Dear moyamoya family,

we are the parents of a 3 years old baby girl who is diagnosed with moyamoya disease. We come from Poland where the incidence of moyamoya is extremley rare. Our daughter Hanna experienced two ischemic apoplectic strokes within a period of a month (on 12/2008). When we lost hope for operation in Poland due to the fact that doctor refused to help us we had an appointment with prof. Trojanowski (from Poland) and the surgery was conducted on 05/05/2009. We could not belive that after so many months of fighting for our daughter's life, the surgery would be finally performed in Poland. As of today, 7 months after Hania's surgery, our daughter feels much better but unfortunately Hania still suffers from very strong body spastic. She doesn't speak or move. She can't sleep at night (shy cries a lot). We know the consequences of two strokes can be sever for her, but we hope that youn children come back to their shape very fast. We do everything to help her become independent. We are wondering if you could help us and give us some professional advice and assessment of Hanna's rehabilitations that is taking place here in Poland. Perhaps you could give us some pointers how we should rehabilitate Hanna and what cures you gave your children? We would be grateful for your help in this case  :)

Hanna's parents

   Hello, this is a great place for information..... I'm so glad you were able to get the surgeries for your daughter. My daughter had several strokes when she was 5 yrs old.She had surgery and has not had another strokes in the past 7 yrs. She's now 12 and doing great. It's been a lot of hard work. Can I ask what your daughters disabilities are form the strokes and what she can and can't do that your needing help with? Does she get formal therapies right now and if so what are their suggestions?
Mary Grace

Thank you for your note. I’m sorry for my English but I don’t speak English well  :( We are so glad that your daughter is doing great! Hanna experienced two ischemic apoplectic strokes within a period of a month. Hanna had suffered a large infarction of the left side in the arterior middle cerebral artery territory as well as the smaller one on the right side. She subsequently suffered a second stroke involving the right hemisphere. Her brain has been damaged on considerable area. Till today Hanna has all  limbs paresis, doesn’t speak or move. Hanna is rehabilitated every day  (about a one hour a day) and we often goes to professional rehabilitation center (we been there 3 times and we spent there about 3 weeks each time), we also spend much time in the swimming pool – Hanna loves water  :) As for the medications, Hanna takes mydocalm (latin name: Tolperisoni hydrochloridum) luminal (Phenobarbitalum ) aspirin, neurontin ( Gabapentinum) -this one temporarily. Hanna still very suffers from very strong body spastic. She can’t sit down by herself, raise her head or catch things in her hands. Our large problem that we should solve is the difficulty in Hanna’s sleeping. Nights are sleepless. Hanna can’t sleep, she often waking up and he isn’t sleeping all hours. Did you have similar problem with your daughter? What was your daughter's health after the strokes? How was your daughter rehabilitated? What kind of medications  did she take? We will be grateful for the information . This is very important for us. Hanna’s physiotherapists say that Hanna has the large potential and she making progress but unfortunately the effects are still not enough for us and Hanna suffers a lot.

Eve

Hey Petr and Eva

I see you finally found this forum - welcome.

It sounds like Little Hannah is still suffering from the residual effects of the stroke and what you are doing is right. She needs a lot of physiotherapy and occupational therapy. Keep persisting and the physical improvements will come. Keep in mind that it's only 7 months since her surgery. The surgery performed, I assume because of her age, was indirect bypass which takes some time (up to 6 months) to start working properly. Then it will take a few more months for her body/brain to adapt to having all this great new blood flow. I'm not suggesting she will suddenly be better, but from now with lots of physiotherapy, I believe you'll start seeing improvements. Stay positive.

It can be really trying and testing because of the slow rate of improvement, and throw in the fact that you're not getting much sleep and I can only imagine how difficult it must be for you. Does Hannah have any sort of sleeping routine or pattern? Is she sleeping more during the day than at night? When she does eventually fall asleep, how long does she sleep for?

I believe that if it's only at night that she's crying, and not during the day, then her sleep routine could be wrong. She's not tired enough at night so when she wakes up she gets bored/lonely and wonders where everyone is and why it's dark and quiet. Maybe if you can get some sort of routine going for her she will start understanding that night time is sleep time.

I could be wrong, but if you could give some feedback on her routine maybe we can help with the sleeping issue at least.

Keep well and stay strong
Mark (Luca's Dad)

Eve, I hope you got my e-mail....How's Hannah doing?
Mary Grace

Hania has also problems with sleeping during the day.  :( If Hania at least goes to sleep during the day, she will sleep only moment (about 15-20 minutes). At the beginning we thought that maybe if she wasn't sleep during the day, she would be so tired that she should sleep all night. But it wasn't (she still wasn't able to sleep at night). We can see that Hania is so tired after all day with rehabilitation but she still can't sleep  Hania often goes to sleep at 10 p.m. , 11 p.m. or midnight. Then she is sleeping one or two hours. Then  she is awake and she is not able to go back to sleep after that. We need another 2-3 hours to lull her again. Then she is sleeping same time (maybe one or two hours) and she is awake. The same situation is repeated all night   Our neurologist isn't able to say what is causing this problem. Our doctor is helpless in view of Hanna's insomnia. We give Hania Gabapentium for time to time. After that she sleeps at night but we don't want to give it to her every day, because it  is very strong medicine. We have given her also Melatoninum some times ago, but there were no effects. We have no idea what we should do. Because of insomnia Hannah is permanently tired and we also.  :(

Hannah unfortunately has broken her femur bone during the rehabilitation today. We have no idea how this could happened. Hannah will be operated this evening.  Keep your fingers crossed for our girl.

I am so sorry!  Good luck with the surgery to fix her femur. 

Jody

Thinking of you and little Hannah today. All the best.

Many prayers today for Hannah and her surgery.
Mary Grace

I am so sorry! Many prayers for Hannah and her surgerys.

I hope  Hannah's surgery went well and she's on her way to recovery from her injury.Keeling her in my prayers.
Mary Grace

Sorry I haven't been in touch but we are still in hospital and there were some complications after operations (we were afraid that would be necessary a blood transfusion because Hannah's blood results were very bad but we managed without transfusion) but it is ok now. Thanks all for your responses and prayers. It helps so much to hear from you. Hannah's surgery went well. . Hania is still in the hospital and she is very restless.Hannnah's bones are very brittle (breakable) and therefore Hannah broke the femur during the rehabilitations. If Hannah's bones were so strong like healthy children have, her femur wouldn't be broken. Her rehabilitation will be proceeding differently after we leave the hospital because we can't expose Hannah to the risk. of breaking another bone. She will have to take medicines to strengthen her  bones. We worry about Hannah. She is in a lot of pain.  Everything is so  complicated.

Eve

Hey Eve

This is a very difficult time for you and your family. Little Hannah has a lot of people thinking of her and sending as much positive energy as possible. Keep your faith in your little girl and she will get through this.

Stay strong and keep us updated on her progress.
Mark (Luca's Dad)

I have bad news. We just have learnt that Hannah must have the second surgery.She just has X-ray and it turned out that there were serious complications.The oparation will be tomorrow. We worry very much

Dear Eve, I am so sorry to hear about this troubling time. I will pray for Hanna. This may not be the best time to worry about therapy so just spend time your little one. We can catch up on this later but I thought I would share a bit. I do have a lot of info I could share with you about your first post on therapy. My daughter is 2 (Adriana) and also is somewhat spastic. She has had 3 strokes. Her damage to her brain is very similar to Hanna's. She had large infarct on the left and small on the right side of her brain. We have also experienced sleeplessness for the past year. It was all unexplainable for the Neurologist. Sleeping has improved but we still do not know if it was headaches or teething that was causing her to wake up in the night screaming multiple times. I do think that Marks comment on the routine would help. Because of Adriana's Moyamoya we always went in her room to check on her and sometimes would get her up out of the dark just to watch her body for seizures. Because of this it made her sleeping worse. Now if she cries in the night I usually wait a few minutes before I go in there and she usually falls back to sleep on her own. I think that my daughter never learned how to sooth herself because of my anxiety. If you want to know more or have questions just send a personal message. I am no expert and am new at all this myself but have become obsessed with my daughters treatment and therapy.  Danielle

Many prayers for your family. I'm so sorry that Hannah has had such a difficult time. It's so hard to watch our children go into surgery, please know that our prayers will be with her. Keep us posted when you can...
Mary Grace

Eve, I'm adding Hannah to my prayers.  So sorry she is going through so much.

It's obvious you love her very much and are doing all you can to help her.

We are pretty new to the world of MM but if I hear of anything that may seem to help I'll let you know.

Will be adding Hannah to our prayers tonight as well !!

Hannah is finally at home. We are so happy! Hannah is weakened but she smiles. Thank you, thank you for support, for your replies. We don't give up  :)

I'm so relieved and happy to hear that.Thank you for the update. I will keep her in my prayers that she continues to heal. You must be so happy to be at home with her!
Mary Grace

Thanks for letting us know. This is good news. I continue to keep Hannah in my thoughts.

Take care
Mark (Luca's Dad)

Good news. Hannah is in the thoughts of all of us.

Paula

So glad to hear your home. I'm sure her smiles are the best. It is great to hear your not giving up. You can do this!!! The rehab is slow and long but there will be improvement. We will keep praying for Hanna.
                                                          :)Danielle

I hope Hannah's progress is continuing. What a little trooper she must be. Just letting you know she is in my thoughts and prayers.....
Mary Grace

Hi Ewa and Piotr,
I have been following your journey  since the beginning...read a lot of articles about Hania in polish newspapers online....my hair were standing up on my head and tears were pouring down my cheeks...I just could not believe  the way everything was handled by some of the doctors and hospitals in Poland...I keep you and Hania in my prayers...stay strong...good news that shes back home ...keep as posted..
                Aneta (Nicole's mom)

Hi  :)
we haven't written long time but the care of Hania takes us all our time. Hannah has been operated on this week. The bars (wand? I don't know how to say in English )  from her leg have been taken out of her leg (after this unfortunate breaking which was  in January). We will go to another hospital in two weeks. Hania doesn't tolerate well those stays in hospitals. She is very anxious and nervous.  But we need to find out why Hannah's bones are so breakable and we have to take another tests.
Take care,
Eve and Peter

Hi, all  :)
We still fight and we will not give up :)
Our Hannah still doesn't speak or move but we don't lose our hope. Rehabilitation is very difficult but we have no other option. We are keeping only positive attitude.
You can find some pictures of Hannah on her website: www.lewko.eu  Enjoy! ;)

  Nice to hear from you. Rehabilitation for my daughter has been a long hard road also. Kathleen was five so she got ehr therapies at school. We also tried to do some private therapy too. We still do and it's been 8yrs Does your daughter get physical therapy speech therapy and Occupational therapy?
Mary Grace

Hi Eve & Peter

You guys are superstars and your positive attitude is exactly what Little Hania needs.

She looks beautiful. She is such an amazing Young Lady, what a fighter!

Take care
Mark (Luca's Dad)

Dear Mark and Mary Grace,

Hananh gets physical therapy, speech therapy and occupational therapy. But we have to take a private rehabilitation. There are only few specialist - profesionals therapists in Poland, who are able to take care of Hannah. Unfortunately most of therapists do it badly. Only one rehabilitation center is able to help Hannah. It's very expensive but there is a lot of people who help us.

Best wishes,

Eve & Peter

Eve and Peter, I know it's hard when the people you expect to help you aren't capable. we've had some great therapists and some really awful therapists.Kathleen spent a month in a rehab. hospital. I also find a lot of help online and research what needs to be done and bring it to the therapists. I talk with other parents of stroke surving children online and get ideas for Kathleen's rehabilitation. I've come to find that the therapists who treat adults)as apposed to pediatric therapists) really have more experience with stroke rehab. They also expect more from Kathleen so they get more from her. She still has no use of her left hand and arm but we're still working on it. Kathleen has a difficult time walking and needs leg braces but at least she's walking,she spent the first year or so in a wheelchair and still uses it for longer distances. It took her a few years to get her speech back to where it had been pre-stroke. Now she's talking our ear off. We did a lot a speech therapy, mostly oral motor stuff. Do you have any specific questions about Hannah's rehabilitation? I'de love to be of some help if I can. we've been doing this since Kathleen was a baby, she was born with Down syndrome so she needed therapy right away.
Mary Grace

Dzien dobry! I'm a third generation Polish American with moyamoya... My Polish is very, very minimal :)  Wishing you and your daughter the best in everything!  Just keep going with the rehablitation with time things can change!  Keep us updated!  Katie

Katie,

how nice to hear you! Polish is beautiful language but very difficult and complicated. Have you even been in Poland?
Best wishes,

Eve and Peter

Eve and Peter,

I looked at the website.  You have a beautiful little girl.  I hope you are all doing well.

Donna

Eve & Peter,

I also looked at your website, she is gorgeous!  I shared the link with my family and they are praying for your family!  Polish is a beautiful langauge, I use to love listening to my relatives speaking when I was little.  I have not yet visited Poland.  Most of my family has, but I am one of the youngest in my generation and was too little to go before my grandparents and great aunt had passed away.  I plan to go someday, it's my biggest wish!  I hope you are all doing well.  Kaite