WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, November 13, 2012

The Mito Protocol Would have KILLED Abby.

So a bit dramatic, but the truth.

You know what that picture is of? Dust. Dust off her wheelchair. This picture says everything about Project Elimination- Dust means we aren't using those wheelchairs.

As we creep up on a year of cutting the ties to traditional medicine, I look at Abby and marvel.

Abby was "off" from the womb even. When she was born she did not move much. She was happiest tightly swaddled at all times. Nursing was a NIGHTMARE!

That was 17 years ago, before Mito was known to anyone.. it was just being discovered as a disease in just one or two research hospitals. I thank the Gods daily that she wasn't born today. Had she been diagnosed with a depletion from that first muscle biopsy before her second birthday- she would be dead.

Constant ear infections, no sleeping, 3 minutes of nursing and 10 minutes of fussing. Constant calls to the lactation consultant in Oregon(who helped me with Sara being preemie) while we lived in NY. I managed to live on pink lemonade and rice for months- Abby seemed happier with that flavor of breast milk..no smiling, floppy, cellulite all over torso- winging shoulders, you could not hold her around the middle, she would slip through.. could not sit without leaning over a ball to stay up, could not keep her little head up...

I knew something was wrong. I asked the Ped every time and she just kept telling me Abby was just a fussy baby, or she would catch up.. to quit being a worry wart. That I held her too much and she needed more floor time, I was too sensitive.. By 10 months I knew breastfeeding was going to end and with a lengthy history of severe food allergies(My Dad spent months in the hospital as a little one and was slow to met his milestones, my little brother was allergic to everything and survived on a meat based formula)I just knew she needed an allergist. The Ped said no need, babies that are breastfeed don't have allergies, Abby was a chunky baby- nothing wrong- move along. Finally got a referral to an Allergist. And changed Peds. Little did I know at that point that our beloved Crabby Abby was going to have a challenging life.

Looking back, had we not taken Abby to that particular Allergist 16 years ago, Abby would be dying or dead instead of healing today.

I have his waiting room and patient room imprinted in my head like I was just there yesterday. I can see all the signs saying no perfume,makeup hairspray please.. The light filtering through the old 70's wooden blinds.. the worn and scratched wood floors- and his face. Near retirement but a face so full of compassion, wisdom and kindness- hard to forget.

The skin testing on a baby - terrible. I know my friends thought I was torturing her- the old Ped sure thought allergies were no big deal.. but I trusted his face. I hate to say it, but even today fifteen years later, Drs. tend to blow off allergies and food intolerances- they don't understand or believe that food/medicines can kill slowly as they understand quickly.

Indeed- some wicked responses to that testing- like everything! Who the heck is allergic to corn? Tomato?

We only did some foods but he sat down with us and we talked. He did not think we needed to test further, you see, he had seen Abby's before.

He warned us that Abby was "unique". Things were going to be tough. Her allergies were going to rule her life. Whether she did well or not would come down to me being completely plugged into her, to be super sensitive to her every symptom. He explained to us that allergies were still a very unknown part of medicine and often disregarded. He explained that skin testing,blood testing were often not accurate and not to trust just the testing, but trust what we saw Abby do well or poorly with. He explained rotating foods, the top foods to avoid until she was old enough to verbalize with us. He warned us that some allergists if no positive skin test will tell you that you are not allergic, when you might be. That many other Drs. were never going to believe that food could make Abby this sick. He warned us about medications, environmental allergens..

Keep in mind I was in my early 20's. It has taken until now for me to fully understand what he was warning me about... he was right- out of the hundreds of Drs. Abby has seen over the years, he was the only one that had it right.

We tried to comply. I remember a lot of rice, carrots, and peaches- she seemed happy to eat those. She would cross her eyes at us to show approval, smiling was rare it seemed smiling just was too much work for her- crossing her eyes to smile scared me to death and reassured me she was in there somewhere behind that soft expressionless face...

Sara was so sick with severe asthma. In and out of the hospital. I had no family. Derek was on rotating shifts as a Nuclear Instructor in the Navy. Abby was less fussy but still so floppy. I was at my wits end, I honestly have weeks of blacked out memory from that year or two- so incredibly sleep deprived. I scrubbed and washed and kept the house sterile with Abby wrapped up on me to keep her content.. breathing treatments every 4 hours to keep Sara breathing.. This was not the white picket fence and laughing cherub children I had planned on-

Finally, after dislocating elbows and her learning to pop them back in herself.. still not meeting milestones around 16 months we saw a Neurologist. Within 30 minutes the Neurologist told me, your daughter has some sort of Muscular Dystrophy.

I was with a friend because Derek was on duty. I cried the hour drive home. I cried all night. Muscular Dystrophy was what Jerry's kids had. I thought it was just allergies. I knew that afternoon that our world was never going to be "normal". I knew after a preemie, a lost baby, and now Abby that we would have no more children. Frankly, I am not sure how I made it through those following months- I just don't remember a whole lot. The internet was just starting to show up in people's homes and really only the "rich" folks.. I remember about 6 months later a friend got a computer and the "magic internet." I looked up the MDA- back in the day not much, I had to depend on what I could find at the library to learn anything.

We drove all over the East Coast seeing Specialized Neurologists. The Developmental specialist team thought she had IFSH. That was a death sentence. We started,PT,OT,Speech, I did what I could to not feed her allergens.. she did seem not be getting worse, and maybe doing a bit better.. finally we saw a Dr. who researched IFSH and he said he thought the diagnosis was wrong and it was time for a muscle biopsy. We did the muscle biopsy and waited months for results.. but, in the meantime she was "waking" up.. we started noticing her smiling more.. doing more.. talking. By the time the results came back we were full of hope. The biopsy only showed a myopathy- between that and the improvements the Neurologists felt she would only continue to improve, she might "outgrow it". HOPE! My memories are much clearer from that year on. We watched her outgrow a lot of the hypotonia.. outgrow many of her allergies.. granted some odd things hung around over the years.. she would get tired out faster, caught every cold, would get sick or faint if overheated or cold..leaky bladder.. but, that was what happened to me, my brother, my Dad and others in my family, we all "outgrew it". I just figured whatever it was, Abby just got a bigger dose. Sara was "outgrowing" her allergies and asthma.. both girls were proving to be intellectually gifted. So they weren't ever going to be athletes- no big deal to me!

Public School was a challenge. Without a "diagnosis" (no one takes allergies serious unless you write "anaphylactic" beside it and they had never heard of a undefined congenital myopathy) we had some issues, and of course academically school was boring.. It was easier and healthier to home school off and on over the years for both the girls.

When Abby was age 10 we got the opportunity to move back to the Pacific NW(where both my hubby and I grew up)we were so excited to share the culture with the girls. Little did we know what was coming.

She crashed. Lost a ton of weight. In horrible pain. Slept around the clock. Fought to climb the stairs. Soon we were petrified that whatever illness plagued her as a baby was back. I ran to the allergist- we eliminated everything. We tried steroids, nothing helped. It seemed medicines just made it all worse. The latest skin testing show far fewer foods, so it couldn't be the food right? Cedar trees maybe,right? 6 months later we tested her skin again, a whole different bunch of allergies- what the heck? She developed scoliosis/kyphosis overnight. The orthopedic was certain that we were not dealing with allergies anymore- this was neuromuscular. No.

We blamed the environment- we figured she had done so well in Texas we needed to move back. Of course this was during the big real estate crash- we lost everything, but we got her back to Texas. She did seem to perk up a bit, but things started getting worse. More fatigue, now kidney disease.. hair falling out, toenails dying- my God we thought, what is wrong with her?

She still pushed she managed some college and finally it was just too much.

They found the depletion in a second muscle biopsy. It shocked everyone- Despite being homebound and all the mounting health issues, she had never needed the hospital- no critical life or death. She was intellectually gifted, hearing great, eyes great.. She doesn't look like Mito.

After learning about the Mito, we tried to be compliant and try the cocktail- but it made her sick, it made her worse, though I think everyone else just thought it was the disease progressing. Her GI shutdown finally, and we tried supplemental formula's a number of them, and she and I agreed- they made her worse, though I am pretty sure all the Drs. felt it was just the disease progressing. She developed steroid diabetes.. the kidney disease, I have never felt such horror and fear. No way was this the disease progressing, it seemed everything we tried would make her worse- though everyone but us thought it was disease progression. How many 16 year olds have Depletions and bounce back? My gut said they were wrong, maybe just denial, who knows? Our denial, and fear, and that visit years ago to that Allergist saved her life.

Once I witnessed the supplemental formula's making her sick, I could not think of anything but that kind Allergist we saw at the beginning. His warning of how Abby was unique- she needed me to be ultra sensitive to every change...

When Abby hit the chicken broth only last year and that GI scared us to death talking about feeding tubes- We leaped. We took the leap of faith that there was a better way then the protocol, because my gut said the protocol was making her sick was going to shorten her life- that the depletion wasn't.

That day Project Elimination was born- she has gotten better by the day. We threw out the supplementals, we threw out the cocktail, we threw out the miralax, the meds- each thing we removed offered her a mild improvement.. each day we eliminated more chemicals, more colors, more meds, removed vitamins, removed anything fortified, removed it seemed like everything!- she got better. We threw out the Ace for her kidneys... and she got better.. and better..

What if Abby was 2 today and they found the depletion? What if her GI shutdown as a two year old with a Depletion diagnosis? They would have put a tube in her and packed her full of supplemental formula. She would have gotten sicker and sicker.. it would have ended badly- Without a doubt, I know it would have killed her. Her kidneys would have gotten worse, her dysautonomia, line infections, more meds with more side effects making her worse- and everyone would have assumed it was just disease progression, and not the Protocol killing her.

Had I been the trusting type last year when we saw that GI, had I had any faith in medicine when it came to Abby- she would be dying instead of getting better.

Abby is unique- but though we would all like to think she is one of a kind, I cannot help but wonder if there are others out there like Abby, who trust without question that their only option is the Protocol? That as they watch their child progress that maybe some of the treatments are making their babies worse?

I don't know what is wrong with Abby. We have 1 unique mtDNA mutation, but that isn't unusual.. so far nothing has turned up in the nDNA...I know she has had a lot of different diagnoses in her short life and none seem to stick around long,beside the allergies. I don't know how to cure her- clearly, it is part of her. But, I know food is the treatment. I know Modern medicine was wrong, at least on this.. I know that kind old Allergist saved Abby's life, more then once now.

Maybe Abby will get stronger and stronger. Maybe she won't. But a year of steady progress in the right direction makes me hopeful that we can find a way for her to live in harmony with this unknown illness- If it is Mito? Why is she getting better? Why would the protocol nearly kill her? If it is Mito, it is a type that they don't recognize yet. But we do. Maybe Dr. Lipton and his observations about "perception" being more important then DNA is what working for us.. Who knows? I really do think that next fall I will be posting a pic of her heading back into the college for a class and with no wheelchair.

IF this is just the placebo effect? It is more powerful then Modern medicine or the Mito Protocol.

Trust your Gut- you know more about your body, or your child's body then anyone. Ask the questions. IF you think something is making matters worse, it is possible that it is.. it might not be the mito.

Maybe Abby will get worse again, maybe we will have no choice at some point, I don't know. Maybe it is the Mito. Who knows? Never say Never, right?

What I do know is this is working now. Be it placebo, be it luck, or be it the crap they put in our food these days, we are rejoicing in her improvements. We are appreciating every moment- and listening to our guts. Though the Mito Protocol works for many patients, it did not work for Abby- it made her worse.

20,30 or 50 years from now, we are going to look back and realize how very little we knew about Mito. Our era will be seen as the era of Mito guinea pigs, there will be collateral damage - some will come out on top of the learning curb, and some won't come out at all.

Maybe next year or the year after, Abby will be able to leave the house again without getting sick. Maybe we won't be wondering about Mito,Mast, allergies- cause we will know. Maybe I won't be dusting her wheelchairs anymore, because we don't need to hang on to them anymore for that "just in case." So I hope.


Reagan Leigh said...

WOW, great post! I think a lot of families would benefit from reading this! I think way too many people blindly trust these doctors, when in reality they know no more than we do (sometimes less)! Reagan was similar to Abby, SUPER fussy baby (everyone said it was colic), bad breast feeder, worse sleeper!!!! This makes me want to have her allergy tested! She gets neocate jr through her gj-tube, so I'm not sure if there's anything else we could even switch to! (It's supposed to be the most elemental hypoallergenic formula available!)

Diane said...

Yes, I think Neocate is the "cleanest" still got Abby- sigh! Warning though- a bunch of kids are suddenly having a bad time using the newest lot of the Neocate- they changed the formula! So if Reagan suddenly has a bad spell try an older can - I sure wish they would warn parents!
Abby was called "crabagail" or crabby abby till she was 4! Even then she wasn't sleeping through the night! Breastfeeding was TORTURE at best.. I have heard from other mito families that their babies were similar too.

Until last year I had no idea how many allergens are in vitamins or meds! Full of corn,soy,dairy, PEG(miralax allergy). Even compounding vitamins doesn't get rid of all the corn derivatives- sigh! But, she is getting better slowly so I need not complain. and we got lucky she was mild when she was little- if she had seizures we would have to use medications- there are no options it is the best that can be done. I am with you, Families need to ask the questions you and I ask of their Drs- Mito is unknown, so therefore so are the treatments. Hugs! Hope Reagan is having a great one today! From your posts she sounds still on edge :-(

Laura said...

I know you don't want to hear this, but you are a great Mom!! Abby and Sara were given to you for a reason.

As you know, while my Will follows some of the "mito protocal", he had a severe reaction to all forms of Carnitine and cannot use steroids for his asthma due to steroid induced myositis. We don't have many answers from his biopsy either, just that it was not normal - too many mito, irregular mito shapes, etc...However, in his case, many of the supplements have helped him. We are waitng on the latest metabolic testing to see where he is today.
When he was younger, and well before the mito diagnosis, his asthma was so out of control. The doctors kept adding ( not changing, but adding) medication after medication. he became crazy aggressive! When I thought to myself, what has changed? He is not like this! I kept coming back to the medications. As I researched, I discovered that he was on 3 separate steroids and two of the asthma meds are known to cause fatal asthma attacks. In addition, another med for allergies, Singulair, was later given an FDA black box warnign for causing suicidal behavior in children. As we withdrew each medication one at a time, he returned to himself. His teachers could not believe the difference and resulting pleasant little boy to be around.
I learned then and there to trust my gut. I have had doctors write in their notes that I am uncooperative and not compliant and crazy for thinking he could react to any medication. To heck with them ( I am being really polite here)!!
Do what works. I hope I can meet you, Abby and Sara someday!

Diane said...

Laura- right back at ya! :-) I sure hope I did not come across as "anti- medication" .. I am anti- medications that are prescribed because of a diagnosis and not because they are needed. :-)

I love ya cause I know you too are a "trust" the gut Mom! :-) Yes, we are both part of the non-compliant patient label- if I don't know what it is, what is in it, and how exactly it is supposed to help- not gonna try it. :-)

Yes, we do have to met! Not this weekend, but the following I will probably be up that way to hit your wonderful little health food store- I promise the day before to call or send you a note! :-)

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