Saturday, June 27, 2009

My Baby Is Six!

So how does this happen? How does my baby turn 6? I still remember the day six years ago, two day labor. Drugs that did not work so I felt every second of his labor. Being told at 9cm that his head is too big we have to do a c-section. THANK GOD. By the end of day two you are begging for Mercy. Luckily those drugs worked. And than bringing this 8lb 1ounce baby home to a heat wave. Where from day one he refused to where clothes. Do NOT put socks on this child, he could pull them off in seconds flat and toss them. Where at two weeks he rolled over because he was determined to sleep on his belly. What can you do after a few days of fighting it, I gave in, if he could roll over I had to let it be. I was tired and needed sleep!

Ethan hit every milestone on time, he sat at 5 months, walked before his first birthday. Where at his first birthday he told everyone that he would be a big brother. He was potty trained before age two and just doing so well. Growing like crazy and talking up a storm.

But then his second birthday came and so did his 2 year check up complete with shots. He received nine shots that day to catch up from 18 months where I happened to have delivered Tucker so he didn't make it to the doctor until age 2. Where we played catch up. Knowing he had fevers and being cranky after shots we gave Tylenol before the shots hoping for the best. Who know those shots would change our lives? Who know?

By the time we got home that day from the doctor, he was cranky, he was fussy. and he had a fever. This continued for days and weeks. I would call the doctor and he said it was fine. Give more Tylenol. 14 days after the shots and still never returning to my old boy, his fever spiked, it hit 104 and he went into seizure. 911 was called and we headed to the hospital. Where we were quickly sent home, he has a fever, he probably has an infection take him to his doctor in the morning? They gave us more Tylenol and more Motrin and sent us on our way. So we went to the doctor the next day where we talked about febrile seizures. Where gut said no, but he was the doctor he knows what he is talking about right? So after a couple of hellish days of none sleep and screaming for hours on end, he calmed down and we were hoping Ethan was snapping out of it. Exactly 30 days later at 4am I heard Ethan's brother Tucker fuss a bit. So I got up to take care of Tucker and I heard an odd sound from Ethan's room. I went in and something was not right. I said "Ethan" and he went right into a seizure. So at 4am I pulled him out of his crib well Russell called 911 again. And off we went to the hospital again. Where we were home by 6am. And back into the doctors office at 8:30am. What is going on, where we talked yet again about febrile seizures?

So why won't the fever ever really go away? Why is he so cranky all the time, the screaming? He is not looking at us? Not sleeping? Oh he is just sick give more Tylenol and Motrin. He just had another febrile seizure. UGH! OK he is the doctor right? So 30 days later you want to guess what happened? The day before Halloween I was up in Olympia and I took Tucker with me, because Ethan was still sick and cranky. Where I get a call that Ethan has had another seizure. OK so why call 911 right? I call the doctor's office and told them about the seizure and they said there is a children's emergency room to take him there. OK we can do that? So I race home and pick up Ethan and Russell and we head on down. The doctor comes in and takes one look at him and Say's he has an infection I say we know. He says what did your doctor give for it. I said nothing. I have been told by four doctors because they don't' know what kind of infection it is they will not treat it. Has there been any testing? No I say.

The doctor gets pissed, he gives us some antibiotics and says you need to get to a neurologists asap. He said he would take care of it and sent us home. I guess he called our doctor that night and they had words. Because I got a call first thing in the morning from the neurologists office to come in the next day. I'm like boy that was the fastest referral we have ever had? They said they got the paperwork the night before from our doctor.

Well we put Ethan through all that testing and nothing. According to that doctor he has febrile seizures. And she discovered how much in medical bills we have and so she arranged for some drugs for us to stop seizures if they go longer than five minutes. And lucky for us she did not charge us and gave us our co-pay back.

So the antibiotics kicked in and the fevers finally went away. Ethan being sick was gone. But what we were left with was hell. Hell I would not wish on anyone!

Our Ethan would not sleep, he would scream for hours on end. He stopped eating, well unless if it was bread or milk. He would flap his arms and spin. He would run around the house for hours. Furniture jumping OMG. He would take off from the couch and aim for the wall, bounce off and do it again. It was the funniest thing ever.

Countless trips to the doctor asking for help. And being told it's adhd and we should put him on drugs. Me saying no and leaving with no help. Me going back because after all he is the doctor right? And me being told it's adhd and he needs drugs. Me saying no and leaving. Me BEGGING for help and me being told he really needs drugs are you ready for them? I would say no and leave.

It was a two year battle, two years of non sleep. It was two years of HELL. And somehow in the mix of this we had baby Cole. But you start to feel like a bad mom when Ethan takes up so much of your time. He had to go back into diapers. If he didn't have your full attention when he needed it, than watch out. For pooping we would have to sit in the bathroom for hours holding his hand. The reflux was so bad he would cough for hours on end at night. Have I mentioned the no sleep part? Doctor put him on reflux drugs and they were not working. A year later, I had a gut feeling I needed to look into the reflux drugs. And boy was I shocked! A child should not be on them for longer than a year. He was coming on one year and they have been no help. So I go back to the doctor and ask to take Ethan off of them. He said no but lets have him scooped. Sure why the heck not right? We go the GI doctor and she scopes him and sends us home saying all looks good, but to double the medicine. My gut said no, I left him on his old dose.

So two months after his scope we had a bad day. We had the worse day ever. I had all three boys, home alone. And any sanity I had was gone. I don't think I had one quiet moment. And than well Ethan was furniture jumping he fell and hit the floor, he hit is hard and I thought he broke his arm. And there I am trying to hold him and of course you can't touch him. I had not been able to hold him for two years why start now? I had had it, I was in tears, I wanted, no I needed answers and I was out to get them. I put all kids to bed at 7:30 knowing the bedtime fight would happen, but I needed computer time. That was it. And that was the night I got smart.

I first looked into adhd drugs. OMG I could not do that to my son. I typed in naturally adhd and Celiac disease came up. OMG everything mentioned was Ethan. I was in shock, he was eating two loaves of bread a day and nearly a gallon of milk and that would be it. OMG. He was dropping weight, he was not growing, he was the same size as his younger brother. OMG. But I kept researching and found going dairy free helps as well.

So I got up first thing in the morning and called the GI doctor and got the nurse who read me Ethan's chart. I asked for the samples to be tested for Celiac disease. She looked over his chart and finally read me the doctors private notes, She saw Celiac Disease. I was dumbfounded. I was shocked. I asked why didn't the doctor tell me? Um, because the lab report came back negative. Oh believe me I am still ticked. But yet I finally had answers. We started to take away gluten, I have to tell you three days after saying OOPs the store didn't have any bread today. He slept. I put him to bed at 8pm and by 8:05 he was out. That has not happened in two years. I was like now what do I do with my evening? I'm normally doing the bedtime battle. You all know that battle!

Within days he stopped needing help pooping. He was fully potty trained. With removing dairy, he started saying words. He started looking at us. I could touch him. It was not until we fully went soy free we got him back. The arm flapping stopped, the furniture jumping stopped, the screaming stopped. He was talking like crazy and would not shut up. We had eye contact. We were getting our boy back. After a ton of research I went and found a natural doctor. She helped with the diet, we got a heavy metal test, we got a yeast test, allergy testing. The works. She was a God Sent. Because after my research we all know Ethan had autism.

Fast forward to my baby turning 6. I have to say after two very long years of working hard on him, he is fully recovered. We are gluten, dairy, soy, crap free. We are also 95% corn free. Along the way we have found he is very allergic to gluten, mushrooms and sulfur. He went from almost being kicked out of preschool to being a smart boy who I want to try and send to private school. Because I can not keep up. He now does Karate and is currently an orange yellow belt. He is sweet and kind. He is very loving. We got very lucky we know this. We don't take a day for granted with him. We lost two years with him. We will never get those two years back. But we have him now and all we can do is move forward.

So with the help of a team of four doctors, supplements, diet, speech therapy. We have him back.

So here is what we think happened. His two year shots gave him an infection which lead to seizures, once we got the seizures under control the Celiac disease came out. Because we did not know about the Celaic for two years, he also fell into allergy induced autism. Which that explains why the diet worked so well on him.

But honestly as we look back and knowing how hard we worked and where we are now. We are amazed. No I would not wish this on anyone. But I do like the road we are on now. This travel has really opened my eyes. I get the joy of cooking gluten free. I started gardening and canning just so I know what is in my son's food. But on the other hand saddled with medical bills and I don't know how we are able to keep our house from month to month. But I have my son back.

And I got the joy of seeing my son turn 6 today. Where he invited his preschool class and about 1/2 showed up and had fun. He had so much fun turning 6, and Ethan is so looking forward to kindergarten. Now if I can just figure out where to send him right?

Here is Ethan sneaking a birthday cupcake. Just don't tell him they are full of zucchini!

1 comment:

cooperkelly4 said...

Marcie, what a rewarding story for all your hard work and love is paying off. It is inspirational and thanks for taking the time to share.