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Still new to this MM thing and have questions (Read 9283 times)

Michell

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Still new to this MM thing and have questions
Jul 20^th, 2004 at 12:14am

First of all, I want to thank all of you who have answered questions and been supportive so far. I want to also thank you all for answering my questions in advance, Thank you.

As some of you know I have a one year old son, Trey, who has been diagnosed and had surgeries for MM. It has been one month since his surgeries. He is doing GREAT!!! I was skimming the board though and came across a post for MM and birth control. Trey being one and a boy doesn't have to worry about this, but I thought that it looked interesting and thought that I would just read it. As I was reading I was noticing that there were alot of things listed that MM patients should not do or take or intake. I don't know if it is because of Trey's age that we weren't told anything like these things or the fact that we saw a Neurosurgeon and not a Specialist in Neurosurgery that we were not told to avoid anything or not to expose or let him drink or what ever the case may be. All we have been warned of is that Trey needs to stay hydrated and because of the seizure meds he should avoid to much sun. I only know these things because his medicine bottle says to avoid sunlight and because we were told that dehydration can lead to a stroke.

My question to you all is can anyone tell me some do and don'ts that we should be aware of? I have read about glasses/sunglasses, caffeine, hats, allergy/sinus meds, swimming, getting upset, laughing to much. Are all of these true? I would appreciate any tips on what to avoid or watch out for. I never even thought to ask these things. I suppose it is because of Trey's age that it was not thought of.

Also, I have been taking Atenelol for Sinus Tachycardia (fast heart rate) since 2001 and Trey was born in 2003. I asked while I was pregnant if it was okay to take the meds and since he had the strokes and was diagnosed with MM if it was okay that I took the med and was told that it was not linked to MM. As I stated we have never seen a specialist. Do any of you know of this drug having a link to MM? I was both pregnant taking this med and breast feeding while taking it and would love to know if there is a known link.

Thank you all for all of your help and for making me feel like it's okay to have questions and concerns. This has been a scary thing that we having been going through and since he is so young I think it has made it harder because we can not ask him what is going on. Thank you all for your understanding. I am so glad that I found this site.

Thanks,

Michell

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babyblue

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Re: Still new to this MM thing and have questions
Reply #1 - Jul 20^th, 2004 at 12:28am

Hi Michell-

I really dont have the answers to your questions, but i too would like to know more on restrictions. The only one i was told was not to take birth control, which your little Trey will not have to worry about. But i am going back to stanford in a week for my three month follow-up and will be happy to ask the doctors there. I know that others here probably will be able to help you out some more too, but ill find out what i can. I an very happy that things are going good for Trey and my thoughts will be with you!

Christy (babyblue)

"Life is not a desination, but a journey!"

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STrantas

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Re: Still new to this MM thing and have questions
Reply #2 - Jul 20^th, 2004 at 8:41am

Hi Michell -

Yes, it is very frustrating about all the do's and don'ts! I wasn't put on any restrictions in terms of food by Dr. Scott. But, I am a big coffee drinker and I probably should ask about the caffeine. Anyway, these are the definites Dr. Scott told me:
No tight headbands or glasses.
Drink plenty of fluids - stay hydrated.
No birth control.

I wear glasses - and the doc said I should get new frames because they were too tight on my head. For the fluid - at least 4 oz. an hour of anything. For the birth control - obviously Trey wouldn't need this! - but just as an FYI - one of the serious side affects from taking birth control pills is stroke.

I would definitely try and e-mail or call one of the MM specialists listed on the board...just my Smiley

!

-Shari

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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Roz

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Re: Still new to this MM thing and have questions
Reply #3 - Jul 20^th, 2004 at 10:29am

Hi Michell,

Happy to hear Trey is doing well

With regard to the do's and don'ts, the ones that I am aware of, I've written in my last post.

As for the getting upset and laughing too much bit - I found that this used to bring on an 'episode' so that is why I had to try and avoid it. My doctors specifically advised me to try and not get upset. With Trey being so young, I guess this is unavoidable but please try not to worry. I just want to reaasure you that post op, I am fine and now able to cry and laugh as much as I like Cheesy

I did well at school passing all my exams (with good grades) and after school I went onto university to do my degree and I graduated a couple of years ago. I just wanted to let you know that after surgery, I am now able to lead a 'normal' life and wish you the same hope for Trey and his future. I know that my Parents were very worried about how I would progress and just wanted to try and relieve some of those worries.

Best Wishes to you and Trey,

Roselyn

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mg12061

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Re: Still new to this MM thing and have questions
Reply #4 - Jul 20^th, 2004 at 11:01am

I can also say that now 2 yrs after surgery we don't worry quite as much as we used to about the crying,laughing,and getting upset.We avoided any of these things for so long it was difficult but now Kathleen has actually gotten laughing till she can't hardly stand up, and this never bothers her.It helped when we went back for her 1 yr. angio and MRI and found out that the new growth was "the best they had seen".This isn't to say you should not be cautious but the worry won't always consume your life.I know once she can get running that too will be a concern that she doesn't over do it.(I can't wait till she can run again she's almost there).worrying about dehydration also consumed our life early on.We were constantly trying to get her to drink more.As time has passed we have realised that she is gettting enough without being obsessed with it.(We do push the popcycles in the summer)She will always take asprin and we will alwasy avoid the meds that could cause strokes.It was interesting to read about the birth control warning I hadn't heardf about this becasue she is too young to worry about it yet but I will keep it in the back of my head.Id'e love to hear too if there are any other precautions anyone has heard of.Ask away if you have any more questions, there is so much to learn.
Mary Grace

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David

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Re: Still new to this MM thing and have questions
Reply #5 - Jul 20^th, 2004 at 6:45pm

As far as I know there are no real food or liquid restrictions. At least if there are Dr. Steinberg and his nurses did not tell me there were. I would probably avoid caffeine because I seem to get headache now when I drink it. The only restriction placed on me was not to lift more than ten pounds. (yeah! right!) Anyway I think he can drink what ever he wants just as long as he stays hydrated. Another reason to avoid caffeine is it dehydrates you. Glad to hear he is doing well though.

David Farthing

It's not how much time we have that matters. It's what we do with the time we have.

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Nancy_N.

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Re: Still new to this MM thing and have questions
Reply #6 - Jul 22^nd, 2004 at 10:21am

I feel like a dummy I never new caffine, swimming,getting upset or laughing mattered, I didn't even know about the hydration thing until a while back when someone mentioned it and the sinus med. thing. The only thing I really knew was the sunglasses or glasses. What does laughing or swimming have to do with it, swimming especially. Is this just before surgery not after. Have I been sleeping I need to wake up and smell the java! Duh where have I been. Please educate me.
Nancy

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: Still new to this MM thing and have questions Reply #7 - Jul 22^nd, 2004 at 10:51am Hey guys what about pony tails or just pulling back each side of your hair into a barrett thats what Mandy wears alot? Anything about that?
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Roz

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(Re: Still new to this MM thing and have questions
Reply #8 - Jul 22^nd, 2004 at 12:26pm

Hi Nancy,

Don't worry, I didn't know about the hydration, hat, headband or glasses thing either - until I read the post. I'm really glad I found this website. As there's not that much info out there (other than on this site) it's great that we're able to share what we know and realise that there are others out there that understand what you're on about when you explain to them your symptoms:)

With regard to caffeine, I vaguely remember reading another post stating that caffeine opens up the arteries so I guess (just my guess, not entirely sure though), with MM arteries, this puts further stress and pressure on them, with them already being narrow.

As for the laughing and crying, from my understanding, when you overbreathe, your arteries constrict slightly and so because MM arteries are narrow, this constricts the arteries further, reducing the blood flow even more and possibly bringing on an 'episode.' This is what used to happen to me. Swimming, being excercise has the same effect but there is also the implication of the chlorine but I don't know what effect that has on the brain. I will ask my neurologist when I go up to see him in London in early August.

Like I said though post op, I am fine now (touch wood), apart from the odd mild symptom. The main thing is the fact that having had surgery there is now a dramatic reduced risk of having a stroke than before. I have been told that I can go back to swimming. I haven't asked about caffeine but would choose decaff as a lifestyle decision anyway.

Best Wishes,

Roselyn

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: Still new to this MM thing and have questions Reply #9 - Jul 22^nd, 2004 at 12:45pm Thanks Roselyn it makes sense now. I apreciate you getting back to me. Nancy
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srkm5482

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Re: Still new to this MM thing and have questions
Reply #10 - Jul 23^rd, 2004 at 1:34pm

Hi Michell!

Isn't this site, great?
We were only told to avoid Ibprofen (because of the aspirin therapy). Kyle has been very active, sports-wise, since his stroke & surgeries in '97 & we live in Houston, Tx: HOT & HUMID!! But, hey hydration is good for all of us!
Another thing, his neurologist put him on Cyproheptadine, an anti-hystamine, to help alliviate the migraines he gets instead of the typical migriane medication most people use. I wondered why, then read the contraindications on one of the migraine meds which said anyone who had a history of stroke should not take it.
Last summer, Kyle was diagnosed with ADD. When we decided to try meds, the neurologists prescribed Strattera becasue it is not a stimulant like Ritalin, Adderal,etc - again, because of that class of drugs having containdications for anyone with a history of stroke or seisures.
So, its probably a good idea to always asked the prescribing Dr. of pharmasist about any medication Trey is prescribed.
How's that little sweetheart doing? He's so cute!! Did his checkup last week go well?

God bless!

sue

Sue (Kyle's mom)

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Michell

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Re: Still new to this MM thing and have questions
Reply #11 - Jul 24^th, 2004 at 11:27pm

Sue and all,

Trey is doing well. He is cutting his fourth tooth now and I think I am starting to see another one under the gum trying to come.

I have been praying alot about him having the desire to drink. Since he started taking Nifferex (Iron) we have had trouble getting him to drink. He does though. I don't know though how much he should be drinking a day. But I get him to drink when he feels like it, I encourage it often.

Anyway, he is doing well. I spoke with the Neurosurgeon after I made the first post on this topic. They told us that we will have to see what the repeat Angiogram says to know what to look for and avoid in the future. It is there desire to have "cured" him. I am still a little confused about that. I guess that because of his age and the hopes that the surgery worked it is considered for the most part a cure. They don't really believe he will have to avoid anything. I asked a few questions and they said we will just have to wait to see what the test tell us. I know that doesn't sound much like an answer, but I don't want to (on purpose) dwell on the fear. They are very encouraged that he is doing so well and they think he will be fine in the future. I know that there may always be risks and there will be things that we will have to avoid or watch and that there is always a chance that he........let's not think about that.

Trey is doing well and his appointment went very well. They are happy with the way that he is healing so well from the surgery and he is doing well. He is still not using his left side the way that he used to, but we are keeping up with his PT/OT. Please just keep him in your prayers.

I still pray every night that he remain seizure and stroke free. Do you think that it is wrong that I do this? He has only had seizures when he has a stroke and I know that hopefully he will never have a nother stroke since the surgery.

David, if you read this, you wrote and told me that you had a stroke after the surgery. Can you tell me more about that? I asked Trey's Neurosurgeon about the chances of him having a third stroke now that he has had the surgery and they told us that it is really rare. Had you had the surgerys on both sides when you had the stroke?

Thank you guys. This site is great. I sent DJ more pics of Trey, but he has not posted them yet. I sent them a few days ago and I have not seen them on the site yet so I asked him if he received them, so I may have to mail them to him again.

Thank you for all of your help and encouragement. It is so nice to know that there are people out there that we can turn to with this rare syndrome.

Michell

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David

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Re: Still new to this MM thing and have questions
Reply #12 - Jul 26^th, 2004 at 1:06am

Michell,

I would not worry. My stroke came 2 days after my first surgery because my left back artery block off some. Dr. Steinberg said it is not typical for the back arteries to be involved but I am lucky enough but mine are. I may need angioplasty or something when I go back for my recheck. Dr. Steinberg is hoping it will open back up once all my swelling goes away. I have been fine since my second surgery. But like I said this is not normal. I hope that hopes you.

David

« Last Edit: Jul 26^th, 2004 at 1:08am by David »

It's not how much time we have that matters. It's what we do with the time we have.

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Michell Ex Member	Re: Still new to this MM thing and have questions Reply #13 - Jul 26^th, 2004 at 1:52am Thank you, David and good luck. Michell
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Steve_and_Sita

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Re: Still new to this MM thing and have questions
Reply #14 - Aug 2^nd, 2004 at 9:15am

Just to add a few things to the things to avoid list. Hyper-ventilation has been the main driver of episodes with our daughter. Thus avoid blowing up balloons for birthday parties and colouring with blow-pens. They have a great cause effect with her, and its so easy to forget.

That said strangely she seems to have plenty of stamina for swimming, running and other sports, without any links to episodes prior to surgery and in the three years post surgery. Snorkeling worked too, but I found the reference to masks interesting and of course I hadn't thought of that!

Its so difficult trying to make life normal and yet being aware of the risks.

The issue of getting her excited/angry is a particularly difficult one. Most of my daughters episodes were linked to her being upset because a child a school "wasn't her best friend" or similar, or because we had told her off or didn't let her do something. Do you follow a policy of avoiding making her cry at all costs at the risk of her manipulating that fact as only children can, or do you maintain similair discipline as with her brother and risk an episode when she gets upset? We've opted for the as normal as possible route, with a few worries with each episode caused as a consequence (fortunately not many), though we were lucky that she was diagnosed early and thus has not suffered a stroke. Also post surgery her episodes are milder and fewer and further between, and she is maturing with each year, probably beyond that of a normal child, as she also understands the cause effect.

Cheers

Steve

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daisy

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Re: Still new to this MM thing and have questions
Reply #15 - Aug 2^nd, 2004 at 5:42pm

Hi, everyone!!

In reply to Steve's post, I wanted you to know that you have described my childhood. I am now, 27 and was just diagnosed with the disease. Isn't technology great? I know first-hand how difficult it can be to try and never get upset or never be able to play sports or not be able to blow up balloons at birthday parties. I pray that your daughter will be able to handle her 'episodes' with a better understanding than my parents and I were. I wanted to thank you for sharing your experience and wish you and your daughter all the strength that the Good Lord can provide. You are in my thoughts and prayers.

Lee

Lee Timbrook

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Steve_and_Sita

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Re: Still new to this MM thing and have questions
Reply #16 - Aug 3^rd, 2004 at 2:45am

Lee,

Thankyou for your post and kind words. I know as a parent the very worst part of this whole thing has been the not knowing what she had and worrying about it. Once she was diagnosed everything became manageable as we at least could work out what we were dealing with and what we should do. Thus I can only imagine how difficult it must have been for you and your parents not knowing for all of those years and yet having to deal with the fear of not knowing what was wrong after each episode. I consider myself so fortunate that I will never have to go through what you and your parents did. I am so lucky that my daughter is living at a time when at last we can identify and treat this disease.

Its wonderful that you are able to share your experience with others, and whilst never pleasant to know that you have a rare disease, it must be immensely reassuring that at last you know what you are dealing with. You say you have just been diagnosed, by which I assume that you still have the long road ahead of you with regard to surgery and recovery, but hopefully it will be a great success and open a few doors in life that were previously closed to you.

My thoughts, hopes and prayers are with you on that path, and I wish you nothing but tremendous success during and post operation.

All the Best

Steve

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dataqueen

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Re: Still new to this MM thing and have questions
Reply #17 - Mar 17^th, 2009 at 12:57am

Hello My name is Kimberly. I am new to this MM disease (48 hrs). My sister (Juls 38 yrs) was just told she has this. I see a lot about staying hydrated. Now I understand why in general to stay hydrated but is there something special about this disease that makes staying hydrated even more important. Thanks

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Little Luca

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Re: Still new to this MM thing and have questions
Reply #18 - Mar 17^th, 2009 at 5:45am

Hi Kimberley

Welcome to moyamoya.com.

I suggest you start a new thread to discuss your sisters situation.

Wow, hydration?! There are so many things to deal with when first diagnosed with moyamoya that hydration doesn't really make it high on the list. BUT, saying that, hydration is important all the time for anyone, not just moyamoya sufferers. I haven't read this thread except for your post so perhaps hydration is discussed

I hope your sister gets the necessary treatment/surgery and everything goes well for her. If you have any other queries, don't hesitate to post them here, you'll find everybody here is willing to help.

Good luck
Mark (Luca's Dad)

1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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Mar

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Re: Still new to this MM thing and have questions
Reply #19 - Mar 17^th, 2009 at 7:59am

dataqueen wrote on Mar 17^th, 2009 at 12:57am:

Now I understand why in general to stay hydrated but is there something special about this disease that makes staying hydrated even more important. Thanks

Hi Kimberly,

This is how I see hydration connected with MMD. It’s very hard to explain how our body works to get the nutrients and oxygen we need to all the places we need to get it to in our body, but water is the most important way our body does it. We all need proper hydration to maintain healthy cells. Without exception, every function of the body is tied to an optimum flow of water to get the proper nutrients and oxygen it needs. Water is 70% of our brain. So, with a MM patient, you know they already lack the proper nutrients and oxygen to the brain, so their brain needs all the blood and oxygen it can get, right? See, our natural built in mechanism, constricts blood vessels to force the water from the vessels into the cell in order to deliver those vital nutrients and oxygen our brain needs. So a good hydration is vital to keep the blood flowing through the vessels with those proper nutrients and oxygen. You know when a person gets even slightly dehydrated; they may get dizzy, right? Well, even in a healthy person, that’s due to lack of the proper oxygen to the cells of the brain, so our blood vessels will constrict and pull all it can to try and get what it needs and we don’t want any of that going on with a MM patient, cuz they have enough problem getting the proper oxygen to the brain. Lack of good hydration could cause a TIA, stroke, whatever. That's how I see it.

Smiley

Mar

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hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: Still new to this MM thing and have questions Reply #20 - Mar 17^th, 2009 at 8:32am http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=search2 This is a link to a previous post about hydration...it offers a little more explanation.
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