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MMWG

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My DD (48 lbs) has a long history of constipation and GI issues/GERD/dyspepsia. We went to a gastro doc, did an endoscope - found nothing. He shrugged and said "miralax and pepcid. See you in 6 months". DD then started seeing my son's LLMD, who's a doctor of osteopathy/integrative doc. He initially wanted her on Trufiber but getting that into her was a big effort. Long story, but we now use 200 mg magnesium (away from abx) and that has made her regular for the first time in her life. She also takes 1 capsule of pysllium husk at bedtime, which is like fiber in a capsule.

 

We still have much work to do in terms of diet and hydration. But the magnesium and pysillium have been the easiest things to get into her and have done a good job of fixing the immediate symptoms.

 

I know integrative docs aren't everyone's cup of tea, but for my family, it's been very helpful.

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My daughter has been constipated as long as I can remember. Also, has had complaints of stomach pains and heartburn for years. We have seen GI doctors and had her upper and lower GI series done which showed everything as normal. We have found that high dose probiotics and miralax to be the biggest thing to help her. She takes magnesium occasionally, but not sure I give her enough to make a difference. Magnesium is supposed to really help. I believe stomach complaints are very common in these kids and our integrative doctor says it has to do with inflammation in the gut as well as the brain. I do find she complains more during flares than when things are going smooth. Wish we had the answer to some of these strange issues these kids deal with.

 

Dedee

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I have an email in to a good friend of mine who is an osteopath to see what she thinks. She lives 10 hrs away but I would totally go see her if she was willing to help us look into these things. I am thankful our pediatrician is so trusting of my input and helpful with the PANDAS, but he doesn't seem interested in these related issues. I just don't think the kid should have to be on 2 capfuls of miralax a day--this is 4 yrs he has been doing this.

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I have an email in to a good friend of mine who is an osteopath to see what she thinks. She lives 10 hrs away but I would totally go see her if she was willing to help us look into these things. I am thankful our pediatrician is so trusting of my input and helpful with the PANDAS, but he doesn't seem interested in these related issues. I just don't think the kid should have to be on 2 capfuls of miralax a day--this is 4 yrs he has been doing this.

 

 

We know of a couple of families who had fecal transplants for their PANDAS child and their children are now completely symptom free even of Lyme symptoms. This treatment was just offered to my son as well. There is definitely a gut brain connection.

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This is a very timely post, since I just returned from having an endoscope & colonoscopy done on my daughter. Exhausting, to say the least! She has been in a flair since Sept, with a +ANA, very high sed rate, high c-reactive protein, and lots of other abnormal labs which point to inflammation. So far, everything looks good!- waiting on biopsies. The GI doctor seemed suprised with her results - he thought for sure she may have Crohns disease. Her current GI symptoms are severe nausea, gerd, and frequent stomach pains. She also has a severe phobia of vomiting that is restricting her ability to leave the house. Her LLMD said the procedures would probably be normal, but agreed that both should be done. We are going to try and have her biopsy sent to a special lab to be tested for lyme. We already know she is positive since she recently tested + through a culture, but thought we would take advantage of the GI biopsy. She had these GI symptoms two years ago as well.

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This might be something to check... For years my DS had unexplained bouts of constipation and diarrhea. One of the first things our DAN!/Biomed doctor did was order a stool test which found overgrowths of strep and staph and virtually no E.coli (where there should be heaps!) Good gut health is fundamental to a healthy immune system and neurotransmitter function. DS (now 18) is doing really well.

Hope you find answers soon.

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Both my kids suffer constipation and gerd, worse when in flares. They also have +ANA titers.

 

We have adopted a very good protocol to treat gastro issues since jumping on the PANDAS nightmare rollercoaster.

 

I will share a couple things here and if you want to know more details just PM me.

 

First of all high dose VIT C helps, Probiotics, oxypowder (mag oxide) moves bowels quick and is a better alternative than miralax, aloe vera juice, sacchromydes boulardi, fiber with inulin, enzymes for tummy DIGESTION and pain, pepcid for gerd. Believe it or not there is more.

 

My kids are complicated cases and they have a very long list of daily supplements all of which are helping.

 

I was in a living h**l when this started like all of you, but it does get better, not perfect, but better. The video that EAMom posted in another post touches on the many bacteria that can live in the gut mucosa and get into blood stream. 70% of our immune system is in our gut, so addressing the gut issues aggressively has helped my kids tremendously.

 

I have one son that is typical and another with autism both have the gut issues and PANDAS. Both have suffered chronic infections since very early in life.

 

DAN doctors, our regular ped, regular ped neuro and a gastro doc have all helped us along this journey. The gastro doc did not feel it necessary to do a scope he has been treating on clinical symptoms. We did do stool samples that were normal, but the gastro dr. stated their could still be bacteria overgrowth with normal results, so he treats. Thank goodness.

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MMWG-

 

I am not disagreeing with any of the suggestions above, just sharing our info.

 

I have 2 pandas girls. They both were triggered by strep, but DO react to illness in others around them. This reaction to illness around them, has been calming over the last year. There may be something to getting older (they are 8 and 11, now- we have been at this three years).

 

One has always been "regular as rain", while the other has had chronic constipation since birth.

 

My wonderful grandmother (no neuro or psych issues ever) had chronic constipation until she died at age 95. She was exceptionally healthy her entire life.

 

Constipation is one of the top problems reported to pediatricians (according to my old ped).

 

So, while I believe you should try to solve the issue, I don't necessarily think it has to be related to pandas.

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Not sure yet if gut issues are a piece to the puzzle, but just found ds is allergic to eggs. Don't know how we didn't notice it in the past 8 years, but he had been complaining of stomach aches recently. We had the blood allergy test done by our LLMD at my request. 1 week egg free and no stomach aches, crossing fingers.

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One DS, now 19, had chronic constipation with occasional diarrhea mixed in. Lots of gas, discomfort and "pain that went up to his heart". After I insisted they test, labwork showed food sensitivities. Altered diet and found cyclic pattern that prompted deeper testing.....found klebsiella pneumonia, pathogenic levels of candida, and blastocysts hominis (parasite - not too uncommon implicated in all sorts of disease processes) growing in gut. Awful, but treatable. Used big gun antibiotics, antifungals and probiotics. Took quite awhile but he became "regular" and much healthier.

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To the original poster:

Our daughter had chronic constipation at about 3 years old. She was colicky shortly after being born and seemed to have stomach issues. After a severe bout resulting in impacted bowelsv (no movment for 11 days), we went to a GI specialist at childrens hospital. The doc prescribed Miralax and said some kids just have slow bowels. I said OK. A few months go by and my wife had the sense to say: We can't just have her on Miralax for life! We asked about food allergies but both our reg doc and specialist said- no, it would be loose stools for allergies. We got them tested anyways. Showed sensitivities for wheat and eggs. We cut them out of her diet, fixed her problem, going on about 4 years. This is just our experience, but something to consider. On occasion we let her have some wheat or egg and she starts getting backed up. Sorry for the long winded post, just wanted to share our experience.

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To the original poster:

Our daughter had chronic constipation at about 3 years old. She was colicky shortly after being born and seemed to have stomach issues. After a severe bout resulting in impacted bowelsv (no movment for 11 days), we went to a GI specialist at childrens hospital. The doc prescribed Miralax and said some kids just have slow bowels. I said OK. A few months go by and my wife had the sense to say: We can't just have her on Miralax for life! We asked about food allergies but both our reg doc and specialist said- no, it would be loose stools for allergies. We got them tested anyways. Showed sensitivities for wheat and eggs. We cut them out of her diet, fixed her problem, going on about 4 years. This is just our experience, but something to consider. On occasion we let her have some wheat or egg and she starts getting backed up. Sorry for the long winded post, just wanted to share our experience.

 

thank you! my son has had chronic constipation since he was 2. I asked about allergies several times but our pediatrician is not interested in those discussions. I had the same thought as your wife--I am sure it is safe, as they say, and that many kids are on miralax, but it seems like it might be masking something deeper that we have no insight on. With the incredible sensitivity to bacteria and viruses, it doesn't seem that unlikely he would have a sensitivity to foods or environmental factors. Can you just go to an allergist and request the tests?

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No problem, I had to post because your case sounded identical to ours.

You can go to an allergist or even your regular doctor and request IGE tests. Our daughter did not show IGE reaction (immediate/severe) Hers only showed up when we did the ones checking for IGG reaction (slower, chronic inflammation) These tests were through US Biotek. We were working with a naturopathic doctor-no insurance coverage. The tests did show a definite reaction to only those foods and it tested about 96 different foods. I was convinced. We have tested her again and her reaction to wheat has improved, but the egg is still bad. We suspect yeast overgrowth with her and treat using GSE, which has been helpful for her PANDAS symptoms as well.

 

 

thank you! my son has had chronic constipation since he was 2. I asked about allergies several times but our pediatrician is not interested in those discussions. I had the same thought as your wife--I am sure it is safe, as they say, and that many kids are on miralax, but it seems like it might be masking something deeper that we have no insight on. With the incredible sensitivity to bacteria and viruses, it doesn't seem that unlikely he would have a sensitivity to foods or environmental factors. Can you just go to an allergist and request the tests?

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  • 1 month later...

Both my kids suffer constipation and gerd, worse when in flares. They also have +ANA titers.

 

We have adopted a very good protocol to treat gastro issues since jumping on the PANDAS nightmare rollercoaster.

 

I will share a couple things here and if you want to know more details just PM me.

 

First of all high dose VIT C helps, Probiotics, oxypowder (mag oxide) moves bowels quick and is a better alternative than miralax, aloe vera juice, sacchromydes boulardi, fiber with inulin, enzymes for tummy DIGESTION and pain, pepcid for gerd. Believe it or not there is more.

 

My kids are complicated cases and they have a very long list of daily supplements all of which are helping.

 

I was in a living h**l when this started like all of you, but it does get better, not perfect, but better. The video that EAMom posted in another post touches on the many bacteria that can live in the gut mucosa and get into blood stream. 70% of our immune system is in our gut, so addressing the gut issues aggressively has helped my kids tremendously.

 

I have one son that is typical and another with autism both have the gut issues and PANDAS. Both have suffered chronic infections since very early in life.

 

DAN doctors, our regular ped, regular ped neuro and a gastro doc have all helped us along this journey. The gastro doc did not feel it necessary to do a scope he has been treating on clinical symptoms. We did do stool samples that were normal, but the gastro dr. stated their could still be bacteria overgrowth with normal results, so he treats. Thank goodness.

Hugs2day- pulling up this older post for a question - what type of Aloe Vera juice do you use? Someone just recommended St George's brand to me. Looking for a brand that doesn't taste too bad. Do you use it to keep the bowels moving, or for another reason? thx

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