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Ibuprofen trial


Satara
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Hello everyone,

 

We tried ibuprofen 400 mg (the prescribed dose for his weight) for two days. I didn't tell him what it was I just put it in with his supplements. Within a few hours the cycles stopped (he goes up and down throughout the day), the extreme frustration/anger/rage was gone. He was his old self for two days it was incredible. My older son asked, "what's up with Liam?" I braced myself thinking he'd done something and he said "he's so calm we played for two hours with no reactions, it was great!"

 

When I asked Liam how he felt on the second day he said "better than I can ever remember feeling." I know this isn't a definitive test but to me it points towards an inflammatory reaction to something ie PANDAS/celiac etc. We are waiting to get his results from his titers/celiac/allergy tests. It sucks that ibuprofen is tough on the liver because I would love to keep Liam on it. I'm going to look into an anti-inflammatory diet and see what we can do.

 

Has any else had success with this? Did the doctor think anything of it?

 

Cynthia

Edited by Satara
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Hello everyone,

 

We tried ibuprofen 400 mg (the prescribed dose for his weight) for two days. I didn't tell him what it was I just put it in with his supplements. Within a few hours the cycles stopped (he goes up and down throughout the day), the extreme frustration/anger/rage was gone. He was his old self for two days it was incredible. My older son asked, "what's up with Liam?" I braced myself thinking he'd done something and he said "he's so calm we played for two hours with no reactions, it was great!"

 

When I asked Liam how he felt on the second day he said "better than I can ever remember feeling." I know this isn't a definitive test but to me it points towards an inflammatory reaction to something ie PANDAS/celiac etc. We are waiting to get his results from his titers/celiac/allergy tests. It sucks that ibuprofen is tough on the liver because I would love to keep Liam on it. I'm going to look into an anti-inflammatory diet and see what we can do.

 

Has any else had success with this? Did the doctor think anything of it?

 

Cynthia

 

Sounds good! All I can tell you as someone who has not even been seen yet is that after emailing Dr T it was the first thing he told me to do. Motrin for his age and size for 3-5 days. My son had his first dose at 4:30 today. He was not with me though. My husband said he seemed better when he was out with him. I am going to start keeping a record.. Writing things down.

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Hi Cynthia~

When our kids were first diagnosed with PANDAS, our ped. recommended the anti-inflammatory diet. I do think it helped. We still follow the diet, loosly at the moment, but we get strict with it when the kids are sick, or having a flare in symptoms.

Dr. T recommended the ibuprofen for us too, and they seemed to do well on that also.

Hollis

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We have an appt to get the results of Liam's allergy/heavy metal/vitamin deficiency tests on Monday so I think that will help as well. On Wed we will hopefully get the results of his titers/celiac tests.

 

We have considered doing GAPS but Liam hates soup/anything mushy (like veggies in soup) so it would be hard. We will know Monday whether we should do GF/CF we already have him off of gluten because we notice that he has mood swings every time he eats it.

 

I am hoping the doctor will listen to me about the anti-inflammatories. It gets very tiring having people look at me like I'm crazy but hey it's all worth it if we can find out what's up with Liam.

 

Have a great day!

Cynthia

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We see Dr. Murphy as our specialist (she's local for us), and she recommended my son be on Omega 3 supplements since they are anti-inflammatory.

 

She noted though, to look at which supplements we give him because Omega 6 can actually cause inflammation, and some O-3 supplements have both. Also, I know that some parents here have had issues with fish-oil based O-3, we haven't, but I remember it being mentioned on here before.

 

We also try to feed him a diet rich with O-3 fortified foods to help as well. Voortman actually makes a flaxseed cookie that has 750 mg O-3 per cookie. My son loves them, and we leave them within reach, we often see him "sneaking" a cookie when he knows we otherwise wouldn't let him. What he doesn't know, is that we actually WANT him to be eating those, even if it's before dinner!!

Edited by airial95
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Airial, He is on an omega supplement. We have a company here that exclusively makes flax products. We used to get their stuff all the time I will look into the ingredients thanks for reminding me. That's funny about him sneaking healthy cookies. My sons' are horrified when they catch me adding stuff to their food. I puree veggies and put them into sauces my older son busted me pouring pureed spinach into the spaghetti sauce he insisted that he could taste it, little did he know that he had been eating it like that for years.

 

Have a great day!

Cynthia

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Hollis,

 

What anti-inflammatory diet was prescribed? A GFCF diet- or more strict like a GAPS?

 

Julie

 

Hi Julie~

The book that I seem to use the most is "The Anti-Inflammation Diet and Recipe Book". I like it because it has a chart that's easy for me to flip thru and see what's ok and whats not.

It also has some good tidbits here and there that are totally doable.

We are pretty strick when the kids are in a flare, but just follow it loosly when they're doing ok.

:) Hollis

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