Sunday, June 28, 2009

Lab Results

We have been so busy lately with everything I haven't stopped by in quite a while. Here is what has been going on with us.

A couple of months ago we started a Gluten free Casein free diet and decided to go see Dr. Humphreys ND at Healing Solutions Pediatric Centers. A DAN! Dr. He saw both of our oldest and we only have money right now for the full testing on our son. The first test we did was a Metabolic Analysis Profile. The results showed low lactic acid, an elevated FlGLU or Formiminoglutamic Acid, and high glutaric acid. I am not a doctor so I am just trying to start researching what this all means and going over the lab results here are some explanations: Low

Lactic Acid or lactate: usually a result of reduced pyruvic acid

FlGlu: dietary deficiency of folic acid, severe oxidant stress, vitamin b12 deficient. Children with folate and or b12 deficiencies may be associated with autism, mental retardation, growth failure and seizure. This deficiency can be secondary to gastrointestinal disorders.

Glutaric Acid: associated with general neurological deterioration, spasicity and mental retardation, can lead to hypoglycemia, hypotonia, nausea, poor weight gain, poor weight gain. The second test we did was a blood test.

He ordered a comprehensive metabolic panel, iron binding, TSH CBC panel, strep test, copper serum, lead serum, zinc serum and DNASE. The potassium came back high, CO2 high, low ALT, high hemoglobin and hematocrit, and out of balance zinc. These lab results did not have an explanation attached but the Dr. explained that he may have an acidic gastrointestinal environment and an abnormality in the use of B12 which can lead to anemia. The copper to zinc ration in our system should be 1:1 and he is low on zinc which we will supplement with 30 mg. for 2- 3 months.

The regime to fix it all?
1) Diflucan or fluconazole for 10 days as well as a pro biotic called Maximum GI Health 2) Folic Acid- his need was a nine out of ten right now 3) Child Essence multi-vitamin one capsule a day for 1 week then go to two capsules a day 4) Omega 3's with super EFA (not Omegas 6 or 9) 5) Zinc 30 mg. 6) Go back in one month for B12 injections

In a nutshell...we have real results on paper. Something solid to look at which links with behaviors of autism and sensory integration. The methylation systemis not working properly, the GI has a bacterial issue and the folinic acid B12 is not converting the way it should to be available in his body. I am hopeful we will see results after treatment. We are open for ideas and thoughts...This is all new to me. I wish we had money to get our other children tested. One step at a time.

I have also noticed my son seems to always be cold or hot, no in between. He keeps getting hurt while playing and has a black eye and EAR??? currently. I am wondering if there is a possibile sleep problem. We find him up two or three times a night and during the day he seems like he could use a nap, but never takes one. Ideas?

Thursday, June 18, 2009

Long time no blogging ( at least not here)

Hey ladies.... long time no blogging over here. Things have been super super crazy in this lovely household. If you want super nice in depth details head over to my blog. But otherwise here is our update.

Ty is doing super super good. For the first time in almost 4 years the stinker finally has an ear infection. That of course was after our "little" run in with the swine flu.

Yep you read it... We went on vacation to Utah and freaking got directly exposed to the swine flu for almost a whole week. The in laws had it. My hubbies sister was diagnosed with the swine flu while we were on our way home. Ty got hit with a super fast fever and the pukes the entire plane trip. I was flying alone so I was nervous as could be. But we had a fever for 2 days and then Dallas and I got the sickness.

We have been battling the flu/swine flu for about a week now. With everyone sick in our house we are not happy campers.

Our vacation to Utah was ... well.. I am glad it is over.

That was our current week. Right before we went on vacation we had botox follow up. Looks like we will be going for round 2 in July. His shunt seems to be stable for now. We all know how fast that can change. We were going to do summer school at the foundation for blind children but the above mentioned sickness has put us into just being home with mom. We just hired another respite lady. She is a grandma and we are hoping it works out better than the others we have had.

We are also ttc. We know that we will be on pretty close watch and hope that with the new respite people that if we need to do bed rest we will be all set.

That is the update from this tired mommy in Arizona. So glad to see all the good updates. You ladies rock.

Here is a few photos from vacation:

If you want to see more photos or see more of the update and more indepth and of course way more photos. Come on over to our regular blog.

Sunday, June 14, 2009


Hey everyone! I just want to thank everyone on here for the help you are always giving, in your thoughts, comments, ect. I really can't begin to express how grateful I am to have this place to go when nobody else seems to understand.

Now, that being said... I am wondering if I can get everyone's family blog addresses? I follow some of yours already, but would like to follow everyone. I promise I am not one of those cyber-stalkers.... I just love to see all the things going on with your family as a whole, and how you are making the difficulties in your life work out. If you are anything like me, you don't post everything you feel about your situation on your family blog. So I like to just see the fun things going on. If you don't want to share.. that is OK too. Or you can email me the address of your blog if you don't want it posted here. Thanks!

Saturday, June 13, 2009

Jonahs CPT

This is jonahs Vest that I ahve been waiting for, This video was taken at the hospital but now we have one at home, I will post a new shot when I can get time. I just wanted to share a piece of Jonah's therapy with you.

Thursday, June 11, 2009

Needing Pray

Health crisis with Clay since the 17 of May........unresolved as yet and hospitalized. Also my Daddy has been just placed on Hospice Care...........Please keep us all in prayer requests. Thank you all. Love & hugs.........

Monday, June 8, 2009

Marshall update

Well, I've been MIA lately. That's because I'm barely hanging in there with Marshall's behavior and I'm so tired I just don't have time to blog. We made it through the whole Daddy being gone for a week (barely), and then 2 weeks ago, we had a big medication mixup. Here is a VERY condensed version of what happened.

Tuesday night, May 26th, I picked up a refill prescription of Clonidine for Marshall. When I went to give it to him that night, I noticed it was bigger and blue instead of the small orange pills I'm used to. I told my husband that it wasn't the right medication. My husband told me the pharmacy probably just switched manufacturers and give it to him anyway. It was one of those nights when he was so wound up and out of control that we were pushing it to make it to 7pm when we give him his evening meds. So, we gave it to him but then my husband started worrying. He looked up Clonidine online and could see lots of pictures of what it looks like when made by different manufacturers but nothing was blue. So, I called the nurse for the on-call doc. She said not to worry, just watch him that night and make sure he's breathing, etc. I told her that doesn't work for me because we don't even know what we just gave him! She suggested we call Poison Control. Yay! Good plan! I was in the middle of my "Special Playtime" with Marshall so I had my husband call. Poison Control is so Awesome!! They figured out that what we had given him was really Clonazepam, which is a generic form of Valium. He got 2 mg of it. Poison Control said to watch him. I think they expected it to knock him out. Yeah, right. They don't know Marshall. He never reacts normally to medications. He was cycling through moods pretty fast and they were manic. He was crying and crying that he loved me. Then he was climbing on me, then jumping around, then angry, then crying again. It was frightening. Finally, at 10pm, Brian called Poison Control again. He forgot to mention the fact that Marshall takes Fluoxitine in the mornings and when he was reading about drug interactions with Clonazepam, he read that Fluoxitine is NOT a good one to have with it. So, Poison Control sent him to the ER close to our house. It's a community hospital, small, not the best. Do they even have Peds? Not sure, actually. Anyway, instead of giving Marshall the antidote for Valium, which is what Poison Control sent them there for, they tried to give him something to calm him down. Oh, and by this time, he was losing the ability to walk. His legs weren't working and he couldn't hold himself up even while sitting on the toilet. The ER docs gave him Benadryl thinking it would make him sleepy. NOT!! Then they gave him his regular dose of Clonidine about an hour later. By the time that finally kicked in, it was 1:30am. This boy can go and go and go unless he takes enough Clonidine. When Brian and Marshall finally got home it was after 3am. Marshall was now pretty much comatose. I mean, he was breathing but that's about it. He was so completely asleep and had no control over his bladder. We changed him, put on clean, dry clothes, and then I checked him 5 min. later and he was soaked again. So, poor Brian went out to the grocery store at 4am to get Pull Ups. We got him changed again, put him in his bed, then changed our bed. We finally got to sleep around 4:30am. The next day, we woke him up to go to the doctor at 10:30am but he wasn't really waking up that well. He tried to walk but kept falling over and crying. He fell asleep waiting for the doctor and slept through the whole exam. The doc even pulled his eyelids open and looked at them with a light but Marshall stayed asleep. If you knew Marshall, you would know that is NEVER normal. Not even close.

Ok, now it is 11pm and I'm so tired. So, long story short... Once he finally woke up, he was totally out of control. I mean, worse than normal out of control. His moods were going wild. It was seriously to the point where the doc was going to admit him to the hospital for observation. The only reason he didn't was because he felt like it wouldn't be any different. We can watch him at home just as well. I had to lock the deadbolts because he kept running away. Finally, I let him ride his bike outside until it got too dark. We called the on-call doc and made them call our doc. He said go ahead and give him Clonidine and his regular meds. It took until Friday for his moods to really start to get back to normal. It was so frightening. Needless to say, Valium is on my list of meds to NEVER USE ON MARSHALL!!!

Tuesday, June 2, 2009

Foundation for blind children

When we were in the NICU one of the last hurdles we had to cross was our eye exam and getting cleared from ROP. About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment. About 400–600 infants each year in the US become legally blind from ROP.

Tyler is one of the 400-600 infants. He has amazing vision for the degree of ROP he has. While he is on the border of legally blind, he is considered to have low vision. He also suffers from nystagmus which makes his eyes constantly move and scan where he is trying to look. As a direct result from his surgery he has a coloboma as well. Though that doesn't seem to make much of a difference in his vision, it does make for a really cool eye.

When we moved to Arizona we lost our vision therapist but gained the foundation for blind children down here.

I was sent this from youtube that I thought I would share with you guys.

When we first moved here it was my life line. I met some wonderful women who attended the infant program. I am excited to send Ty back for their summer program. 3 weeks of vision geared activities. It is going to be great.