Wednesday, 5 February 2014

Asking For Your Support In Our Next Step

I never in a million years thought I would be doing this, but here I am.  You will notice (or please notice) a new feature on the blog in the upper right hand corner.  It is a PayPal button that says “donate now” with the title “Nate’s medical fund”.  I have been asked to do this multiple times by friends and family.  I have always said no, we will be fine.  I have turned down all offers, except for a swing (thanks MeghanJ) and then an anonymous donation made in Nate’s name to Cisco Center last year- which happened randomly and with no requests- just some amazing person who wanted to help.  Well, we have reached that point.  If you read my post last night, you know that I have been feeling lost.  Well today I spoke with Nate’s pediatrician, several experienced autism parents, my mommy, and of course John.  Here is the conclusion I came to:

We have exhausted the options for Nate that are covered by insurance.  I have taken him to the only “DAN” doctor in our area that takes insurance- Dr. Brenner- he can only take us so far.  We have been to Kennedy Krieger and done the SEED study, we have been to NIH and continue on the Aricept study (with some small improvements).  I have given Nate injections; we have tried very strict special diets.  We have tried, I would say, close to 30 supplements.  If anyone wants to try something, give me a heads up, I have a cabinet full of residuals (like all autism parents).  We have done OT, early intervention, ABA, massage, brushing, transdermal creams….with some improvement.  So here are my options- accept that Nathan is getting help and hope that in time he improves, or push further.

As I was watching him in his private speech evaluation today I couldn’t help but think that we are not done here- not by a long shot.  The speech pathologist tried so hard to engage him, and his stimming was just off the charts- teeth grinding, humming, dangling paper, running laps, flapping….the whole enchilada.  The speech pathologist also happens to be a holistic nutritionist (convenient no?). She asked me about yeast.  Well yes, I do believe he has yeast, thanks for asking- he gets better while on antifungals and regresses almost immediately when we stop them. Same with antibiotics.  Each time we start a new supplement, there seems to be some minor improvement, and then he reverts back, and in my eyes, sometimes seems even more affected.  I have done a ton of reading and I have been to conferences, listened to many practitioners present their theories. 

The one that has resonated with me the most was presented by a physician in Illinois, Dr. Anju Usman.  She is a pediatrician who became interested in this field when all of her children had autoimmune issues.  She became entrenched in figuring out why these conditions have become so prevalent in recent years, in what is causing all of this.  Here is her practice’s website:

Here is some information on her research and treatment plans:


http://www.autismpedia.org/wiki/index.php?title=Protocols/Usman
I will not even attempt to explain all of this.  Here is what makes me feel strongly that this is the correct direction for Nate.  Dr. Usman believes that much of our kids’ autistic behavior is caused by chronic infections, mainly in the gut, which produce substances that impact cognition.  On top of this, kids like Nate, who have the MTHFR mutation are more susceptible to these to begin with because they have impaired ability to fight these infections off.  Because of this, they end up on antibiotics when little- a lot (check for Nate).  The antibiotics also kill off the good bacteria that keep yeast and other pathogens at bay.  This allows for overgrowth of these bad bugs.  On top of that, the bugs feed on many of the things our kids are deficient of (vitamin B12 for instance).  So lab results show deficits.  What do all of us responsible parents do?  We SUPPLEMENT.  We supplement the bugs, help them grow.  This would explain why initial improvement is seen with a new treatment and then it stops being effective.  These bad bugs form what’s called a “biofilm”, which is a protective layer that keeps antibiotics and other agents from penetrating and killing them off.  So antibiotics and antifungals will kill the bugs that are circulating- but they just come right back, because they are protected.

The goal is to break up the film, treat the bugs, and rid the body of toxins.  For those of you who don’t know, I studied biochemistry before I went to nursing school.  This just makes sense to me.  It makes sense.  Nothing has made sense in a long time.

So maybe you think I am crazy.  I’m ok with that.  This is the one avenue that I have not explored that I have a reasonable amount of confidence in.  Our pediatrician is extremely supportive of us exploring this.  She is brilliant, and that helps.  For those of you who think I am torturing my child for naught, I will tell you this.  Nathan is lost.  I know my child.  I knew him before autism.  I held my neurotypical child in my arms for 18 months.  I received assurances from all directions that unlike Jack, he had great eye contact, was babbling, was then speaking, and was playing with toys appropriately.  He was so happy, he slept.  All beautifully boringly normal.  And that changed.  I saw it change.  Today I had a jolt of memory while we were in the speech evaluation.  The speech pathologist was holding a ball out to Nate and asking him to throw it (he didn’t do it, he mouthed it).  I suddenly flashed to Nate at 16 months standing in the foyer with his daddy playing catch and SAYING “I throw ball”.  And I will never get the image of my beautiful responsive son out of my mind.  And I will never stop fighting to get that back.  I cannot live with myself unless I know I have done everything I can to help him.  I have to move forward with this- now- I have been dragging my feet due to my fears, and our finances.  No more- this needs to happen.
It will likely take us 6 months to get an appointment with Dr. Usman- because there are many parents like me going through this exact same process right now.  Of course, like all of these practitioners, Dr. Usman does not take insurance.  Our initial evaluation, with travel, and lab tests (also likely not covered) will be a minimum of $2000 to 3000.  Minimum.  I am not going to let this stop me- and if it helps Nate then we will need to do it for Jack too.  So to the family and friends who have been asking- now is your chance to click the button and help us help Nate.  I am waving my white flag, and we thank you from the bottom of our hearts.

16 comments:

  1. The swing wasn't a "donation"- just a hand me down amongst special needs moms! We have to stick together. Hope it is working out for you guys!

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    1. Fair enough:-) they love it by the way!!

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  2. Jenny, I don't think you are crazy at all. If you see improvement while he takes antifungals and antibiotics and then regressions after the first few days it makes perfect sense to suspect and go to a doctor who is skilled in diagnosing these types of resistant infections and it truly does make sense that his brain would not/could not function properly if the "bugs" are causing inflammation, infection, and taking needed nutrients before his body can process them. Asking for help when you need it is courageous and strong. I will be praying for you and your new mission.

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  3. Hugs... Nathan sounds so much like Sophie. she regressed too... I will be keeping you guys in my thoughts.

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    1. Was just reading that last night! They have so much in common- my hubs and I love and hate watching early videos. Thanks so much for your consistent care and support

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  4. We have a similar case, regression. I feel the neuro-inflammation theory makes more sense, but we are still not sure about it.

    - chronic infections, mainly in the gut, which produce substances that impact cognition. –
    does not make lots of sense to really.
    We believe it is neuro-development, right?

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    1. I have also heard dr rossignol speak more related to this theory- he and dr usman actually work in conjunction with each other on some cases- I do not believe the two theories are mutually exclusive

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    2. Dear Jenny, Before committing all the things, better ask some Dr Osman’s patients’ independent experience if possible?

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    3. I agree that is very important. I have done this. 3 different families, I will quote "I have never once regretted taking my son to her". That being said I have been reading for hours each night about our different options. I will not be close minded none of us can afford that!

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  5. Please don't waste your time with Anjum Usman. She has been charged by the medical board and is a quack!
    http://www.casewatch.org/civil/coman/complaint.shtml Also see: http://www.casewatch.org/board/med/usman/complaint.shtml

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  6. This is an article in the Chicago Tribune about Dr. Anjum Usman http://www.chicagotribune.com/health/ct-met-autism-doctor-usman-20111014,0,1175161.story

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  7. Haley I really appreciate you looking out for us. Have you thoroughly read these articles? Both Dr Usman and Dr. Rossignol (the other top specialist in the US) had cases brought forth due to a divorce and custody dispute in which mom wanted to treat the son biomedically and dad did not. The doctors were unaware of the ongoing dispute and took mom's word for it. I filled out the intake form the other day and one of the first questions was "will both mom and dad be willing to attend the first appointment to give consent?" In terms of her treatments being unproven, untraditional etc, that is completely true. Not enough research has been done on these treatments to label them "proven". That can be said for many many treatments out there, including using medications off label for a condition the FDA has not yet approved as a valid use. I am not worried about that. I studied biochemistry in college. Unfortunately mom's have to become researchers when their kids have autism. At least I have the advantage of some background knowledge. Again thank you for your concern. I was fully aware of the situation.

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