My niece was diagnosed with neuro Behçet’s, she is only 5 years old, does anyone have experience with children? She had seizures and fever

[Magl]

Hello, I’m new here and doing an extensive research on Behçet’s. When my niece was 3 years old she was diagnosed with uveitis (idiopathic at the time), that she had been treating since then, with corticoide, her right eye has improved. Just recently she had strong fever and was taken to hospital where she had many seizures, she ended up staying four days there and she was diagnosed with neuro Behçet’s. She also had migraines and the mouth ulcers. We are from Brazil, where I absolute never heard of Behçet’s before, not common here. The good thing is that she went to one of the best hospitals in São Paulo and has one of the best rheumatologist and neuro studying her case. That is why the diagnose was fast. Actually we suspect now, that Behçet’s has been for a long time (since uveitis) but only now with more symptoms. I’ve been reading this site a lot, but I don’t find many comments about people who suffers from seizures, convulsions. Does anyone has experience with it? She also has some little confusion, she says some things that don’t make sense. She had negative to many reagents in her blood test, and her ANA was first 1:320 few years ago and now went to 1:160. Sorry if I’m being confused but the auto immune disease world is new to me, as we don’t have any family case. The doctor wants to start the imunossupresive treatment asap. Thank you any help is great

[jzeis]

Hi Magl,

Tony Thornburn at the BSS forwarded your emails to me, but I'm responding to you in the group in case anyone else is dealing with the same types of issues in a family member.

First of all, I'm so sorry to hear about your daughter's symptoms It's heartbreaking to watch your own child be so sick. If she's being seen in Sao Paulo, though, the doctors should be able to help. You may already have seen these articles on Behcet's in Brazil, but if not, here are the links (your daughter's doctors may have even worked on the articles?). I'm sorry, but I'm not able to get the full articles, just the summaries here:

1) "Epilepsy and Behçet's disease: cortical and hippocampal involvement in Brazilian patients" ncbi.nlm.nih.gov/pubmed/218...

2) "Behçet's disease in Brazilian patients: demographic and clinical features"

ncbi.nlm.nih.gov/pubmed/214...

It would be good for your daughter to be seen by a uveitis specialist, if she hasn't already. The OIUF (Ocular Inflammatory and Uveitis Foundation) has a list on its website of specialists, and it includes these uveitis specialists in Brazil:

(1) Rubens Belfort Jr., MD

Dept. of Ophthalmology Tel: [phone]/

Federal University of Sao Paulo 55-11-5085-2010

Paulista School of Medicine – Sao Paulo Hospital

Rua Botucatu, 822 FAX: [phone]

Sao Paulo 04023-062

55 11 30836692

E-mail: [e-mail]

(2) Clovis Arcoverde Freitas Neto, MD

Hospital de Olhos Santa Luzia

Estrada do Encanamento 909,

Casa Forte

Recife-PE, Brazil 52070-000

Tel: [phone]

(3) Cristina Muccioli, MD

Uveitis Division

Sao Paulo Medical School

Federal University of Sao Paulo

Rua Botucatu 822

Sao Paulo, SP – 04023062

Tel: [phone]

FAX: [phone]

E-mail: [e-mail]

And finally, I wanted to ask if anyone's suggested getting your daughter tested for HA20 (haploinsufficiency of A20). There's not much info available about HA20 yet, since it was just discovered in the last couple years. It's a genetic disease, and has a lot of symptoms that are similar to Behcet's; some diagnosed BD patients have actually turned out having HA20 instead. I'm not sure how much it would change your daughter's treatment, but it might be worth checking. Seizures aren't mentioned in the case studies I've seen, but there's only been a handful of HA20 reports published so far.

For more information on HA20, please look at this chart from the Autoinflammatory Alliance: autoinflammatory-search.org... Once you're there, do a search for "HA20" and it'll bring you to basic information on the disease.

If you want your daughter to be tested for HA20, she'll need a test for the gene TNFAIP3. Her doctor could order it -- here's the link: ncbi.nlm.nih.gov/gtr/all/te...

I hope some of this info has helped.

Wishing you and your daughter all the best,

Joanne Z.

[Magl in reply to jzeis]

Thank you so much Joanne, sorry to take so long to reply, Serena is actually my niece, and I've been very involved because I love her so much and is not easy to see a child go through that. Thanks for all the links and articles, for all the doctors recommendation, dr Rubens Belfort is her doctor of uveitis, since she was about 3 years old, when the first symptom appeared. Behcets is a condition that is hard to diagnose, that is why I believe is important to check the HA20 because she never had genital sores, which I believe is a common symptom of people with Behcets. Anyway, we have been fortunate to be with a group of good doctors here in São Paulo, I've been researching on complementary ways to heal, changing the diet, suplemmenting with nutrients, she is now taking anti convulsion and immunosuppressive medication.

I wish she could reverse all of this and be able to live a healthy life. Thanks again for all your help,

Marina

[Anne_08]

Magl, I’m from Brazil too. My brother has Behcet and treats with Dr Marco Aurelio Lana in Belo Horizonte. You can check, he save him. Can I ask you a question? Estou investigando Behcet em mim tambem, o meu FAN tambem veio positivo. Esse FAN de sua sobrinha , qual o padrão dele? Nucleolar? Nuclear? Também estou bastante apreensiva. Obrigada

[Magl in reply to Anne_08]

Olá Anne, seu irmão tem quantos anos? Qual o tratamento que ele faz, que bom saber sobre esse médico em BH foi mandar pra minha irmã levar minha sobrinha. Ela está com uma reumato e neuro do hospital Sirio Libanês aqui em SP, e tbm tem o médico de uveiti dela. Queria saber mais sobre como foi feito o diagnóstico no seu irmão, o que ele sentia? Minha sobrinha começou com a uveite e recentemente que ela teve um episódio com as convulsões e algumas feridas na boca. Ela nunca teve a genital. Vou me informar direitinho com a minha irmã sobre qual o exame FAN que a Serena fez, e já te passo em seguida. Espero que seu irmão esteja bem, o que eu aprendi do universo das doenças auto imunes é que elas podem ser revertidas se a causa da inflamação seja curada. É que o difícil é saber de onde vem os sintomas, mas já se sabe que alimentação é o fator número um. Existem alguns alimentos que podem ser altamente inflamatórios para algumas pessoas, e para outras não. A doença auto imune precisa do gatilho para que ela comece a dar os primeiros sinais. Esse gatilho vem da inflamação que acontece no corpo, e a causa muitas vezes pode ser o que comemos. Enfim, quero dizer que um exame reagente pode não ser a doença, pois ela pode nunca ser desencadeada. Acho que depende de inúmeros fatores e cada caso é um caso.

[Anne_08 in reply to Magl]

É verdade. Meu irmão teve o diagnóstico com 15 anos, teve uma uveíte também. Algumas aftas na boca. Dois anos depois teve uma nova uveíte, quase ficou cego. Depois que ele foi ter uma úlcera genital. Mas ele nunca teve FAN positivo. Tomou medicação por quase dois anos. Desde então, a doença entrou em remissao, ele tem 31 hoje. Desde os 21 não toma nada. Por isso que fiquei querendo saber qual o padrão do FAN dela

[Anne_08 in reply to Anne_08]

O meu tambem veio positivo

[Magl in reply to Anne_08]

Anne fico muito feliz em ouvir a história do seu irmão, acredito que a doença pode não somente entrar em remissão, mas também ser totalmente revertida pelo corpo, se cuidarmos muito bem da saúde. Eu assisti alguns episódios online dessa série autoimmune secrets e tem muita coisa interessante que se sabe hj sobre doenças auto imune em geral, na verdade a maioria das doenças são autoimunes. E isso vem crescendo demais no mundo todo, com certeza devido ao nosso estilo de vida. O exame da minha sobrinha primeiro deu Padrão nuclear e metafasico pontilhado fino (era 1:320) e depois abaixou pra 1:160.

Ela está bem mas a medicação é um pouco forte e ela sente náusea eu acho, pois as vezes não quer comer. Vc sabe qual a medicação que seu irmão tomou durante o tratamento dele?

Tem muita pesquisa interessante pra fazer sobre a medicina funcional, pois para combatermos a inflamação do corpo, devemos suprir nosso corpo de nutrientes que irão ajudar nesse processo. Tem algumas dietas anti-inflamatórias para tentar e dieta por eliminação, vc vai tirando a colocando alguns alimentos, ai vc consegue saber o que causa inflamação. Qq dica que precisar pode contar comigo.

[Anne_08 in reply to Magl]

Oi, também acredito nisso. Usou corticoide em altas doses, depois azatioprina que eu me lembre.

[Hidden]

hello mag im sorry about your daghter and my heart goes to her as i have uveitis and its pretty scary but do not worry uvetis from behects is responsive to immjnesupprassants such as azathioprine and colchicine plus steriods which is givin at the start to controle and reduce the inflammation she can controle these symtoms though steriods at the start and then let her tart azathioprine asap cause it takes 3/6 months to work and thats is safer long term then steriods and also get her on colchicin works good with ulcers!!! as for the headaches and confusion thats difficult one to call as if their are consistant everyday then im affriad its chance she might have neuro-behcets but dont take my word for it see a behceta speciailst as im only speaking from talking ti proffesors and behceta specailst and constant painfull headcahes and cofusion is symtpom of neuro behcets also you need to test her for the behcets gene if she tests positive for the gene then the diseases would be harsher then thise without the gene i got my gene test today and im nagative thanking god for that gracefully so please test her for the gene and find good specailist to essure you of the disease if you could fly her to england theirs great proffesor in london whos been doing this 20+ years and she would defo 100% tell you if ur neice has neuro-behcets beleive me!! all good blessing to you and ur family tc

[Magl in reply to Hidden]

Thank you Ayman, she is my niece, she's been on medication now for a month and she is fine, no confusion or seizures, it was her first episode and confusion lasted for few days after she got the seizures. She stayed 4 days at the hospital then they came with the diagnose because of her uveitis that started few years before. She had some mouth ulcers and since medication nothing more. Only the effects of medications. I got very involved on this because I could not believe that a 5 year old girl could have such a rare disease. We have no history in the family, no Turkish relation, it was just scary when I first read about Behcets. Specially neuro type. I was very sad because I love her. Then I started my own research because the answers from medicine was not enough for me. That is when I discover a new world of functional medicine, where the root of the problem is adressed. You find where inflammation is coming from, then you give your body enough nutrients to fight it. I believe the number one cause of inflamation in the body is caused by the food we eat nowadays. A lot of food can be inflaming for some people whereas for others no. I watched the series autoimmune secrets and there are a bunch of interview with doctors and stories of people that reversed their autoimune disease. It is impressive. We know now that almost all disease are autoimmune including cancer and Alzheimer's. It has been growing a lot on the last century and I believe is related to our lifestyle, our food, pesticides, heavy metals, etc. I believe if we address the cause of the problem, where the inflammation is coming from, we can reverse. Of course is many changes and people are different, so there is no rule fits all. Thank you and blessings to you too! Marina

[Hidden]

yes thats very good as she is stable what medacations is she taking atm? also to add infliximab and bioligical drugs giving early for uveitis could help greatly as my proff told me! and functional medicine is powerfull your very right about that they address the real issue of inflammation but behcets is from over active immunesystem way above normal people level its so active it attacks the body with inflammation the proff told me that behcets patainfs immune system is too good which is bad thing as it makes it too active and go haywire, but maybe functional medicine could help its espensive to get consultations for functional medicine dictors in uk as they charge redicules amount of money, but if you can find one in brazil and ur neice gets cured through him fixing her gut and changing her diet detecting heavy metals like mercury or testing her for hidden infections then many pataints with behcets will start taking that route it needs a bd pataints to try that route to see if it results in cure which not many have spokin about on here but best of luck !!!

[Magl in reply to Hidden]

Hi Ayman, she tested the gene HLB51 and it is negative, but there is something about gene B38 and B48 that they found and they said it can be related to Behcets. When she started with the uveitis she was only taking the eye drop with corticoids, and her eye got better and responded well, after the seizures she started taking Methotexate, have you taken this medication? She is responding well, it's been little over a month she started, so we are still watching closely. My sister is trying to adjust her diet, because she used to eat a lot of gluten and suggar, which is very inflaming. I believe you are right about the imune system being "too good" with this autoimmune condition, because Serena always had a strong imune system, she was born natural birth, breast fed until she was 3 years old! Super strong genes, she never got sick before this happened, never had to take antibiotics for anything. That is why the medication concerns me, because you are weakening your imune system that works so well...I know is necessary to manage the inflamation, but for a life time I think is too much. I believe trying to address the cause of the inflamation can be done along with the treatment, but the real thing is, nobody is really willing to change drastically their lifestyle or diet or habits. To prevent inflamation you have to "quit" or stop whatever is causing it. If it is food, you can't eat that particular food, never. If it is another toxin, like mold, you have to live without absolute any mold, and many times we don't "see" mold, but is there...I believe is worth to try, because many people have cured just by doing these changes. doctors of functional medicine have many protocols to follow and looking at your blood tests they can read you, investigate your whole system to find the cause. Also detoxifying and strengthening your imune system, we all need to do that, wether we have symptoms or not

[Hidden]

yes i have used steriod eye drops when the inflammation is in the front but im on oral steriods atm as they controle all the inflammation , as i have billeteral panuveitis , and yeh it is too good as we rarely get flus or fevers as children and adults speakin from my past , and you are right cant stay on medacations for ever as they can damage our organs greatly and the doctors even know that!! to find the real cause if inflammation is probibly the key but these specialist and proff cant understand it so they are far of the soloution i dont know if functional medicine doctor can detect it by doing their medicial procedures like food alergins , leaky gut , toxicity in gut or high levels of mercury no one with behcets has really gone through that route as theirs doctors have told them it wont help but who knows its all mystery i hope ur neice is okay anyway takecare

[Magl in reply to Hidden]

Thank you, I hope you are fine too. I let you know the advances on her treatment, along with the doctors of Behcets she has another functional medicine doctor and a nutritionist that is working with her. I believe our body has the potential to heal, the same way it has the potential to inflame. I know when it comes to health, no one wants to face any issue, because it can be devastating...But life itself is a mistery and a good way to look at a disease, is like an opportunity to inform ourselves more, to take care of ourselves more, to love ourselves more. By doing this, anything is possible, to anyone. Best of luck. Marina

[Hidden in reply to Magl]

thats good to hear thats shes working with these fuctional medicine doctors i hope she gets cured through that route and god willingly if she does then i will for sure try it out my self just if you can please let me know what happes with this new choice of treatment thanks and you take care also