Hello,

I'm Paula, the mother of a 4 years old girl who has been diagnosed with MM. It has been a long procedure since she began to have TIAs last year (in February). She has been diagnosed in January this year and now, after checking that there is not too much experience here (we live in Spain) we'll go to see Dr. Scott in Boston next week. She will have her surgery on April 6th and we are vey worried about. I would appreciatte if somebody could give us a little of hope or comment your experience ....

Paula has also aorta coartaction (she was operated when she was only 8 days) and I would appreciatte too if somebody with a similar problem could contact me.

Many thanks.

My daughter who is now 4 had surgery at 3 in Boston with Dr. Scott on Dec 10 2008. He was wonderful and even though it was the most difficult thing I have ever been through, thank God everything turned out great and she was back home 5 days after Surgery. The best of luck to you, have faith.

Welcome Paula! I am sorry to see that your daughter has MM. I do thank God for this sight. Unfortunaly I do not have aorta coartaction.  I would talk to Dr. Scott and ask him if there are any other risks that her condition to having the surgery can be accounted for. I made a little notebook and marked down all the questions I had for my nurosurgen.  I am also sorry that it took so long to find out. it took me almost a year to find out too. MM has a tendency to be sterotyped  with the fact that only Asians can have this dissorder, so it is easyly dismissed. OR that the doctors don't know enough about it.

Do you have a nuerologest is Spain that knows MM? This is very inprotant for follow ups.

Please keep us posted with her progress, and if you have any more questions. I will pray for you to have lots of strenght durring this "on-edge" time, and for your daughter to have a speedy recovery.
Becky

Hi Paula,  [smiley=wave.gif]

I just wanted to welcome you to our MM family, and to mention the fact that we only have two MM specialists in this country that deal with MMD on a daily basis and Dr. Scott is one of them. So it has to be comforting to know your daughter has one of the best MM specialists’ in the country treating her rare disease. You couldn’t be in better hands, IMO!! So along with all our prayers and one of the best pediatric MM specialists’, you’re in the best situation a parent could hope for under the circumstances. Your MM family will be with you in spirit all the way.  [smiley=hug.gif]

Please keep us posted.

Mar

Hi Paula

I'm sorry to have to welcome you to this site, but you're in good company here.

My little girl is now 16 months old. She was diagnosed with moyamoya after having her first stroke in September and she was operated on in December. We also had to travel quite a distance to get the correct treatment; we live in South Africa and Luca had her surgery in Newcastle, UK.

You are on the right track for your daughter, surgery by one of the top neurosuregeons in this field. Take it one day at a time and before you know it you will be in Boston. It's really frightening to think of what your daughter is going to go through, but these surgeons are unbelievably skilled and experienced, and children are so resilient.

I'm not sure if your little girl is having one surgery or two, or what type of surgery she will have, but each procedure will take a few hours followed by a recovery period in hospital of about 5-7 days. Dr Scott will advise you better, but I'm sure he won't want you jumping on a plane back to Spain immediately and you can expect to be in Boston for a couple of weeks at least.

I will echo what Becky said, don't be afraid to ask Dr Scott as many questions as you like; knowledge is king.

Just to give some encouragement, Luca is doing unbelievably well (touch wood). She is much happier now than prior to surgery; I'm sure the surgery gave her some kind of relief from pain or discomfort.

Stay strong and keep us updated

Mark (Luca's Dad)

Dear Leidy, Becky, Mar and Mark,

I really appreciate your warm words; it’s very important to know that we are not alone, although thousand of Km separate us ….  And it’s very important too to know that there are always one or more persons ready to listen to you … this web site is wonderful … thank you very much to DJ.

Trough this web site, I found out Dr. Scott, and I’ve been able to contact him; he has been very kind with us, answering my e-mails in only a few hours …. It was something incredible for me … I have already asked him my doubts about his experience with children with cardiac congenital diseases and he has explained me that he has 20 in their series now … This fact and his long term experience was our main reason to go there.

Now, I’m very frightened because we must travel thousand of km (I think we’ll stay in Boston at least 2 weeks after surgery), our daughter doesn’t like Drs at all (she has been in hospitals several times …) and I don’t know how we can explain her all this procedure, and if I’ll be strong enough to help her and to make it easier ….

Thank you very much again for your support, reading your words I understand that all of you know perfectly our concern and it’s very comfortable.

Many thanks for your prayers and for keeping us in your mind.

I’ll try to keep you updated.

Paula,Welcome to the MM family.I'm sorry you needed us but so glad that you found us.I hope that we can help your family through this journey.My daughter was diagnosed at 5 yrs old and had surgery with Dr.Scott.he was not only an amazing surgeon but a wonderful caring person who cared about our whole family.he saved out daughter's life.My daughter was also born with Down syndrome. She was in a very unstable condition at the time of surgery due to several strokes but I'm happy ot say her surgeries were a great success and she's had no further strokes.You can rest assured that your daughter is in good hands with dr. SCott and his whole team.It was such a relief for us to be surrounded with people who knew so much about thsi disease and how to manage her care with great conficence. If I can help with any questions please let me know.
Feel free to e-mail me direct if you like.Many many prayers for your family.
Mary Grace
mgrace5@nycap.rr.com

Paula,
Tell her that she needs the surgry to make her feel better and it will help her grow big and strong. The most inportant thing I think is for you not to show your worry. You may have to not give her all the truth of the surgey details. I personaly wrote my story down for me to read later, this may be a nice thing for her to read when she can undestand things better.
I wil pray for you both.
Lots of warm wishes,
Becky

How did the surgery go? I have had you in my thoughts.

Hi,

here we are. Paula was operated last Monday. The operation was complicated because her arteries were smaller than Drs thought and then they did 2 incisions in the right side and one in the left one. The recovery was difficult, but the worst is that two days ago she starded to have seizures and was admitted in the ICU again. She had 2 strokes after surgery and we have been really concerned. Now we are still at the ICU and it seems she is doing well. Se has started to speak alltough has speech disoorder (I hope will go better with time). We don't know yet the implications but she moves all her extremities then Drs say that it's good. Thank you very much all of you by your concern.

Your family is in my prayers. keep us posted

I'm so concerned ... Paula has just a TIA .... has anyone had strokes and or TIAs right after surgery?

Hey, you have been in my mind all weekend and so has your little girl, how has she been?

Thinking of you guys. I'm quite sure I've read on here that others have had TIA's post surgery. I believe recovery can be a very difficult time. Paula has been through a tremendously traumatic time during surgery, physically and mentally. I am really hoping that what she's going through is just recovery and everything will fall into place.

She is in my thoughts
Mark

Hi,

We have had a very difficult week end. Since Thursday it seemed that Paula improved a little every day, but on Sunday, she started again to cry the whole day, this caused 3 TIAs and at night her blood pressure and Heart rate decreased a lot …. I don’t know if a new stroke was occurring ….. On Monday she awake again crying al time, for two hours, she had again 2 TIAs …; she slept for two more hours and them came the miracle: she was happy, she was playing, … she is not able to walk, but Drs say that she can recover with physical therapy. She has moments when the symptoms of strokes are more evident, but Drs are happy because they say it seems she is recovering well. Now, she must eat and drink (they have stopped today fluids by the IV). Lets see, I have hope… Too much people has helped me during this moments to not loss the faith and of course, many of you are between them.

Thank you very much for your concern.

Hello, I'm so sorry your daughter has had complications.I'm happy to hear that today she's doing better and happy.My daughter suffered  a severe stroke after her first surgery.She was like a 5 yr old infant.She had her second surgery jsut days later and did great with that one.She's had no strokes or TIA's in 7 yrs. In just a month she was able to speak some,and sit up on her own.In about a year she was walking again.She spent a month in a rehab. hospital which helped a lot durring the first weeks of recovery.Kids really bounce back amazingly well.I will keep you both in my prayers.
Mary Grace

(....... huuuuge exhale!!!)

I got goose-flesh when you mentioned 'the miracle'. I am thrilled Paula is showing signs of improvement.

It's interesting that you mention she has moments when the symptoms of the stroke are more evident. Luca's stroke symptoms also fluctuate dependening on whether she is tired or not. Don't rush her, if the symptoms are more pronounced, give her a break.

Big hug for your little girl.

Mark

"Don't rush her, if the symptoms are more pronounced, give her a break." I agree with Mark.
This is the case no matter how old you are. I tried to push myself too hard and I almost got myself in touble. Slow and steady always wins the race to recovery.

I am happy to here Paula is doing better!!!
Becky

Hi,

This is only to tell everyone that today we’ll leave the hospital and, if everything is OK, we’ll return home next Wednesday. Paula is doing well; she has still periods of a high irritability and TIAs every day but I think she is improving: she is walking, playing, …. Now, we must have some patience but the most important and wonderful thing is that she is here and step by step, we’ll do it.

Thank you very much to everyone by your concern. I just wanted to share with you good news, not only concerns and bad ones …..

Paula

Hang in there!  Glad to hear things are getting better.
God Bless Your Family
Michele