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I posted this on ocd forum:

 

Okay since i was last on here asking about LDA immunotherapy and ocd, my dgtr was in the hospital for 4 days. After MRI, EEG, etc she was diagnosed with dysautonomia. I have been wondering since dysautonomia can be triggered by an infection(strep) if others have children with it? she has gotten worse since immunotherapy and now is homebound cannot go to school. We have tried ssri's and have learned she can only take a small dose, cutting the smallest dose in 1/4 or 1/2. I saw an article on this site discussing this exact finding. Wow! any input, insight appreciated. She still has ocd however there are more worrisome symptoms now, like inability to stand for a short time, major fight or flight symptoms.

 

one last question are dilated pupils part of pandas? she gets this when she is feeling the worse, it is also a symptom of dysautonomia from adrenaline, which I guess Pandas could be a subgroup. Tilt testing found neurally mediated hypotension. I believe she has POTS - tachycardia being the reason for the hospitalization.

 

thanks,

 

julie

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Julie,

 

So sorry to hear things are so rough right now.

 

I'm wondering if you could comment on something? Does your daughter have joint hypermobilty or is there any family history of connective tissue disorders? Miral valve problems?

 

When scanning Wiki on "dysautonomia," I see the info on Ehlers-Danlos and other disorders that have been touched upon over the years.

 

This is interesting too

 

The prototype of dysautonomia is the ancient scourge of beriberi, a nutritional deficiency disease due to excess of simple carbohydrate and concomitant vitamin B1 deficiency. In the early stages, this results in loss of functional efficiency in the central control mechanisms of the autonomic nervous system. If the nutritional deficiency continues, there is gradual degeneration of the system. Other vitamin deficiencies have been implicated in causing dysautonomia and, unlike the genetically determined forms of the disease, they are treatable.[11]

 

Neither of these things would rule out an infectious agent (autoimmunity) causing an increase in symptoms, just wondering if there are any dots to connect.

 

One of our scholarly moms sent me a paper that might be of interest to you. I'll read it again and forward if it pertains.

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Thanks Kim, we are addressing b vitamins no big changes.

 

my daughter does not have hyper mobility in fact she is the opposite. she does have mvp, psoriasis, hashimotoms and major food/inhalant allergies. IgE over 2000. steptozyme came back just barely over the range. i do not know a lot about the labs. her titers were fine if i am remembering right. we did one month of antibiotics in the fall. she still has ocd issues however we are more concerned about all the POTS symptoms leaving her barely functioning.

 

i thought there may be other teens going through this. dysautonomia is most likely triggered by an infection i was told. so i would not be surprised if others dealing with pandas have dysautonomia. I know that is such a general term, it can effect /cause issues GI, heart rate, orthostatic hypotonsion, anxiety, dizziness, tremors, brain fog, irritability.

 

my daughter has a lot of brain fog and anxiety. she cannot be upright without increasing symptoms.

 

she is on meds now to try and control bp.

 

thanks

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very interesting Pmom...

 

i think measuring neurotransmitters is difficult. we did do a neuroscience test. funny because seratonin was high but interpretation is important. if i remember right her dopamine levels were low. i get confused because i would think having higher seratonin would equal improved well being but that is not the case. this lab test is expensive and completed a year ago so a lot has changed. i know neurologists at mayo measure norepinephrine levels from supine to stand and with overactive sympathetic system, hyperadregenic forms of POTS the levels more then double.

 

i appreciate the input!

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P mom, I thought the same thing but I wonder if it's a problem with an antibodies binding with something and pumping out a bunch of dopamine and not a true deficiency in Dopamine beta hydroxylase?

 

It also made me think about the mom who recently posted about her sons vomiting issue

 

This can also have an impact on digestion. "Dopamine has an emetic effect and inhibitis digestive motricity"[

 

 

Julie,

 

I found something when I was looking at psoriasis that seemed pretty important. This paper describes how people with psoriasis respond to a fungus differently than people who don't have psoriasis. They react to GlcNAC, the same carbohydrate that has been found to be reactive in some of the strep papers cited here. GlcNAc is found in the cell wall of the strep bacteria and a polymer "chitin," is found in the cell wall of fungi. I don't think that the antibodies that are created in a psoriasis situation are ones that would cross the bbb and attack the brain (or could they?), but it might tell us something important about the way certain peoples immune systems respond.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2200471/pdf/cei0105-0079.pdf

 

There is a researcher who has proposed using n acetyl glucosamine (GlcNAc) to ward off T cells that are coded to recognize GlcNAc by blocking the receptors (because they also recognize self tissue and have been implicated in MS and type one diabetes). If these T cells are problematic in MS, Type one diabetes, psoriasis, and strep, seems it shouldn't be THAT hard to find an effective treatment? There was also a small study done using oral GlcNAc for stomach problems.

 

I don't know if there is anything out there that would tie this type of reponse to hashimotos? I did find a whoop of a bunch of people discussing hashimotos and hives on this cite http://thyroid.about.com/b/2004/07/19/hives-linked-to-autoimmune-thyroid-disease.htm.

 

Don't know if your daughter has had any problem with hives, but there have been quite a few posts reporting hives so thought it might be something some might want to keep an eye out for (thyroid problems).

 

Julie, when my son started having horrific stomach problems, which may have been caused by something similar to what your daughter is going through, the gastro told me "he's young, he'll recover well," (after telling me that she thought that he had had a virus that had caused his digestive tract to stop functioning right). He did, and I pray this problem will pass quickly for your daughter too. Hang in there!

Edited by kim
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very interesting Kim. Dr. shrader said psoriasis is often a result of molecular mimicry in response to strep. that is why we did strep has part of the LDA immunotherapy. i was so excited that we were addressing the root cause and would see changes in her, instead we got worse ocd immediately (i guess due to breach in blood brain barrier) and obvious dysautonomia symptoms which sent us to ER. i wonder if they are close to finding a treatment without making things worse. the one thing that helped her psoriasis immediately was Armour thyroid hormone. being gluten free has helped too. my daughter use to have hives bad as a baby and toddler. she does not get them any more. thank you so much for all the research. we got some smart moms on this forum, lol! i do think the support and research we all do help us get some answers. big thanks!

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Julie- so sorry to hear what your daughter is going through! Did they do the tilt testing while in the hospital or did you end up seeing a Cardiologist? I'm starting to think my daughter is dealing with some sort of dysautonomia (not as disabling). She is also homebound with severe nausea, GI issues, headaches, dizziness, gerd, trouble breathing at times, thirst, and temperature regulation problems.

Edited by philamom
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the hospital did mri and eeg (all normal) and then sent in cardiologist to evaluate. he gave us the diagnosis. he was not an expert but recognized the symptoms. he started her on florinef and salt tabs. we then realized we needed to see an autonomic specialist. i contacted dyna kids to get guidance. that is a helpful foundation to support families, kids with dysautonomia. feel free to contact them to help get guidance on finding dr etc.

 

i would not be surprised to find out that in some kids with pandas (triggered by strep) would also have dysautonomia symptoms since i have been told it is triggered by an infection too. i think the addition of growth spurt with hormone changes can combine into a perfect storm and cause dysregulation of the autonomic nervous system.

 

we were addressing pandas symptoms after the LDA and then once dx of dysautonomia started focusing on that. now that we have started treatment with dysautonomia i realize the ocd issues are still there. i am going to discuss getting back on antibiotics again to see if we can improve symptoms.

 

we had tilt table test at the pediatric cardiologist that specializes in dysautonomia. we had to travel out of state. he also did valsalva test and breath test. my daughter's bp dropped with all tests.

 

hope this helps.

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Thank you. I was on their website last night. I'm sure you probably saw this article but thought I would post it anyhow. I came across it when searching for info.

 

Dysautonomia

Disorders of the Autonomic Nervous System

Aug 12, 2007 Elaine Moore

autonomic nervous system - bewell.comDisorders of dysautonomia include familial and autoimmune disorders that interfere with the normal function of the autonomic nervous system.

Autonomic nervous system (ANS) dysfunction, which results in a condition known as dysautonomia, includes several disorders that interfere with normal autonomic nervous system responses. The autonomic nervous system is responsible for the involuntary actions that regulate our heart, gastrointestinal, urinary, muscles, and bowel functions as well as our metabolic and endocrine systems. Endocrine responses include reactions to stress or the flight or fight response. Dysautonomia is also referred to as autonomic failure and autonomic neuropathy.

 

Autonomic Nervous System

The autonomic nervous system is comprised of sensory, enteric, and motor systems. The motor systems include the sympathetic and parasympathetic nervous systems. The autonomic nervous system transmits sensory impulses that it receives from blood vessels, the heart and other organs in the chest, as well as the abdomen and pelvis. It transmits these impulses through nerves to other parts of the brain, primarily the medulla, pons and hypothalamus.

 

These impulses rarely reach our consciousness but they elicit automatic responses through the efferent autonomic nerves that cause appropriate reactions in the heart, vascular system and other organs. These impulses can result from stress, temperature changes, posture, food intake and other conditions to which the body is exposed.

 

 

Dysautonomia Disorders

Disorders of dysautonomia can result from both impaired and excessive functioning of the autonomic nervous system. Disorders in this family include Guillain-Barre syndrome, which is associated with vaccines, chronic inflammatory demyelinating polyneuropathy (CIDP), mitral vein prolapse dysautonomia, pure autonomic failure, postural orthostatic tachycardia syndrome (POTS), panic disorder, irritable bowel syndrome (IBS), neurocardiogenic syncope, multiple system atrophy (Shy-Drager Syndrome), chronic fatigue syndrome (CFS), fibromyalgia, and PANDA syndrome.

 

Who is Affected?

Disorders of autonomia may be familial or inherited or they may occur as autoimmune conditions. Dysautonomia may occur as a primary disease or it can occur as a secondary disease in people with other autoimmune disorders, alcoholism or Parkinson’s disease. Autoimmune dysautonomia is more likely to occur in people with other autoimmune diseases, especially autoimmune thyroid disorders, diabetes, and Sjogren’s syndrome. It can be triggered by infectious agents, for instance the development of PANDA syndrome in children recovering from streptococcal infection, and following vaccines especially in Guillain-Barre syndrome.

 

Autoantibodies

Autoantibodies seen in autoimmune dysautonomia include antibodies to the ganglionic acetylcholine receptor and anti-basal ganglia antibodies.

 

 

Symptoms

Symptoms vary depending on the specific disorder but overall common symptoms include dizziness, fatigue, motor function disturbances, blurred vision, depression, vague but disturbing aches and pains, headache, exercise intolerance, severe anxiety attacks, numbness or tingling, impotence, dizziness with standing or exertion, gastrointestinal disturbances, tachycardia, hypotension, hypertension and other symptoms. Symptoms may be self-limited and resolve over time or they may be chronic and progressive. Usually, a cluster of symptoms develops and the specific symptoms can change over time.

 

Treatment

Treatment depends on the specific disorder present. Treatment is usually aimed at alleviating symptoms such as pain medications or at suppressing the immune system, such as the use of intravenous immunoglobulin (IVIG) therapy in Guillain-Barre syndrome.

 

Resources

Dysautonomia, National Institute of Neurological Disorders and Stroke, National Institutes of Health,

 

National Dysautonomia Research Foundation

 

 

 

 

 

 

--------------------------------------------------------------------------------

Edited by philamom
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  • 3 months later...

I'm a little in shock. I completely missed this thread. I had a horrible run with Dysautonomia about 2 years before my daughter was diagnosed with PANDAS. My blood pressures were 60's/40's prone and I had to take meds to get them up to a level where I could work myself back to stable health. Thankfully, I am off those now, but I do have to drink Elete water daily.

 

I need some time to read more and absorb this information... :mellow:

Edited by browneyesmom
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