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Sunna Valdís Sigurðardottir

sunna1Sunna Valdis was born after a normal pregnancy on 9th of February 2006.
She weighed 3750 gr and was 52 cm.
She was very quiet and slept very well.

At 3 months we noticed some abnormal changes in Sunna. There were very characteristic eye movements from time to time.

We took Sunna to an eye specialist in June 2006 and her sight came out normal. Nothing unusual exept the eye jerks. “She would problably outgrow this”

sunna2In July 2006, just before bedtime I saw a total different behavior in Sunna and it scared me.
She went absent, so much it was like “she was not at home” (as we call it).
Sunna just looked right through me.
After 20 minutes she was still in that same state. Her breathing was shallow.
We had already called a doctor and when he got home, Sunna was asleep.

The doctor did not know what it was but recommended that if Sunna was in the same state when she did wake up, we would go to the Children’s Hospital.

sunna3Sunna slept for 15 minutes. When she woke up, she was just fine. Like nothing happened.

A month later, the 7th of August 2006 at 6 months, the same thing happened again, at the same time, just before bedtime.
She went blank, she was awake but “was not at home”.

Sunna went under EEG’s , MRI and blood was drawn for examination.
Nothing abnormal was found.

Sunna was put on Phenemal (2 x15mg pr. Day). Doctors thought she was epiliptic although EEG was normal.

Everything seemed “normal” but her eye deviations continued.
We noticed special face caracteristics in Sunna like droopy mouth/jawline and part of her tongue was often outside the mouth.

No episodes from August until December 2006.
We did not see any dramatic changes in Sunna after starting taking Phenemal.
When she got tired she got “really” tired and was more annoyed during the evenings after taking Phenemal for some time.

sunna4A week before Christmas 2006 (at 10 months)
She got many episodes. These were different from the other two she had in July and August.

She all of a sudden became very absent. She sat on the floor and she started looking to her right. It was like she was seeing something that interested her and she just kept on looking to the right. She turned in circles!!! Her eyes kept looking to the right and she was very irratated (crying etc.) We saw that the right side of the body went limp, it was flaccid. She had an hemiplegic episode.

We tried to speek to her but she did not comprehend. Her awareness was zero.
This went on for 45 minutes then she fell asleep.
When Sunna woke up after maybe 1 hour she could not move the right side of her body. It was still limp. She could not stand or use her right hand.
After few days her paralysis went away gradually.

2007

 

On the 8th of January 2007 (Sunna 11mo) we had to go to the Children’s Hospital because of high fever. Sunna had been sick for 2 days and she was not getting any better.
We went home that same evening after checkup.

sunna5On 18th of January Sunna had repeated episodes, she had hemiplegic ones and she had paralysis again on the right side of her body. She was admitted to the Children’s Hospital.

She was given Ativan but that did not calm her down. She was very agitated and cried a lot. We walked around with her for hours.
Her Phenemal dosage was increased at that point.
Sunna started in physical therapy once a week at the Childrens Hospital.

It always amazed us how she regained her strength but on the other hand after her episodes she always took some steps back in development. Like she was always the same, no progress in motor development.

Her speech impairment became more obvious.

The weeks went on and Sunna continued to get hemiplegic episodes.

Her paralysis shifted from right to left, it did not seem to matter which one was effected it was just as bad. She got back to normal after 2 days to almost 14 days.

Sunna was still on Phenemal and her dosage was increased slowly with no progress, nothing changed. We were always in our same footsteps. Nothing seemed to work for Sunna.

Sunna was put on Keppra in February 2007 (12 mo).

We had Stesolid at home to give her rectally, it worked sometimes. She calmed down a bit.

She had episodes in February and they were on the left side. She was still paralyzed from 2-5 days at a time.

In March, it was the same (13 mo) we continued to try to stop the episodes with Stesolid.

We noticed that hemiplegic episodes came frequently after Sunna’s baths in the evenings.

Also that we noticed was she got more eye deviations just before her episodes, also she sometimes yawned like she was tired and her hands started to shake a bit. This was very frequent.

We tried to put Sunna to sleep each time as soon as she had an episode.

That seemed to help her a lot.

At that point Sunna was not responding to her medications so we started to think “outside of the box” and looking in other directions.

This must be something else than epilepsy.

sunna6In April (14 mo) we travelled to Copenhagen, Denmark for easter holiday.
It was supposed to be a week of fun for us with friends. A good break from all this. We stayed in a big and nice flat that we had rented for a week.

The day after we arrived we were in a beautiful garden by a castle, Sunna had an episode. She was in her buggy but she fell asleep soon afterwards.
It was sunny and warm.

We rushed back to our flat and when Sunna woke up she had another episode. We gave her Stesolid 5mg. We went to a hospital in Frederiksberg where she had 4 episodes and the doctors there sent us to Hvidovre Hospital in an ambulance.

sunna7The day after Sunna was completely paralyzed on the left side of the body.
We went back to our flat the next day and thought it was over.

That same evening Sunna had another episode, this time it was on the right side.
Note that she was paralysed on the left side!! That had never happened before.

We were terrified.

We gave her Stesolid and let Hvidovre Hospital know of Sunna’s condition.
Short time after that Sunna stopped breathing for problably 50-60 sec.
She started breathing again but it was very shallow. We called an ambulance and we were rushed to the hospital.
Sunna had another episode right in front of a doctor who were on call and he did not recognise this kind of epilepsy episode/attack. Had never seen this before. Sunna got another 5mg of Stesolid rectally. She fell asleep after 5 hours of walking the halls of Hvidovre Childrens ward.

sunna8We got an hold of Sunna’s neurologist who was on a vacation in Florida and she told us to increase Sunna’s Keppra dosage to 375 mg 2 x pr day and stick to her Phenemal dosage 90 mg pr day.
Sunna was feeling terrible, wanted to be on a constant move, walking around in our arms and cried alot. A doctor at Hvidovre gave us Frisium to take with us home to use in emergency.

We planned the trip back to Iceland with a doctor on the plane with us. (SOS International).
Back at the flat on Thursday Sunna was completely paralysed from head to toe. (Quadriplegia). She could not move a limb. She also had difficulties swallowing. We had to give her the drugs with Joghurt or baby food. It was just terrible.

sunna9On Saturday Sunna was starting to stand up to tables and crawling again. Unbelievable. Her left side was weaker than the right.

Once we got back home to Iceland Sunna was episode free for 10 days.

Sunna was now 14 mo.

Until then she was still recuperating from her bad series of episode in Chopenhagen.

Sunna started like usual, we noticed the shakes in her hands, fluctuating eyes and she was looking to her left this time.

sunna10We went to see Sunna’s neurologist at the hospital.

That evening Sunna got an episode when she was in EEG. That did it. No epileptic ……virkni….. was noticable. Sunna’s neurologist had been studying Alternating Hemiplegia of Childhood.

That seemed to be the disease that related the most to Sunna’s condition. Sunna was put on Sibelium.

We were glad that this might be the end of the dark tunnel….. But it wasn’t. This was just another beginning.

A few days later Sunna got one episode that lasted a short while. We started to wean Sunna off Keppra.

sunna11Sunna finally got a break from her episodes. It was a long time (well at least we thought so), 35 days. This was just a miracle. Sibelium was working!!!!

We were also weening Sunna off Keepra very slowly. Sunna started to walk during her break of episodes. Everything was going great. It was so good to see Sunna happy and at peace.

On the 26th of May 2007 (15 mo.) Sunna started to have episodes again.

We had just started taking Sunna to children’s playing/exercises classes on Saturday mornings. It had been worrying us for some time that this may be too much for her.

We just let her play at her own pace, not push her into doing something she did not want to do. When we got home she got an hemiplegic episode, 3 big ones. This time it was her left side. We increased Sibelium.

Sunna was off Keepra all together!!! On June 2nd she got another set of episodes, 3 big ones aswell and it was her left side again. We deceided to give Sunna Sibelium in the mornings instead of evenings like we had been doing.

On the 12th of June Sunna got an episode. She had just woken up after her nap when this happened. It was her left side and she got paralysed too. It was very difficult to get her back to sleep, took us 3 hours.

sunna12On 23 rd. Of June (16 mo.) Sunna got 3-4 episodes and it was her left side that was affected again. She was totally paralysed on her left side, not only her hand, leg as well.

Sibelium was increased to 1 capsule a day. 5mg.

Next day she was fine. Started to walk right after she woke up…..

In July 2007 (17 mo.) Sunna got 2 small hemiplegic episodes, with 2 weeks apart.

She did not get paralysed either time.

On the 10th of August 2007 (18 mo.) it was like she was starting to get an episode but nothing happened. It was like it just dissapeared.

This was the beginning of those “maybe/almost” episodes which have been happening ever since that day.

sunna13On the 19 th of August Sunna had a fever and a cold and she almost had an episode but it stopped.

On the 21 st. Of August Sunna got many painful episodes. She was still sick with a bad cold and had a fever. She got her hemiplegic ones to her right side.

She was paralysed during her episodes. We got her to sleep and they stopped.

When she woke up she did not have any paralysis… but she was very aggitated two days afterwards.

On the 28 th of August Sunna got many short episodes on her left side this time.

We thought this would never end for her. She was just exhausted after this and she fell asleep an hour later.

NOTE; HER EPISODES ALWAYS STARTED DURING THE EARLY EVENING. FROM 18.00 TILL 20.00.

In September (19 mo.) Sunna only got her “maybe/almost” days. Two times that month it was like she was almost having an episode but nothing happened.

On both occations she started to shake a little bit, her eyemovements were just off the charts.

We were pleased that Sunna did not have any episodes and we felt like Sunna had gotten some control over her episodes.

Sunna had a cold (yes again!!!!) and fever on both occations.

sunna15In October 2007 (20 mo) we had a hectic month.

On the 2nd Sunna started to have rapid eye movements with her “shakes”. Sunna was at that time with her grandmother, Bibi, and me and Siggi were in Paris, so this was extremely difficult not to be able to help my mother in law with Sunna.

From Bibi’s point of view she thought Sunna did not get into a full blown episode. She felt Sunna was turning a little bit to the right but could not be sure. Sunna went under MRI on the 3rd, that showed nothing abnormal.

On the 8th Sunna got a small episode. This time it was to her left. She had major eye movements.

This time Sunna had recently taken a bath and she was very tired and it was soon bedtime. Her left hand was paralysed.

On the 15th Sunna had a small episode. She was very tired when it started and it was her left side again. Sunna did not use her left hand at all.

She fell asleep soon.

On the 23rd. Sunna had rapid eye movements. She had been playing and she did not have any control of her body, she fell down repediately. Very dizzy and she was so aggitated. BUT no episode this time. We managed to calm her down.

sunna16In November 2007 (21 mo) Sunna had three “almost/maybe” episode days.

On the 2nd she got her “shakes” in her hands and legs. She had rapid eye movements. BUT no episode!! She had recently taken a bath.

On the 17th at 13:00 Sunna was recently out of her bath. She was tired, did not sleep very well the night before (she had a cold and a cough for 4 days)

She suddenly started to fall down, did not have any control over her body.

Sunna got her “shakes” and had rapid eye movements. BUT no episode.

She fell asleep after her bottle and slept for 2 hours. After her nap Sunna was just fine.

On the 22nd Sunna got her “shakes” in her hands and had some rapid eye movements. She was very tired. BUT no episode.

On the 29th we started Sunna on Topamax. We will start very slowly ½ + ½ capsule pr day. (15 mg a day)

This will maybe help Sunna to cut down her episodes. I was VERY worried putting Sunna on Topamax, I had big concerns about it’s side effects, wich are numerous. We will monitor Sunna closely.

On the 31st we cut down Topamax to ½ + 0 capsule pr. day (7.5 mg a day).

This was due to very bad reactions to Topamax. Sunna was very aggitated, cried all day long and was just feeling terrible.

sunna17Sunna started her weekly therapy this month at The State Diagnostic and Counseling Center.

The State Diagnostic and Counseling Center is the main evaluation and habilitation center in Iceland for children and adolescents with various types of developmental disabilities.

The main objective of The State Diagnostic and Counseling Center is evaluation of children and adolescents with various types of developmental disabilities, both congenital and acquired, and subsequent counseling to parents and caregivers, teachers and therapists at other institutions.

We started to learn Sign language and are in the process of teaching Sunna some signs.

December 2007 (22 mo)

On the 13th after a bath!! Sunna got many bad episodes. They came in periods. Sunna was just “out” could not close her mouth and her eyes were all over the place. She could not use her pacifier. She fell asleep after 30 minutes.

sunna18On the 28th Sunna got her “almost/maybe” an episode days. She got her “shakes” in her hands and had rapid eye movements. BUT no episode.

2008

In January 2008 (23 mo) Sunna had two “almost/maybe” episode days;

On the 3rd Sunna started turning to her left. Slight shakes in her and very rapid eye movements.

BUT no episodes.

On the 22nd Sunna had some “shakes”. Nothing else and NO episodes.

In February 2008 (24 mo) Sunna had her birthday. Very happy that everything went well that day!!!

sunna19On the 25th Sunna had an episode after dinner. She started to shake but not a lot of eye movements. She had problably 2-3 small episodes. I put her one time on the floor and Sunna went two circles to her left. She could have gone on longer but I stopped her. It was very difficult to get her to sleep. She was out after an hour.

March (25 mo) was a good month.

Until; The 30th Sunna got two episodes on her left side.

On the 31st Sunna got problably around 15 episodes from 18:30 till 23:30.

We tried everything to get her to sleep. We even went for a drive…..

It was to her left again.

The first day of April 2008 (26 mo) was very strange. Sunna woke up around 07:30 and seemed to be just fine. But at 09:00 she got two episodes and we were just shocked. It was very unususal that she would get an episode in the morning. We immediately saw that we were heading to anothe big one!! We called the Children’s Hospital and let them know that we were coming.

sunna20Sunna got one episode in the car and she cried alot. We disscussed the possibility to use Ativan but that had not been successful for calming Sunna down before. But we tried it anyway. With BAD results. Sunna immediately cried constantly for 11 hours. Sunna got some sleep between 16:00 and 17:00, maybe 45 min.

Sunna slept for 10 hours straight with no interuptions.

April 2nd. Sunna woke up at 08:00 but after 25 min. She started to have episodes again.

Sunna started to have involuntary movements.

She could not control her limbs and her mouth movements were like a baby’s. Sunna had fluids (IV) all night, she had not been able to drink/eat for 24 hours, Sunna got episodes every 25 min. She fell asleep around 09:35.

Sunna basiclly slept all day on the 2nd. She sometimes woke up and had episodes in between with her eyes closed. We gave her Chloral Hydrate rectally around 17:00 and she continued to sleep but now she didn’t get any more episodes. She did not wake up at all after this.

sunna213rd of April. Sunna woke up after a very good night for us all three. She slept for 14 hours straight!!

The morning was a promising one. We were hopeful that she would feel better.

But after an hour Sunna had already had around 8 episodes.

We talked to Sunna’s neurologist and we discussed the possibility of another drugs that might help her.

Amantantine was put in. (2x 2.5 ml pr day)

Her involuntary movements were increasing.

She is not eating at all.

Sunna had a lot of episodes this morning. They were very tough on her, she cried a lot and was in great pain. She calmed down in between her episodes. We had to hold her and Sunna wanted to be on a constant move. So we took turns walking her around the room. Her episodes were coming every 5-8 min.

Sunna’s doctors talked about putting Sunna under general anesthesia if she would not get any better.

We deceided to give her Chloral Hydrate rectally and she was out after 5 min. Sunna slept for 3 hours but after 20 min she started getting episodes again. The day passed and Sunna was getting many episodes with a lot of pain. Sunna was paralysed in between but when she was in an episode she she was cramping heavily and she moved her limbs during them. Sunna got Chloral again around 17:30 and she did not wake up after that until the next morning.

sunna224th of April.

We were so dissapointed that after 20 min she woke up Sunna got her first episode for the day. Her episodes were not coming as rapidly but they were still there. We were still holding her all day because she seemed to feel better that way; on the move. Her episodes were lasting longer and she was in great pain.
Around 16:00 we saw that Sunna was not improving so we had got take her down to intensity care and let her get some good rest. We decided that she would be kept under general anesthesia for 3 days.

It was a terrible moment for us because then we realised that we could not do anything else to stop this all.

Her involuntary movements were so far from being normal, they were horrible. She cold not hold her head. Around 1900 Sunna was sleeping.

sunna235th of April.

Sunna was sleeping an things were normal, well as normal as things would be.

6th of April

Sunna was still sleeping.

7th of April

The plan was to wake her up slowly today.

We were so nervous!!!!!! Just can’t describe it. Her sleeping aid was decresed slowly. Nothing happened. She still slept tight.

Around 22:00 we went to get some sleep after a whole day of waiting. Nothing was happening, Sunna was still sleeping.

But after an hour and a half Sunna was starting to wake up and her involuntary movements were still there….. Very dissapointing.

Tuesday April 8th.

We got a phone call at 06:30, Sunna was awake and was moving around, opening her eyes.  Ragga had almost not slept at all so Siggi went to Sunna and told Ragga to get some sleep.  At 07:45 Siggi called Ragga and told her that Sunna had fallen asleep in his arms and that Ragga should not hurry to them.  When Ragga woke up she rushed to the intensive care and found Siggi and Sunna in the corridor walking around, Sunna still had very bad involuntary movements.  We would be able to take Sunna to the childrens hospital in an hour – good news:)

Wednesday April 9th.

Sunna woke up at 06:00, she was calm but suddenly she had an episode for 30 seconds, her involuntary movements were worse than the day before, we could hardly hold her in our arms.  Another episode at 09:00, she was crying alot and putting her hand to her head on the right side.  She slept for and hour between 10 and 11.  Bad episodes at 11:30 at least 3 and then another at 13:30.  She ate a little but then thew up.  Slept between 14 and 15:30.  We had invited Viktor to see us and  he arrived with his grandmother Bibi in the afternoon.  He did not like being at the hospital.  Sunna got another bad series of episodes at 17:45.  We gave her Chloral at 21:00 and she fell asleep soon in Siggi‘s  arms.

Earlier that day Siggi called an expert in the USA, he had made a cry for help on the internet and got the number for Mark Sweeney who was working on AHC in the University Hospital of Utah along with a group of good people like Dr. Katherine Swoboda who was heading the research team on AHC.

Dr. Sweeney had answered and offered his help, he gave Siggi the number for Dr. Swoboda.  He had heard about bad series of episodes like this but was not able to tell us how to stop it…..

Thursday April 10th.

At this time Sunna had not been eating and we have been feeding her with a tube for a long time, she is also on Glucose during the night and sometimes during the day.  She also had antibiotics in a drip.

Sunna woke up at 07.00, we felt she was becoming more herself, she was trying to smile and we got some eye contact.  This was good, very good.  Sunna slept on our shoulder that morning

April 19th we went home from the hospital but Sunna was far from being ok.  She had not had episodes for 3 days but was not walking again.

The next 3 weeks she was with a physical therapist every day.  After one week she was walking by herself.

That summer Sunna was free of episodes for 3 months and during this time we had a vacation in Tenerife, Spain and went to Chicago for a family meeting with the US AHC association.

For 2 more months we managed to avoid episodes in the making by calming her down and getting her to fall asleep.  All in all we had 5 months episode free.

We have had to take Sunna a few times to the hospital because she is getting alot of colds and caughs.  She has perhaps one good week and then cold and caughs again.  She is starting to dislike doctors, so she is learning;)

November 2008

Sunna was very sick this month, fever, sore throat and had some episodes.  She had to use her walker again because she could not walk by herself.  When she gets sick, fever etc.  she also stops to eat and that means that she does not get her medicin so she is more volnerable for episodes.

We were talking to Dr. Swoboda and Dr. Sweney for advice.  It is so good to be able to call the experts when times are critical.  Sunna was seeing her physical therapist in this month to get her strength back.

December 2008

Sunna is still having episodes and we are thinking about alternate measures Bowen-technique and other things.  We increased the Topimax.  We are starting to see Dystona in her right leg.  There were many sleepless nights in this month as in NovemberL.

We had a Merry Christmas with no episodes over the holidays.

2009

January 2009

2009 is off to a good start, Sunna is in preschool for 2-3 hours a day.  She is learning a few words but when she gets episodes the words get lost.

February

February 9th Sunna had her 3rd birthday.  After the birthday party she got sick, fever, caughs and a chest infection.  She is getting Dystona more frequently.  Sunna is starting to notice that she is not like all the other children and it gets to her sometimes.  Her mood is up and down. There were no episodes in this month.

March

We started the AHC association in Iceland and put up a website www.ahc.is . We hope Sunna will be the only patient in this association ever.  The reason we formed the association is to be a part of the networking in Europe and North-America.

March was episode freeJ

April

March 13th (Easterday) Sunna had episodes during a family dinner.  We had to sleep her off by giving her Chloral Hydrate which we are carrying with us now.  She had another episode on the 29th.

 

May

Sunna has a fever again, she only gets a week off but then she is sick again. Sunna got the operation on the 27th to remove her toncils and it was a success apart from a litle infection in her throat, penincilin once againJ

No episode this month eitherJ

June

 

2 months without an episode.  We have stopped taking  Sunna to birthday party‘s or going to the mall or anywhere where lpö- there is a crowd.  She wears sunglasses when she is outside and we bathe her only before noon.  This way we limit the chances of her getting episodes.

No episodes but some cases of Dystonia this month.

July

July 1st Sunna had 3 episodes and the next day she could not walk.  She got, chest infection and a  runny nose again this month but no more episodes. The weather was so good we spent a lot of time outside but then the Dystonia in her right foot was apparent once in a while after running and playing.

August

We went on a holiday to Copenhagen and met another AHC family.  Sunna had a very big episodes during the the holiday, completely paralyzed. We gave her Chloral and she slept for 12 hours. Sunna was fine the next day. Sunna´s grandfather died on the 10th, may god rest his soul.  Sunna had episodes the next day, we gave her Chloral.

 

September

Sunna had some chest infections and caughs in September.  On the 23rd she got some episodes that we stopped with Chloral.

October

Sunna had the swineflue in October, she also had Dystonia frequently but now she is having Dystonia in her right leg and also her left arm.  She had episodes when her father went away for a conference in Kos, Greece.  Timing is everything….

November

Sunna continues to have Dystonia and late in the month she is complaining about her legs, like she is tired.  She wants to be carried more than usually.

December

December was good for Sunna, she took part in the preschool play, went to a christmas ball and had no episodesJ

We are getting pretty good at seeing when Sunna is about to have an episode and then stop it before in hits her.  We calm her down and turn the house off, turn off all noise and block sunlight.  This way we are avoiding at least 50% of the episodes.

2010

January 2010

Sunna had an episode on the 10th but that was it for January.  She is always sick though.  From October until April she has a cold, coughs and fever every year.

February

This month started badly, Sunna was very sick for the first week, many sleepless nights.

Sunna turned 4 years old on February 9th.  The day after a very small birthday party, only very few relatives were invited, she had an episode, on the 11th.

March

Sunna is learning a few more words and is using the toilet to pee occationally.

NO episodes this month.

April

On the 23rd Sunna had an episode, at that time she had been episode free for 70 days.  This time she had Dystonia in her right leg and shortly after she got the episode.  Same thing happened on the 25th.

May

April was bad, many episodes and many Dystonias.  When she has bad periods like these we tend to think about her future, how will she be at 10, 15, 20 year old?  The future looks grim during these days.

June

Sunna is enjoying being outside in the nice summer weather but when she is outside she moves more and then she gets Dystonia more.  She is getting Dystonia almost every day. No episodes this month.

July

Very bad episode on the 10th.  It lasted for 70 minutes and there was alot of pain.  We learned that we are giving her too litle dosage of Chloral so we are giving her more next time.  On the 27th Sunna had another episode, we gave her 15ml of Chloral which was not enough. 

 

August

Sunna had an episode on the 5th and the 19th along with Dystonia attacks.  Otherwise the month was good and AHCAI got some media coveridge when we took part of Reykjavik Marathon with 27 runnners.

September

We went to a cottage for a week and Sunna did well, she liked being in the serenity of the country. She had an episode on the 6th and 25th.

We have been thinking about lowering her dosage of Topimax but she is on 45mg topimax and 15mg Sibelium now.  We have a feeling that it is playing a big role in her ability to form words.  Also we have been thinking about adding Magnesium to her diet.

October

Sunna had one bad episode on the 9th of October and 3 days after that she had a difficulty consentrating/focusing on what she was doing.

November

Sunna has been having hemiplegic episodes without the pain of full episodes.  She all of a sudden becomes flacid on one side of her body.  This happened 3 times this month.  We went for a nEUroped meeting in Brussels where we were expecting some good news about that project but is seems that the doctors that are involved with the project are delaying it and probably it will amount to nothing which is very sad.  A good opportunity lost.

December

Sunna had episodes on the 1st and the 29th.  Otherwise we had a good month. 

Siggi went to Paris on a meeting with Eurordis.  Eurordis is working on a website  http://www.rarediseasecommunities.org/en and they need a coordinator for an AHC community.  It is a really fantastic oportunity because it will hopefully unite the AHC community globally since it is translated in 5 languages.

2011

January 2011

Sunna was very sick this month chest infection, cold, fever and coughs.  She had a episode on the 27th.

February

Sunna got an episode on the 6th.  She turned 5 years old on the 9th.

We have started to reduce her Topimax by 50%.  We are seeing good results, she is calmer and more focused.  She is actually able to play by herself.  Now on 20mg of Topimax and 12.5 mg Sibelium.

March

In the beginning of this month Sunna got very sick, we had much difficulty getting her to take her medicine since she was not eating at all. Sunna got very a high fever for many days. She did drink only if we offered her and food did not go well with her. She was also vomiting one day and the next day she had diarreah.

We took her to the hospital but gave her Chloral before we went in the evening so as not to provoke an episode, she was very vulnarable. We just knew that something big was about to happen  She did not need any penincillin and there was nothing the doctors could do to help her, she had the flu.

Sunna started to have episodes on the 6th and got episodes for 11 days in a row.  The episodes finally stopped on the 17th.  Those days were really hectic.  We took one hour at a time. Sunna wanted to walk around a lot, stay in Siggi‘s arms and she was very aggitated, just felt misarable. She took her naps and that helped a lot but she was sooo vulnarable and so many times she was almost getting into an episode. Sunna did not handle anything, no noise, light or guests. We just pulled all the curtains down, not tv or radio. Just quiet.We were just in our little hospital at the house. Our son had to stay at his grandmother‘s house for these days. He came home from school and then in the afternoon he was picked up by his gran. We coped through those days barely. Eating dinner at ten pm after Sunna was asleep. She got many episodes a day, usually in the afternoon. We gave her Chloral every day when the episodes started.

We believe that this helped Sunna through this rough days of episodes. If we had stayed in the hospital Sunna had been put under general anesthesia and Sunna would have been much worse the days after each nights of episodes.

We had to increase her Topimax again, she is now on 30mg.

This is the second time Sunna had a row of episode days like this…

Sigurdur Johannesson

Ragnheidur Hjaltadottir