Reader-submitted: A serious issue in need of immediate awareness

This town is bursting with lyme disease and Pandas/PANS with little to no publicity about the havoc it wreaks. I am sharing this story to promote awareness that children with sudden onset of behavioral issues can stem from tick borne infections and many others.

My child was a dream student up until 6th grade. I went to PTAs and only heard good reports. During that year, under an excellent Rebbe, his behavior started changing from one day to the next. We visited top educators, specialists, neurologists, therapists, psychiatrists and more and all were baffled. Our pediatrician sent us for psychiatric help, the
psychiatrist referred us to an immunologist. We were laughed at by the resource organizations that help refer children into proper care, both in the medical world and in the psychiatric world.

While in Monsey to visit family we visited a pediatrician, just to hear another opinion, he recommended a full work-up for tick-borne infections and we saw some glaring positives. The immunologist we found (by ourselves) did a work-up and found immune disfunction, another proof. Our local physician still did not believe this could be related. We found many
doctors who accept this and have treatment plans with good prognoses.

The delay in diagnosis, the controversy in care in the community and lack of awareness have caused us more pain than dealing with our child’s illness, the expense of the treatment or the actual suffering he is going through pales in comparison to the tzaar that noone accepts his condition.

Schools won’t bend for a behavior issue caused by an illness not accepted by local physicians. Society meets the
needs of children with autism and accepts that ADHD is real. Schools will provide hook-ups for children who cannot attend school due to medical treatment. Even PPD has lost its ‘secret suffering’ due to awareness.

Where is the acceptance of infectious induced inflammation?! I was walking in the socks store and I heard a mother
on the phone saying, “When will I get my child back how long on the antibiotics?”, this is what Lyme/PANS/PANDAS is doing to our children.

When will we get our children back?

But first, when will the community start to accept that lyme/Strep can cause other issues beyond joint pain/sore throats.

Please make sure your children are well protected, please make sure that the girl in your daughter’s class is treated
with respect even though she may have become socially awkward, and please, please respect your talmidim/talmidos/client’s choices to get to the bottom of their child’s suffering even if you think local physicians have all the answers.

My child’s future is in the balance due to the lack of awareness in the community.

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  1. Absolutely agree. We have been dealing with pandas in my son for a while, and almost everyone we speak with- including medical professionals- have very limited knowledge in these matters. I think the community would benefit greatly from education in these prevalent issues. Kol hakavod for spreading awareness!

  2. Thanks for writing this letter! I B’H have not struggled with this challenge, but I deeply wish for others to not have to suffer like you. These type of phantom-symptom illnesses need awareness – not judgemental or cavalier attitudes. I agree with #1 that we as a community would benefit from an expert/panel event to educate our medical community (and public) about symptoms/risks/etc.

  3. I had previously written a reply to a TLS article about a week ago warning about Lyme’s complications and mis-diagnosis. Your story is exactly mine. My son is now 20 dealing with the consequences of a bite he had gotten in camp when he was 13. His condition is so severe after years of wrong diagnoses and incorrect and/or failed treatments that he is now almost totally dysfunctional and disabled to say the least. We keep trying and trying different things and will keep praying for a breakthrough, God willing. Insurance does NOT cover the treatments because there is no diagnostic code after the complications set in. They suddenly appear and gradually it goes downhill from there. His name is David Eliezer ben Devorah. Please pray for him and add him to your Tehillim list. Thank you. May Hashem protect us from such tragedies.

  4. Actually Lyme disease is quite controversial and its proponents are somewhat fanatical and attribute all problems in life to Lyme – my family has been involved with someone who was convinced by others that they had lyme when in fact, there were many other issues – none of which were lyme.

    • It is controversial. People do blanket the disease and blame symptoms on it. When there is a positive test result marking inflammation in the brain, you can call it LYME, PANS or autoimmune encephalitis it is medically confirmed. The labwork itself costs more than $4000. We did it for our daughter.

      • @anon: Were the “others” qualified medical practitioners? I take offense to your description of “fanatical”. Thank you Dina. If anyone is interested in starting a support group please contact me at ron AT Substitute the AT with @. Please put Lyme in the Subject and my wife will get back to you. You can include your phone number if you wish.

    • dear anon
      An infectious disease doctor can test appropriately. If it is truly lyme’s or west niles virus or pamdas – then there is a great need for community sensitivity.
      To be “convinced by others” is a statement that even contributes to the severity of the problem, because these well meaning “others” can tragically destroy families and lives with their own diagnoses and suggestions.

  5. Firstly Refuah Shlaimah bsoch shar cholei yisroel. Secondly, ” We were laughed at by resource organizations” Shameless! Are these said organizations run by humans? Are they familiar with the three attributes that identify our holy nation? I am embarrassed on their behalf. Bli neder I will make a effort to be more empathetic. I hope others will do likewise.

  6. Wonderful article. Our daughter was not diagnosed until a neurotherapist told us to go to an infectious disease doctor who then diagnosed West Niles virus as a cause for the mental disorientation and behavior deterioration. Real Psychological damage was incurred and much PTSD only due to our community’s rejection of her and the cruelty of schools,parents and children. Hashem Yerachem. I never thought a mother and a child could go through such Gehinnom. Family members were embarrassed and wanted to “put her away” and said I was also crazy. I am a teaching professional and far from meshuga. Unfortunately, people build walls when they do not want to see the truth.
    I refrained from suing, but instead work on begging Hashem to use all our pain as a kapporo and key to answering our tefillos.
    I was told many times, that had she not remained frum, she would have a more quality life. She has remained frum, and is a victim of vicious false gossip, and lack of understanding, compassion and respect. I have all the paperwork to support my lonely stand in a city that is a citadel of Torah. I believe that such children are a test of real yiddisheh character.
    Few have come through as supportive, helpful friends. I had and have to pay lots of money for help. The loneliness and the labelling is crippling. I pity those parents who do not have the education and the educational system in our Torah community who lost an opportunity to teach our next generation of guarantors of Torah, what real ahavas yisroel is. My message is very sketchy. What our family endured, is and was shameful.

  7. to #4
    PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

    I know a local social worker who recommends a strep workup when seeing children with OCD symptoms to rule out PANDAS before starting therapy.

  8. Lyme disease isn’t the only problem with tick bites. My husband was in ICU for over a month (coma) and another two month in the hospital needing major surgery two summers ago. They said it was a miracle he made it. His nurse actually cried saying that this makes her job worth it, saying she sees this maybe once in 15 years that someone in his condition made it. For him, it caused an infection in his blood. And Anon, you are right; Lyme’s is hard to detect. Please check your children and yourselves when get in. Lakewood is bad. Found two on me this spring.

  9. I can’t imagine that our caring doctors in Lakewood would be so callous about this problem – This is what our “Medical Helper Services” are putting you through – The expert doctors recommended psyichiatric help – I am horrified and hope that you send this article to each of our esteemed ‘tzadikkim doctors’ giving them a little taste of what you are going through. I’m sorry – i don’t mean to be sarcastic, i just am sick of thinking what you are going through – with no support, no friends as you are under the radar – Just remember you have Hashem and he will be your helper – when you know He is the only one your tefillos are very powerful – Bsuros Tovos and Yeshuos b’karov

  10. @raintree yes, I just found a tick on my toddler last week. B”h we cought it right away and according to the CDC it takes 36-48 hours to spread Lyme.

  11. From my own experience, Lyme is very common.

    Years ago, I removed a tick from my young son. Didn’t think twice about it until he broke out in rashes a few weeks later.

    The rashes weren’t there for long, but luckily we spotted them and he was put on antibiotics right away.

    It is very easy for a child to get a Rick bite and Lyme without noticing the tick or the visibe symptoms (ticks can bite on the head under the hair, and the bite is painless)

  12. There is a law that schools have to provide accomodation for children that have a disability – they can’t just be treated like your problem- If you tell us which congressman or senator or rosh yeshiva to write – i will be happy to write them. Why is this less than RCCS or Catapult or Kriah – why can’t these children get a shadow if they need one or some special services. We have to take care of this immediately

  13. Dr. Eilenberg is well versed in PANDAS and actually believes in it. He is the one who diagnosed my child. He follows the PANDAS expert Dr. Susan Schulman’s protocol. We saw both doctors and they directed us with treatment options.

  14. I just want to mention that a regular Lyme test by labcorp etc is not accurate !! you must order one from igenex lab you can google it and have a test sent to your house and drawn by a local lab..plenty ppl are chronic sufferers because they took a standard test and received negatives till yrs later took proper test !taking antibiotic a month after a bite is too late it is already in the system you must take as soon as you are bitten
    I have a support group if anyone wants they can contact me thru the scoop. To another dad please contact me I have an amazing doctor that might be of help
    And as a side note infectious disease doctors are Not the way to go with Lyme!!!you need a Lyme specialist!!!!
    I’m so sorry about all of you who are suffering you should all have a refua shleima Bkorov!!

  15. Unfortunately an excellent and timely article.
    This is a really serious situation and there are definitely some Doctors in town that are cognizant of it. That being said it doesn’t seem like there is alot of knowledge in the medical field regarding treatment although they do know that many children respond well to an antibiotic. The problem is that many times it isn’t a cure and must be taken indefinitely which is a scary thought. I have two children who have been taking antibiotics to treat Pandas for over two years and each time they were almost weaned the entire situation erupted again and they were forced to go back on. I don’t know if this is unique to Lakewood, but either way we really need Rachamei Shamayim and also some more research and acceptance in the community and in the schools.

    • my son has pandas we treated him with antibiotics for one year we saw minimal results. we took his tonsils out ,since his tonsils were pitted in strep.still not much change. bechasdie hashem we heard about an alternative medacine called essential oils.we tried it and we got our son back. for more information you can contact me through the lakewood scoop.

  16. There are homeopathic remedies that can be made of the blood and urine samples of a child that is afflicted that are used to specifically treat the microbes of Lymes Disease and PANDA’s. The results are good and they are effective because they are made from the child’s own cells. These remedies are generated by a computer model and are safe and precise. Refuah Sheleimah, may you find your cure from HaShem.

  17. my daughter suffered so badly for months from pandas a few years ago. At that point we had no idea what it was until i did some research online.
    My pediatrician was not helpful in the slightest.. he told me pandas is all lakewood baloney because of dr shulmans article in the binah, and now every parent thinks that their kids have it. He refused to help me. He sent me to relief. Bh someone told me about Dr Eilenberg and he was amazing. He was one of the first doctors i spoke to who actually recognized pandas as something real and he prescribed zithromax for 30 days. This did wonders and she became a happy sweet kid like she used to be.

  18. I noticed a general theme in many of the comments- a general distrust of doctors. In this community in general, people seem to trust non medically trained “experts” more than physicians who spent many years training and practicing.

    The human body is complex and many things are intertwined. It takes a lot of years to learn it all and to know how to look at the big picture. It also takes a good understanding of science, research and statistics to understand the validity of medical information, diseases and proposed treatments.

    Also realize that some of the doctors have followed their patients progress through some of these proposed diagnoses and treatment. It has given them a lot of insight as an outside observer of the overall picture.

    I in no way mean to belittle the suffering of these people and choose sides in this issue. That is because at least I have the understanding to say it is above my head.

    This topic (trust issues) is just something that bothered me for a long time.

  19. My elderly yet healthy mother suddenly developed hallucinations, she started commenting that she had Nevuah, that she met Hashem and described what He told her in detail and also she began asking me to move furniture that didn’t exist. I was referred to a top psychiatrist but the appointment wasn’t immediate so I took her to a physician and demanded a full medical workup meanwhile. She had a urinary tract infection and the symptoms subsided immediately upon treating. She had no discomfort from the UTI just the altered mental status. Over the next 2 years this happened many times till we started adding preventative foods to avoid UTIs (cranberry etc). If I would have got to the psychiatrist first she would have been treated with medicine for a psychiatric condition and the symptoms would have been masked and gone untreated perhaps resulting in death. Any of her children and grandchildren that would experience fear, worry, sadness, or trouble at school in the future would report it to the doctor with a history of mental illness in the family, resulting in an even quicker label. Infection and parasites presenting as a psychosis is documented back to makkas kinim where the Egyptians went mental because of the bugs in their intestines. If something funny is going on then something funny is going on. There are doctors who look at the whole situation that can help.

  20. We have been going through the nightmares of pandas for close to 3 years now and would love to form a support group so that we can alll get ideas from eachother. If you would be interested in joining please contact me through the lakewood scoop. Thanks!

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