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Newly Diagnosed - my son Sean (Read 9945 times)
newmmdad
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Newly Diagnosed - my son Sean
Sep 13th, 2004 at 12:17am
 
First ... thanks DJ for all the effort you have put into this site and the bulletin board.

Two weeks ago, my 3 1/2 yr old adopted son was diagnosed in Des Moines with Moya moya ... diagnosis confirmed by Dr. Scott in Boston after sending images from two MRI's (one with contrast), MRA and CTA as well as associated med hx.  We will be going to Boston in early to mid October for surgery.

It appears that my son has many risk factors, but his prognosis (we feel) is great.   Wink

Sean was born 7 wks early, low birth weight (just over 3 lbs.), addicted to cocaine at birth, down syndrome, african american (has a first cousin with sickle cell anemia), at least 1/4 native american as well. 

We are most hopeful about his long-term prognosis ... the increased blood flow may even help ease his learning disabilities cause by the cocaine exposure and the down syndrome (we hope!)

Dr. Scott and his office have been fantastic already ... we received a call from Dr. Scott within hours of our first email ... have had at least 3 or 4 calls from his office staff in the past week ... and the diagnosis only took place 2 weeks ago.

One note:  there was a 3 day period between Sean's firs MRI and the second one ... the docs in Des Moines (my wife is a PICU RN at the same hospital) tell us that some of the stroke damage noted on Friday was gone on Monday's scan.  Sean has regained use of his left leg and left arm over the past two weeks ... communication is still a challenge.
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Sean's Dad - Steve&&Perry, IA&&"music comes straight from the heart"
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daisy
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Augusta, USA, usa, 461, 137, WV, West_Virginia
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Re: Newly Diagnosed - my son Sean
Reply #1 - Sep 13th, 2004 at 12:26am
 
Steve,

    Welcome to our MM family.  It certainly sounds like your son has a great deal on his little body.  I'm certain that God placed Sean in your home for a very important reason.  Sean has been blessed to be given wonderful parents.  Your family has a hard road ahead of them, but thankfully Sean's MM was diagnosed at an early age.  Plus, he's already shown he's a fighter by regaining the use of his left side.   My prayers will be with you and your family.  God Bless.

Lee

ps.  My little boy (2 lbs, 8 oz.) and little girl (4 lbs, 2 oz.) were premature due to my MM.  But, both are healthy and happy now.  
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« Last Edit: Sep 13th, 2004 at 12:28am by daisy »  

Lee Timbrook
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CarasMOM
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My 11 year old Cara has
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Sedalia, Missouri
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Re: Newly Diagnosed - my son Sean
Reply #2 - Sep 13th, 2004 at 1:50am
 
Welcome Steve and Sean !!!

I just typed the longest post for you and when I clicked post...it send me a warning it was too long to go back and edit it...I tried...was GONE.  Should have printed it then retyped it.

I am an adoptive mom myself to my four kids (3 teenage boys and Cara)...all of them as babies...searched a long time for a girl and found her in Guatemala. Friends tell me there was a reason Cara was placed in our arms...as we would provide the help she'll need later on.  At 7 months when we got her she was only 11 pounds..I have no clue her medical history but thankful she is "MINE".. 

But you mentioned something that solves part of Cara's puzzle !!!!!   When you said your son's stroke disappeared on the MRI that was re-taken few days later.   We swore that Cara (at 2.5) HAD a stroke that caused all the left side weakness, drunk walk, etc....but was few days later before the pediatric neurologist admitted her in the hospital for a nonstop 5 day testing....MRI showed not one spot...but she did have HIGH blood pressure, extra artery in kidney (they found out later) and abnormal brain artery network (long list of possible disorders - MM was not a strong one either).....definitely had a speech delay....at 3.5 she was one to three words only at a time.  Wasn't til bit after 4 before she was talking in child like full sentences...wasn't til 5 before she was talking (still not perfect either) in strong full sentences...then another small stroke caused her speech to go back downhill....but its coming back ...after shes had her two surgeries (July 14 and August 23rd)...but has a long road ahead but things looking great for her though even though she continues to have TIA's.  Feel free to ask any questions....this is a great website !!!

With Dr. Scott ...Sean will be in GREAT hands.  (we went with the Dr. Meyer at the Mayo in Rochester)

Warm Hugs,

carasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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Rena
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Hi, My son Tyler was diagnosed
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Re: Newly Diagnosed - my son Sean
Reply #3 - Sep 13th, 2004 at 8:57am
 
Steve,
Glad to hear everything is going forward with Sean. I was wondering how everything was going since our chat.
It seems the MM children are real fighters. The future will hold more stress for you, and your wife, than Sean.
Keep us updated, I will continue to keep your whole family in my prayers.
Rena
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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&
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mg12061
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Re: Newly Diagnosed - my son Sean
Reply #4 - Sep 13th, 2004 at 9:13am
 
  Hello, I'm glad you found your way to this sight.My daughter  has moyamoya. She was diagnosed 2 yrs ago.She is now 7 yrs old.She also has down syndrome.First you are in great hands with Dr. Scott. Will he be doing the surgery? Boston Children's hospital is an amazing place. Kahtleen's surgery was done there also.Everyone is so helpful and caring. They are also very knowledgable about MM which is such a comfort.Even though Kahtleen suffered severe strokes she is doing amazingly wonderful.I have heard the same thing you spoke of that you may see even better progress (in terms of the DS) than you did before the diagnosis. I don't have any idea when she may have started to become affected by the MM becasue everything until she got really bad was chalked up to the DS.She is now in 1st grade reading and doing math at grade level. She is in a reg. classroom with special ed support.She gets lots of therapy in school.  Her memory is even so much better than ever before.I would be hqappy to answer any questions or just talk if you like. I also belong to a wonderful support group for Parents of children with DS.It is passworded and very private I could send you a invite if you would like. They too are full of info on DS. My prayers are with yourfamily.
Mary Grace   RGrace5@aol.com
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newmmdad
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Re: Newly Diagnosed - my son Sean
Reply #5 - Sep 13th, 2004 at 10:08am
 
Thanks Mary ... either Liz or I will be giving you a call real soon.  With 6 kids (3 to 17) in the house it gets pretty crazy!  We are really hoping for the best!
Shocked Shocked Shocked Shocked Shocked Shocked
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Sean's Dad - Steve&&Perry, IA&&"music comes straight from the heart"
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mg12061
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Re: Newly Diagnosed - my son Sean
Reply #6 - Sep 13th, 2004 at 12:01pm
 
  6 kids wow,I grew up in a family of 7 kids so I know how hectic it can be.I have 3 kids ,7-17 (all five yrs apart) and before I know it the day is over and I'm ready for bed.I just realized you were the same person I have e-mailed with from another group......You have every right to expect the best possible outcome! Talk to you soon....
Mary Grace
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gotchlorine
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San Jose, USA, usa, 24, 158, CA, California
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Re: Newly Diagnosed - my son Sean
Reply #7 - Sep 14th, 2004 at 2:02am
 
Dear Steve,

Welcome to our MM family!  Sean is adorable, and I'm sorry to hear of his medical issues.  I know that God gave Sean to you (and you to him) for a special reason, and will wait anxiously to hear of surgery plans.

My daughter Tara (17) was diagnosed with MM in May this year.  She had her surgeries at Stanford with Dr. Steinberg in June, and is making a very good recovery.  We will be heading back to Stanford later this week for all of her three-month post-op testing. 

I wanted to share with you that we have very dear friends in southern California who are adoptive parents and have been foster parents to about 75 medically fragile children.  Their experiences sound very much like they parallel yours.  Sadly, Eric (the husband) died of brain cancer in 2000.  His wife Amy, has continued fostering, and is just an amazing tower of strength.  Anyway, I just wanted to tell you and your wife that I think you're very special people, and I'm glad you've become part of this website.  We'll be adding your whole family to our prayers!

Warmly,

Jill      
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CarasMOM
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Re: Newly Diagnosed - my son Sean
Reply #8 - Sep 15th, 2004 at 12:48am
 
Love Sean's picture !!!!!  Smiley Smiley Even my Cara asked me who he was (she loves seeing her picture on this website).....I admire for all the loving you have given to your children, your family's story...such a special DAD you are !!!!   My prayers that all goes well for Sean and look forward to your posts full of updates.  Warm Hugs, carasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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nikki
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Re: Newly Diagnosed - my son Sean
Reply #9 - Sep 21st, 2004 at 8:03pm
 
Welcome Sean and Steve!!I agree with everyone that you are very wonderful people and I am glad you found this site. Although it sounds like Sean has a good bit agianst him, it sounds to me like he has even more going FOR him like a loving father, early diagnosis by an mm specialist, and the fact that he is so young. Kids seemed to deal and recover so much better than adults. I also have a question for everybody. Downs is a pretty rare occurance, right? And mm is supposidly even more rare, right? It strikes me as surprising that just here on this site that there are three downs/mm patients that I know of personally. That seems like alot to me for two rare disorders. Do you think there might be some relation, or does anyone know of any research connecting the two in any way? Just tossing ideas around, sorry for rambling. Anyway, congratulations,Steve, on being the father of such a beautiful son and our thoughts and prayers are with you both Smiley                                         Nikki
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Annica
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Re: Newly Diagnosed - my son Sean
Reply #10 - Sep 22nd, 2004 at 3:58am
 
Hi Nikki! Smiley

Yes there is a connection between mm and Downs syndrome and a few other conditions and if you look under mm-information on this site IŽm sure youŽll find it or perhaps DJ who knows how to qoute and note links can give you a direct link to the specific information.

How is your mother doing Nikki?

Take care

Annica

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newmmdad
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Re: Newly Diagnosed - my son Sean
Reply #11 - Sep 22nd, 2004 at 8:43am
 
Thanks for the welcomes to the board.

As Annica said, there does seem to be a higher occurance of MM in Down patients.  In fact, Dr. Scott from Boston, along with at least one other doctor are working on new research along these lines.

Some of the other factors that MAY have higher incidence of MM include (this is not an exhaustive list, by the way): Sickle Cell (Sean has a first cousin with SCA), Asian heritage, possibly Native American heritage (Sean is about 1/2 native American), some very specific brain and head traumas, previous cerebral surgeries, some cardiovascular anomalies (Sean has ASD ... atrial septal defect), and a handful of other neurological disorders.

In other words, though we did not know this until after he was diagnosed, it appears that Sean has always been at a higher risk for MM than the general population.

Bottom line here ... the etiology (causes) of MM are still unknown, but researchers and specialists like Dr. Steinberg, Dr. Scott and their associates are hard at work to identify and determine risk factors and possible causes.  Each of us who is a member of the MM family adds to their knowledge base.  The yearly follow-ups and other requests from these specialists are SO important in helping them to uncover the mysteries of MM.
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Sean's Dad - Steve&&Perry, IA&&"music comes straight from the heart"
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mg12061
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Re: Newly Diagnosed - my son Sean
Reply #12 - Sep 22nd, 2004 at 11:14am
 
  Kathleen has both MM and DS.When we went back for her 2 ry check Dr. Scott told us about the paper they are woking on about MM and DS.On his site (which is not new numbers) but it does apear that almost 10% of his patients have both I think.
   Steve has your son had surgeries before or IV's? I just was remember Kahtleen's surgeries and one of the MOST difficult things for us to deal with was the IV's. Her veins are so fragil and tiny (which can be common for DS) she was "blowing" IV's constantly sometimes 2 a day.They were running out of places to stick her and she was becoming hysterical at times while they tried.As you know this state is not good for anyone with MM especially just after surgery.Before ehr second surgery they decided to try and put a PIC line in while under anasthesia.They couldn't even get that in.They finally decided they couldn't send her out of surgery without at least putting in a couple more lines (capped off) in her feet to use when the other "blew".
Mary Grace
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CarasMOM
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Re: Newly Diagnosed - my son Sean
Reply #13 - Sep 22nd, 2004 at 1:00pm
 
Hi Guys...I want to add about DS with blowing IV lines...Cara doesn't have DS (but she may have a learning disability which we may not know yet) But Dr. Meyer asked that question...like newmmdad said they want to know details for continuing research (very common) especially when MM is rare and ongoing variations of all cases.

They always wait until Cara is put under before inserting IV.  When she came back from surgery one...she had severall holes in her arms and wrists that looked like they "tried" but no luck..and had to replace them while she was coming out of it.   I suggested why not go in her feet or upper thigh (they did that for me and I'm a grown woman but my viens and arteries are small)(not due to MM but diabetes)...and the IV in my thigh was "painless" I felt best place for it to be...while cumbersome... but so much better..allows arms/hands to be free and especially when MM patients may have stroke in one arm etc won't be further affected.   However Cara came back from surgery #2 with IV's in her ankle which worked out GREAT.   Now reading Mary Grace's post....I realize that was happening when Cara was in pain with IV's in her arm....one was for blood pressure monitoring, other for fluids/medication.

Since Cara was adopted from Guatemala...friends have always thought she may have some "Asian" in her...and I noticed in CJI's and Wayne's findings that theres a gene in the Asian hertiage that carries the MM disorder (not in those words...but something like that)...I do am gonna look into it.

hugs,  carasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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nikki
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My Mom has MM

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Re: Newly Diagnosed - my son Sean
Reply #14 - Sep 22nd, 2004 at 3:43pm
 
Hi everybody! Annica, my mom is doing good. Her bad moods and depresion seem to be slacking off, for the time anyway. Thanx for the responses about mm and ds. Although this doesn't apply to me, I just found it strange and I am glad that there IS research availible for those that it does apply to. I would, though like to hear or read more about mm being linked to native americans because I have a pretty good bit of native american blood and I have never seen any research refering to that. I would like to read that research if yall know the links or remember where you saw it.             Nikki
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newmmdad
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Re: Newly Diagnosed - my son Sean
Reply #15 - Sep 22nd, 2004 at 8:46pm
 
The Japanese connection is fairly well known ... studies I have read say 9 to 10% of MM cases occur in those with Japanese background.  The National Institute of Neurological Disorders and Stroke (NINDS) site states: "Researchers suspect a genetic link because of the 9 percent incidence of the disease found in certain Japanese families."

The reference to Native Americans came from some reading I did two nights ago that said some historians believe there is a common ancestor between the Asian and Native American peoples ... a Mongol ancestor.  Sorry, I have lost that link, but will try to find it again.

Another source, without numbers, is: www.emedicine.com . This site states (as we have all probably read many times) that "the exact etiology of MM is unkown", then goes on to list several disease states that have been reported in association with MM:

"Infections - Leptospirosis and tuberculosis

Hematologic disorders - Aplastic anemia, Fanconi anemia, sickle cell anemia, and lupus anticoagulant

Congenital syndromes - Apert syndrome, Down syndrome, Marfan syndrome, tuberous sclerosis, Turner syndrome, von Recklinghausen disease, and Hirschsprung disease

Vascular diseases - Atherosclerotic disease, coarctation of the aorta and fibromuscular dysplasia, cranial trauma, radiation injury, parasellar tumors, and hypertension"

Some more links:
http://neurosurgery.mgh.harvard.edu/Neurovascular/NVNwin96.htm  (from 1996)
Links to many newer articles appear on: http://www.chasa.org/moyamoya.htm
University of Alabama
http://www.uab.edu/pedradpath/case26.html

A listing of links: http://www.geometry.net/health_conditions/moyamoya_disease.php

Everything on DJ's link page!

WARNING: Unless you are a fan of popups, don't bother going to wrongdiagnosis.com .

Steve



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Sean's Dad - Steve&&Perry, IA&&"music comes straight from the heart"
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