More Medical Issues...

So yesterday was our yearly check-ups for the younger boys, J & N. I purposely had the appointments back-to-back so I could get it over with. :-)

N is now on the growth chart! LOL Last year he wasn’t even on it. Yea! He is having a urine re-test to be cautious but otherwise his checkup was great.

On to J…so on top of his ADHD, Kindney-reflex, Asthma, IgA Deficiency, Autoimmune disease susceptible, Washed blood only transfusions, Aspergers, Raw Carrot Allergy, Gluten-free self he now has Scoliosis!! Seriously. Can you believe it?!?! I am so P.O.ed that I don’t know what to think, do, or say!! Seriously! This child already has so much to deal with and now this. I completely thought to myself “Are you joking??!! Couldn’t it be one of the other boys? Why him?” I know that is mean to wish it onto another one of my children but he has sooooo much to deal with already!! How is this fair to him? I am soooo MAD!! This was/is me:

So last night I read up on yet another medical issue for my poor middle son… Scoliosis. The experts don’t know why it happens. There are 2 different kinds- C or S curve.


J has an S curve.

There is about a 20% chance that it won’t get worse. If it does get worse (typically happens as a child goes through puberty) then he can wear a brace that will prevent his spine from continuing to curve. Once he is finished growing, if his spine is curved to a certain degree (from what I have been told it is like using a protractor for measuring math angles), then he will have surgery to fuse his spine. If untreated it could cause organ issues…like crushing them. If you “google” scoliosis you will see some pictures that are not that nice to look at.


In the end I am sure I will have to look forward to many years in a brace and then another surgery! On top of everything we already are dealing with!! I am sorry to be a pessimist here but they told me that his kidney reflex had a 90% (or some such high percentage) to naturally reverse itself by the time he was 5…he had surgery when he was 6 1/2 yrs old. So you can see the reason for my bitterness and lack of hope here. In this moment I just cannot look at this as the “glass is half full”. This is just too much on top of everything else.


Even though I am disheartened by the diagnosis I have decided to be pro-active. From the articles I read it seems that people who do certain stretches, see a chiropractor, and/or do karate (I guess because they do a lot of stretching?) tend to not curve as bad. So we visited a chiropractor today- someone we have known for years. He said he has dealt with many children who have scoliosis. Most of the kids he has worked on have not had to have surgery. The stretches/chiropractic visits seem to help. J will see him once a week for the next month and then once a month until he hits puberty. We are also going to start doing back stretches every day. As for the karate- if we had the money I would really consider it but as it is we just can’t afford it. The main issue at the moment is getting him to not do flips, somersaults, bridges, etc. Evidently these are no-nos for people with scoliosis…unfortunately he is determined to work on his flip throw-in for soccer. (See here: http://www.youtube.com/watch?v=fqIJSzOf7bM)

I am convinced that somehow all his issues are connected, even though supposedly scoliosis is not an autoimmune disease (at least as far as they know). How could one little boy have all these issues and they not be connected??

Family

Why is it that family can hurt you so much? I am not talking extended family but immediate family. Like your parents, or siblings. Why as we age do we have to distance ourselves also? I loved being close to my siblings but it seems that as I got older (and had moved away from home) we got more distance. Now I can’t seem to get to know them again- And not for lack of trying. It just doesn’t seem to work.

So warning to the young: Do not move so far away from home if you can avoid it.

Death comes aknockin again...

And the death question comes up again…how do you deal with death and children. My oldest son (12yrs), K, had Boy Scouts tonight. Afterward he found out that one of the boys died while on his way to Scouts. We have had a few family deaths in the last few years but this is the first death of someone who is anywhere close to K’s age. He seems o.k. but I don’t think it has sunk in yet. At the moment he is more upset that this child’s death is causing a mutual friend (I will call him JM just for clarity) pain. JM was good friends with the dead child. Tonight on the way to Scouts K had told me that JM is one of his “true friends”- someone who helps you just cause, who is there for you, and really cares about you. When K talked to JM tonight, JM cried while he told K what happened, how good of friends they (JM and the deceased child)had been, how upset he is, etc. K didn’t seem to know what to do, say, feel, etc. But I am proud of how he was there for his friend. K talked/texted with him for over an hour. They are suppose to talk again tomorrow too.


So while trying to figure out what to say to K I started pondering what I have taught my children about religion and God. I discovered I have lagged in that department. When I was younger, religion was always there. I got it at home, at church, with friends, family, etc. Since we moved away from my parents we haven’t found a church —or I should say I haven’t found a church, since my husband refuses to attend. The kids and I did attend a local church for a while but I discovered that my kids were unable to tell me the most basic Bible stories. Then I started working full-time and am required to work Sundays so we haven’t looked for another church again. Not sure there is much I can do about working Sundays at this point…but sometime in the future we will find another church.

For now I have searched through the Bible and have found some scriptures to comfort my son.

Here are some that I have found: 1 Thes 4:13-18; John 14:3, 27, 28; Rev 21:4; Rev 7:16; 1 Cor 15:52-54; Luke 18:16. I am going to use Mat 5:4 and Is 34:18 to let him know it is ok to grieve/cry. And then Ps 23 for comfort. Feel free to use them.

I have also decided that starting tomorrow we will have our first Bible story time. :-)

Groups call for Federal investigation of human fetal DNA/autism link in vaccines

The following was emailed to me. I found it interesting. I had never heard of this link before. Maybe you will find it interesting too.

_____________________________________________________________________________
For Immediate Release: May 11, 2011


Groups call for Federal investigation of human fetal DNA/autism link in vaccines

(Largo, FL) Children of God for Life ( www.cogforlife.org ) and Sound Choice Pharmaceutical Institute ( www.soundchoice.org ) are calling on federal officials to investigate the cause of autism in children who have received vaccines produced using aborted fetal cell lines.

Past studies have focused on the use of thimerosal in vaccines as reason for the rise in autism. However, despite the removal of this preservative, autism continued to rise, leaving many to assume there was no link between vaccines and autism.

“Change-points in the rise of autism do not coincide with Thimerosal in childhood vaccines,” stated Dr Theresa Deisher, Chief Scientist and founder of Sound Choice Pharmaceutical Institute (SCPI). “However, those change-points do coincide directly with the use of human fetal cells to produce vaccines.”

In March 2010 the Environmental Protection Agency published a study identifying what is called a ‘change-point’ in US and worldwide autism rates. Taken together, the work at SCPI and the EPA publication establish three US change-points for autism disorder; 1981, 1988 and 1996, whereby some sort of exposure or environmental trigger affected children born in and after those dates. That trigger was the introduction of fetal DNA in vaccines.

In 1979, Merck’s MMR vaccine, which uses fetal cell lines in the rubella component, was licensed for use in children beginning at 12 months of age. Autism in the US began to rise in 1981, then spiked dramatically between 1983 and 1990 and again in 1996. In 1988, measles outbreaks caused a massive MMR vaccine compliance campaign which increased vaccination rates from 49% to over 82% by 1991. And in 1989, a second dose of MMR was recommended for children who were not immune to measles after only one dose. Then in 1995, the US licensed Merck’s Varivax varicella (chickenpox) vaccine. Like the MMR, Varivax also uses fetal cell lines and is given to children aged 12-18 months of age.

Deisher’s study and the EPA change-points reveal the same results for the UK, Canada, Denmark, Japan, and several South East Asian countries as the fetal vaccines were introduced to those markets.

“These vaccines are contaminated with human endogenous retrovirus K (HERVK) that is in the same family as the MMLV virus that induced leukemia in young boys in gene therapy trials”, noted Dr Deisher. “Additionally, the vaccines contain significant residual human DNA fragments that can insert themselves into vaccine recipient cells through a process known as homologous recombination. This insertion can cause genomic disruption resulting in autism.”

The early findings of Dr Deisher drew the attention of at least one other well-known scientist from the pharmaceutical industry, Dr Helen Ratajczak. In her paper published in the Journal of Immunotoxicology she noted that thimerosal was removed from the MMR vaccine in 1979.

In a March 2011 CBS news interview Dr Ratajczak stated, “That DNA is incorporated into the host DNA. Where is this most expressed? The neurons of the brain. Now you have body killing the brain cells and it's an ongoing inflammation.”

Children of God for Life’s Executive Director Debi Vinnedge was not entirely shocked by the findings.

“While we have focused primarily on the moral aspects of using aborted fetal material, the question of that DNA’s impact on autism have remained unanswered”, she stated. “It is critical that Dr Deisher’s work is explored further, especially since the FDA is well aware of the dangers of extraneous human DNA in vaccines.”

In the 2008 journal Biologicals, (pg 184-197) FDA scientists stated the danger of residual DNA in vaccines “has been debated for over 50 years, without resolution”. Those dangers include cancer, autoimmunity and genomic disruption.

More startling is the amount of DNA Deisher found in these vaccines. While the FDA guidelines allow for no more than 10ng per vial, on average the rubella vaccines contained over 140 ng per vial.

“I would call this a ticking time bomb, except in this case, autism has already exploded”, stated Vinnedge. “The CDC and FDA need to recognize the importance of this new evidence and provide real solutions for parents.”

Self-evaluations

So this blog is about some self realizations I have made (or been made aware of -LOL) in the last few weeks.


I have come to the conclusion that I may be a friend snob. What do I mean by “friend snob”? Lately I seem to have to inject my opinion into every conversation. I don’t mean to – it just happens. If my friend’s child did something awesome…Mine did something too…If their child did something horrible… mine did something worse….I have decided I need to think before I talk. Just nod and smile. :-)

It was also pointed out to me that, when I am blogging or posting stuff on facebook, it is more glum & doom than happy & glad. I complain more than I celebrate. I have been making a huge effort to correct this. I am trying to say/post 2 happy things for every 1 complaint. Does this always work? No! LOL But I am trying! :-)

My sisters both tell me that I tend to freak-out about some things- especially medical stuff. After I thought about it for a while I realized I do tend to do that. I don’t know why…I didn’t use to-I don’t think so anyways. I think it started after my 2nd son got a little older and we were in the ER/doctor’s office a lot. I don’t know when and I don’t know why! Either way I am trying not to share my every little worry (especially medical) with everyone. I will do my research, talk to my hubby, and then tell only my mother, unless asked.

This is the end of my self-evaluation. I hope it helps someone else.

Gotta Give Props to the Grandparents

So I am feeling a little sentimental tonight. We just returned from a great visit with my parents over Easter weekend. The best part, other than getting to visit, was that I didn’t have to argue about the changes I had made. Let me explain- I took my son off gluten again (wheat &barley)- So no pastas, breads, things with flour, etc. But my mom/dad made it so easy! Maybe it was because they had seen the evidence from the last time I took him off gluten. I don’t know but it was so nice not to have to defend my choice. My mom & dad were ready- they went out and bought gluten-free noodles, crackers, pizza dough, and dessert. And that stuff is expensive! I was so appreciative that they took it upon themselves to buy it. 1- I didn’t have to buy it. 2- I didn’t have to pack it. 3- They gave me the left-overs to bring home. &4- I didn’t have to worry about what my son was going to eat (or not eat). My mom even helped me supervise what he ate when we went to a family gathering.


It is so nice to have family who support you! I love my mom and dad!! :-)

Gluten-Free Again- Thank God Almighty- Gluten-Free Again!!!

Sorry it has been so long- it seems the days just keep getting shorter!


O.K. So the medical issues…well when we went to the doc for my middle son’s checkup the doc had a lot to say. He was in the room with us for about 1 1/2hrs. I am sure his next patients didn’t like it but I loved it! After our ordeal with the previous doc I was glad that I had found one who would listen to me & was willing to try natural remedies.

Anyways at this appointment he told me a lot of stuff but the main things were that he diagnosed my son with Aspergers (along with ADHD)- I forget the specific terminology (Social something) but it was in part due to his social skills. He also said he thinks J is either sensitive to gluten (if you will remember I had taken him off gluten at this point) or had celiac disease. But in order to prove him right J had to go back on the gluten. I really debated doing this…but if he had celiac disease and we didn’t know it could cause issues later in his life. So we went back to the gluten…For 5 ½ months I have been doing a count-down of when I could take him back off. It was horrible. If I didn’t believe in his behavior change before I sure do now. He only needed to be back on the gluten for about 1 ½ months to do a blood test. Well his blood work came back inconclusive so we had to go to a pediatric gastrologist to have an upper GI done. And of course it is months to get into a specialist’s office! End result- he isn’t allergic to gluten just sensitive to it. Thus he is now gluten-free again.

This time I am trying to make sure he has no gluten whatsoever! Did you know chapstick has gluten in it? A lot of candies do too- and unless it is pure 100% chocolate you can count on it being in your candy bar. Even sunscreen and playdough have gluten in them! Last time he went gluten-free I concentrated more on the breads and pastas. Now that I have that down pat I am going for the hidden gluten.

Here are a couple of websites I have found that seem to have great info for gluten-free people:

http://glutenfreerestaurants.org/index.php


http://www.livingwithout.com/

Medical issues

I haven't written for a while...Sorry...I am in the middle of sorting out medical issues of one of my boys. Once I figure out what is going on I will blog about it.