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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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NMom

Been doing great until...

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First..thank you to everyone out here who continues to post and respond to issues. I don't post often but do watch the forum and often find answers to my questions. A little bit of backstory: my son (now 9) was diagnosed with PANDAS at 6 years of age. He had severe and sudden OCD after a strep infection as well as tics. He's been on Augmentin since June of 2010 and responded very well. We also did extensive ERP therapy and continue to use that during the small upticks that occur whenever he is getting sick. He has had a positive Lyme test (IGENEX) and a negative Lyme (Dr. B). We chose not to focus on treating Lyme specifically because he has done so well on the Augmentin. But I mention it now in case maybe it has some bearing on our newest problem.

 

For about the past six months he has had these horrible stomachaches. They were happening about every 3-4 months. He usually wakes up in the middle of the night and is in intense pain. He's shaking, crying and in one case threw up. Then he rushes to the bathroom, has a bowel movement and starts feeling better. Within about a half hour...he's perfectly fine. This has started happening more often although not as intensely. I've taken him to the pediatrician (not a PANDAS believer but at least he doesn't argue with me about it anymore!) and he believes it's constipation - Xrays indicated that as well. It's scary as ###### when it happens though. I've been on the verge of taking him to the ER more than once but it always resolves itself right after he uses the bathroom. I've got him on a priobiotic (Primal Defense) as well as Miralax every day but it continues to happen. Has anyone else had this issue? My biggest fear is that the Augmentin is damaging his stomach somehow and we are just brushing it off as constipation. Am taking him back to the pediatrician today and would appreciate the benefit of anyone else's experience. Any thought about what we should be looking for?

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Hey R.,

it's Linda...sorry to hear about N! You could test for H pylori (spelling?) or have a metamatrix stool test done. They are suppose to be thorough and I think it even looks for parasites. I'll call you later in the week and catch up....also, I think we could both use a glass of wine!

Prayers,

Linda

Edited by 3boysmom

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A couple of years ago before I knew anything about PANDAS or Lyme being part of our picture, I started developing these horrible stomach aches. It felt like a fist was pushing as hard as it could right under my sternum.

I think it was the most intense pain that I have ever felt. Then I would have a big bout of diarrhea (sorry, TMI!) and then I would start vomiting. Every time. The same order. Once the stomach ache came on, I knew the sequence. It was so bad that I had to go to the ER every time.

 

Doctors were baffled. Thought it was my gall bladder, but all tests, including a swallowing study, an ultrasound and an MRI showed nothing. Got referred to a GI doc who did an upper endoscopy. Nothing. Referred me to a specialized GI doc who couldn't figure it out. One of the GI docs prescribed something to stopped muscle spasms, and this did seem to help the 2X that I thought I felt it starting. Then, after that initial period of 4-5 months, it went away, and I have never had another episode.

 

I think, looking back, that it might have had something to do with parasites (yuck!) which surely don't go away on their own. I never saw anything, but all those symptoms seem to say that my body was trying to get rid of something.

 

I understand your worry about the abx. I am thinking that the kind of pain that would go with damage from them might be more constant and not relieve after he goes to the bathroom? Just speculation....

 

Hope he is rid of these soon!

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I know you mentioned you are not taking the lyme route, but...DD11 had intense stomach pain and cyclical IBS symptoms (once a week or every other week) that I could not pin down. She tested positive for bartonella, and as soon as treatment for that began the IBS/stomach pain disappeared, and has not returned. Stomach pain/IBS can be symptoms of bartonella.

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You may want to look into digestive enzymes... We started on those and they have been quite amazing. We also do natural calm magnesium at night and that is really good for keeping the bowels loose. Does he go to the bathroom regularly during the day, or just when he has those episodes? Even if it is "just constipation", that isn't normal and is especially bad for our kids because it means they are not detoxing properly. I would also pay close attention to what he is eating, maybe keep a journal and see if there is a pattern to what he is eating and when the episodes occur. Dairy is the biggest offender when it comes to constipation. Also, if you haven't had him tested for Celiac, I would do that too. Celiac can manifest in many ways and can happen at any point. Good luck and keep us posted!

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our dd9 has intermittent stomach aches. they resolve after she goes to the bathroom and may not be as painful as those you describe. she is on a gluten free diet though she does not have celiac, her brother does. recently we put her on a dairy free diet as well and are waiting to see if stomach aches return. she is on a regular magnesium

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Stomach problems can be common with Lyme. Augmentin may have made a dent in Lyme but not enough . If you know its in the picture it seens worth exploring. Sorry but I doubt the ped will be any help. What state are you in? Also just a note I don't have the link but you may want to google miralax autism. There seems to be a chemical in it that has been linked to autism.

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Thanks to everyone who responded. The X-ray today did show a large amount of stool in his intestine so he is definitely constipated. The doctor suggested a cleanse that is very popular with ped. gastro in our area. I agree though that this is not normal and certainly can't continue. I am going to look into the digestive enzymes. It may also be time to consider Lyme treatment. I hate to admit it but I've just been brushing that aside because he's done so well, there are no LLMD's in TX that I know of (we are in Houston) and I hate putting this poor kid through anything else. I think we had a positive Bartonella test at one point as well but then it was negative later so we moved on. He's also had a very high myco lab but no related symptoms during that time. I will also post on Lyme forum. Thanks again to everyone that responded.

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Here's the reference to the dangers of Miralax http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html

 

One thing you can use pysillium husk as an alternative http://en.wikipedia.org/wiki/Psyllium_seed_husks. We use this http://www.amazon.com/Foods-Psyllium-Husk-500mg-Capsules/dp/B0013OW2KS/ref=sr_1_2?s=hpc&ie=UTF8&qid=1363988144&sr=1-2&keywords=now+foods+psyllium+huskhttp:// in capsules. It draws water into the bowels and acts as a stool softener and as a fiber to keep the sides of the colon clean. Most days, my kids take one pill but if they haven't been regular, they'll take 2-3. But it works best when you also drink a fair amount of liquid.

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Thanks to everyone who responded. The X-ray today did show a large amount of stool in his intestine so he is definitely constipated. The doctor suggested a cleanse that is very popular with ped. gastro in our area. I agree though that this is not normal and certainly can't continue. I am going to look into the digestive enzymes. It may also be time to consider Lyme treatment. I hate to admit it but I've just been brushing that aside because he's done so well, there are no LLMD's in TX that I know of (we are in Houston) and I hate putting this poor kid through anything else. I think we had a positive Bartonella test at one point as well but then it was negative later so we moved on. He's also had a very high myco lab but no related symptoms during that time. I will also post on Lyme forum. Thanks again to everyone that responded.

Myco is also a Lyme co infection so for anyone that has elevated Myco its a good idea to explore Lyme. i'm sorry I know how tough it is but if you can figure out what it is, you have a better chance of success in overcoming it. My DD tested negative for Bart but has it. The best test for Bart seems to be the triple draw (i know, ugh) from Galaxy Labs, but you need to be off abx for 4 weeks prior and I think its $500. From what I understand many people test negative even through Igenex, but the Galaxy test is supposed to be pretty definitive. another think you can look at which Quest can do and your ped may agree to do is VEGF, that commonly (not always) gets elevated with Bart. My DD had terrible stomach pain when we started Lyme treatment but has gotten better. Good luck.

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