1 year later – a little late October 15, 2010

Thursday night and I am tired. I didn’t disappear I’ve just been getting into the groove of the school year. Thanks so much for following me, it looks like I still have some die hard blog followers.

On October 1st of last year (2009) I bravely took my journal out of hiding and started keeping track of P’s words. P was 3 years 4 months old when he finally started talking. One month later I stopped journaling because I was not able to keep up. Today I am still not able to keep up with documenting his progress. Yeah P!

P is a big old boss. He can boss me around any day of the week. He likes to tell me when to sit, where to sit, when to stand, where to stand, demands a particular snack (and only that one will suffice), what show he will watch, and if he will even direct me saying “that way” to his favorite store, Target. Oh yes he gets his sense of directions from his momma, so he knows exactly where to go.

And the reality check is that there is still so far to go. I am little embarrased to say but I applied for a handicap placard for P. Our pediatrician thought it was great idea. As I have said I can’t physically handle P anymore. He is more than half my size as a 4 year old and weighs about 53 pounds. He refuses to hold my hand and will rush into traffic if I am not on top of him. The other day I was scared I would have to enlist a store employee to help me get him out of a store. I use to nastily stare at the parents who had their children on leashes. Boy do I now wish I could find one for P that would fit him. I have a game plan for each and every store I may have to enter with P. This usually means I have to enter a P perferred store before I can even go grocery shopping. I have had store clerks yell at me for keeping him in the big part of the cart and random passerby’s telling me P is too big to be in a stroller.  Recently an ignorant teenager said  ”put him on a leash” as I held P sideways facing away from me kicking and screaming so he wouldn’t hit me, he had already punched and hit his dad knocking his glasses off his face.  The teenager was very lucky I was holding P.  Although I would love to see them handle him even if he wasn’t tantruming and gave the group of teenagers the I want to kill you stare. I can only focus on educating people on what P’s disability means. His disability is not going away we just have to adapt and be flexible to his needs.

To get me to the next day I only think of the good.  P has surpassed the normal skill level expected for so many children diagnosed with Autism. I want to give a big fat tongue stick out to the nuerologists who gave us no hope.  And hope to stroll into his office one day and have him undiagnose P.  I have so many firsts to look forward to this year.  I am a little over 2 weeks away from hearing him say “trick or treat” for the first time.  More importantly everyone else will hear him say it too.

Mr. DAN Dr. visit #3 January 29, 2010

Phew finally.  After a cancelled appointment due to traffic, a rescheduled appointment, another reschedule appointment because I was smart enough to get on the cancellation list and finally a drive through white out snow conditions, I made it to our 3rd DAN Dr. appointment.  So this visit I got to review with Mr. DAN three more test results.   While I already had copies of two of them I had gotten them after my last visit so I didn’t get to talk with Mr. DAN about them.

Urine Toxic Metals – yes and thank you, thank you, thank you.  A test result that did not come back awful.  All metals were in the green ok zone except for Lead which was only minimally elevated.  So we may not have to chelate or just do a topical lotion for chelation down the road.  But Mr. DAN told me this was something we didn’t have to worry about for a while because the results weren’t bad at all.

IgE immediate and IgG delayed food allergy tests – So I have already discussed our results on this one but I ask Mr. DAN what this meant in the long run.  He would not be specific but said that we may be able to add back in eggs at the end of April.  That would be awesome because so far this is the hardest.  For eggs he tested 1 & 2′s but the 2 was borderline 1.  Again some good news.  Gluten and Casein unfortunately are gone for awhile and especially Casein because he tested very high for Casein sensitivity.  But I am ok with that. I don’t think that the Gluten and Casein removal is that hard as long as I can add back in the eggs.

Metabolic Analysis Profile – So I am fuzzy on the details here and feel a little bit like a mad scientist trying to decifer it all.  But from my general understanding my son has these imbalances and deficiencies due to his inability to process (metabolize) his foods.   The results point us in the direction for what vitamin supplementation he needs and how to treat his hyperactivity.  So two key results that show his need for B12 and other B vitamins are Methylmalonic Acid and Formiminoglutamic Acid.  My son was way way in the red for both of these and this would be one of the reasons he has responded so well to the B12.  We believe the reasons for his hyperactivity has to do with his Catecholamine Metabolism.  Ok big words again really simply he was in the red for this.    And there are some things we can add that may be able to tell us if this will regulate him so that he is always not so go go go.

And the new supplements -  5 HTP (5 Hydroxytryptophan), B6, Folinic Acid and Fluconazole.  5 HTP, B6 and the Folinic Acid are for calming, attentiveness, awareness and supplementing for deficiencies.  Fluconazole is for yeast which we my son is still battling.  The Fluconazole is only for 2 months.  The rest are for the long run but by adding 5 HTP we may be able to get rid of the melatonin.

I also had a  little side chat with Mr. DAN.  I love that he will take the time to talk with you.  We talked about the fact that this is not the standard of care for Autism and that we are kinda sorta seeing what works.  unfortunately and fortunately my son is a guinea pig.  So far nothing we are doing is scary to me.  I know I lost 98% of you awhile back.  And I am still not foolish enough to think that this would work for all children on the spectrum.  But again yet another one of my real proofs was when we had to take away the Zinc because we ran out.  Immediately my son went back to biting, chewing and mouthing anything he could get his hands on.  We put it back in and they all went right away.  That’s all I need for proof.  The goal here is that eventually he won’t need any of this but for now he does.  Because not only is he deficient he is not absorbing the nutrients and the vitamins from the food he is eating.  Once his gut (stomach) is healed we will be able to take away the supplements because he will be able to properly digest and process his foods. 

The visit ended with Mr. DAN asking me “so you are finally getting to meet your son?”.

Nystatin? December 10, 2009

The prescription that no one seems to know anything about, Nystatin. My first attempt to get the Nystatin was bringing it to the local drug store and hoping they could fill the prescription. I really wanted them to know how to fill it because of the convenience. I had even asked Mr. DAN if I could bring the prescriptions to any old pharmacy. But nothing is ever that simple. I knew Nystatin was to treat yeast and the possible side effects. But that’s about as far as I got in my research. So the pharmacists asked me if it was to be taken orally and what it was for. Yes I knew it was oral. But they seemed so very perplexed by this. They also seemed a little concerned about the dosage. They then asked me who I would be giving the Nystatin to and how old they were. Apparently there aren’t lots of 3.5 year olds taking Nystatin for an overgrowth of yeast. I knew this going in but I just couldn’t come up with a good answer without having to go into a huge long explanation and sounding like a nut job. I know how I sound to outsiders explaining how I am treating my son’s Autism. So I try to avoid the specifics if possible. But the pharmacists needed a specific answer I gave them what I thought was a satisfactory answer and got the glazed look again. The now two pharmacists proceeded to stare at the prescription as if the answers would jump off the page and bite them. They eventually managed to pull themselves together and find what they thought was the right code to order the prescription. They ordered it up and told me they would call me if there were any problems. So I waited by the phone for the phone call that I knew would come. Yep the next day they called to say that the prescription came in but it wasn’t the correct one. They also called another local pharmacy and they had no idea how to order the Nystatin. The said the prescription needed to be compounded. I have heard this term a bazillion times and I still don’t know what the hell it means.

But never fear I did have a back up compounding pharmacy my local chat group talked about. I was hoping to not have to resort to calling them because they are about an hour from my house. They do deliver once you have ordered from them but because I was a new customer I knew I would have to go down there and at least get my name in the system. My husband finally called them, after reminding him seven hundred times, and nope they had no idea how to fill the Nystatin prescription. So now we have tried three pharmacies and I am getting pissed.

From here on out I told the husband he had to deal with it. I had other things to concentrate on. He found another local pharmacy who said they could fill the prescription. And no they couldn’t, and it took two prescription orders, reminding my husband to call them every day for a week and trying to get in touch with the right pharmacists to know that they couldn’t fill it. In the meantime I also told my husband to call the DAN doctor’s office and find out if they could call in or recommend a good pharmacy to fill the prescription. So he called them again and again and again and finally they returned his phone call to the home phone that no one ever answers, after he left his cell phone number for them three times. So then he called them again and again and just yesterday after a three week ordeal he got in touch with the DAN doctor’s office and had them call in and order the Nystatin. So we are three weeks behind on starting the Nystatin. Oh well, now on to starting the Nystatin and maybe finally learning what compounding is.

My son the “Rock Star” November 24, 2009

The good news just keeps rolling in. We had our first quarter parent teacher conference with my son’s team yesterday morning. Another night and day from a year ago. I approached this meeting a little differently. I didn’t feel like I have going to any type of meeting like this, where I needed to brace myself for whatever they had to say. I was optimistic that they would have only good to say. So I sat and listened as his teacher, his OT and ST gave a synopsis of how the year had been progressing so far. Their “Rock Star”, they called him. I have to admit I was sitting there with a very smug smile. Why? Because here it was, the proof from outsiders that I am on the right track. And the OT and his teacher managed to even hand me the exact time frame from when my son started biomedical intervention. The last “2 months” they said was when he really started to take off. If they had written the date down it probably would have coincided with the day my son had his first B12 shot.

The speech therapist went on to say how much more verbal my son is. How they have skipped over the imitation of sounds because he doesn’t really need to do it. He is starting to attempt every word. The occupational therapist remarked on how attentive he is. How is able to sit almost every session and attend and transition from one activity to the next with very little assistance. His teacher said he sits for the duration of circle time. And he tries to sing along and dance with music in the classroom after having hated it the first month. They all had stories which they were eager to share about how affectionate he is and how much he now wants to engage in play with other children. In about 1 ½ months we will amend the IEP with new goals in all domains and have more integration with the classroom next door.

This morning my son was repeating and attempting to repeat back to me to “stand up”, “coat”, “push”, I thought I saw a putty cat, “I did, I did”, tweety bird. What more could I ask for when I heard all these words this morning. My son probably has over 100 words by now. I stopped counting. I can’t keep track. It’s only been two months. Hearing it with my own ears has been remarkable. Now he is showing every else that he is a “Rock Star”.

Dr. DAN visit #2 November 12, 2009

Last week I went by myself to the DAN doctor for visit #2. So far we have done three test kits for my son and a large blood draw. We have done the intestinal health test (stool test), Urine metabolic analysis profile and the DMSA oral (Heavy Metal Testing), and the RAST food panel for IGE immediate food allergies and IgG delayed food allergies . At the appointment I got the results of the stool test. We are awaiting the results of the other tests. We have yet to do the Plasma Amino Acid test because it requires fasting and we were told we can hold off on it for now. Good and good because we have to go to a lab and get another blood draw for this. How about if I give you some English explanations to the fancy terms. You’ll notice I say you take the test while it really is your child. But you are the one that has to do the collecting of samples, filling out the paperwork , paying the fee, getting a supplement into your child and sending it off to the lab. There is some hardship on your child but the brunt will be with you. And trying to explain to your family and friends what it is you are doing and why. Watch how fast their eyes glaze over.

Intestinal Health (Stool Test)
Yes you have to collect the tree samples of stool over a course of three days. Not fun. But this is a big one and will give you useful information on how to proceed. I highly recommend you take a deep breath, bite the bullet and take the test.

What will the results show?
In short they will tell you what your child is absorbing from the foods he eats, what is the makeup of his stomach bacteria, and if he/she possibly has a yeast problem.

Once you get the results what are you looking at?
Lactobacillus species is a beneficial bacteria in your stomach that you want to have. It inhibits the growth of bad things in your stomach. You want to have some of this in your stomach. My son has none. So we have to treat for it. My son also test 1+ for yeast which can indicate a yeast problem so we will also have to treat for that. Those are the two biggy’s results you look for but there is more data you get with the results and your DAN can explain those to you.

How are we treating my son based on the results of the stool test?
We will eventually be giving him a total of 5 supplements (for now). The first he has been on for three days, Mindlinx. Mindlinx has in it lactobacillus. So far and cross your fingers there have been no side effects. The benefits I believe I see are that he seems to be more regular. This supplement is odorless and tasteless. So we have been able to add it to plain water. I know we will not be so lucky as we start adding the rest.
We will continue to add one supplement every three days if there are no reactions to the supplements. We will be adding saccharomyces boulardii, zinc, nystatin, and septra suspension. Although he has a yeast problem we will be supplementing with yeast supplement. I know it seems crazy but it’s like fat. There is good fat and bad fat. You need some good fat. So you need some good yeast. My son is deficient in Zinc. One of the supposed signs of a zinc deficiency is mouthing objects. He does this all the time and I can’t wait to see if this zinc really is the reason. Nystatin is for yeast and this usually get worse with this before it gets better. Septra Suspension is an antibiotic.

I am eager and wary to go forward. But think so many of his problems are because of his internal health. And according to all his test results it’s not good. Our DAN is hopeful that my son will be a big responder to these supplements because he is such a big responder to the B12. I know for me it was a little shocking and sad to see the results of his test. I knew that they would not be good but I had so hoped that I was a lunatic mother making his take these tests for no reason.

Dr. DAN September 22, 2009

Finally we had our first Dan doctor’s appointment yesterday, after a five month wait. We at least started the GFCF diet three months ago. I was ok going the GFCF route on my own but thought I really needed some guidance and direction on anything else. We had some tests results from our neurologists on his IgA. They did come in high and Dr. DAN said that we have to be GFCF at least six months. I am so glad we at least had started this and didn’t have to add it to the list of things we have to do now and that are going to come later.

Before the visit I had read and read and read about all the supplements, Dr. DAN and the tests they run but I still wasn’t prepared for the visit. Dr. DAN was very nice and soft spoken. He took a thorough history of my son’s medical history, better than most of the doctors we have seen so far. He let us know that he would be throwing a whole “net” of stuff at us and my son. I was completely prepared for that and even with him the whole time, following everything he was saying. I think my husband even understood what was going on. Dr. DAN was very clear and to the point about what we were going to do. Exhale take a breath, I thought it was a piece of cake and was excited to get started. Dr. DAN bid us goodbye and sent us to talk with the woman who deals with insurance and have some blood taken by the nurses.

That is where things started to really get interesting and I started to lose them. Not intentionally of course but everything was so far over my head. I am pretty sure my husband thought they were speaking Latin. I kept thinking that I need to go back to school to know this stuff. I have enough problems just dealing with the insurance. But then we met with the nurses and went over the four or maybe five take home test kits we need to complete and send off to the lab. I tried to take notes and the nurse said the instructions were included with the tests. But I am still confused because someone circled five test kits and am pretty sure sitting at home right now are my four tests kits. And I only have notes on four kits but vaguely remember someone at least discussing the cost of all five kits. They saved the fun part for the end, drawing four decent sized vials of blood from my son. He had already had enough and as usual they couldn’t get the first vein to work. They called in another not so nice nurse whose only redeeming quality was that she immediately was able to find the vein and draw blood. Two hours later we out of there with our shopping bag full of tests and a lot of my own notes that I don’t understand. For those of you getting ready to go see Dr. DAN, take a tape recorder.

The tests are a pain in my ass too. None of them particularly hard on my son at all, but more for us the test collectors, sigh. I am so not looking forward to digging through my son’s poo for three straight days, collecting pee for six straight hours and more pee for another test. Oh and the B12 shots. I have to give it to my son one every three days, while he is asleep, sit there for twenty minutes after the shot with the EpiPen and hope and pray that he doesn’t have a reaction. I am sorry for the graphics but I want people to understand what it is we go through for our children in the hopes that something helps them. I went home and was pretty upset. Not because of the visit itself but because of what I have to do to recover my son. What lengths I have to go to. I will do anything for him but it doesn’t make it any less hard, any less exhausting, any less painful, make me any less sad, overwhelmed and angry that this is my son’s life.