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I really need some help. My family is in crisis mode. Before Febuary 23, 2015 my 8 year old daughter who was adopted from guatemala at 5 months old was a lovable young lady. She loved school, had friends, was very athletic, followed rules and was basically a very normal wonderful girl. She was a very easy baby and never really experienced any terrible two's or ever had any problem separating from myself or my husband. This all changed this last February. She came home from school and had a two hour rage that involved hitting me, throwing objects and running around the house out of control. After she was calm I tried to figure out what was making her so upset. The only thing that made sense to me was that a girl in her class that was adopted from Guatemala presented in front of the class about being adopted. So I thought the melt down was related to adoption issues.


For the rest of that week she would come home each night and have 2-3 hour rages. She would start pushing me and then it would turn into hitting me and going after her brother and throwing objects. She would go from having a huge rage to crying and saying she wanted to die. She said that she did not want to feel like this any more and said she wanted to be dead.


During this time she would continue to go to school and have no issues at school. Anything from asking her to brush her teeth to turning off the TV was a trigger for her rages. Homework started to be a huge issue, asking her to complete homework would set off a rage. Her bedtime routine turned into a huge battle. Her rages/depression when she was home continued for three solid weeks. In March she went from having rages every day to being afraid she would throw up and she would walk around the house with a throw up bucket. She stopped eating. She would only eat maybe a cup of rice or noodles a day and would eat nothing else. She lost 6 pound from February to April. She also started to refuse to go to school. She started complaining of stomach aches and would throw huge rages when I tried to get her out the door in the morning. When I finally got her to school she would refuse to go into the lunch room because she said the smell of the food and the sound made her feel sick and she was afraid she would throw up.

 

She also went through times where she would not leave the couch and she would complain of joint pains and stomach pains. She would cry if I left her side and would go into a rage if I had to leave the house. Because she never had a fever and never actually threw up I did not take her to the doctor. I finally did take her to the doctor and they ran a strep test, and ran other blood tests. Everything came back normal. She continued to have rages and also continued to not eat, complain about her stomach and have major anxiety about school, throwing up and major, major separation anxiety. She also had a change in her voice. It was sort of like baby talk but it was really strange.

 

This went on for several more weeks so I again I took her back to her doctor. They looked at her urine and found she had a UTI. They put her on amoxicillin for 10 days. During those ten days she did not have one rage and did not complain of any pains. It was the best ten days we have had in all of this nightmare. After we stopped the amoxicillin she went back to having rages and all the other symptoms.

 

Since the second week of all of this I had her going to a therapist. Her therapist worked with her on adoption issues and thought the rages were due to the fact that she is adopted. I really felt that this was not what was causing the rages and all the other behaviors. I then also took her to an allergist thinking maybe food allergies could be causing all of this and then I also took he to a psychiatrist. The allergist said no allergies to food and the psychiatrist was really not sure what she had. I was starting to think she was showing signs of early onset bipolar but this also didn't seem right to me. So I am back to square one with all of this. Just tonight she had an hour rage and put a hole in our door.

 

A friend of mine told me to research PANDAS/PANS syndrome. I have done a lot of reading on the syndrome and I really am wondering if this is what she could have. I called her doctor and her doctor told me he did not think that was what she has going on, so again I am back to trying to figure out what has happened to my daughter. Our family is in crisis mode and we don't know how much more of all of this we can take. We need an answer and don't know to do. I would be so happy for any suggestions.

 

Daugherincrisis.

 

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I would urge you to go to a specialist. Some of the things you are describing sound exactly like my son. He pulled out a good portion of the hair on his head in about a weeks time - we thought he was upset his grandmother was just diagnosed with pulmonary fibrosis and the whole family was upset. He was perfect at school and really bad at home for a long time and then he could not hold it together at school. He had major separation anxiety, speaks like a baby when he is flaring, and stopped going into the lunch room because it was now too loud. Not sure what strep test you had - there are actually 3 different blood strep tests besides the swab. Also my son had multiple other infections.

Good luck to your family.

Melmix

DS8 PANDAS/PANS/Lyme

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I have 2 kids with PANDAS, they also have OCD

Just want to suggest that there videos from the News with David Muir 2020 on abcnews,com, on youtube too I think. The program illustrate some of what you describe

 

My exact point is that there was a doctor from the Michigan (?) area on this program and it matched our kids so closely that i really felt like going to see the guy myself. You should be able to get his name on the video. Hope it helps.

Edited by emst
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It is my understanding that there are doctors at the Children's Hospital of Detroit (Chunagi? Something like that.) who are familiar with PANDAS/PANS. Not sure how proximate you are to that, but it is an option. Also, check the "Doctors Who Have Helped Us" topic on the pinned threads at the top of this forum. There is more than likely a couple of doctors in Michigan or Ohio noted there.

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1 Psychologist in Michigan:

 

MICHIGAN

 

Dr. David Wartel

Psychologist (specializes in CBT)

248-626-1330

West Bloomfield, MI

 

 

 

 

Several docs in Ohio:

 

OHIO

 

Dr. Cheryl Leuthaesuer

Integrative Wellcare

216-696-2320

Richfield, OH

 

Dr. Ali Carine

Integrative Pediatrics

614-459-4200

Upper Arlington, OH

 

*Dr. Allen Lewis (Leading PANDAS Physician)

Integrative Pediatrician

614-245-4750

Gahanna, OH

will treat more complicated cases involving PANDAS and Autism

 

Dr. Jan Kriwinsky

Pediatrician

216-831-7337

Beachwood , OH

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/#MICHIGAN

Edited by mayzoo
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The doctor may have thought it wasn't a possibility because your daughter's strep test was negative, but this isn't necessarily the case. Other things can trigger PANDAS/PANS. In our case the trigger was an obvious case of pneumonia, but the underlying causes were Lyme and coinfections, viruses and other immune system issues. For us, working with an integrative MD who knows how to address all the infections, immune problems, and vitamin/mineral deficiencies was the answer.

 

The symptoms you describe are classic for PANDAS/PANS and the knee pain makes me wonder if Lyme could be part of the puzzle.

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I've heard this story before, except I was the one telling it. :( my daughter's rages don't really have anything to do with what she says they're about, and unless something else happened to cause your dd to have hard feelings about being adopted, I doubt the presentation is what "caused" her rages either....

 

My dd had sudden onset PANS just before she turned 8. She stopped eating, and went to an almost completely liquid diet in under 2 months. She suddenly had sensory issues, OCD, extreme anxiety, extreme fear of choking/swallowing just about everything, school refusal, short term memory loss, cognitive issues, difficulty with math, ODD, rages, fatigue, skin picking, feared being alone, depression, social anxiety, emotional lability, decreased handwriting skills, etc. BUT, she DID NOT exhibit these behaviors in school- With the exception of restricted eating.

 

Is your dd eating again? I found this to be a less common symptom than most-- as terrible as all of the other symptoms were, I think this was one of the hardest to endure. (I say this having been through daily raging episodes for months as well) My tiny girl lost about 5 pounds and it was terrifying. It took a long time to resolve her restricted eating.

 

FYI- my dd never had strep (as far as we know). Her mycoplasma levels were very high, and her doctor suspects Bartonella as well, based on her symptoms.

 

I would seek out a Pandas/Pans doctor or an LLMD immediately. The symptoms that you're describing don't "just happen" for no reason, or because another student gave a presentation. You will find that most general practitioners and pediatricians either don't know anything about Pans or aren't qualified to treat it. Find a specialist, and follow your gut- you know your child!

 

Best wishes... You are not alone! Keep asking questions and researching.

Edited by beerae22
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I've heard this story too and I was the one telling it. My son was adopted from Russia as a 6 month old and he was a perfectly typically healthy 5 yo, when he suddenly wasn't after a flumist vaccine. Doctors told me it was adoption issues (which he had never had previously), then aspergers or bipolar, again, never had one symptom of either previously. Do NOT let them tell you its adoption issues. I urge you to explore PANDAS/PANS and the possibility of lyme disease. To make a very long story short, my son has PANS/lyme disease.

 

I am from Michigan and I cannot recommend Dr. Chugani. He does not know PANDAS, although he likes to think he does. He does have an experimental CAT scan he's working on but its not reliable, at this point. He does not treat many PANDAS kids in Michigan because he has his own strict definition and your child must have tics and chorea like movements. He does not prescribe abx. If he decides your child has PANDAS, based on his criteria, you will be treated with IVIG.

 

PM me and I'll give you some more information on treating physicians.

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p/p is moving slowly into the mainstream. while you wait for a specialist, there is a lot you can do. your PCP should run tests -- see pinned material for tests to be run. give your pcp NIH recommendation from this page https://www.pandasppn.org/

argue for PANS, not PANDAS, since PANDAS is stricly strep and PANS is everything.

get informed and teach your PCP

change diet. no sugar, as much organic as possible, perhaps gluten and dairy free.

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If you find your daughter negatively testing for strep, please consider conferring with a ILADS LLMD (Lyme Literate Medical Doctor). They understand that lyme and/or coinfections (bartonella, babesia, mycoplasma) can be responsible for PANS reactions. Ours did, and told me that once DD's infections were under control her PANS symptoms would resolve along with the brain inflammation caused by them.

 

They have.

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Sounds familiar to me too...we have a pans/pandas diagnosis--But after spiking a fever 24hr after starting a second round of amox, his docs r taking a second look.and checking again for myco and also anti-nmda (look up nmda encephalitis). Our 6yo ds had the rages, etc and they responded to otc doses of ibuprofen which bought us some time. Not a cure or total fix but really helped. He's now on steroids and an MNRI and spinal tap may come yet...

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Thanks to all the people that wrote in with advice and sharing their stories. This was very helpful.

 

As a follow up we saw an Infectiouse disease doctor at the hospital in our area. I was told by another parent that this would most likely not turn out well because they do not have the knowledge about Pans/Pandas. After spending over an hour going over everything the doctor did say that it sounds like Pans/Pandas but then he kept asking me if she had been bullied at school. I am so frusterated. I have been to my DD's PCP 5 times since February, started my daughter in therapy, took her to a psycharist, and an allergist with no answers given and still have a very sick child on my hands. How insulting and frusterating this appointment was. In the end he said that she could very well have Pans/Pandas but until he knows the results of the blood tests for strep there is nothing he can do but he suggests she continue with her counseling. He said he would only give amox if she tested positive for strep. I felt so frusterated with this appointment and wish I could take back the time all of this took.

 

Since I had a feeling that this appointment would not turn out well, I also made an appointment with a PANS/PANDAS specialist but can't get in until Octoer. So while I wait for results from strep test I have a couple of questions. If the blood tests that were taken today on my DD come back negative how can I still get help for her while I am waiting for the appointment in October. I was given another name of a doctor that I am going to call tomorrow but I am sure they will have a long wait also. Any suggestions?

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daughterincrisis,

 

Do you have copies of the blood work that was done from the first Dr.s appointment that your daughter had after initial symptoms in Feb?

I'm a fan of getting and keeping copies of those for comparison. I would request copies of everything from this latest appt. too.

 

I'm assuming the ID Dr. is checking strep titers? The pinned threads at the top of the forum (I think it's titled Helpful threads for understanding PANDAS/PANS). A father from the forum (and others), have put together some great information concerning what those tests will tell and their limitations. Other topics include the possible benefit of other antibiotics, research links etc. One of those posts is here, but I would read through the whole thread. Hopefully, it will help make these appointments less frustrating and more beneficial for you.

 

http://latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

Edited by kim
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