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posted Feb 13, 2012 10:39 AM by mindee vance
This is the way i raise my children, organic and natural. Katie nursed from the day she was born till the day she died and gained weight normally. I massaged and manipulated her muscles every chance i had . .my hand's were always on her. I used poultices of lemon and onion and potato to keep her breathing clear (but i did use suction also -just in her mouth). I used hot and cold therapies to stimulate her nerves (hot water bottles and ice cubes). I wanted to find an acupuncturists who would try to work with her but i ran out of time.
Since Katie's life i have become a Massage Therapists (to learn anatomy and help others holistically) in school we had one class in acupuncture and i have since had many treatments . . I would recommend it for any one suffering as well as parents and loved ones of those who are suffering .. it will never cure SMA but it will not hurt you or your child and will defiantly improve your over all well being. |
posted Feb 13, 2012 10:26 AM by mindee vance
One in four chance with each pregnancy of a child being born with SMA when both parents are carriers.
The good/bad news is that with an Amniocentesis test, the fate of the child can be determined by it's parents prior to birth. That is of course if you know that you are an SMA carrier, that can be determined by a blood test.
We had our first child 8 months prior to getting pregnant with Katie. Because of our age and difficulties conceiving at first, we had every test that the "genetic specialists" offered and there for we ASSUMED we were free form worry!! NOT TRUE . . SMA is one of thousands of rare diseases that babies are born with everyday . . there really are no guarantee's with babies!!
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posted Feb 13, 2012 10:12 AM by mindee vance
One week . . my doctor ordered a blood test (we had that day), the blood test will determine SMA . . in which case an MRI and EMG are not necessary . . why put a child through it . . it's just my opinion. The results of Katie's blood test took about a week, but i was not informed about them until after she had an MRI, the good/terrible news about that is that they did not have to sedate her for the MRI because she couldn't move!! AWEFUL!!! The EMG for a child with SMA is just cruel and unusual punishment in my opinion . . i never understood what the results would determine, and why they would matter!! perhaps it's just me!! |
posted Feb 13, 2012 10:03 AM by mindee vance
I had ask this question every day that Katie was alive, and every child is different - as you already know but without hard statistics I answer this question from my gut, not as an authority on SMA .. chances are your doctor will tell you that your child will not likely survive her second birthday . . . so you HEAR and BELIEVE TWO YEARS. . when in fact . . . (add your variables i.e. age of onset and the course of care you follow) in a child with symptoms in the first few months of life , 6-9months seems average form what I have gathered reading countless memorials. It's a horrible and cruel truth. Please never give up hope that your baby will be one of the 1%, because there are some beautiful, brilliant beings in this world with SMA type one who are well into their 20's even thirties . . but they are not the norm. |
posted Aug 26, 2011 2:24 AM by mindee vance
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updated Aug 26, 2011 3:26 AM
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I ask this question to the old wise "GOOGLE" many times and never found anything more than a vague answer . . . SO here goes (tears)!
I have only spoken to two other mothers who lost a child with SMA and in all three cases, Katie included, it was loss of oxygen.
All three of us had to make the decision when to take the oxygen away. One child went to all of the specialists on the east coast and used little medical intervention, the child was on oxygen for awhile and had home care nurses every day, her parents had to make the decision to take her oxygen and she died in their bed that night.
The other was a young mother who followed all of the protocols except tracheal tube, and she died in the hospital with in one day of removing oxygen.
We were "lucky" (if that is appropriate when speaking about the death of your child) Katie was born in our home and died in our home. The only time any needle went into her body was when they took the blood test to determine SMA and when she got her immunizations at 1 month (or six weeks). Around 5 months of age her health deteriorated within weeks. . I think one of her lungs had collapsed, but I never confirmed it. Hospice came weekly and I told them in my initial meeting, I did not want to know when she was getting sicker. . That was the only way I could care for her and my other child knowing she was going to die.
One Sunday night (April 26, 2009) she had a hard time sleeping. We put the O2 sensor on her foot and by morning her levels had dropped below 80% many times. In the morning I hooked her up to the portable oxygen for a while to help her get some rest, but she never came off of it.
By 3pm, I was shuffling to get more oxygen in the house when our second to last bottle ran out and she was on it. . . She plummeted. . We quickly got her reconnected and back up to 70% oxygen but I knew. . I looked at the hospice nurse and said "OMG that’s it isn’t it?" she said nothing, just smiled (I LOVE YOU HOSPICE WORKERS) then I had to convince my husband to let her go. . (There was a lot that transpired in this time but I can’t write it because I can’t see the computer with tears in my eyes) . . . Ultimately, about an hour or two later, we took Katie to the sofa, held her in our arms and took the oxygen out of her nose. . And cried. She looked as us with glazed eyes (morphine) and I don’t know if she made any sounds at all because of our crying but she was gone in minutes. And that is how SMA killed her.
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posted Aug 25, 2011 1:57 AM by mindee vance
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updated Aug 25, 2011 3:21 AM
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Is a baby with spinal muscular atrophy in any pain? Well the unfortunate answer to this question is yes. SMA only affects muscle, the senses all develop normally. With Katie, I had to make myself believe that her tiny little moans and cries were just her way of communicating, but it is very for me to watch video of her "talking" now without crying. I have a more realistic perspective now. I did everything that I could do to try to keep her comfy in her body. I massaged and moved her legs like she was peddling a bike almost non-stop. I gave her Motrin and homeopathic remedies for "gas” when she seemed really uncomfortable. I used onion, potato and lemon poultices (onion, potato and lemon rapped in cheese cloth and placed on her chest) to help keep her airway and chest clear. I so desperately wanted to find an acupuncturist or naturopath to try to help her, but my time and brains were taxed by Katie and her big sister. I was given morphine about a week before she died and encouraged by my hospice team to "try" it to make sure there were no adverse affects, but I was never able to make myself administer such a powerful substance to my baby until her last day, and before we "pulled" the oxygen, we made sure she a full dose so that she would pass a peacefully as possible. |
posted Aug 24, 2011 4:58 AM by mindee vance
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updated Aug 25, 2011 3:22 AM
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What this means? Your child has SMA and depending on the age of onset, one of four types. Type 1 has an onset age of zero to six months and is the most severe with outlook and life expectancy not very bright. Katie, type 1, symptoms were noticeable within days after her birth (in hind sight). She lived to be 5 1/2 months old with next to no medical intervention (we used suction as needed and cough assist as needed). She was breast fed until the day she died. She gained weight normally (9lbs to 14lbs in 5 months). We kept her muscles moving and flexible with PT, stretching and assisted exercise changing her position often from side to side, back and belly. She took baths 2 times a day where she could move all of her limbs on her own. She was "perfectly healthy" until her last day, when we administered O2 for the first time and realize that her lungs had finally gotten to a stopping point. When we took her O2, she fell asleep in our home, in our arms within a few minutes. Hospice was here to take care of all of the details and for the first time in 51/2 months, we were all able to sleep through the night.
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posted Aug 18, 2011 3:50 AM by mindee vance
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updated Aug 25, 2011 3:31 AM
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Yes. There are a few Type 1 Children who survive. I think hope and in most cases faith have a lot to do with it. In most cases, life support mechanisms’ are in place, feeding tubes and tracheal tube or BiPAP is used.
I chose to avoid these devices. In my mind, since Katie was still in infantile development with normal sense development and cognitive ability, I could not bear the thought of her being subjected to surgeries, hospital stays and foreign objects being place in her body. It was my understanding and belief at the time that she had no chance of survival. I was not going to subject her to unnecessary medical procedures and medicines that may prolong her life, but ultimately offered no cure for SMA and would possibly cause more discomfort and chance for infection.
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posted Aug 18, 2011 3:40 AM by mindee vance
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updated Aug 26, 2011 2:53 AM
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"How do you know a baby has SMA " - the only way you will be sure is by blood test. If your instincts are telling you something is NOT RIGHT, like your baby is missing milestones by large margins. Get a test.
In my case, my older child was just 16 months when Katie was born so I had a fresh comparison. Granted, all children develop differently, however Katie couldn't bend her knees by the time she was 3 weeks old. Her limbs flopped like bean bags when they were not supported and she was never able to lift her head. She could roll it back and forth, very slowly. With therapy, she did get stronger but ultimately SMA won. |
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