good articles, and/or threads and force dh to read them. my dh has said, well cant' you just tell me what is in them. NO, i have summarized alot. I NEED YOU TO READ THESE YOURSELF. So they don't get the info from you and can seperate the info from you, from your son and into the condition.YOu're doing great. Just hold on

 

Thank you so much! I really appreciate this. I have just started doing what you suggested as of today actually. I gave my husband a link to a few threads here that sounds just like my DS and I also have a few things I want him to read (didn't want to send them all together, it's too much). You are right though, he needs to read it and not hear it from me. We also went to dinner tonight and spent some time alone. Much needed. We had a nice time.

[fightingmom]

So, hubs and I went out to dinner and came home to find DS had cleaned his room, done his homework (a nicely typed 3 page paper) and did NOT even freak out at me for forgetting to plug back in his internet before I left. Actually, I had sent him a text apologizing because I had forgotten and when I got back home he told me not to worry about it that he had been typing his paper and it was "no big deal".

 

This on on ibuprofen all day. Coincidence? I'm thinking not...

[bulldog24]

Wow! Great!!!!!!

 

I think us PANDAS parents need to look at things week by week vs, moment to moment or even day to day! Its definitely a rollercoaster ride