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New member, children lives after surgery (Read 198 times)
Saras family
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New member, children lives after surgery
Aug 5th, 2017 at 2:44pm
 
Hi everyone Smiley, we are Family from Europe- living last 10 years in Denmark. Yesterday (27.07) our little 1 year old Sara was diagnosed with MM. Since 10 days they was considering it, so we had some time to mentaly prapare ourselfs for it. It starts after she get TIA or small stroke? during night and couldn't move right side of body. All movement came back in next 2 days and she luckly can explore world again. In next 6-8 weeks time we are going to have operation on her left side of brain. So luckly she was really fast diagnosed and now we waiting and hoping for smooth waiting time and operation. Sara wil be operated in Zurich - Switzerland in MM children center... I need to admit that DJ and all of you making great contribution in MM knowledge for people like me. Now question: How children perform after surgery, how different they lives look likes? I read a bit here but if you can come with your childrens storys or those who was children at the moment of surgery i will be glad.
ps. sorry for my english, i am not native speaker so be kind with me Wink
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Smithnth
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Re: New member, children lives after surgery
Reply #1 - Aug 14th, 2017 at 12:30am
 
My son had a similar situation. TIA at 2 years. Lost of function on the left side of the body that came back within a few hours and 90% normal in a few days. Never officially diagnosed with Moyamoya but we treat him as if he had it. He has a narrowing on his right mca which is lower than were MM normaly presents.   We had a indirect bypass about 8 months after the first TIA. The reason for our delay was due to my wife pregnancy and we took some time to consult with other drs about a direct vs indirect. For all intents and purposes my son is a normal boy. We treat him the same as his classmates. The things that did change were as follows. We have him attending occupational, physical and speech therapy.  We are also on a aspirin regime. We watch his hydration levels like a hawk.

When he is sick or dehydrated we see more effects of the stroke and stuttering. There we make sure to always have a water bottle on us. We also have a letter from the dr that lets us go straight into the ER to get a IV if he is dehydrated. We have used this once and the hospital was very accommodating.

Occupational and physical therapy were to help with some effects of the stroke. 3 months after the surgery my son had another tia and started stuttering. We are not sure if they were linked or if the stuttering was neurological or behavioral. It doesn't really matter as we treat stuttering the same way. 

Aspirin  thins the blood but it you have to be careful for risins disease. Aspirin can also cause ulcers or am upset stomach so we mix in Pepcid twice a day.

Had a blood flow study 9 months after the surgery and we believe that we are cured. Blood flow is the same between both hemispheres of the brain. Flow up study in a year to confirm the same results. No tias since.

Things to think about. 1. My son is very sensitive to a lot of things. Light sounds etc. not autistic but similar and much milder.  Not sure if that is a result of his issues, diagnosis, experience or if that's just him.  2. We think he changed hands; he was more left hand dominate prior to the tia and is Joe a righty.

Let me know if you have any other questions. Hopefully this answers you questions.

Sorry about spelling errors, doing this on my phone.
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Saras family
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Re: New member, children lives after surgery
Reply #2 - Aug 30th, 2017 at 4:32pm
 
I am really glad for your response Smithnth. I was impatient first few days waiting for somebody to write comment. We get briefly informed that operation going to be in beginning of october. Haven't been informed about aspirin side effect, so there is something to be prepare for. She geting 35mg dayly. As far she is dealing with it prety ok. Dr told us at she have sufficient blood delivery for now (after Angiography) PET scan going to be done few days before operation. We keeping eye on hydrating her and she is often thirsty (becouse of summer?). Each day she is developing new skills and look like other kids at this age. I wish all best for your son, and waiting for more responses from others. Smiley
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Re: New member, children lives after surgery
Reply #3 - Sep 1st, 2017 at 3:04am
 
Hematology will be working with you a lot to help make sure the platelet count is in the correct range. Watch for dark stools which could mean an ulcer. If possible make sure that aspirin is taken with food.

If you are getting a indirect bypass the first 24-48 hours after surgery are very serious. After the surgery the drs and nurses will be very concerned about the blood pressure. They want the pressure in the  80-100 range to make sure the arteries do not collapse. Talk to your dr about a "central-line" or as this will help them administer medicine in the invent that blood pressure drops. There will swelling; we had significant swelling that went down in about a week.

Make sure that you have a good support system in place for that week. You will be in the icu which means that nurses will be checking on you and Sara every 40 minutes. Sleep in shifts.

Praying for you and Sara. I am in the states if you or your family need to talk or ask further questions.
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