Motrin & Chlorine questions

[tantrums]

Today has clearly been THE worst day since before my son was diagnosed. He has been "off" all weekend. I figured he was tired from too much fun, and the heat. Today, he woke up after more than 10 hours of sleep (good sleep too!) just in a funk - speaking softly, like it was hard for him to bother. Went to the therapist - first time he'd met her. Well, at least she got a show. No meltdown there, but he did leave to wash his hands twice because he touched toys in her office. He told her he is sad and asked her if he is a good boy She said that he will not answer questions directly about behavior or what is bothering him. He says it just like that "we're NOT going to discuss it". But it was first session, so I figure he needs to get to trust her first.

 

Basically, just meltdown after meltdown since then. Over the MOST ridiculous things. "mom take me to the petstore. I want a new fish". Sorry, we aren't doing that today. "I want the ice cream truck to come!" Like I can control that?! He went full on, screaming, punching himself in the head and legs, thrashing on the floor, etc...

 

I tried to give him motrin before it got to the punching himself stage. He refused it at first (like he always does!) but then did ask to take it. Then it caused another fit - he had to "get the taste" out of his mouth - pulling on his tongue, banging his head, etc... Rational requests that he take the drink/food I was offering to help were only met with more rage.

 

So on the motrin - do you give it just when they seem "off" like you just sense it is going to come? Or do you wait until it's really bad? I just am afraid to give too much, too often.

 

The other thing is, swimming. He's been basically swimming every day for three days several hours a day. I honestly kindof poopooed the whole chlorine thing. I figured he NEEDS that physical outlet and it's something he loves.

 

I know I read that it can increase tics, which I figured wouldn't be a big deal. I have seen an increase in tics the past couple of weeks as well. but was there any evidence that it can cause an increase in other symptoms, like the rage attacks?

 

He just switched from Biaxin to Azith so hoping that we finally found the right one!

[peglem]

I give motrin at the 1st sign- like if she wakes up in a funk! And I make sure to give small snacks throughout the day- hunger seems to trigger rage, so I try to make sure hunger never happens. I sometimes think that my daughter may be having blood sugar swings and the rage is the body trying to get that blood sugar back up- one of the things that happens in fight or flight is glucose dumped into blood stream to give quick energy. But, this is hard to check w/ a glucometer because getting poked sends her into F or F!

 

I don't know anything about the chlorine issue. But, if he's out in the sun alot, be sure he's getting enough fluids- he may be reacting to dehydration, which will make you sleepy, but also he's not drinking while asleep either.

[tantrums]

I give motrin at the 1st sign- like if she wakes up in a funk! And I make sure to give small snacks throughout the day- hunger seems to trigger rage, so I try to make sure hunger never happens. I sometimes think that my daughter may be having blood sugar swings and the rage is the body trying to get that blood sugar back up- one of the things that happens in fight or flight is glucose dumped into blood stream to give quick energy. But, this is hard to check w/ a glucometer because getting poked sends her into F or F!

 

I don't know anything about the chlorine issue. But, if he's out in the sun alot, be sure he's getting enough fluids- he may be reacting to dehydration, which will make you sleepy, but also he's not drinking while asleep either.

 

I did realize that yesterday, he really hadn't had ANYTHING to drink since breakfast - and it was late afternoon! YIKES! I had to tell him to drink water and he downed an entire bottle after arguing that he wasn't thirsty. Won't make that mistake again Scary! He pretty much eats all day long, on the go in smaller amounts, so it didn't seem like a blood sugar issue. I have noticed that though at other times when he was in low eating mode.

 

I may just give him the motrin tomorrow then if he still wakes up moody and see how that goes. I suppose it's certainly worth a try.

 

Feeling SOOOO frustrated here! It just seems like our "superfast" diagnosis is doing nothing to help us

[ajcire]

Did you already start the gluten free diet? Could it be connected? I know nothing at all about that stuff so don't know, is there a period of withdrawal?

 

 

I give motrin at the 1st sign- like if she wakes up in a funk! And I make sure to give small snacks throughout the day- hunger seems to trigger rage, so I try to make sure hunger never happens. I sometimes think that my daughter may be having blood sugar swings and the rage is the body trying to get that blood sugar back up- one of the things that happens in fight or flight is glucose dumped into blood stream to give quick energy. But, this is hard to check w/ a glucometer because getting poked sends her into F or F!

 

I don't know anything about the chlorine issue. But, if he's out in the sun alot, be sure he's getting enough fluids- he may be reacting to dehydration, which will make you sleepy, but also he's not drinking while asleep either.

 

I did realize that yesterday, he really hadn't had ANYTHING to drink since breakfast - and it was late afternoon! YIKES! I had to tell him to drink water and he downed an entire bottle after arguing that he wasn't thirsty. Won't make that mistake again Scary! He pretty much eats all day long, on the go in smaller amounts, so it didn't seem like a blood sugar issue. I have noticed that though at other times when he was in low eating mode.

 

I may just give him the motrin tomorrow then if he still wakes up moody and see how that goes. I suppose it's certainly worth a try.

 

Feeling SOOOO frustrated here! It just seems like our "superfast" diagnosis is doing nothing to help us

[kimballot]

I am feeling for you--

 

How is he looking after swimming? Are his eyes excessively red? Could it be an actual chlorine allergy? We have to do antihistimines with swimming due to chlorine allergies. I don't know if antihistimines will make it better or worse for you. Maybe try benedryl- I think it is the shortest acting one... or try skipping the pool one day to see if there is a difference without chlorine...?...

[tantrums]

His eyes ARE very red after swimming. But he hasn't complained about them. I didn't ask him bc it would set off a round of "will I go blind" hysteria

 

I did start gluten free. We are on day three. Good question if there is any withdraw? I personally am feeling pretty good myself. Honestly, I feel lighter and just peppier. My stomach feels good. I didn't think you would see any change this soon?

 

I also wonder if any of the supplements we started less than a week ago could be causing a problem?

 

See - I WAS worried about changing so many things at once It could be a regular flare up, he could've been reinfected the past week (since the last titers were done) or it could be the pool, the gluten or the supplements.

 

Sorry, but this just plain SUCKS!!

[Megs_Mom]

His eyes ARE very red after swimming. But he hasn't complained about them. I didn't ask him bc it would set off a round of "will I go blind" hysteria

 

I did start gluten free. We are on day three. Good question if there is any withdraw? I personally am feeling pretty good myself. Honestly, I feel lighter and just peppier. My stomach feels good. I didn't think you would see any change this soon?

 

I also wonder if any of the supplements we started less than a week ago could be causing a problem?

 

See - I WAS worried about changing so many things at once It could be a regular flare up, he could've been reinfected the past week (since the last titers were done) or it could be the pool, the gluten or the supplements.

 

Sorry, but this just plain SUCKS!!

 

I have a good friend, who always reminds me of the basics when I start to panic (which I do with every small blip ). It could be a lot of things, but it's likely just a few of them. So most likely, he is either burning off more food that you are giving him, reacting to the change in medicine, or has had an exposure. Did you start supplements and change abx at the same time? You note that he just switched from Biaxin to Azith - very recently?

 

So if this were me, my friend would likely advise that we do 2 things tomorrow: 1. MOTRIN - start the day with Motrin, and dose every 6 hours - assume that tomorrow is going to be the same as today, whatever the reason. 2. ABX - Call your doctor and discuss the change to Azith. Maybe you can go back on Biaxin & then dose down. Maybe they are ok together for a week or so while you switch. In our case, we generally need a move to full dose from a maintanence dose - so be sure you are considering that! If he is having an exposure blip, then going up to full strength on the azith might help - it is always a miracle for us.

 

Then don't change all the rest. Let him swim (but be sure to offer water & more food than usual). Keep up the supplements & the gluten free diet. All those seem like good options if they can be maintained, and you can always change those next.

 

Usually, when she tells me to do this, it works, and all my "what if's" fall to the wayside.

[Suzan]

I did start gluten free. We are on day three. Good question if there is any withdraw? I personally am feeling pretty good myself. Honestly, I feel lighter and just peppier. My stomach feels good. I didn't think you would see any change this soon?

 

HUGS! I am sorry you are going through this. You've gotten great advice so far.

 

Regarding the gluten, yes you can see positive changes that fast! On day 4 my couch potato dd got up and started jogging around the cul-du-sac! I don't know about withdrawl, I bet it's possible.

 

Susan

[tantrums]

Thank you so much for all the replies and great ideas!

 

The more I think about it - the more I'm thinking gluten free IS affecting him. But I can fix that. I just need to make sure he is getting more protein I think and eating more substantially more often. He won't eat bananas and apples we got - he wants mangos and kiwis LOL! I planned on getting some more stuff tomorrow so will load up on cheese, eggs (he likes hard boiled eggs), chicken, tuna, etc...

 

I think it makes sense since I'm feeling lighter and peppier. But I was sluggish from stomach issues with gluten I believe. So for me not feeling as "full" is a great thing. Countereffect on him I think.

 

I will give the motrin in the am. He isn't swimming for a few days now - rash from someone elses sunscreen so that may help. But I cannot deny him the pool all summer!

 

I did email the nutritionist as well just to ask if there is ANY chance any of the supplements could be having an adverse effect on him.

 

The change in abx was literally today, so I don't think that did it. The biaxin wasn't working for him.

[saidie10]

Today has clearly been THE worst day since before my son was diagnosed. He has been "off" all weekend. I figured he was tired from too much fun, and the heat. Today, he woke up after more than 10 hours of sleep (good sleep too!) just in a funk - speaking softly, like it was hard for him to bother. Went to the therapist - first time he'd met her. Well, at least she got a show. No meltdown there, but he did leave to wash his hands twice because he touched toys in her office. He told her he is sad and asked her if he is a good boy She said that he will not answer questions directly about behavior or what is bothering him. He says it just like that "we're NOT going to discuss it". But it was first session, so I figure he needs to get to trust her first.

 

Basically, just meltdown after meltdown since then. Over the MOST ridiculous things. "mom take me to the petstore. I want a new fish". Sorry, we aren't doing that today. "I want the ice cream truck to come!" Like I can control that?! He went full on, screaming, punching himself in the head and legs, thrashing on the floor, etc...

 

I tried to give him motrin before it got to the punching himself stage. He refused it at first (like he always does!) but then did ask to take it. Then it caused another fit - he had to "get the taste" out of his mouth - pulling on his tongue, banging his head, etc... Rational requests that he take the drink/food I was offering to help were only met with more rage.

 

So on the motrin - do you give it just when they seem "off" like you just sense it is going to come? Or do you wait until it's really bad? I just am afraid to give too much, too often.

 

The other thing is, swimming. He's been basically swimming every day for three days several hours a day. I honestly kindof poopooed the whole chlorine thing. I figured he NEEDS that physical outlet and it's something he loves.

 

I know I read that it can increase tics, which I figured wouldn't be a big deal. I have seen an increase in tics the past couple of weeks as well. but was there any evidence that it can cause an increase in other symptoms, like the rage attacks?

 

He just switched from Biaxin to Azith so hoping that we finally found the right one!

 

strange about chlorine and tics....DS has been swimming a bunch over the last few days and his tics were definitely happening tonight! as for the motrin, if the morning starts out bad, I don't waste any time. i get a dose of motrin in him as quick as possible before it gets out of hand. i feel for you though with the behaviors. it sounds like you are talking about my DS the last few days. EVERYTHING sends him into an emotional meltdown. ready for treatment and praying it will work.

[lss]

Today has clearly been THE worst day since before my son was diagnosed. He has been "off" all weekend. I figured he was tired from too much fun, and the heat. Today, he woke up after more than 10 hours of sleep (good sleep too!) just in a funk - speaking softly, like it was hard for him to bother. Went to the therapist - first time he'd met her. Well, at least she got a show. No meltdown there, but he did leave to wash his hands twice because he touched toys in her office. He told her he is sad and asked her if he is a good boy She said that he will not answer questions directly about behavior or what is bothering him. He says it just like that "we're NOT going to discuss it". But it was first session, so I figure he needs to get to trust her first.

 

Basically, just meltdown after meltdown since then. Over the MOST ridiculous things. "mom take me to the petstore. I want a new fish". Sorry, we aren't doing that today. "I want the ice cream truck to come!" Like I can control that?! He went full on, screaming, punching himself in the head and legs, thrashing on the floor, etc...

 

I tried to give him motrin before it got to the punching himself stage. He refused it at first (like he always does!) but then did ask to take it. Then it caused another fit - he had to "get the taste" out of his mouth - pulling on his tongue, banging his head, etc... Rational requests that he take the drink/food I was offering to help were only met with more rage.

 

So on the motrin - do you give it just when they seem "off" like you just sense it is going to come? Or do you wait until it's really bad? I just am afraid to give too much, too often.

 

The other thing is, swimming. He's been basically swimming every day for three days several hours a day. I honestly kindof poopooed the whole chlorine thing. I figured he NEEDS that physical outlet and it's something he loves.

 

I know I read that it can increase tics, which I figured wouldn't be a big deal. I have seen an increase in tics the past couple of weeks as well. but was there any evidence that it can cause an increase in other symptoms, like the rage attacks?

 

He just switched from Biaxin to Azith so hoping that we finally found the right one!

 

strange about chlorine and tics....DS has been swimming a bunch over the last few days and his tics were definitely happening tonight! as for the motrin, if the morning starts out bad, I don't waste any time. i get a dose of motrin in him as quick as possible before it gets out of hand. i feel for you though with the behaviors. it sounds like you are talking about my DS the last few days. EVERYTHING sends him into an emotional meltdown. ready for treatment and praying it will work.

 

If you have the kids soak in a epsom salt bath, it helps with the tics.

 

Linda