I think Holden's beginning to understand he has a brother. He may not understand it's his BROTHER, but he's very curious about the baby lately. I've noticed over the past few days that when I put Jackson down for a nap in the front room of the house - Holden seems to disappear a lot. When I find him, he's in that room. Not really looking at Jackson, or trying to touch him - he's just IN the room. Looking for things to play with I suppose. Today in the car, he touched his hands and feet, and then touched his face. So, maybe after 6 weeks, he's beginning to realize that this baby isn't going anywhere! ha. Either way, it's nice to see him take SOME sort of interest.


LOVE when he does this.

I had to post this because I just LOVE when he responds to me. He was sitting in his chair, watching Elmo, and had something in his mouth. I look over and see that it's paper (he loves paper, ya know) and so I said "Holden, give that to mommy" and held out my hand. He got up, took it out of his mouth, walked over to me, and put it in my hand.

He hears me. He understands me. He's IN there, I just know it. And "little" things like this just reaffirm what I already know.

positive, negative, or not even related.

We've been on the Nystatin now for 9 days (and off the Diflucan) and Holden seems to be tolerating it well. I say "seems", because I really don't know.

He hasn't had any strange behavior, but he has been a little more whiney, a little more 'stimmy', loss of appetite, and this morning, he had a really dark runny poop. (yea, I know, TMI). These aren't really normal behaviors for him. But, I noticed a few days ago that he had a molar coming in. So, is this all from him cutting his tooth, or from the change over in meds?

We also just started the glutathione cream once a day 3 days ago. I don't know how long it takes to be absorbed into the bloodstream. So, it could be a positive thing. Could be signs of detox?

So, are these behaviors a positive response to the glutathione? A negative response to the change over in anti-fungal meds? Or, are they absolutely not related to any of his treatments and it's related to him cutting a molar?

So many questions with all of this. I've decided to ride it out for the weekend. See if his poop problems improve, or get worse, or stay the same. And, just watch his behavior in general. I'm assuming if the yeast is coming back from switching the meds, then the behaviors will increase. If it's detox, then maybe they'll decrease. Who knows. I'm flying by the seat of my pants here. Obviously.



DAN! Doctor Update

We had an appointment with Dr. Berger last Friday. We did this appointment via phone, and it lasted for 1.5 hours. We discussed A LOT. Instead of trying to type all of it out, I've copied and pasted the notes from our call.

ES 2 cups per bath
ES rubs once a day
Cod liver oil 2 tsp daily
carnosine 2 cap twice a day
Nu Thera 1 cap twice daily
Calcium 1/8 tsp twice a day
Factor-4, 1 cap daily
Diflucan 1/2 tsp daily
Vitamin C 1/16 tsp twice daily

AKG - much rocking and agitation
Wt: 34 1/2 lbs

The repeat zinc level was not high like before, that must have been a lab error. The ratio of copper to zinc is mildly high but I don't think it is significant. The family reports they really can only do 1 Epsom salt rub a day in addition to the baths. I advise they do the best they can, but the sulfate level is in range now so he must be getting plenty. The ammonia level is normal. I see no reason to give the alpha ketoglutaric acid. The glutathione level was again low on the repeat (though not as low as we had originally seen). I would recommend the continuation of glutathione as a primary therapy. I would first like to do this as a transdermal agent to try and avoid IVs if at all possible. If we do not see a clinical improvement like we did with the low dose IV glutathione (we never got to the higher dose) or if with the transdermal we are not seeing the values of glutathione coming up, then the IV should be reconsidered. We will make up a transdermal glutathione that has 500mg per dose. For the first week, apply 1 dose a day. Then if all is fine increase to 1 dose twice a day. This is applied to the chest or back.

In addition, we discussed how MB-12 is a vitamin that helps to stimulate the internal production of glutathione. I would like to also start this therapy. The MB-12 is given as a subcutaneous injection (at a 30-degree angle) to the outer buttocks or thigh. It is given every 3 days. Place a pea-sized drop of EMLA cream (lidocaine) on the appropriate spot on the skin and rub it in well (mark the area with a ball point pen) and then give the injection about 45 minutes later. Just prior to administering, wipe the area twice with alcohol. If you see a bubble form under the skin you went to shallow, if you see any pink color to the urine, you hit the muscle and went too deep. We will use a dose of 1250mcg. It will come as pre-filled syringes. Keep them in the fridge until 1 hour before administering, then take out so it warms to room temperature. If you do not have 60 minutes ahead of time, roll the syringe between your hand for 5 minutes. Just before you give the injection, pull back on the syringe so that a small amount of air enters the syringe, then slowly squeeze the air back out. This is so the plunger will slide smoothly. Do not pinch the skin before administering. If you see anything negative from the MB-12, immediately start giving him 1/2 capsule of folinic acid twice a day. if there is still a problem 4 days later increase to 1 full cap twice a day. If things are not better several days after that, stop both treatments and call me. If you do not see anything negative, do not start the folinic acid now, rather we will try it in about 2 months into the MB-12, as for some people the addition of folinic acid brings even greater benefit. The reason we do not do it to start off with is that there are some people for whom the folinic acid blocks the action of then MB-12.

We are still seeing high dihydrotestosterone and DHEA, so we know the fluconazole did not treat this appropriately. We are seeing absolutely no yeast in the stool now, so we know that the fluconazole worked for this and any clinical improvement that was seen due to the fluconazole must have been through yeast elimination. If we were to not continue any antifungal therapy, there is a very high chance the yeast will come back I would therefore like to start him on Nystatin in place of the fluconazole and see if there is anything negative when the change occurs. If not, then in a few months we will repeat the stool to see if the Nystatin is holding the yeast down. The dose for the Nystatin would be 1/4 tsp of the pure oral powder twice a day. When you get the package, please make sure it says "for oral use".

For the hormones that are high, we discussed the various treatment options that are available (including licorice root, cortisol, lupron and spironolactone) , and at this time the family would like to try licorice root. The active ingredient that we dose on is called glycyrrhizin. The dose would be 3mg twice a day (which is just under 0.2mg./kg/dose). Prior to starting this please have his blood pressure checked locally, and until we get settled on a dose (we may need to go higher if we are not seeing the hormones come down but if the cortisol stays down) we should get the blood pressure repeated every 2 weeks. Then after 1 month we will repeat the testosterone, dihydrotestosterone and DHEA and see if there was a change. We also will get a cortisol level and there are a few other hormones that can be affected as well that we have not checked yet but I would like to look at for safety purposes. Please do not stop this therapy (unless there is a negative reaction of course) and get a refill to get you through to our next
appointment if you need to.

We went over the basics of performing a chelation challenge. I would go with rectal EDTA CaNa2 at a dose of 750mg as the challenge. We can discuss this further in the future or if the family wishes to go forward before we formally speak again, I can send the instructions. We also discussed the possibility of doing an IV chelation challene at the same time we poke him for blood since we will be in his vein already. If this is an option lets discuss it for 15 minutes before we get to the blood draw appointment.

First change over to the Nystatin.
Assuming all is fine, 1 week later start the TD glutathione at once a day.
Then 1 week later increase the glutathione to twice a day.
Then 1 week later start the MB-12.
Add the folinic acid if needed.
Then 2 weeks into the MB12 start the licorice root.
Then after 1 month of the licorice root we will repeat the hormones.
If the family is going to do the chelation challenge test before we speak again, do it 2 weeks after starting the licorice root (or with the blood draw if IV). Then we would have the urine results back by the time the hormone results are back.

Hope. Faith. Recovery.

Watching Jenny McCarthy on Oprah the other day really made me think about how it felt when I first found out about Holden's diagnosis. I remember the moment when my husband and I talked and just knew in our hearts what was going on with him. We didn't need a doctor to tell us. After a few weeks of feeling very helpless, hopeless, and just plain "out of it", I got online and started to google. Just like Jenny said, I googled "autism recovery". I looked for stories of hope. I wanted to find someone, another mom, who had gone through this and came out on the other side with a child who had recovered. And, I was surprised when I found not just 1 other mom, but MANY, who had been through this, and who were now talking about their story. I met so many wonderful women online who have given me so much support, I truly don't know what I would have done without them. It's so true that you feel alone in this world of autism. And when you have others who know what you're going through, it somehow eases the blow a little. So, I'm thankful that I've found so many great people out there. And thankful that so many have decided to share their stories of hope. Another thing Jenny said that struck a cord with me - "Hope, Faith, Recovery". I looked and found hope from other parents and now have complete faith that my son will recover from this and live a happy life. It's not an easy journey by any means, but it's a necessary one, and one that I'm committed to.


bad day

Although I watched Oprah last night with Jenny McCarthy and Holly Robinson-Peete, it hasn't helped me with the day I've had today. It's not really Holden. That's some of it. But, juggling the baby and him and everything is just wearing me thin today. Not much sleep last night, as Jackson was up from 1-3:30am. Holden's extra "stimmy" today. I don't know, maybe it's because I slacked off and didn't order his L-Carnosine on time. He's gone 2 days without it now. Which isn't good. Or, maybe it's because his dad is still gone on business (but will be home last night, thank GOD). Or maybe the change in routine - things have been a bit different for us in the past few days, with it being just me here. And, of course, I'm sure he can sense the stress coming from me. Trust me, I'm leaking stress. It's leaking from every pore in my body. I hate myself on days like this - Im' just angry at the world and it not only affects me. But it affects my kids, too.

So, I gotta get out of this slump. Somehow.


ABA Therapy

Holden gets 3 hours of ABA per week through early steps. His behavior analyst comes on Mondays & Wednesdays.

Today was a good day. He said "eat", or .... more like "eeeeeat" 5-7 times when he wanted raisins. (He loves loves loves raisins) He was more affectionate today. He climbed up in her lap and wanted her to hold him, and hug him. Funny kid. He's definitely become more social. Maybe not with kids yet, but with adults. And that's a beginning.

He was a bit "stimmy" today. But, I think that has to do with his dad being gone (again, for work), and I screwed up his nighttime routine last night. Tonight, I know better! So, we'll see how he does tomorrow. His behavior analyst stopped the stimming once today and he was easily redirected. He has this thing now. He throws - well, more like drops, things off of anything. For ex: he'll take puzzle pieces and get up on the couch and drop them one by one onto the floor. Pick them up. Repeat. So, really, it's anything that has a lot of pieces. Pieces of the perfection game, he does the same thing. If he's not dropping things off an "edge" of something, he's hiding them and sitting on them, or finding them again. I can't figure out if it's a sensory issue, or just a repetitive/stimming thing. If we can figure out how to redirect him to a different activity (if it is sensory) where he gets the same input, we would. Thing is, I can't figure out if it's visual...or tactile. I think it's tactile. He's not watching the pieces fall. He's just letting them go. I think it's the feeling of having something in his hands, and then not. He's very touchy-stimulated. Rough surfaces, etc. I thought about getting a piece of sand paper and keeping it handy, so that when he rubs on the walls, or starts to stim, maybe I can redirect him to the sand paper and see if that helps? Anyway. It's all a guessing game at this point.

The second time she stopped the stimming with puzzle pieces, he cried. He laid on the floor and cried - for 6 minutes. It felt like an eternity. She says that 6 minutes is nothing really. That "typical" 2 yr olds tantrum for much longer than that, on average.

And, on top of everything, like I said - last night, I screwed with his routine, so he didn't go to sleep till 10pm. I have a feeling by the time the last little "fit" happened today around 11am, he was ready for a nap - on top of everything else.

We went to the park today and he just loves to swing. I love him to swing because I love the look on his face. His smile. His dimples. And, most importantly, the eye contact he gives me. I can really SEE him when he looks at me ... if that makes sense.



Yesterday at the mall, we went to a store and Holden was playing with a stuffed snake. They had different colors and I asked him - do you want blue or green. He had the green snake in his hands and he said "geen". Dietrich and I looked at each other, in shock! We both heard it. He wouldn't repeat it, of course, but thats okay.

At the park today, he was in the swing. He motioned for my mom to give him her hands and then said "out". We thought he said it, anyway. So, she asked him if he wanted out and he said "out". So, yeah, I guess he really did say it!

This afternoon, he pulled a bag of chips off the kitchen counter and I put him in a chair and asked him if he wanted to eat. He said "eeeeat". Not once, but twice.

I can only hope that all of these little sounds, words, or whatever they are will increase and he'll just continue to develop speech at a quicker rate than he has been. I can't tell you how nice it is to just hear a few words throughout the day from him. What a blessing!


Crazy Week

Holden has done so, SO many new things this week.

Wed, 9/5 - During ABA therapy, I interrupted his stimming (on plastic perfection pieces) and joined in with him. He hesitated at first, but then let me. We played. He played, instead of stimmed. Or, as least, he let me join him in his stimming. We worked on the sigh for "please" and he did it, only needing a verbal prompt after the 2nd attempt. His speech therapist came right after ABA and commented on what a good mood he was in. How much more verbal he was, and engaging.

Wed, 9/5 - After dinner, he was stimming on a book - flipping the pages over and over, like he does sometimes. His back was to me. I stood in the playroom (which is next to the stairs) and said "Holden, come to mommy, time for bath". He didn't respond. I said it a 2nd time and he put the book down, got up, walked over to me, took my hand, and led me to the stairs.

Thurs, 9/6 - Lunchtime, I gave him a banana. I always says "ba-nana" when I feed him a banana. He said "nana".

Thurs, 9/6 - After picking up Zoe from school, we stopped at the park. I put him in the swing and he LOVED it. He's always liked swinging, but, before, we had to fight for eye contact twice in a 30 minute session. (We learned to do this from his OT). This time, he gave me eye contact for 90% of the time and smiled and laughed, and it was as if I could see him in there ... it's the first glimmer of really seeing that he's still "there". Also, before when we went to the park, he would shuffle his feet through the mulch, instead of being interested in any of the equipment. This time, he walked over to the equipment, climbed up, and wanted to slide. Then, when leaving the park, I was prepared for a full-on tantrum because he hates leaving. He smiled at me, I explained we had to go, and he got in his carseat with no trouble - no whining, no crying, no screaming.

Fri, 9/7 - Leaving to go pick up Zoe from school. I said "Holden, let's go bye-bye, we have to pick up sissy". He didn't even hesitate - he got up, walked to the TV, turned it off,
and came to me with arms up in the air.

Sun, 9/9 - Again, when told we were going "bye-bye", he put down his paper (he was stimming on shreading paper), went to the TV, turned it off, and came to me.

Mon, 9/10 - While in ABA therapy, the therapist stopped him from stimming and redirected him to another activity. He was "easily" redirected after only a very brief whine.

Mon, 9/10 - Dietrich came home from being gone for 3-4 days. In the evening, he was playing with a toy and when daddy called him, he turned and looked at him. He only does this maybe 50% of the time, if that.

Mon, 9/10 - Dietrich found his Big Bird we made at Build-a-Bear about 5 months ago in the garage. He would make the "ahhhhh" sound and open big birds mouth (almost like using a puppet). Holden would open up big bird's mouth with his hands and then say "ahhhhhh!" Imitating!

Tues, 9/11 - During OT, he noticed other noises going on in the room. When his OT hit a button on a electronic toy, he turned and looked. He also followed directions well. Engaged with the therapist, and made GREAT eye contact while in the swing (and out of the swing, actually).

Tues, 9/11 - During the evening, I went into another room to change Jackson's diaper and Holden walked in with Big Bird under his arm. A binkie in the other. He had his back to me and I walked over to see what he was doing - he was putting the binkie in Big Bird's mouth. Pretend play!! I said "let's go, honey", to direct him out of the room and he followed me. Then, he wanted to be rocked in the rocking chair, but while having big bird under his arms. He slept with him.

Wed, 9/12 - a.m., we woke up, and I asked if I could give big bird a kiss - he put big bird in my face to give me a kiss. We came down stairs - with big bird. We sat on the couch and I pretended to give big bird a drink from his sippy cup. He imitated me ... tried to give big bird a drink from the sippy, too.

Wed, 9/12 - During ABA, his therapist made the comment that in the past few sessions, she's noticed much less stimming.

Wed, 9/12 - When his speech therapist left, on the 2nd attempt, he picked up his hand to wave to her!!! We've worked on this for a while now, but he's never attempted to raise his hand to wave. He did it twice, unprompted. The 1st time, I did hand-over-hand and waved bye-bye. Then she waved at him again, and he lifted his hand in the air - all the while - making eye contact with her. Then, she did it again, and he followed her lead. So, TWICE, unassisted!

He's also been VERY verbal over the past week. Loud sounds, too. New sounds, or at least, sounds we haven't heard in a long time - "Ga-Ga-Ga", "Ba-ba-ba", and more. He's also imitating more sounds at night after bathtime (seems to be the best time to get him to imitate). He's also turned off the TV during the daytime hours - and has gone to find something else to entertain himself with ... toys.

I don't know what to think, or how to feel. I haven't seen this much NEW 'stuff' from him ... in this amount of time ... in the past 6-8 months. I'm happy. Thrilled. Cautious. Scared. But most of all, he just seems "happy", and THAT makes me happy. It just reaffirms my faith that one day, I'll have my baby back. It's going to take a lot of work over the next few years, but I see him in there ... and we're going to help him come back to us.


OT Eval / Goals

Today we had OT. The insurance company is asking for a re-evaluation at this point. He's been in OT for almost 6 months.

His OT, Michelle (we love her!), retested him on some items. She also revisited his original goals. He's met a lot of those goals and then some. One of his goals initially was to make eye contact twice in a 30 minute session. She said he's met and surpassed that goal. There were other goals that he's met, too. And she's created some new goals for him. We're going to continue to work on eye contact (as that's one that I always want to work on), start working on 3 step directions, and transition from session to car, and transition from 1 activity to another. We'll also work on stringing beads - as he takes the beads off of the string, but can't quite get them back on.

I can't tell you how good it felt to know that he's met most of his OT goals set for him 6 months ago. I know he's making progress, but I can't say how great it is to have the confirmation. It's a good day today.

while they're sleeping ....

I thought I better post this before both of the kids wake up. Which will probably be any minute now that I've jinxed myself.

Anyhoo. I wanted to get this down before I forget. Yesterday while the behavior analyst was here for Holden's therapy, he was stimming on little plastic pieces to the game "Perfection". He was gathering them and dropping them off the side of his table. Picking them up, dropping them again. Rinse, repeat x 20. So, I got on the floor with him and started "stimming" with him. I would let him drop them ... but in my hands, instead of on the floor. At first, he pushed my hands away. Then, after the 2nd attempt, he let me catch them. He smiled. We did this a few times. I would interrupt him and tickle him, and then let him go back to doing what he was doing. The interruptions didn't seem to anger him at all. He continued to let me join in with him, and after a while, we started working on signs. I would take the plastic pieces and not let him have them until he said "Please" (by signing it). After the 3rd attempt, he was signing "please" with only a verbal prompt.

I did this with him for about an hour nonstop. Yes, the behavior analyst was here, but, apparently, she was only doing "parent training" cause I was the one on the floor, interacting with him. But, that's another story.

Anyway, after she left, the speech therapist came over about 5 minutes later. She commented on how much more interactive he was. How much more verbal he was. And what a better mood he was in. I think by me joining in with him - it really opened the door for him to engage with us. I've heard of the "Son Rise" method, and even have an online friend who runs the program for her son. Yesterday was the first time I've seen it actually work!

Also, yesterday afternoon - I called for Holden to come eat. He didn't respond, so I called him again. I said "it's time to eat, Holden, come to mommy". He stopped what he was doing and came to me. Then, after eating, he sat on the floor and started stimming with a book - turning the pages over and over again. I stood about 20 feet from him and said "Holden, it's time for bath, come see mommy". He didn't respond, so I said it again. The 2nd time, he put the book down, got up, and walked over to me. Took my hand and took me to the stairs. The bath is upstairs. So, this tells me that not only did he respond to me, but that he UNDERSTOOD me. So, I had a few "wow" moments yesterday. It was a good day...