Anyone out there have kids/babies with Infantile Spasms??

Anthony - posted on 04/16/2013

Sounds familiar. It was bad when they were out of control, with tweaking the drugs control keeping bub happy and normal (even with the od almost indiscernible spasm), the only problem with us is our little fella has to come off the Vigabatrin (Sabril) soon, as he is getting close to 6 months on it, and it seems to work in conjunction with Topirimate, and Nitrazepam. The Ketogenic diet is the next option, then we have Epilum.

Anthony - posted on 04/12/2013

It's a Dad crashing the forum here! My little fella has Infantile Spasms which his Mum diagnosed at 4.5months (she's a doctor turned Mum), although it took some convincing the 'experts' to do an EEG, anyway the EEG confirmed it, since then we have been various drugs, in order; ACTH, Prednisone, Sabril (Vigabatron), Topirimate and Nitrazipan, he is currently on: Nitrazipan (0.5mg), Topirimate (55mg), Sabril (500mg): about to go onto the Ketogenic diet, he is now 9 months. The IS really set him back developmentally, although when he isn't fitting he is very pleasant and enthusiastic! This probably has something to do with his other Syndrome!

We find we generally put him on the drugs the spasms decrease or become relatively controlled then if we don't continually increase after some time the Spasms become worse and eventually out of control (he screams uncontrollably for 3-4 hour stretches generally in the evening). It is tough dealing with the Doctors, you get the feeling they often don't understand or really want to put the work in to research, and you have to push them along to find new solutions.

It is good to see the different drugs people are on, my little fella is in Australia, there are drugs in the US that don't seem to be on the market here in Australia. I would like to see how we can go about getting them here through our Neuro team. Hopefully the Ketogenic diet has some effect. The son has a palliative heart condition also, so we need to take this into account when treating him.

I would like to know what sorts of max doses ppl are on?? There are so many different treatment options!

We have had an MRI scan done which identified the area affected, I leave my wife to all the fancy medical terminology, apologies I will update this bit of info, although the seizures are refractory also!

Daniele - posted on 10/21/2012

Im so glad i read this! My daughter is almost 3 weeks old,

We have been to a Pediatric Neurologist, pediatrician who sent us down to a childrens hospital in pittsburgh PA to which they told me my daughter was just a drama queen when she was startled.

How long did everyone doctors take to diagnose this??

Renata - posted on 10/18/2012

Now another thing!

I am sooo broody and am thinking about another baby! My husband is scared that we might not then be able to give Taitum all the attention she needs when there is a new baby! I am thinking long term, I want her to have a sister or brother to phone and to talk to one day when she is older!



But we are also scared - I have read a lot of stories where parents have x2 special needs kids...that must be so difficult!



It's difficult! I have even prayed for a sign :-)



:Renata

Renata - posted on 10/18/2012

Hallo Kelly!

Ooh those Tonic-clonic seizures are so scary! Taitum had one of them when she was about 2 and a half and it lasted for about 17 minutes - we wanted to rush to the hospital - I had such a fright - luckily that was the only "bad fit" she had.



Last time i posted we were gonna try the ketogenic diet - well, it didnt work for Taitum at all (3 years and 6 months old now). All that oil and cream and more oil we had to give her to eat - luckily she was only on it for about 6 months and was still having a seizure every night - luckily no bad seizures - just the legs going up and she will make a noise like "huh, huh, huh" with every "shake".

Now she is also off of SABRIL and just on epilim and Keppra, but going to ask the pead nurologist to take her off Keppra as I have a feeling she will be fine just on Epilim.

Now she is having a seizure every second night - all off her seizures only happens at night - or rather early mornings like 4am. They last about 7 minutes and then she is very tired after that.



GOOD NEWS - Taitum started crawling like 3 months ago!!!!!! She is doing so well with all of her therapies, she does hydrokinetics (swimming for the low muscle tone child - and its her favourite therapy as it is in a warm pool) and she does speech, occupational and physio therapy every single week! It pays off!

She only started sitting beautifuly when she turned 3, also started sitting on her knees, she started going from the laying position to the sitting position all by herself when she was 3 years and 1 month!



She is progressing so beautifully! We are sooo proud of our little girl! She just smiles the whole time and is still loves to cuddle her mommy! Such a busy body sometimes - love to call her that - at last!

All of her therapists are so proud of her and her neurologist said that we must keep on with all her therapies as we are dealing with a developmental brain until the age of 6 and the more we do NOW - the more response we will see!

She doesnt say any words yet - just making LOTS of noises. Cant wait to hear "mommy" for the first time!



So yes, there is HOPE! Every small thing she does that is new to us is such a big milestone! We are blessed to have her - we have learned so much from her!



Is your little one still having seizures?



See Taitum’s Progress notes from her therapists (Speech Therapist)

"Taitum has made good progress, since she commenced Speech therapy in November 2011. Her drooling has significantly reduced, and her overall oral muscle tone is improving, and as a result she is babbling more, and making various sounds.

Taitum is becoming more aware of her surroundings, and is starting to reach for her favorite toys, and to move towards things which she desires.

We still have a long road ahead with Taitum, but every session there seems to be an improvement, and that something new is developing."



Taitum is also using a happy strap (for low muscle tone children) to assist the control of ligament laxity and joint flexability in the hips. As she is always sitting with her legs far apart - and this helps to keep her legs closer and to help the hips in the long run!



Please keep me updated and yes, there is hope!

Happy mommy,

Renata

Joanie - posted on 10/17/2012

my daughter is 19days old and she as been having this jumping ike things happen when she is in a deep sleep is that how your baby started or do u think my daughter may be happening because she is dreming she has only had this happen twice

Renata - posted on 09/07/2011

At one year & 8 months old Taitum was diagnosed with infantile spasms, and the cause of these spasms (seizures) is her 2Q chromosome deletion...that is why she is having these seizures.

At 4 months old she had her first seizure and we didnt know what it was, we rushed to hospital and Taitum was dianosed with Enchephalitis, and later to find out that she was actually mis-diagnosed and it was actually meningitis.!! She has got extremely low muscle tone and we started physio therapy at 5 months old.



It is really difficult to treat Taitum’s infantile spasms because we have tried so many different medications already and none have worked 100% for our little girl.



She is on Epilim, Keppra and Sabril (vigabatrin) daily. Sabril affects the peripheral vision which can be lost permanently and, I have started having nights where I would lie down and worry about my child being on Sabril (vigabatrin) and that is actually bad for her vision, and on top of it all she is squinting more! One morning I woke up and phoned Taitum’s paediatric neurologist and asked if we can wean her off because I’m sooo worried. She said that she is prepared to take this step with us and she totally understands us being scared of Sabril (Vigabatrin).



Now we are currently on only a half a tablet in the mornings and a full one at night. The only thing is that Taitum is having more seizures now than she used to – so, it’s extremely difficult as a parent to decide on brain damage or my child’s side vision to be permanently lost. I want her off of sabril (vigabatrin) so I even spoke to my dr about brain surgery for Taitum, unfortunately that is not an option for our little Noenie. Unfortunately the Drs won’t be able to disconnect a piece or remove a piece of her brain cause the brainwaves that cause the spasms covers the entire brain. So brain surgery is out of the question. Our last resort will be the Ketogenic Diet, the internet says a lot of good and positive things about the Ketogenic diet that helps to stop seizures.



We went to see a dietician Dr Tushka Du Toit in Pretoria about this diet and she started on this diet 6 weeks ago...it’s a low in carb’s and sugar & is a very high in fat. Since this is not a normal diet it is important for the dietician to monitor Taitum’s weight & height on a monthly basis, i.e. growth monitoring.

The Ketogenic diet represents a promising, alternative therapeutic approach to improve seizure control. This diet also is very time consuming and expensive



You can’t even feel sorry for her by giving her something that she is not allowed to have because she can go into “status” that means she will have a seizure that won’t stop and it means ICU!

So we must be very careful of little kids that could give her something sweet....because she can have a nonstop fit!



How does the Ketogenic diet work?

• Normally our bodies, especially the brain run on energy from glucose / sugar which we get from food (carbohydrates)

• If we don’t eat, we have a glucose supply for only 24 hours.

• When the glucose store is used up, the body starts to burn fat for an energy source

• When fat is broken down, ketones are produced

• The brain can use the ketones for energy, instead of using glucose.

• Ketones can have an anti-seizure effect in the brain

• The Ketogenic diet thus forced the body to burn fat by keeping the calories low and making fat the primary energy source in order to produce ketones (almost like making a petrol engine a diesel engine)



This diet takes away Taitum’s sugar, in other words, it takes away her energy or her “petrol”. The body burns the fat and that forms kitones and then the brain uses the kitones instead of glucose and that can have an anti-seizure effect.

This Ketogenic diet changes her whole metabolism.



Sometimes it can even take up to 2hrs to prepare her meals for the next day. Extremely time consuming..



Mediations we have tried:

• Phenobarb – 3 months old

• Epilim – 5 months old

• Prednisone steroids – 2 years old

• Sabril (Vigabatrin) – 2 years old

• Keppra – 2 years old



She is globally delayed, she can sit for a few minutes, can roll over and roll where she wants to be, and she makes baby sounds.

She is the most friendliest, cuddliest baby in the world! Her smile just lights up my world!

Its frustrating sometimes and difficult at kiddies parties to see other kids her age running around, etc...its really very difficult! My family and Sheldon's family are very supportive, they are BIG pillars that we can lean on.



We are getting Taitum's walker at the end of the month. I cant wait!! She has got a standing frame to stand in.

We are really trying everything we can for our little noenie!



Go look at her website!

www.taitumswihlist.co.za

Sarah - posted on 08/28/2011

Kelly,
My Lily was diagnosed at 5.5 months. She was having multiple clusters everyday....increasing, one , the next day two, then three. We were lucky to get an appt. with the neurology clinic at Children's Hospital here in Seattle at that point. When I called to make an appt, I was told the first available was in two weeks. I thought that was crazy, asked if they did not hear me, my five month old was having more everyday. I was put on a wait list in case someone caneled.. I was in tears and very upset at that point, I knew something was very wrong. Luckily they called back a half hour later and offered me an appt for 10am that morning, I said I would be right there. We had taped her episode from the night before. Her's were atypical she threw her head back with a clenching of the eyes closed and sometimes throwing her hands out to...and she would repeat this over and over for around 7 min. So incredibly scary to watch. We caught it very early, but she has still lost ground. We were hospitalized after that day's EEG was positive for hyppsarythmia to assure a quick MRI. Unfortunatly they did find a cause, she has lissencephaly/pachygyria. They give one so little cause for hope. We were put on prednislone and zonisamide. We are in the last week of weaning her off the pred. So far the spasms are gone and we will start therapy with a birth to three program soon. The doctors have told us with her brain malformation, there is no chance at all she will be "normal" she will certainly have some degree of dissability. Our only hope is to keep her seizure free and with therapy to mitigate the dissability as much as we may. They have said they do not know what her ceiling is, only time can tell. I have never been so sad and depressed in my life. To look at her, she is perfect. People are always comenting on how pretty she is and I wonder if they would say so if they knew. The steroid did really make her crabby in the beginning, and sleepless, it was hard. It took several weeks, but having her spasms stop was worth everything. She remains quite "twitchy" more than is normal, but she is also very happy and easy going now...maybe too much so? I love her so, it is terrible when all we can do, all the best doctors can do is so pitifully inadequate. On most days I do have hope, how can we look into their sweet little faces and not? Best of wishes and good luck, thanks to all with the positive posts that things might not be as impossible as they at times seem.

Deepti - posted on 06/17/2011

Hi my son was diagnosed with west syndrome (infantile spasms) at 5.5 months age. he had seizures for 2 months and was on ACTH for 30 days but it didnt work. then he was given topamax and pyridoxine it just reduced his seizures but didnt stop. Then finally he was given Sabril 500 mg twice a day. His seizures stopped after 5 days completely, but he i still developmentally delayed. He is 8 month old but behaviourally developed as of a 4-5 month old. I just hope and wish he catches up soon and develops normally.

Julie - posted on 05/20/2011

We had a simular experience with my grandson. He was 4 months when he started having seizures. They put him on steroids, he got really fat and was so cranky. However after he was weined off of them he started smiling. He is now 14 months old and is on topomax and two other drugs (phenobarb was the worst) not sure of the names he does not live with me. He just started sitting up by himself and he is really progressing great. Just had a pet scan yesterday and MRI. Will get results monday. Good luck to you it is a long road but today RYder is sooooo happy and laughs all the time. He hardly ever cries he just smiles. This has been a good few months. We are blessed to have UCLA's neurology team working with Ryder Julie

Good luck to you and your family

Elizabeth - posted on 08/06/2009

Good luck with all. We did have to get a second neurologist before our guy was diagnosed correctly. He takes Trileptal. Even in our fair sized town we had to travel to find a new neurologist. I guess it is a global problem.

Kelly - posted on 08/06/2009

My wee girl Honor hes tried Phenobarb, Vigabatrin, Nitrazepam, Prednisolone, B12 ( pyridoxine & Topirimate. Phenobarb worked for a bit & she started developing then it stopped working, no others worked except Topirimate now that stopped. We are starting on Epilim tomorrow & Im praying for a miracle as Drs said we have tryed top few meds that are most likely to work nut havent. We are from a small town in New Zealand & are finding our Neurologists not very helpful at all. Honor doesnt smile, sit or reach for toys etc, she is perfect to look at with good heaad control & rolls everywhere, very strong baby. Im holding onto hope even though its very hard at times!

Elizabeth - posted on 08/06/2009

My son started having spasms about 6 weeks and was finally diagnosed with Complex Partial Seizures (Only one side of his brain is affected) at almost 3 years old. The first medication he was put on still works wonderfully. It might be something to consider.

Georgianna - posted on 08/06/2009

Yes his MRI showed a malformation on the left side of his brain (focal cortical dysplasia which is what caused his IS. The drs were certain that the seizures would return and he would need his left hemisphere removed in order for him to have some chance to develop as IS are so damaging. But we were beyond blessed in that the seizures never returned. Stay hopeful always. We know that our little guy will never be in the clear as he has a cortex malformation that can trigger seizures at anytime but it's been 4.5 years since the last one and he is doing amazing!!! All we can do is have faith and believe that it will continue this way. Best of luck to your little princess. Keep me posted. BTW where do you live again? Who is your neurologist? We live in L.A. and our neuro is the chief of pediatric neuroly at UCLA. AMAZING!!! Have you had other opinions? May be worth looking into.

Kelly - posted on 08/06/2009

Hi Georgianna,

Thanks for your post. Sounds like your wee man is doing great, thats awesome. Did you see his MRI scan?? Our wee girls MRI showed the left side of her brain in asymetrical but they are unsure if this is just her (as we are all different) or if this is whats causing spasms. Have just had another EEG, it showd the same as the last one (lots of electrical discharges but no cause). We are now waiting 6months to have another MRI when shes 18months as thats when the brain peaks growth or something along those lines.

Georgianna - posted on 08/03/2009

How is your baby girl doing?? My son Brandon was diagnosed at 6 weeks old with Infantile Spasms and after MRI, EEG, video telemetry, pet scan etc it was discovered he had focal cortical dysplasia on the left side of his brain (brain malformation)...It effects the right side of his body. Although he was a candidate for surgery as the malformation was only in one hemisphere his seizures stopped with ACTH and he never needed the surgery. he was able to develop albeit always delayed but he is doing amazing!!! He had partial complex seizures 2.5 years later and with Zonegran (which he is still on to date) they were fully controlled. he is almost 7 (8/21) and has been seizure free since April 18, 2005. Our little miracle!! He is starting 1st grade with a shadow and he is a happy and healthy and smart little boy. He walks a little funny on his right and his right hand is a bit atrophied (he is by force left handed) and he is behind developmentally (more like 5 years old) but we'll take it!!! he is doing great and we are so thankful!!! He is an amazing little kid with endless motivation and tremendous persevearance!!! I hope your little girl is progressing and developing well. There is always hope!!!!

Kelly - posted on 06/05/2009

Thanks guys for your replies. Holly is your wee girl having infantile spasms again or have they changed to other kinds for eg tonic-clonic seizures?? Whats her development like now? is she developing at her age level? My daughter Honor is slowly starting to deelop, she is 9months with development age of a 5month baby, just cant wait for her to sit, will open up a whole different world for both her & I. We a from a small towm in New Zealand.

Holly - posted on 06/04/2009

Hi Kelly,

I have a 5 year old daughter who was diagnosed with infantile spasms when she was 6 months of age. They had her on phenobarbital, keppra and clonazepam. We were taking her to Blank Children's hosptial in Des Moines, IA and all they wanted to do was continue to increase her meds and see her back in a few months. After one year of her not progressing at all with motor skills, I decided to take her the Mayo Clinic in Rochester MN. They did so many tests on her, It was very tough to see her go through all of that. What I liked about it all they did a video EEG for 24 hours. After that they gave us the diagnosis of Lennox-Gastaut Syndrome as well. With a round of ACTH and taking her off pheno and keppra, they added Lamictal (which is awesome for infantile spasms) she went from having over 200 seizures daily to just a few in 3 months and was completely seizure free for almost 2 years before she began to have them again.

Stephanie - posted on 05/27/2009

Hello Kelly,

My daughter was diagnosed with Infantile Spasms at six months of age. After the diagnosis the doctor put her on ACTH (a steroid daily injection in her thigh). After one month the medication stopped the spasms. We weaned off of the medication and then a month to the date, the tonic-clonic seizures started. The seizures started as pretty mild but after time, the worsened. Madigan (our daughter) went through multiple EEG, CAT scans, PET scans, MRI's and medications over the next three years. With the testing, we were informed that Madigan had cortigal dysplasia on the left hemisphere, a partial agenisis of the corpus collosum, and a cyst on the right frontal lobe. It was determined that the seizures were coming from the left hemisphere. So in that case we are different. Madigan underwent a left hemispherectomy in October 2007. She has been seizure free and doing great since her surgery. She does have diminished muscle tone, but through extensive therapy she is getting better tone (right side will always be weaker)