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Severe Bad Moods Cycle Every Nine Days


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I know severe bad moods with morbid thoughts is a common symptom among PANDAS/PITAND kids. For the last few months my 19 year old daughter has been going into a bad mood every 9 days. Once the mood hits it stays for four days then it leaves as suddenly as it came. During the bad mood she doesn't sleep. Once it lifts she's very happy but exhausted and needs to rest for a couple of days. That leaves her with only 3 days until the nine day cycle is over and the next bad mood strikes. Has anyone else experienced this kind of exact cycle with mood swings? I'm having her checked for parasites. I just can't figure out what 9 days means to a kid's body.

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I know severe bad moods with morbid thoughts is a common symptom among PANDAS/PITAND kids. For the last few months my 19 year old daughter has been going into a bad mood every 9 days. Once the mood hits it stays for four days then it leaves as suddenly as it came. During the bad mood she doesn't sleep. Once it lifts she's very happy but exhausted and needs to rest for a couple of days. That leaves her with only 3 days until the nine day cycle is over and the next bad mood strikes. Has anyone else experienced this kind of exact cycle with mood swings? I'm having her checked for parasites. I just can't figure out what 9 days means to a kid's body.

I have been following a young lady on YouTube that has been twitching constantly now for about four months or so. She has pandas. You can look her up by doing a you tube search on pandas syndrome. Her name is ruby. In her latest video she describes the exact same pattern. I suspect this may be hormone related. Have you tracked this with her cycle at all. I have also wondered about the theory that some children seem to "out grow" PANDAS at puberty. To me that would suggest hormones would play some role in strengthening the bbb. I know it would be controversial to give children hormones but just curious as to whether or not anything has been tried along those lines.

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My son had symptoms that cycled every 10 to 12 days. Dr.s could not figure out why his symptoms were cycling. He would become exhausted and just layed around all day. He stopped eating, would not get dressed, could not go to school and when he was out of bed he would just pace around the house tapping on windows, his head and licking/chewing on things and sometimes he would just repeat the same word over and over 1,000x a day. His symptoms would last the same 10 to 12 days and then he would wake up on day 13 or so and he was happy and full of energy like nothing ever happend. His cycling lasted for exactly a year...from May 2010 to May 2011 he would have these symptoms every 2 weeks, and then he would be fine for 2 weeks. Then he suddenly stopped cycling and we thought he was cured, but now he cycles with the same sysmptoms only they are 4 months apart now and they last for 26 to 28 days. He has had a few rounds of ivig, iv steroids and is now on keflex. Dr.s are not 100% positive its pandas, but for right now that his diagnosis because everything else checks out except his aso titers and anti dnase.

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I have been following a young lady on YouTube that has been twitching constantly now for about four months or so. She has pandas. You can look her up by doing a you tube search on pandas syndrome. Her name is ruby. In her latest video she describes the exact same pattern. I suspect this may be hormone related. Have you tracked this with her cycle at all. I have also wondered about the theory that some children seem to "out grow" PANDAS at puberty. To me that would suggest hormones would play some role in strengthening the bbb. I know it would be controversial to give children hormones but just curious as to whether or not anything has been tried along those lines.

 

Thanks Missmom, That is my daughter. We have thought about hormones. Dr. T has discussed trying birth control pills. Hormones just don't seem to fit into a 9 day cycle so we haven't actually tried any hormone treatments yet. Ruby does have a younger brother who with a T&A and a few years has seemed to "outgrow" PANDAS. The moods are by far her worst symptom right now. I'm just afraid that things are getting worse instead of better.

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My son had symptoms that cycled every 10 to 12 days. Dr.s could not figure out why his symptoms were cycling. He would become exhausted and just layed around all day. He stopped eating, would not get dressed, could not go to school and when he was out of bed he would just pace around the house tapping on windows, his head and licking/chewing on things and sometimes he would just repeat the same word over and over 1,000x a day. His symptoms would last the same 10 to 12 days and then he would wake up on day 13 or so and he was happy and full of energy like nothing ever happend. His cycling lasted for exactly a year...from May 2010 to May 2011 he would have these symptoms every 2 weeks, and then he would be fine for 2 weeks. Then he suddenly stopped cycling and we thought he was cured, but now he cycles with the same sysmptoms only they are 4 months apart now and they last for 26 to 28 days. He has had a few rounds of ivig, iv steroids and is now on keflex. Dr.s are not 100% positive its pandas, but for right now that his diagnosis because everything else checks out except his aso titers and anti dnase.

 

Oh I'm so sorry he has to go through this. His cycle sounds like it makes a little more sense than my daughters. Do things change for him with a full moon? The moon doesn't affect my daughter but it has affected other people in the family. Has he been checked for parasites? My daughter has been diagnosed with PANDAS and PITAND but we are still considering that there might be something else at play that we're missing. Dr. T seems to think that there might be a problem with copper. He just hasn't figured it out yet.

 

 

 

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Just a thought--has her thyroid been checked? In Hashimoto's (autoimmune thyroiditis) the body cycles between hypo and hyper thyroid until the the thyroid burns out. I have heard that some people feel they have fairly predictable cycles that last days, rather than weeks or months. My DS is dx'ed with Hashimoto's in addition to PANDAS, although there is no family history of thyroid problems. He does not have rapid cycling. I ran across an interesting study that mothers of kids with PANDAS had much higher rates of autimmune diseases than mothers without PANDAS kids. The most common form of autoimmune disease found was Hashimoto's.

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Just a thought--has her thyroid been checked? In Hashimoto's (autoimmune thyroiditis) the body cycles between hypo and hyper thyroid until the the thyroid burns out. I have heard that some people feel they have fairly predictable cycles that last days, rather than weeks or months. My DS is dx'ed with Hashimoto's in addition to PANDAS, although there is no family history of thyroid problems. He does not have rapid cycling. I ran across an interesting study that mothers of kids with PANDAS had much higher rates of autimmune diseases than mothers without PANDAS kids. The most common form of autoimmune disease found was Hashimoto's.

 

Thanks very much. I just wrote to both of our doctors. I'll let you know what happens.

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Egyud,

 

Sorry, did not know that ruby was your daughter, just want to let you know she is great. What a great attitude she has, I am so impressed with her. I just know that when she gets well, and she will get well, she will go on to accomplish greatness. You are an incredible mother to have raised her to be such an inspirational young lady. But going back to the cycles, I hope that you find answers. I don't exactly know how the nine days would fit into a monthly menstrual cycle, but I do know that personally a lot of my own PMS issues resolved once I started taking birth control pills. I always had really bad cramping and moodiness that would start a few days before my cycle and would last until a few days after. Probably a total of 8 or 9 days. Not sure I had any issues during ovulation but that would have probably started 8 or 9 days after that. Not sure but that could be some kind of pattern. Anyway, wishing you all the best and will keep you in my thoughts and prayers.

 

Linda

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Egyud,

 

Sorry, did not know that ruby was your daughter, just want to let you know she is great. What a great attitude she has, I am so impressed with her. I just know that when she gets well, and she will get well, she will go on to accomplish greatness. You are an incredible mother to have raised her to be such an inspirational young lady. But going back to the cycles, I hope that you find answers. I don't exactly know how the nine days would fit into a monthly menstrual cycle, but I do know that personally a lot of my own PMS issues resolved once I started taking birth control pills. I always had really bad cramping and moodiness that would start a few days before my cycle and would last until a few days after. Probably a total of 8 or 9 days. Not sure I had any issues during ovulation but that would have probably started 8 or 9 days after that. Not sure but that could be some kind of pattern. Anyway, wishing you all the best and will keep you in my thoughts and prayers.

 

Linda

 

 

Be careful with birth control pills. They can cause other problems, like strokes (I know one young lady who had one from the birth control pill.) so, nothing comes without risks.

 

Another thought to figure out what is going on, is to consider seeing an ART person. They are able to figure out what is going on by manual muscle testing. PM me if you want more information.

Edited by tpotter
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I have read on various sites that bartonella has a short life cycle - some say a 3-4 day cycle, others say a 10-12 day cycle. Very hard to find solid research (here's a very brief background http://www.frylabs.com/bartonella.php). Many LLMDs suspect bartonella when neuropsych symptoms are dominant. But to be honest, I think some of that's because until our Pandas kids started coming to them, many just dealt with lyme that manifested with physical symptoms. "Neuro"lyme often gets a footnote. But I suspect that in our kids who are predisposed to neuropsych issues, both lyme and bartonella can be behind the OCD, rages, etc.

 

Still, lyme has a 3-4 week cycle, so the 9 days might point to bartonella. Hard to get an accurate lab test, as the link I included explains. Fry Labs is generally pricey but I include the link FWIW. My impression is that Dr T is reluctant to go down the lyme/co-infection trail but I sense his patients are pushing him a little closer as time goes on. Specialty Labs - a division of Quest - has a bartonella test that's covered by insurance and considered the best among the bad. So you could ask about that. But if it came back negative, I don't know if you could rely on the results.

 

The other option is to do an amino acid test http://www.greatplainslaboratory.com/home/eng/urine_amino_acid.asp to check levels of 20-40 neurotransmitters. This might help you supplement to help with the moods while you try to figure out if any infection is causing the 9 day cycle. My DD responds really well to tryptophan, a seratonin precursor. This doesn't do much for my DS but tyrosine (a dopamine precursor) really helps him. So it's possible that doing an amino acid test could help you narrow down a neurotransmitter deficiency and treat accordingly while you continue your hunt for the trigger.

 

Living through a rough period with my DD right now, so I can really sympathize.

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My son cycles every 7 days just as you described its leaves as fast as it comes on. For him it is 24 to 48 hours sometimes less. Its basically Thursday. We dread Thursday.

 

We do suspect Bartonella in him but he has only been diagnosed clinically by DAN dr. I do notice improvement on the abx combination of Azithro + Bactrim.

 

The neuro says epilepsy also cycles and he is now scheduled for EEG. I really don't supsect epilepsy but I am allowing the test to rule it out.

 

I think I will look up that amino acid test LLM mentioned through great plains. I only noticed the cycle a few months ago as I looked through my journal. Then I pointed it out to my husband and we both started realizing Thursdays.

I have not noticed anything with the moon though I will have to start watching that. I have heard of that theory before but never understood it.

 

Does your daughter have gastro problems? Why do you suspect parasites? My son does have major constipation I notice he does better on flagyly. I wonder if that indicates parasites?

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Lots of good info. here!

 

The first thing our ND (natureopathic doctor) did for testing/treatment was parasites/worms treatment (have done 3 times so far), KPU & heavy metals (hair test covered by insurance) testing. She also uses ART testing.

 

We then did blood work for hormones (TSH;T4F;T3Free), metabolic panel; CBC (blood cells, lymphs etc.), lyme (CD-57), viruses, inflammation(TGF-b1). Found lots of useful information in these tests to proceed with treatment.

 

Best wishes!

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My son cycles every 7 days just as you described its leaves as fast as it comes on. For him it is 24 to 48 hours sometimes less. Its basically Thursday. We dread Thursday.

 

We do suspect Bartonella in him but he has only been diagnosed clinically by DAN dr. I do notice improvement on the abx combination of Azithro + Bactrim.

 

The neuro says epilepsy also cycles and he is now scheduled for EEG. I really don't supsect epilepsy but I am allowing the test to rule it out.

 

I think I will look up that amino acid test LLM mentioned through great plains. I only noticed the cycle a few months ago as I looked through my journal. Then I pointed it out to my husband and we both started realizing Thursdays.

I have not noticed anything with the moon though I will have to start watching that. I have heard of that theory before but never understood it.

 

Does your daughter have gastro problems? Why do you suspect parasites? My son does have major constipation I notice he does better on flagyly. I wonder if that indicates parasites?

 

I thought about parasites just because of the nine day cycle. I couldn't think of any human thing that would run on such a cycle so I thought maybe a parasite. We haven't been able to test for them yet. Has your son had plasmapheresis? We are just realizing now that this started after pex. I know people use pex to get rid of this sort of thing but I've never heard of anyone who got it from pex. It's very interesting that your son has this rapid cycle also.

 

Has your son had any cortico steroid treatments? My dd had IV steroids just before she had pex. She had anxiety problems during the treatment. Could they be in creasing now even though the treatment ended months ago?

Edited by Egyud
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My son cycles every 7 days just as you described its leaves as fast as it comes on. For him it is 24 to 48 hours sometimes less. Its basically Thursday. We dread Thursday.

 

We do suspect Bartonella in him but he has only been diagnosed clinically by DAN dr. I do notice improvement on the abx combination of Azithro + Bactrim.

 

The neuro says epilepsy also cycles and he is now scheduled for EEG. I really don't supsect epilepsy but I am allowing the test to rule it out.

 

I think I will look up that amino acid test LLM mentioned through great plains. I only noticed the cycle a few months ago as I looked through my journal. Then I pointed it out to my husband and we both started realizing Thursdays.

I have not noticed anything with the moon though I will have to start watching that. I have heard of that theory before but never understood it.

 

Does your daughter have gastro problems? Why do you suspect parasites? My son does have major constipation I notice he does better on flagyly. I wonder if that indicates parasites?

 

 

Seizures can also be caused by lyme/bartonella, etc. Does your DS have stretch marks anywhere on his body (typically dark reddish/purple (kind of looks like cat scratches.) This is a quick way to tell if there is bartonella (although not everyone with bart has the rashes, many do, and like us, didn't know that the stretch marks meant anything in particular.)

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Thank you so much for all the comments. Things have been extremely bad with my dd but I have been discussing all the ideas on here with every Dr. I can get hold of. All of this started for her right after pex. She did have IV steroids shortly before the pex. Has anyone ever heard of either steroids or pex causing such a horrible and worsening reaction even a few months after treatment? I shudder to think that I've done something to my poor girl that made things worse for her. I can't find anything to relieve this anxiety for her. She doesn't sleep or eat or drink. I wish that I could just knock her out and let her sleep through all this while I try to find the answer. I can't stand to see any of our kids suffer.

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