Struggling and Losing Hope

I really am struggling.  I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational.  I don’t feel like an inspiration right now, I feel useless.  I feel like I’m doing it all wrong.  I feel discouraged.  I feel exhausted. 

This is all about my fear for Nathan.  My limitations when it comes to helping him.  It’s about the fact that at age 3 and a half he is entering his third year of formal schooling.  It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me.  Here I sit.  Still waiting.  I sat down and really read his IEP update from the extended school year last night.  He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was).  The biggest issue is consistency.  Even if he does something fabulous, getting him to repeat it is impossible. I know this.  There are days that the words just flow, and then nothing, sometimes for weeks.  I know what it is.  It’s the “noise” as I call it.  He can’t focus; the need for stimulation is so intense, especially tactile and visual.  He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there.  If you do it “wrong” he moves your hand back, as in, try again buster.  He waves things in front of his face at every opportunity.  He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face.  He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face.  He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face.  If none of this is available (and God knows I try to keep it away from him) he now uses his fingers.  Several people have said “oh look he learned to wave”.  I want to smack them and say, “No moron, it’s stimming”.  Once again- grace.  I smile and nod.  If that’s what they need to believe then so be it- I don’t have that luxury.

If we could calm the stimming he could make progress I just know it.  That’s why I have tried the diets, the supplements.  Why I haven’t given up, why I keep adding them.  For the past two years.  To be honest, today I feel like giving up.  I gave him nothing this morning for the first time in years, and I know it won’t matter.  We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so.  I spent 20 minutes on the phone with him again this morning- what was I doing?  Reading him what is in the cocktail he wants Nate to have.  Because he didn’t know/remember.  I’m ready to throw my hands up and say never mind; ready to give in. 

But something made me make the call to his doctor anyway.  In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again.  And I will give the supplements to Nate tonight; he missed one dose, big deal.  I will keep on going.  Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before.  My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb. 

Mommy and Natey Time

OK, the first part of this will be whining, but I'll get it over with as quickly as possible ok?  Earlier this summer I had scheduled myself to be off of work all week in case the funding for Cisco Center didn't come through.  Then it did, hip hip hooray!  So in a shocking and selfish move, I kept two days all for me- planned to work this mon, tues, wed, and then take off the rest of the week to get organized for the school year, buy school supplies and consign stuff that doesn't fit anyone anymore. 

Well first, I had to schedule a study appointment for Jack- there goes Friday morning, so John and I just decided to get the boys early from Cisco and take them to see Planes in the afternoon ( I am Soooooo excited).  Then last night I hear hacking from Nathan's room; then sneezing, then coughing.  He ended up sleeping with us last night and there was no way I was going to expose a room full of special needs kids to an illness- talk about a death wish, lol, so I kept him home.  There goes Thursday.  I won't deny that no matter how much I love the kids, I was really looking forward to this time.  Like REALLY.  So I was pretty bummed. 

But then Nate and I snuggled in my bed until almost 9, and had a leisurely breakfast, then we played for awhile.  He seemed ok, so we went ahead to the consignment shop and dropped off a bunch of clothing.  And he still seemed fine, so we went to Marshall's, where we spent time just looking at toys and books for him.  He was beside himself with happiness, either over our one on one time or the toys, couldn't quite tell.  When we were done, I plopped him in his seat, walked around, got into mine and turned around to this....

It appears it was the mommy time that he was happy about.  I am sure he was thrilled to be the one and only for a day- this happens so rarely.  This smile completely turned my day around (although honestly, I was already happy).  We went home and ate lunch, and then we both took a nice long nap- he's still sleeping.

 

In a stunning climax, I checked my messages and got the BEST EMAIL EVER from the compounding pharmacy.  They ran Nate's mitochondrial cocktail through our insurance (finally) and guess what???? IT'S COVERED!!!!!!  With a $35 copay.  I. am. ecstatic!!!!!!  So we should be getting a 5 day supply by Monday- the flavor will be chocolate cherry.  If he will take that, then they will send his full prescription.  If not, we'll try another flavor.  Victory is sweet!!! And apparently so are mitochondrial cocktails!

My Confounding Compounding Issues....

It’s been about 3 weeks now since our last visit to the developmental pediatrician.  I was given many “assignments” for both boys, as always.  After about 15 phone calls and just as many emails, I think that I have found someone who can compound the ridiculous number of supplements that the doctor wants Nathan to take- without sending us into bankruptcy.  To refresh your memory, or in case you missed that post- it was approximately 11 pills, 2 powders and 9 teaspoons of liquid.  Nate is 3 and doesn’t take pills.  I have continued giving him “some” of the supplements, the ones I have deemed to be the most important, by hiding them in his food and drink, just until we come up with a more permanent solution.  He has been a pretty good sport about it and by now I can gauge how many things I can add to his beloved cup before he rejects it.

It was way more complicated to solve this issue than I had originally imagined.  Our regular compounding pharmacy was pretty slow to respond and their “cocktail” was a pretty standard formulation which they did not seem very willing to alter.  I found another compounding pharmacy that was eager as could be to assist me.  This sadly should have warned me of what I was in for.  I gave them all of the supplements and doses and after several days they called me to let me know that they had come up with a liquid formulation that would be twice a day.  Awesome!  Ha, not so much.  A one month supply of the compound was….wait for it….$250!!!  And they do not take insurance.  This would be in addition to the other supplements both boys are already on.  And if it proved to be helpful for Nate we certainly would want Jack to try it too- there was just no way. 

Back to the drawing board.  I located another compounding pharmacy who wanted to speak directly with the doctor- after many, many attempts we finally made this happen.  I called to check in with them yesterday and they said they need a little more time, but it looks doable, and they estimated the cost to be about $60.  This sounds a bit more reasonable to me, and they suggested I speak with our insurance company to see if compounded vitamins are covered, as they will provide me with the appropriate paperwork for reimbursement if that's a possibility.  I am not holding out much hope, but even if they don’t cover it, we can handle this, especially if it works!  They are also able to provide a flavor that will be palatable, and keep it gluten and dairy free.  Ironically, they are 5 miles from our house- who knew?

Anyway, keep your fingers crossed that we have really finally solved this issue- oh and also that it helps!  After all of this….well I am just praying.

Uncle!!!!!

I am crying uncle.....

OK, first of all, I want to let you know that I recognize and appreciate that my child is not suffering from a life-threatening illness.  I am so grateful that the supplements we are instructed to give him are to improve his life, not save it.  However, the picture above is of all of the supplements Nate needs to be taking right now, at least orally.  The shots and creams are not included.  The omega bottle is 2 tbsp a day, the red bottle, 9 tsp a day, and then the three powders, and 10 pills.  Nate of course cannot swallow pills so all capsules have to be opened up and hidden in drink/food.  Almost all of the pills are parts of the "mitochondrial cocktail" he was prescribed by the developmental pediatrician last week. 

Here is a bit more information on this:

http://www.autismfile.com/science-research/has-your-child-with-autistic-symptoms-been-properly-screened-for-a-subset-of-mitochondrial-disease-known-as-oxphos

This is all well and good.  I am enthusiastic about trying this with Nathan, and possibly Jack in the future.  Both of them had lab values that indicated this could be helpful for them.  But I have come to the conclusion that with the current supplements we have, getting all of this into Nathan is just not possible.  I have hidden things in his drinks (which I have been doing for years), I have tried mixing them with spoonfuls of maple syrup, almond butter, jam, and chocolate syrup. I have tried tucking the powder inside a fish stick, inside a chicken nugget.  I even tried in his fish oil (it's mango flavored).  Not gonna happen.  Now- in the past, (soon after diagnosis) he didn't notice or care about the odd tastes or gritty textures of the supplements.  I would bake calcium, vitamin c, and a multivitamin into his almond bread and he would gobble it right up.  So, his increased awareness is obviously a good thing, however, in terms of giving him supplements, I am screwed. 

I started doing some research on Saturday night because I figured there are lots of people confronted with this issue. 

I found this:

http://www.mitoaction.org/blog/qa-compounding-pharmacists

A compounding pharmacy assists mitochondrial disease patients by providing vitamins and supplements in a compounded capsule or liquid form depending on the needs of the adult or child patient.  There are many benefits to working with a compounding pharmacist.  Primarily, a compounding pharmacy can combine the vitamins/supplements in order to minimize the number of vitamins and supplements required, as well as to make the medication more patient more palatable in liquid or capsule form. They work closely with the patient's physician and take into consideration the patient's diet and diet restrictions as well as the overall medication plan.  A compounded medication is then developed which is unique for each patient and his/her specific treatment plan or prescription . The formulas are based on multiple variables, including the prescription, the patient's symptoms, the patient's diagnosis, weight, allergies, physician recommendations, etc. The goal is to work with the physician, patient and pharmacy in order to develop an ideal mix  (or "compound") of these vitamins and supplements that offers the patient the most ease and the least side effects.

We have been working with a compounding pharmacy for about two years now (www.leesilsby.com), they provide the boy's methylcobalamin shots, and we order most of our supplements from their sister company (www.ourkidsasd.com).  To give you an idea of how useful compounding pharmacies can be- they ensure medications are gluten and casein free, they use very "pure" formulations, and they individualize medications as needed.  For instance, when we all had influenza A last winter, tamiflu in liquid form was out of stock everywhere.  We have a local compounding pharmacy, right below our pediatrician's office, and when I took the script there after trying all of the traditional pharmacies who couldn't help me, they said, yeah we're out of the liquid.  That's why we are opening the capsules up, re suspending them, and adding flavor.  I mean really- this is not that difficult.  How many kids could have benefited from this last winter if only they had known this was available? 

So I went to the Lee Silsby website and typed in mitochondrial.  Under the list of "medications we carry", lo and behold was-

Mitochondrial Formula Suspension

I emailed them immediately and heard back from them this morning.  They are going to consult with our pediatrician and work on a suspension that will be much easier for us to give to Nathan.  Thank goodness for this, keep your fingers crossed that it works out!