My Daughter's PANS Journey So Far

[TOaksMom]

Although I’ve been reading this forum for a year, this is my first post. We recently went to a new doctor and I wrote up a summary of my daughter’s condition for him and had some new tests run and I thought the chronology would be good to introduce ourselves and possibly help someone. There’s so many things that we’ve tried that I haven’t written here. I would love to develop a sort of typing of our kid’s symptoms and their reactions to the different kinds of supplements, herbs, antibiotics, diets, psych meds, etc. which would be helpful for us to see trends and guide us in what might work better for our particular type of child. We seem to keep doing the same trials and errors over and over again and so much precious time of our kid’s childhoods is lost in the process. I hope that every affected child in the world is freed of this insidious disease.

 

My daughter was born in 1997. Normal infant and toddler years except she had very loud teeth grinding/bruxism at night when she was sleeping. Dentist noticed molars had wear marks. Received all childhood vaccinations. Doctors would always comment that her lymph nodes and tonsils were enlarged during routine checkups but never did anything about it.

 

Was very sweet and kind until around 3rd grade, 8 yo. OCD starts.

 

10 yo, she got the TDAP vaccine. OCD increased and hoarding starts. Started getting defiant and oppositional. Would tell me to ‘go die in a hole’ if she didn’t like what I asked her to do.

 

11 yo, gets braces. Ortho had her on prescription fluoride for about 6 months. Aggression and defiance eases and she is nice and kind again but OCD increases.

 

13 yo, OCD issues have increased and are bad enough to see a psychiatrist. Started Prozac. Started very loud singing, very often. Extreme separation anxiety and constantly sitting on my lap hugging me and not wanting to get off. She started to develop lymphedema in both of her calves.

 

14 yo, motor tics started. She can control them at school and out in public but she would explode when she got home. Started Abilify for the tics. Still loud singing. Got braces off. Stopped Abilify which did nothing except gain 30 pounds in two months without an increase in food intake. I see the LeRoy teenagers on the Today show. My daughter is like them. I had read something about the PANDAS connection a couple months earlier but it seemed confusing. I follow their story and am intrigued. My daughter never had diagnosed strep but would often go to sleep at night complaining of a bad sore throat but wake up in the morning and it was better. Went to our Kaiser HMO primary care Dr. to explain daughter’s condition and the possible PANDAS connection. Dr. said Kaiser does not believe in PANDAS but took throat swab and blood strep test. They were negative. They gave her the first dose of the HPV vaccine. Her arm was very sore and she couldn’t raise it for about a week after. Did not get the two follow-up doses. I’m at a loss on what to do.

 

15 yo, loud singing turned into vocal tics, dog barking and gorilla sounds. She had dilated pupils all the time and she was always complaining she had to urinate too often. She has the PANDAS symptoms. We do one month of Azithromycin. She was much better after two weeks and then slowly got worse again. She said she loved taking the antibiotic because of the way it made her feel.

 

May 2012, she is still getting worse. I call Dr. T. for help. We do lots of blood tests. Mycoplasma pneumonia IGG is off the chart. PANS suspected. Stopped Prozac which did nothing. Did 6 weeks of Clarithromycin. Improvement initially but then symptoms are back to where they were before. Lymphedema much worse. Slim thighs but calves look almost as big and the skin is very tight. September, did one month of Doxycycline. No improvement and got even worse than before it was started, in retrospect the dose was too low. She starts having violent rages. Tried Azithromycin again for two weeks. No improvement. I recorded her whole body complex motor tics and during playback noticed her eyes rolled back a lot. Told Kaiser doc and EEG was ordered and was normal, she didn’t tic during it. After Kaiser neurologist sees tic video, she orders MRI and prescribes clonidine. MRI is normal. Stopped chlonidine after one week, it made her worse. Sophomore year starts and she’s developing major attention issues when doing homework at night and the constant tic’g makes it even harder. It is taking her even longer to do homework, brush teeth, shower, get dressed, eat. Lymphedema is worse.

 

October 2012, did a 5 day steroid burst. So much worse days 6-8. Better than before burst days 10-15 and then the worst ever after. I email Dr. T. and he replies that he is in the midst of the hurricane with no power.

 

November 2012, I had noticed that eating glutamates and wheat really exacerbated her tics and rages so she started a glutamate and wheat free diet for about two weeks and got a little better. Then ate wheat and glutamates for 5 days over the Thanksgiving holiday and she got so much worse that even she noticed how bad it affected her. Started the diet again but this time it is not working as well. Did two weeks of Nystatin with the appropriate diet, no improvement. Started taking fluvoxamine for OCD, Kaiser psychiatrist ordered and it makes my husband happy that she is taking a psych med again. Slight improvement with OCD noticed but tics and attention issues seem worse. Rages are still bad. She says feels like she can never rest or be completely relaxed. She has been picking the skin around her nails during school and her fingers are raw and bloody. She keeps getting a sporadic bumpy rash on her arms and legs that goes away in a day. Bruxism/teeth grinding when sleeping is so bad she shreds her retainers and gets a mouth guard.

 

December 2012, I email Dr. T. to let him know she’s not doing well and that I suspect that maybe even though she has never had any bowel/stomach issues with the antibiotics and she’s always taken probiotics, I suspect possible yeast issues and/or c-diff infection from all the antibiotic use. Dr. T. doesn’t reply. I know I need to call him instead but I don’t. Not sure how I would not sound like a desperate lunatic.

 

I am desperate and search for a non-Kaiser doctor and via a Lyme training site find a local one who is an MD but also does integrative medicine. He examines her and he suspects hookworm or another parasite due to her lymphedema and orders only the Metametrix GI Effects stool panel. I’m concerned about heavy metals and yeast but he is not. The test results will take a few weeks to get and my daughter is not doing well. The OCD I can handle but when my 5’8” 15 year old motor and vocal tics uncontrollably, it breaks my heart. In desperation and after over 2 months without antibiotics, we started azithromycin and bactrim and after 10 days she had a remarkable improvement in her tics and attention span.

 

January 2013, we have normal Blue Cross insurance. Adios Kaiser, I will not miss you. The GI Effects test results are back, only mild yeast. I tell the new Dr. about the antibiotics she started and her initial improvement but after 3 weeks she started backsliding. I also told him that when she was tested back in May for Lyme it was only the ELISA test. He orders the Igenix Western Blot. Last week it came back IGM positive for Lyme and we started Doxy. A good response but not great and added the Bactrim again and much better. Dr. suspects the Bactrim is hitting the co-infections. I also had my 18 yo DS tested and he is positive. I will post his symptoms another time. Both kids have a single C1298A MTHFR mutation. My husband and I will get tested and we have lots of symptoms but I think my kid’s Lyme is most likely congenital. Looking back now there were some infant/toddler symptoms that were overlooked. Igenix IGM is normally chronic Lyme. Before I had kids I pulled more engorged ticks out of my scalp than I can remember. It was a common occurrence in Arkansas. I feel so many emotions right now. Did my kids and are my kids really going through all of this pain because of me? I am glad we have a real PANS diagnosis but after watching Under Our Skin, the road ahead looks bumpy. Hopefully we will find an experienced LLMD in congenital, neurological Lyme. Again, I hope that every affected child in the world is freed of this insidious disease.

[colleendonny]

Hi, and welcome. I am sorry to hear of your daughter's struggles.

I am not a patient of Dr. T, but I do think you should keep trying to get a hold of him. How about setting up a phone consult and paying for it? As for a LLMD, we see a wonderful one. Where do you live?

[mdmom]

I sent you a personal message. Check your inbox.

[sf_mom]

I know your heartbreak as our entire family is also positive for Lyme et al. However there is hope now that you know 'mostly' with what you are dealing.

 

We've been at this for 3 years, our entire family is greatly improvement and we are reassembling our lives. The road to recovery is rocky and wish I could provide you with one thing that helped over the other but it all mattered inclusive of checking for heavy metals. My only recommendation is to find the best possible integrative LLMD that has expertise on treating every aspect of this illness. Since your DD appears to have been sick for a very long time her body is probably very depleted and loaded up with a lot. Supplementation hence detoxing support could be key to truly helping her body fight the bugs. Dr.'s Data does a decent job looking at vitamin and mineral deficiencies and if you haven't tested for KPU yet I would put that at the top of list.

 

Its a lot to take in initially but you will get there. Wishing you all the best in your families journey to wellness.

Edited January 26, 2013 by SF Mom

[rowingmom]

I feel so many emotions right now. Did my kids and are my kids really going through all of this pain because of me? I am glad we have a real PANS diagnosis but after watching Under Our Skin, the road ahead looks bumpy. Hopefully we will find an experienced LLMD in congenital, neurological Lyme. Again, I hope that every affected child in the world is freed of this insidious disease.

I also felt this way for a long time, until I read this:

"Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNAmaking the Iceman the earliest known human infected by the bug that causes Lyme disease."

 

http://ngm.nationalgeographic.com/2011/11/iceman-autopsy/hall-text

 

The borellia bacteria has been with us for a long time. Just my thoughts: many people are infected but asymptomatic (perhaps the reason for the failure of the lyme vaccination trials - many previously infected undiagnosed people reacting to the injection). I remember our vet telling me once that an animal will react to a vaccination if the animal is already infected. Don't you love vets? If the immune system is strong and uncompromised the infection will remain asymptomatic.

 

Something is happening with our children. Multiple vaccinations given to immature immune systems, pesticides, metals and other environmental pollutants, an evolutionarily innappropriate diet (humans evolved over millions of years, but industrially processed GMO grains and other food full of pesticides are the norm for people now). There has been a big increase in rates of autism and various autoimmune diseases in children. Immune systems are becoming compromised and infections are gaining a foothold. How we go about fixing this, I don't know.

 

Thank you so much for your well written summary, so familiar to many of us trying to find some answers. My husband usually leaves the researching to me and doesn't overly involve himself with our daughter's treatment. I think he is still trying to wrap his head around how all of this can even be possible. I don't often try to get him to read postings on the forum, but he read this one. After reading your summary, he suggested that I perhaps exempt our 16 year old son (not showing any symptoms) from his upcoming round of vaccinations until he is older and his immune system is more fully developed. My thoughts exactly. Yay! Thank you.

Edited January 26, 2013 by rowingmom

[Familyof5]

Hi, your post is heartfelt and probably describes most of our journeys. I would add that you should also look into whether or not you are living in a moldy environment. Lyme, mold, and pandas symptoms are all similar. The odds that your family is all exhibiting symptoms of illness is more likely to be caused by environment than all four of you we're bitten by a tic...how do you explain your husband's symptoms? Just want to make sure you consider it. Well wishes for You and your family. i hope you find answers soon......

Try detoxing first...cholestyramine is my detox rx wonder drug.

[TOaksMom]

Thank you all for your kind words. We live in Thousand Oaks, CA which about 30 miles west of Los Angeles. Just starting to navigate the LLMD waters. There are not a lot of them around here. Our current one is a pulmonary doctor who is just getting into Lyme treatment and does not appear to have a lot of experience. I prefer to not know more than the doctor. We have an appt. with a new LLMD next week and I hope for the best.

[sf_mom]

I did not realize you were in CA. We are fortunate to have a strong network of qualified LLMDs especially in Northern CA. Feel free to PM me via forum if things don't work out with the new Dr. and you are willing to travel north. I would be happy to forward the Dr.'s names up here. Our LLMD definitely has experience treating many children that have OCD presentation and who are congenital.

Edited January 27, 2013 by SF Mom

[jferinga]

Hi. We have Kaiser also. We are navigating this journey with them with a NIH diagnosis and positive autoimmune test. Do you have an update on Kaiser?

[KMom]

I am also looking fora doctor in the Los Angeles area. Did you find a good one? I hope things have gotten better. Please update if you have Doctor to recommend.

[boysrlove24]

I did not realize you were in CA. We are fortunate to have a strong network of qualified LLMDs especially in Northern CA. Feel free to PM me via forum if things don't work out with the new Dr. and you are willing to travel north. I would be happy to forward the Dr.'s names up here. Our LLMD definitely has experience treating many children that have OCD presentation and who are congenital.

Hi sf_mom,

I left a private email message for you. Your posts are fascinating and I'm wondering if you could help to point me in the direction of a good LLMD in San Francisco for my son. Thank you!!