Backward slide

So we went to church yesterday, and they gave him Nilla Waffers. He was a terror last night & today. It is amazing what a difference it has made in him to remove the gluten & dairy! Those morons that say there is no proof the diet helps these kids obviously does not have one of these kids. http://news.yahoo.com/s/ap/20071029/ap_on_he_me/autism_screening;_ylt=Aq1BMnEAue2fYVAVh44LcrtZ24cA
This is the article published today and televised on Fox News. If they dont believe in the non-medical intervention techniques saying "there is no proof it helps"... then why dont they proove it doesnt?

We saw Dr Goebel (pediatrician) today. He said he felt like Brayden would really improve over the next year or two. Also, he felt like Bray would enter the aminstream when going to school. But he did agree with the PDD diagnosis. :(

Also saw Dr Rider (chiropractor). He offered to treat Bray for FREE! Just out of the goodness of his good little heart and the desire to help my little man. THAT is a blessing!

ENT Visit

We saw Dr Gamble today for ear tubes & adnoids to be removed. We are scheduled for surgery 11/5 at Presby Dallas. He doesnt believe Dr So (neuro doc) was correct in his diagnosis. That would be nice! He thinks Bray has lost about 25% of his hearing in his left ear. He thinks if we can get the sinuses & ear as healthy as possible, Bray will start to turn around. He is going to use a different kind of tube this time in hopes they will stay better in the ear drum.

No signs of separation anxiety today - so there's another plus! But he did have a meltdown at the Dr's office.


Also had a battery of blood work done at the lab today. Makenna wouldnt even watch when they drew blood. She said she felt bad for him. AWWW!! Sweet girl!

So the most frustrating part of all of this is the stupid stuff. Dr So wrote a prescription for physical, occupational & speech therapy - WITH THE WRONG KIDS NAME, BIRTH DATE & DIAGNOSIS. I called for over a week, and despite the violation of privacy laws, they would not return my phone calls. I had to physically go up there to get it corrected. then when I get to the lab to do the blood work he ordered, he didnt write down the codes for the labs he wanted done. Poor girl had to hunt & search for them. After all that, she couldnt do 4 of the 6, because they dont do them, it has to be drawn from the spine. Seems to me the Dr ordering them should knwo that since they can only be obtained by AMNIOTIC FLUID! Then the other Dr that ordered bloodwork (Dr Ferrell) didnt complete the forms correctly so we had to wait for the office to fax the corrected papers. GRRR. I didnt want him stuck twice so I was trying to get everything done at once. Needless to say, they didnt do all the testing he required either. They didnt even know what it was, despite the fact it was on their pre printed lab requisition. Wow, I am exhausted!

Results of the GFCF Diet

So I dont want to count our chickens before they hatch, but he is doing better. It is still too early to tell, but he had a great day at school Tuesday, meaning he didnt cry a bit when I left and didnt tantrum! That actually huge. He goes back tomorrow, so we will see if it was a fluke. So proud of that little man! Today he sat and cuddled. Another rarity. He was following direction and has had better eye contact too. So we will see. So far so good. Hopefully the longer he is doing this diet, it will get even better!

We start a new begining!

We are feeling stronger than ever after today's worship service! We had the church leaders pray for Brayden & our family to heal. Very powerful stuff! Then went to whole foods for some gluten free & casein free foods. So tomorrow is a new day.. Bray will begin his week with a prayer for healing and diet to expedite his journey.

For anyone else who is curious, I went to the TACA website to pull the GFCF (gluten free casein free) diet. We scoured Whole Foods for 2 hours. At checkout the girl was asking me if some of the stuff was good... told her it was out first visit shopping for these foods. THEN she informs me they have an extensive list of the gluten free foods, and would I like a copy. UH, Yeah, that would have been helpful 2 hours ago. :) So, if you ever have to shop for these, ask customer service for your free copy! I had no idea you could do that. Oh well, I am learning.

Wish us luck... we have many appts to get set up for speech, occupational, and physical therapies, surgery, DAN! (defeat autism now) doctor, allergist/ immunologist, and chiropractic (I am not leaving any stone unturned!). Some are set, others I will sit on the phone forever setting up.

I do feel stronger than ever and not so overwhelmed after today's message at church. It was truly the words I needed to hear (I think Chris too). He talked about being brave and fight like a warrior. GREAT message!

How am I you ask?

Many people have asked how I am doing with all of this. Well to be honest, I am kinda numb. I feel beat up. I would prefer to lay there on the floor with Bray and cry with him. To buckle would be much easier, but I cant, so I am putting on foot in front of another, looking forward so as to not miss any clues or answers. Now if you look me in my eyes and ask that, I will cry. So dont :) I have however been incredible touched with the emails I have received that people think I am strong. I dont see that in myself at all right now, and dont understand how how many people can think that of me. One incredible inspiring email even called me a "strong woman, actually one of those rare strong and nice women". Thank you for seeing that in me, all of you. I have been looking at these emails and holding on the words you guys have been giving me. It really is a concrete thing that I can hold on to when I get overwhelmed. Thank you so much for your uplifting words!

Here is a direct link to the PDD diagnosis:
http://en.wikipedia.org/wiki/Pervasive_developmental_disorder
http://www.childbrain.com/pdd.shtml

Apraxia - the second diagnosis

I forgot to mention the other day, there was a second diagnosis. I was a little hung up on the pervassive developmental disorder diagnosis. He also has Apraxia. It is defined on this website & below:
http://www.apraxia-kids.org/site/apps/nl/content.asp?c=chKMI0PIIsE&b=839037&ct=837215


What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.
The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.
The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

Upcoming....

This is one place Bray will receive treatment for physical, occupation & speech therapies
http://www.baylorhealth.com/locations/och/frisco.htm

He will also be seeing Dr. Rao which is a DAN! doctor here in Plano 12/5 & 12/12. Dan! is Defeat Autism Now specialist. If you read or heard Jenny McCarthy's story, this is the style of doctor that helped her child recover.
http://www.autism.com/ari/ari-lists/us/Seshagiri_Rao_%20M.D..html

Upcoming appts

Wed 10/17 neurologist Dr So
Thurs 10/18 Dr Rob Jacobman
Sat - more testing with Dr Jacobman
Thursday 10/25 Dr Gamble - ENT for tubes and adenoids to be removed
11/8 Allergist - Dr Sugarman
11/15 dentist - wont that be fun!
12/9 recheck with Dr Goebel

Diagnosis is in

So the diagnosis we were given today from the neurologist is atypical autism - PDD which means pervasive developmental disorder. He wants us to have occupational therapy, speech therapy and much much more.

A few questions answered

Brayden has passed 2 hearing tests, the latest being in May. He did have tubes put in last November, but they failed 3 months after they put them in. We will have them re-done, as well pull the adnoids. Funny little thing...autistic kids have frequent ear infections - which starts the antibiotic cycle, bringing in the yeast, which becomes overgrown and ferments making them feel kinda drunk like. Then as their body is trying to combat the yeast, it is at max capacity for defense, creating another infection, or food allergies such as gluten and or dairy can not be combated with all this going on. That is the connection I have found.

He has met his developmetal milestones - all except for talking.

Pictures of Boo & Roo

MRI

We had the MRI yesterday. As I figured, everything (except a sinus infection) is fine and normal. I never thought he had brain damage (from being blue at birth) or a tumor, but at least we can officially cross it off our list.

Tomorrow we see a new neurologist - Dr So. Hopefully he will say there is no way Bray is autistic and we can continue trying to figure it out. I am willing to go to the ends of the earth to find out and treat whatever it is, I just really dont want it to be autism.

Just in case it is though, I have been doing some researching and studying on diet modification and such. I have removed Bray from Milk, and will most likely proceed to dairy all together. Potentially (depending upon diagnosis) removing gluten from his diet as well.

Last week I went to the health food market and got him some colostrum, acidophillus, and b-12 to combat the yeast from the dozens upon dozens antibiotics he has had to take, and boost his immunity (hopefully warting off any additional illnesses). I also started him on Goji jiuce 1 tsp a day.

Neurologist appt

We met with the neurologist (whose degree came from PUNJAB). He was as useful as a poop flavored lollipop. He suggested we put Bray on Clonidine - a blood pressure medicine to reduce his anger. Whatever! I am not playig chemistry set with my 2 yr old! http://en.wikipedia.org/wiki/Clonidine

Dr Goebel's appt

Dr Goebel (our peditrician) sat with us for an hour today! I was most impressed at his level of attention to Bray as well as myself. He is going to order a sedated MRI for next week. He currently does not have a diagnoses, but autism is looking suspicious. Here are our concerns for Brayden that raises the question if he autistic.

• He tantrums above & beyond normal kids - 45 minutes to 1 hour
• He lines up objects - mostly cars
• He tippy toe walks
• He does not understand the concept of sharing or waiting his turn, and wants it now! This is above & beyond normal!
• He can not be re-directed.
• His only focus can be sustained on cars & TV.
• He acts like he doesnt hear you.
• He is extremely defiant.
• He "flaps" when he is excited.
• Very clumsy.
• Severe speech delay - wont sign either. Learns words and then looses them.

He however does not fit the typical profile in that he does sleep well, and eats very good. He is also affectionate, and wants to be held. He does suffer from TERRIBLE separation anxiety.

And if I hear 1 more person tell me he is fine, I am going to scream like Bray! He is not fine! This is not normal 2 yr old stuff! He needs help and that is what I am on the quest for. I am trying to learn what is going on so I can help him deal with it. We have a small window of opportunity to get him where he needs to be. So please... do not tell me he is 2, he will grow out of it or there is nothing wrong with him... please! He needs appropriate help to ensure that he will eventually be ok.

For those of you that are curious about Brayden... here is the story.

Since Brayden was born, he has had serious issues with tantrums. Yes, even at 1 or even 3 months, he had screaming fits. It was not colic. I am not sure what it was, but his temperment was evident then as it is now.

We took Brayden to several doctors to find out why he cried so much. They decided he had anal stenosis causing serious constipation. This was the discovery after upper & lower GI's, abdominal CT scan, MRI, X Ray to name a FEW. So at 3 months they went in and corrected the rectal issue. The crying did not resolve.

As a side not for later... Brayden was a few weeks early at birth and was born emergency c-section due to a rare placental problem where he wasn't getting the oxygen & nutrients he needed. He was blue and rushed to the NICU at birth. He remained on a respirator for a week and stayed in the NICU for another 2 weeks to get stronger.

The screaming has never stopped. People stare when we are public, and poor Makenna goes nuts asking me to make it stop. But I cant. I excused his behavior for the longest time saying when he learns to communicate, he will get better. Now at 2 1/2, he still isn't talking much, and the tantrums are getting worse. We have been in speech therapy, developmetal services, and behavioral psychology for 7 months without any luck. He will learn a new word, and just as quick as he learned the word, it is gone, and will never return. We are seeking advise from new doctors (neurologist, MRI of the brain, allergist and ENT) for any more ideas on how to help him.