Jump to content
ACN Latitudes Forums

Recommended Posts

Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board.

 

He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite.

 

Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours.

Gat's mom.

Link to post
Share on other sites
Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board.

 

He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite.

 

Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours.

Gat's mom.

Gat's mom,

Stomach pain can be a symptom of strep. My son had stomach aches, lose of apetite, fatigue, just feeling awful altogether. Once we got him on antibiotics, things improved, but it wasn't in a couple of days, it took a while. His strep was in his gut. Is your son on probiotics at the moment? If not, that's definitely something you will need to add. Also, some kids develop food sensitivities as a result of strep. My son never had issues before but now is testing allergic to dairy. So you might want to look into that. Or, is there any chance he has an ulcer? Not our case but I've heard of that.

So basically, it could be related or not, but I would definitely look or a physical reason for the aches rather than just attribute it to the anxiety.

 

Isabel

Link to post
Share on other sites
Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board.

 

He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite.

 

Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours.

Gat's mom.

Gat's mom,

Stomach pain can be a symptom of strep. My son had stomach aches, lose of apetite, fatigue, just feeling awful altogether. Once we got him on antibiotics, things improved, but it wasn't in a couple of days, it took a while. His strep was in his gut. Is your son on probiotics at the moment? If not, that's definitely something you will need to add. Also, some kids develop food sensitivities as a result of strep. My son never had issues before but now is testing allergic to dairy. So you might want to look into that. Or, is there any chance he has an ulcer? Not our case but I've heard of that.

So basically, it could be related or not, but I would definitely look or a physical reason for the aches rather than just attribute it to the anxiety.

 

Isabel

 

Isabel,

He is on a high test probiotic without strep strains, Klaire's Therabiotic Detox Support. I'm not having much luck getting kefir into him at present but I may have to put the hammer down on a couple ounces per day. Emotional lability has already improved after three doses. He has horrible reflux issues particularly when he's stressed. I give activated charcoal for that hours away from any other supps/meds. He's also back to taking omeprazole 20mg at night, which typically helps some. Here's the thing that keeps me coming back to stress hormones. When he has stomach pain, if he gets distracted the pain nearly immediately goes away and his mood rises again. Thanks so much for your feedback!

Gayle

Link to post
Share on other sites

Strange that so many of us have issues with stomach pain and reflux. I still wonder if there is something going on in their intestines that we cannot see! My son had some stomach pain recently when he switched from Augmentin 875 to Augmentin XR, so much so that he could not tolerate going to School. He had one dose of the XR though? And the pain lasted for almost 4 days? But since his stomach ache disappeared, he has been more tolerable at home, despite the stress of finding a school for him.

 

I still have not found a solution!

 

If I do, I will post!

 

Just feel that there is a pattern here to document!

Link to post
Share on other sites

Hi - I think stomach pain & PANDAS are closely related in many cases. We had sudden onset OCD at the same time as stomach pain each time. Everyone dismissed this as anxiety, but I could not believe it could arrive so quickly. So in desperation, we did an intensive therapy program to help sort out real pain from anxiety with the support of her therapist. Once we could really track it, it was clear that she was "tasting throw-up" in her mouth (acid) and having stomach pain when she was hungry, full, or needed to use the restroom. We got a GI doc interested after testing positive for Celiac (falsely) and he knew about PANDAS. In the end, we did an endoscope & discovered that she had multiple Peptic Ulcers. She was negative for H. Pylori, and we were not using advil or another NSAID. After treatment with Prevacid, we were able to get this under control in about 10 days.

 

Recently, she had an 8 day episode that we got under control quickly with abx. However, during the episode, she again had breakthrough stomach pain, despite the Prevacid. Gone at the end of the 8th day, along with the OCD.

 

I hear about so many kids with stomach pain, but it is usually undiagnosed. Dr. K also talks about this on his site when he discussed Teen Onset of PANDAS.

Link to post
Share on other sites

All very interesting . . .

 

My DS12 frequently has stomach issues . . . gas, bloating, occasional diarrhea. And he is very sensitive to feeling "over-full," though he rarely has the opportunity to really overeat.

 

I always thought it was just anxiety, and then his OCD would lock onto it, turn it into the mountain from a molehill that it tends to do with just about anything it can grasp hold of, and he would really have to work hard to shake being consumed by it.

 

The abx have helped, since all of his OCD behaviors are waning again after 6 days back on course. I will say, however, that the Augmentin XR at 1,000 mg. doses (2 per day) seems to be much more tolerable to him than the regular Augmentin 875 twice daily was. Maybe he's more sensitive to the clauvanic acid, since that's higher in the regular than in the XR?

 

So, is Prevacid an antacid? Is it similar to Prilosec? Any side effects or combo-effects to be aware of?

Link to post
Share on other sites
All very interesting . . .

 

My DS12 frequently has stomach issues . . . gas, bloating, occasional diarrhea. And he is very sensitive to feeling "over-full," though he rarely has the opportunity to really overeat.

 

I always thought it was just anxiety, and then his OCD would lock onto it, turn it into the mountain from a molehill that it tends to do with just about anything it can grasp hold of, and he would really have to work hard to shake being consumed by it.

 

The abx have helped, since all of his OCD behaviors are waning again after 6 days back on course. I will say, however, that the Augmentin XR at 1,000 mg. doses (2 per day) seems to be much more tolerable to him than the regular Augmentin 875 twice daily was. Maybe he's more sensitive to the clauvanic acid, since that's higher in the regular than in the XR?

 

So, is Prevacid an antacid? Is it similar to Prilosec? Any side effects or combo-effects to be aware of?

 

Yes, I think it is the same kind of treatment. The only side effect that I am aware of is that the stomach will get used to the Prevacid & if you go off suddenly, will produce too much acid. So you have to titer off it after extended use. (Ask your GI for more info, It's been 5 months, so I don't remember if there were other warnings that didn't actually happen!) We were planning to titer off in Feb, but we are so happy right now, that I am thinking we'll delay one more month and try in March. It's just so nice right now, I'm a little scared to change anything. Our GI gave us a years worth after the last positive check-up and gave us a titer plan that we can decide when to use (or not).

Link to post
Share on other sites
Hi - I think stomach pain & PANDAS are closely related in many cases. We had sudden onset OCD at the same time as stomach pain each time. Everyone dismissed this as anxiety, but I could not believe it could arrive so quickly. So in desperation, we did an intensive therapy program to help sort out real pain from anxiety with the support of her therapist. Once we could really track it, it was clear that she was "tasting throw-up" in her mouth (acid) and having stomach pain when she was hungry, full, or needed to use the restroom. We got a GI doc interested after testing positive for Celiac (falsely) and he knew about PANDAS. In the end, we did an endoscope & discovered that she had multiple Peptic Ulcers. She was negative for H. Pylori, and we were not using advil or another NSAID. After treatment with Prevacid, we were able to get this under control in about 10 days.

 

Recently, she had an 8 day episode that we got under control quickly with abx. However, during the episode, she again had breakthrough stomach pain, despite the Prevacid. Gone at the end of the 8th day, along with the OCD.

 

I hear about so many kids with stomach pain, but it is usually undiagnosed. Dr. K also talks about this on his site when he discussed Teen Onset of PANDAS.

 

All so interesting, again while I wouldn't wish it on another soul, it brings me so much peace to know it's not just us. I watched him closely tonight, the lighter his mood became the better his stomach was and further, the better his color became. Our DAN! doc is all about gut health and we have several practices in place to ensure this but when (and only when) he is in a PANDAS backslide, that child has the worst acid reflux I could imagine. This is complete with waking occasionally with a coated brown tongue and the worst breath possible. We have great success using activated charcoal with the reflux is really bad in combination with omeprazole 20mg. The charcoal soaks up anything its near, including meds/supps to always give it 2 hours away from everything. Those on the DAN! protocol use it to soak up the die off effects of using antifungals, antivirals, chelators and abx. Our DAN! was convinced (and I agree) that Gat had a horrid yeast overgrowth as well as strep. Treating with the above mentioned supp/med helped. I also elevated the head of his mattress by just an inch or so. All tools in our reflux toolbox. There is a link, no doubt. He has a cast iron stomach and eats like a horse when he's not in a backslide.

 

Could I please have Dr. K's web addy? We are now on Bradstreet's waiting list but just made an appt with a (another) local allergy/immunology doc for early Feb. Does anyone know where I might find any of the experts protocols or guidelines so I have something to use as a reference beyond my own personal experience?

 

Many thanks to all!

Gat's mom.

Link to post
Share on other sites

Just wanted to weigh in that my son's last horrible exacerbation in 6th grade began with stomach pain. Fever for one day, and then agonizing stomach cramps and diarreha for 4 days. The stomach pain continued for months as his mental health became worse and worse. Prevacid did nothing. Blood tests and stool tests showed nothing. The only thing they could find was constipation. We never got to a GI, as his mental deterioration became the focus and then he contracted Influenza A. 6 months after the initial pain, he would complain his stomach hurt, but only when he was anxious rather than all the time. By that point we chalked it up to anxiety, but I think partly he had been in pain so long he was reliving it when he felt vulnerable. We were able to work with him to not panic when his stomach hurt by teaching him the physiology of stress increasing stomach acid. Even if we didn't have the details right, it helped him over come this. But I can't say that I believe all his initial gut pain it was due to anxiety, as he no longer ever mentions his stomach hurting, even when he is at his most anxious.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...