UK Infantile Spasms Trust
UK Infantile Spasms Trust
Welcome to the UK Infantile Spasms Trust. The UK Infantile Spasms Trust has been newly established in 2017 by a group of families with children affected by infantile spasms.
This site was set up by a group of UK parents who found each other through one of the international IS support groups. Prior to 2016 there was no Infantile Spasms support network in the UK. We started as a Facebook group, and found like-minded parents who were passionate about raising awareness of IS and supporting other families. UKIST became a registered charity in March 2017. We hope you find the information on the site helpful.
Registered charity (no 1172167)
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i have my baby boy diagnosed sith IS when he was 4mos but he started having seizure when he was 2mos .but because of lack of doctors at my place we know bout it a bit late and its sad ..
What happened to him?
Bravo Bella! You are the winner! ❤❤❤❤
Thank you for posting this. My eight year old has CVI. Thankfully, we have an amazing medical team and TVI who works diligently with him, and a school that is open to new ideas that might accommodate his needs better.
Thank you for this video my child arch on her back and crawl backward
hi, my child cries a lot while treating him and dont allow me to touch him and make him do anything, is it ok to make him do exercises forcefully?
Sweet little curly top!❤😊
Hello am from Kenya I have who is 18 months she raises her legs all the time am much worried abt it, I have tried my best to give her medication the only thing doctor says she is very OK ,my baby don't crawl, walk .I need any help please from you.may God be with all.
Maybe show your pediatrician this video.
Go to child neurologist
M so happy for you
Thankyou
My one year baby due to hypoxia have brain cystic encephalomalacia he is not smiling and social Eye contact I start his treatment under pedia neuro physician still same condition
My one year baby due to hypoxia have brain cystic encephalomalacia he is not smiling and social Eye contact I start his treatment under pedia neuro physician still same condition
Hi doc! We need help for my nephew because he was diagnosed with infantile spasm but the medicine is not available in the Philippines. Besides, we cannot afford to buy it because we are poor. We really need your help for this little angel.
Great explanation and helpful techniques. Thanks!
Beautiful little girl
I had brain damage when I was a baby that caused my Tumor Seizure. I had my Tumor surgically removed when I was 8. Hopefully it’s not spreading all over her brain.
Really
@@mohinich6286 Yeah I was diagnosed with Epilepsy when I was 2 my eyes are sensitive to flashing lights.
Thank you for sharing your story. I would love know how she's doing now?
Dr Omar on youtube is the best option for any epileptic patient out here or a child suffering from infantile spasms! His medication is the best and highly recommended. kzread.info/dash/bejne/fpOnxNOHj7DfZ9o.html
Great and Helpful tips to get rid of infantile spasms by Dr Omar on youtube. Please subscribe to his youtube channel. He got nice meds and it's safe kzread.info/dash/bejne/fpOnxNOHj7DfZ9o.html
Is newborn screening can detect that syndrome?
No...
I need help , I am from India and my premature baby boy also doing like this spasm from last 4 days I need someones guidence please help
Ho to doctors and started ferment as soon as possible .vegabetrin
Go to doctor Sameer kiro... Burla government hospital sambalpur odisha..
Hloo
Yela undhi mi bby ki same symptoms ma bby kuda unnayea
Plzz rpy evvadandhi naku tension ga undhi
🙏🙏🙏🙏🙏🙏♥️♥️♥️♥️♥️♥️🍀🍀🍀🍀🍀🍀
My 3 months son is diagnosed with epilepsy i need more information please somebody can explain
I.have.also.a.daughter..with.epilepsy.she.has..started.the.fits..at.the.age.of.one.and..half..month..per..day.she.gone.through..five..fits..l.realize.there.is.something..dangerouse..l..went.to..CMH.hospitale..abbottabad...doctor.tolled.me..to..make.a.vidio.of..baby..when..fits.come..it..will.prove.what..kind..of..epilipsy..next..day..l.came.along..viodio..of..baby.s..fit..they..confirm.that..kind.of..eplisy..called...rare...infatile..spasm..that.kind.of..fits..clled..salam.fits..they..make.a.test...called...EEG..which..measure..the..brain.....waves.....it.also..show..what..kind..of..epilesy..at..the..age...of...nine..month.she..passed..away...b.c.that..kind.of..epilesy...was..very..rare..she..could..not...servive...doctor.also..told.us..frequent..fits..damage..her..brain......
Any..where.u.lived..first.of..all.consult..the..best..neurologist..and..show.them..what.kind.of..fits..they..are...make.u.r.child..vedio...l..pray..God..bless..ur.baby..ameen.
@@hummasarfarazkhan9493 tha k you sister for your kind prayers, I’ve went to Lahore to Dr Nazir Malik he said my son is suffering from epilepsy but it’s not infantile spasms or othohara syndrome
Hello, pls my baby of 2yrs cannot sit nor stand yet, she can't hold things yet too. She has infantile spasms. Pls What drug do u recommend
Hi. I'm looking at getting some help for my son. I believe there is something wrong with him and watching these videos and doing research I think he has baby spasms, we have been in hospital with him for the last week and none of the doctors or nurses are listening to me and are saying I'm just a first time mother worrying as they clearly don't have the experience with this. His eyes some times roll in the back of his head, he throws his legs and arms up in his sleep and when he is awake and crys after, his breathing sometimes goes funny and there is more things going on. Can someone recommend a doctor in the UK we can take him to please? He is only 9 weeks old. Thank you
Currently In hospital with my 7 week old having spasms, doctor thinks silent reflux but I refuse to take that as a diagnosis and said I wanted an eeg done to rule out more serious things, I finally got eeg today after 5 days we get results tomorrow, but the hospital would of glady sent us home with just a diagnosis of reflux, only I stood my ground, Go back through A&E exaggerat if you have to just to put your mind at rest
How is your son now? My baby is also 9 weeks old. Doing same things in sleep. Please reply. Worrying so much
@@lisacomerford9691 hi. I know this was last year but was everything okay?
Contact Dr Omar on youtube for special meds/cure for epilepsy. He got great and helpful meds to help get rid of any type of seizures/epilepsy. He also got cure/meds for Infantile Spasms Thank you
Please reply me
Hi I am from India my 16 months baby also diagnosed infantile spasm last 1 year but she did not walk and sit properly and seizures are comes 3 to 4 times in a day daily. She is now take medication that is zonisamide 100mg,clonazepam 0.25mg, clobazam 5mg it is good for her
What kind of treatment you have given her? How is she now?
Too old for s dummy....
How is Bella now doing?
What kind of treatment she got ?
Dear UK Infantile Spasms Trust, Thank you for the videos.I have learnt a lot from the movement video and head control. Please, I will appreciate for you to do a video on how best to teach my 3 year old daughter to sit properly and also to WALK. My email is [email protected]. Regards,
I really hope that Bella is living a happy and wonderfull life right now.
She's adorable
Trust
كيف عالجته ؟
Thanks you Dr for posting l am from Pakistan and my daughter wo is 3 year's old suffering from infantile spams problem as per neuropdiatric advance we are giving him medicine as vigabatrin sabril and my daughter spams are not stopped yet could you please me through which we can stop spams please help me
Try to prevent a lack of sleep and fever symptoms in your child as much as you can because they are provoking the spasms. We never went out late at night and made sure our son was always in bed at time for his naps. Suppress fever immediately with aspirine, or paracetamol that is suited for infants and small children, but be sure to stick to the instructions on the package. My son had infantile spasms, but outgrew it at six years old with the help of medication and the above tips. He is now a gymnasium student, 17 years old. Good luck, and all the best for your child 🌻🌻
What treatment Ur child had.did he have any development delays
@@jolandahulstein6658 what was the cause of infantile spasm in Ur son.plz do let me know
@@nadiashirazi3925 no my son does not have any left over effects of the epilepsy. But, you can never be sure how things would have been if he would not have suffered from the spasms. Epilepsy is often hereditary or can be caused by brain trauma. (For example an accident or lack of oxygen during labor.)In our case, it runs in the family. At that time I also considered putting my son on a keto diet. You can look into that option for your child, it can give good results. All the best, happy to answer your questions let me know, jo
@@jolandahulstein6658 thnx alot Jo for Ur answer. What treatment Ur son had
सर, हमारा बेटा डेढ़ साल का है. जब वह 6 महीने का था तब से वह गर्दन आगे की तरफ झटकाता है हमने लोकल मेँ जितने भी डॉक्टर को दिखाया उन्होंने कहा जुखाम है सही होने पर ठीक हो जायेगा पर उसका गर्दन झटकाना दिनों दिन बढ़ता ही गया ग्वालियर दिखाने पर उसे डॉक्टर ने दीमाग की T V का अंदेशा बताया पर कुछ नहीं निकला पर MRI रिपोर्ट मेँ दिमाग़ मेँ इंफेक्शन ओर सूजन जरूर बताई अब उसका ईलाज दिल्ही सर गंगाराम हॉस्पिटल मेँ चल रहा है दवाईया लेने के बाबजूद भी उसे अब भी दिन मेँ 6 से 7 वार झटके आते है ओर हर झटके मे गर्दन कम से कम 10-12 बार रुक रुक कर आगे की तरफ झटकाता है. हालांकि बीच मे 5-6 महीने शरुआत मे दवाईया लेने पर उसे झटके आना बंद हो गए थे पर सितम्बर माह से फिर से शुरू हो गए पर अब वह हाथ पैर एथ लेता है बेहोश जैसी हालत हो जाती है. अभी ठीक है पर गर्दन झटकाने वाला झटका अब भी जारी है हम बहुत परेशान है उसका बयां पैर भी दाये पैर की मुकाबले थोड़ा पतला है सामान्य बच्चों से वह थोड़ा समझ मे भी पीछे है बोलता भी नहीं है मन हो तो पापा पापा या मा मा मा आदि शब्द रिपीट करता रहता है डॉक्टर की रिपोर्ट आपको भेज रहे है हर महीने हम दिल्ली जाते है दिन मे हम उसे दस बार दवाई देते है 5 बार सुबह फिर वही दवाई शाम को. आपसे विनती है अगर आप ऐसी कोई दवाई बता सके जो हमारी दवाईओ के साथ हम बीच मे दे सके तो आपकी बड़ी मेहरबानी होंगी. हम बहुत परेशान hai..... मोबाइल 9977124213
Hello amy i have two children suffering from infantile spasms but i live in Pakistan Child 1 male age 2 years 5 months with global Developmental delay and no vision (can't see) He was finally treated with steroid after 1 years of spasm as many conventional anti epileptics were tried before that. Child 2 daughter 1 year 1 month old started to IS at 6 months but we started her on steroid but she also lost her vision / IS stopped but she can't apply force on her feet will some developmental delay
How are ur children now? From Pakistan fsd.
@@soniaali5547 permanently disabled bed ridden cannot sit both, boy age 4years 6months, girl 3 years 1month I hope u dont have such problem.
My czn has an adhd baby. THSTS WHY I AM HERE FOR SEARCHING THIS. He is very agressive. May ALLAH GIVE UR CHILDREN A HEALTHY LIFE. MY SISTER IS A SPECIAL EDUCATION TEACHER. N SHE TECHES BLIND CHILDREN.
Thank you Amy for such an informative video. I have never heard of this condition before, but you explain it very well for everyone. Good luck to you and your family. x
Could some of these cases be caused by vaccinations
Summer Day no🙃
Summer Day it just develops unfortunately but rarely,
Mutation