Tuesday, January 26, 2010

Another Daniel Update

Although I never said it outright, some of you may have guessed that we don't do routine doctor's visits. We don't vax and our kids are developing normally. We've had some bad experience with doctors in the past and hadn't found one we were comfortable with in our area.

While in the hospital, I was discussing follow-up visits with one of pediatricians. I told her we had had bad experiences with some in our town. She asked if we vax, and recommended a D.O. who was non-vax friendly.

We had our first visit yesterday and I am very happy to report we have found a doctor that I trust. Where there is concern that this could all be a genetic disorder, we are going to continue to go.

The doctor is sure we don't need more physical therapy, as Daniel is walking, running, climbing, even pushing his brother down. Daniel still has a few lingering confidence issues, where he isn't sure he can make it physically, but he has proven himself well.

One thing that was brought up was possible speech therapy. There are two reasons for this.

Daniel has developed a Maine accent. Neither Dan nor I have a Maine accent. Maine accents are generally reserved for those in the Downeast region of Maine, around Bangor, Maine (pronounce ban-Gore, not ban-ger). We have never lived there, but we say our fare share of "wicked" when we are not talking about something evil. Otherwise, we sound like normal Massachusetts folk, just like everyone else in Maine. My son, however, now pronounces "more" as "moy-ah" and "talker" as "tock-ah".

My son has started pausing mid-word. Instead of normal "yeah" he says "yea... ah". Instead of "game" he says "gay... ame". Maybe they are two descriptions of the same problem. Anyway, we are going to keep an ear on it and get back to the doctor about progress.

Other than the newly developed speech impediment, Daniel is back to himself. He's a little unsure of himself at times, but he has pulled through rapidly. His personality has fully returned and he is back to micromanaging his brother's play.

78 comments:

Clara said...

I'm glad to hear that Daniel is getting back to his old self!
I would love to hear more about what prompted your vaccination decisions as I am undecided on the issue when it comes to children.

Tammy said...

SO glad to hear he's well and playing like a little boy again! And the new doc...wow, I didn't even know there were non-vax friendly MDs. Jackpot.

Tree Huggin Momma said...

Glad to here he is doing well.

Anonymous said...

I don't know how old Daniel is, but if he's under 3 he qualifies for ECI. They have really good services, are free, and done in your home (so no carting kids all over, entertaining other kiddos while one is in therapy, and no interruption of major schedule issues). My younger son was with ECI until it was discovered that his issues ran deeper than was first thought. We moved to private therapy. It's not hard for us since both boys have to have multiple therapies, I was able to get them scheduled all at the same time. But ECI works great for issues such as Daniel has.

Anonymous said...

You don't have to post this, but I don't know how to email you. I added you as a friend on FB. I didn't want you to wonder who that person was that friend requested you. Hehehe.

Patty said...

I'm so glad you have found a doctor you trust. No matter one's practices or beliefs sometimes it is hard (but important) to find a family practice that works for the family.

Unknown said...

That's all around great news! Finding a doctor you trust IS hard, but I'm so glad you've found one. You may not ever have the need to visit him, but it is nice to know you have someone in your corner, advocating for your child's well being (and not some pharmaceutical company) if something does come up.

Anonymous said...

Bangor really is not "Down East". Down East is Hancock and Washington counties.

Hopewell said...

I am happy things are going better and personally relieved that your children will be getting more medical care. You are very right about Ronald McDonald house--great charity. I give them change all the time. I know that it is difficult to write a blog and be picked on by readers, but it's nice, too, to see that even some of those doing the picking do CARE about you and your family. I know that's how I feel with my blog anyway!

Audrey at Barking Mad said...

Emily,

I hate to contradict you, but you are mistaken when it comes to where the "Maine accent" is most predominant.

The Maine accent is an amalgamation of several things including French (in the far northern border communities) and Enlgish (as in England) with a spattering of Irish and Scotish - again, as Maine was primarily populated with people from those areas of the world (what is now the UK) when people first began settling and staying in Maine.

In all honesty, the Maine accent is much closer to proletarian English than it is American. Further to that, it's not only predominant in Bangor. Hardly where it's the most pronounced either.

I've traveled to several parts of Maine (my father's family hails from Maine and I just moved from Maine to upstate NY, temporarily), and in some places the accent is much thicker and in others, not so much. Bangor has no trademark on the accent.

Some of your son's speech issues may be inherint with his age itself and not so much a part of developing what you've termed a "Maine accent" simply because it *sounds* like it. Honestly? If we're picking nits, it sounds more like Boston than Maine. This has more to do with the mechanics of speech rather than the locale in which Daniel lives, and how his teeth and lips function in order to produce what you're interpreting as a Maine accent.

We're from Cape Elizabeth and whilst I grew up in So Cal and my husband, in Great Britain, our 4 year old daughter has a very prominent and pronounced "Maine accent" and it's because of the way her ear hears our own words and in particular, the influence of her father's accent ...which is logical because again, that's where the Maine accent hails from, and not because she's ever spent any time in Bangor. So naturally, her tongue and lips work together to try and replicate what she hears at home, and not so much the area she lives in...although at some point, when she enters school, I'm sure that will influence her speech patterns. We had neighbors in CE who spent their entire lives in Maine and didn't have any accent, and others who had a very strong accent.

Also, downeast Maine is NOT Bangor...it's mostly the Bar Harbor, Ellsworth, Machias, Eastport, Acadia National Part and adjacent areas. It mostly refers to coastal areas and certainly not Bangor as that's far too inland to be considered "Downeast."

I hate to nitpick Emily, but being a "Maine-ah" myself, I found it more than just a tad obtuse on your part, and as someone (myself) with a deep and lifelong affection for Maine and all things related, a little insulting.

Hopefully you'll be able to connect with a wonderful speech therapist (there are several that are affiliated with MMC/BBCH and they're awesome!)who can help you sort out the mechanics of Daniel's speech development and head off any sort of impediment he may have developed.

Also, any speech therapist you work with will point out the correlation between proper diet and nutrition and dental care and speech development...just something to think about.

Anonymous said...

I vaccinate. I know that some people don't because they are worried that vaccinations lead to Autism (I'm not sure that this is your reason.) I have a kid with Autism, and I still vaccinate.

Here's why.

I don't believe that vaccinations cause Autism. But even if I did, I'd still vaccinate. I would rather have a kid with Autism than a kid dead from polio or whooping cough or some other disease...and risk the chance that my child might infect some other unvaccinated child.

I have people who sometimes send me emails that they think are really helpful about the connection between vaccinations and Autism. I always ask them to stop. I know they don't mean to be offensive...but suggesting that a child being like my bright, unique, outside-the-box-thinking son is worse than having a dead child is very offensive to me. (I know you didn't mean offense. And I don't even know if Autism is part of your decision. I just thought I'd throw out a different perspective.)

Melissa said...

That's great that Daniel has improved so well! He sounds like such a strong little guy. I totally agree with you about finding a good doctor. We do vax but we do delayed and selective vaccines. It is TORTURE finding a doc that will not look down on you for your parenting choices. I am glad you've found one that you like and trust! They are few and far between!!!

God Bless,
Melissa

dust in the wind said...

I'm glad to hear that he is doing so well. We will continue to pray for him, your family, and your new doctor. Have you ever read the book How to Raise a Healthy Child in Spite of Your Doctor ? I think you would like it. A few of the chapters are a little outdated (He talks about how he is glad there is no vax for chicken pox!), but there is so much really helpful stuff in there.

Anonymous said...

Glad that he is doing much better!

megna said...

Could you elaborate on why a Maine accent would mean speech therapy is warranted? After a week of visiting my ILs, I pick up their Philly accent. It goes away.

Sam said...

It's awesome that your boy is getting better. Now that you've found a doctor you're comfortable with will you be taking all your boys to the doctor for routine visits, or just Daniel because of what happened?

Amanda said...

Hang on, I'm confused. How is an accent a speech impediment? Unless, of course, this came on very suddenly and is totally different to how he was speaking before his illness.

I had an osteopath (DO) as my primary care physician for about fifteen years, and I loved him. They tend to be more holistic than MDs and I just liked his attitude re: medicating and finding the cause of the problem rather than just treating the symptoms. Obviously there are great MDs out there too (I have one now) but I thought my DO was great.

Nydia said...

Did the Dr. give you any insight as the possible reasons someone might suddenly develope a speech impediment after being so sick. I sure hope he is ok! I can't imagine how scary all this has been.

Rachel in Fl said...

My three year old grandson also pauses mid-word, and the second part of the word is pronounced in a much higher tone of voice. Maybe it is a game kids play. And kids will pick up the accent of the area they live in rather than the accent of their parents. A little speech therapy may not hurt, but don't get too wrapped up in believing that Daniel needs everything they will tell you he needs. Remember, therapists and schools don't get paid unless they have clients. So what do they do, find clients. Trust your insticts and he will be fine. Glad your found a dr. you like.

LifeMoreSimply said...

We do selective and delayed vax's, but also have trouble finding a Dr. who won't give us a hard time and who we also think is knowledgable. Ugh. Anyway, I think speech therapy is a great idea for Daniel. I have a double major in psychology and therapeutic recreation, so, of course, I think a Recreation Therapist would be a great option, too--and that person can also help with any physical or other problems that linger as well!

vm said...

So, has your view on health insurance shifted at all because of this awful ordeal? And now that you will be implementing regular doctor visits for at least one of your kids (hopefully all of them), has this altered your outlook?

I'm relieved to hear Daniel is doing so well in recovery. Wonderful news.

Rena' said...

I am so happy things are looking up for Daniel. It is great that you have found a doctor you can trust. They are hard to find.

Emily said...

The speech thing is new. I tried to make that clear in the post. I don't think having an accent is a speech impediment, but if you have one only after something like this, it could be a problem. Hopefully, it clears up as he gets back into the swing of things.

Perfection in my Imperfection said...

I am so glad to read your update. I continue to pray for your sons full and complete recovery. I know how hard it is to have a child sick and not sure exactly what is wrong with them. I will continue to pray for the strength of your family and the health of all of your children.

Bubblej said...

I'm glad to hear Daniel is doing better. I am also curious as to why you don't vax your kids. Shots that could stop them going through possible weeks and months of sickness? Sounds good to me! Also, as you are hoping to have a big family what happens if (God forbid) 10 of your children come down with something like measles at the same time? I'm pro vax, obviously, because I believe that they have been invented for a reason.

This is not meant as snarky, and I am sorry if it is taken that way but I have the exact same opinion when my IRL friends tell me they don't vax their kids.

Bowie said...

Sudden changes in speech can be caused by brain damage. Has Daniel had an MRI to check for this? It may just be a regression or something completely different, but the most extreme cases damage to specific areas of the brain can cause Foreign Accent Syndrome (wikipedia has a good article on it and it is rare). i'm sure little Dan will bounce back just fine, but your talking about how he couldn't walk before and now how his speech has become "accented" leads me to believe he might have damage to his frontal lobe.

simple in France said...

Yay! It's good to see his personality is comming back--the feistiness is a good sign. And it's totally normal for him to feel a little physically hesitant after what he's been through.

I'm also really glad to hear you've found a doctor you can trust. I too have had my share of bad experiences with doctors (don't even get me started). The thing is, like all professionals, there are really great ones and really crappy ones. Since it's your health on the line, you just have to find one you can trust. I'm always surprised at people who don't trust their doctors and spend their time ignoring the advice or second guessing--I say, find a doctor you like and then at least give his/her advice some serious consideration--after all, we can't all go to med school and your doctor should be a resource. Anyway, finding a good doctor is so important--I'm happy for you.

Trista said...

Hi Emily,

I'm a lurker, so this is my first comment. I'm so glad to hear that your son is doing better!

I just wanted to share a quick and funny story. I am from Washington State, but when I was six I went to Maine for a few weeks to visit an aunt who moved out there. Well, I picked up the accent, and when I got home, my parents couldn't understand me! It went away after a bit, but my parents still talk about it. ;) Anyways, maybe your sone picked it up while he was at the hospital? Maybe there were some docs or nuses with a strong accent.

Courtney said...

I have a question for those who don't vaccinate their kids.

Because most parents in our society do choose to vaccinate their kids, diseases like polio and diptheria have become somewhat obsolete. Therefore, even though your children aren't vaccinated, they are unlikely to be stricken by one of these devastating illnesses. In effect, you are counting on the rest of society to vaccinate and keep these diseases at bay.

What would you do if the majority of parents made the same choice as you and didn't vaccinate? What if enough parents stopped vaccinating and polio became prevalent again? Would you still make the choice not to vaccinate if your kids didn't have the protection of living in a country where the vast majority of people are vaccinated?

megan said...

I am the mother of two and we have chosen to vax on a delayed shedule, so I understand how hard it is to find a doc who will support this decision.

If you are looking into speach services I strongly reccomend looking into your local early intervention program, the services are provided on a sliding scale based on income and are provided in the home. It is very important at this age that services be provided in their home environment and they will also give you some things to work on as well.

I am glad to hear Daniel is doing better we are still pryaing for him and your family.

Cheryl said...

Emily-

I am glad to hear that Daniel is well on the way to mending but I do have to remark that I get a little angry when I hear of folks who do not vaccinate their children. Herd immunity only goes so far. What will you do if Daniel (or your other 2 children) contracts a preventable disease (which he is at risk for in light of his recent hospitalization) and is permanently affected or God forbid dies as a result?

I am also concerned: Have your children been evaluated on a regular basis by a professional to ensure that they are healthy? Not all checkups are vaccine centered.

Emily said...

I'm going to add a vax question to the FAQ. People can continue discussing it here if you'd like, but I'll save my thoughts for a different post.

Elizabeth said...

Emily,
I am glad you found a doctor that realizes what your views on vaccination are. My doctor is totally pro-vaccination, but also understands us parents which choose to delay or forego vaccination.
While I do not do all the well baby check-ups, we do do some. I want at least a record that my children have seen a doctor and get their weights and heights measured. Also, I find that it is good to have a relationship with a doctor during healthy times of the children's life in order to have a better relationship for when they are sick. When my daughter broke her arm, it was nice that she knew our doctor and he knew us as he x-rayed and set her arm. When my son needed to be evaluated for speech therapy, it was nice that our doctor knew us while he was evaluating him. You know? Doctors aren't just there for emergencies, and it is good for them to have at least something to work with from charts if there is a true emergency.

Maria said...

I'm glad you found a doctor you feel comfortable visiting. We had initially considered delayed vaccination but then our kiddo was born with a heart defect that would require multiple operations and hospitalizations. We decided the risk of delaying certain vaccines wasn't worth it. Our pedi was supportive of either choice.

I do have a question though. Even though you had homebirths, didn't they do the heel pricks and blood tests? All of the midwives we spoke with do them since it helps screen newborns for genetic disorders. It's also done again at the two week follow up with your pedi. We went the hospital route with a low intervention OB so Nyx had her heel pricks done in the NICU. Our kiddo also had a more intensive genetic workup to rule out DiGeorge syndrome because of her ToF but even that wasn't very expensive.

I can't remember if you kept your state insurance but if you didn't, get your boys on it ASAP. If one or all of them are diagnosed with a genetic disorder you will have the hardest time getting any kind of insurance. We belong to a group plan so Nyx is covered--but if we ever lose coverage and Congress doesn't get rid of pre-ex condition clauses or lifetime maximums, she'll never be able to find a policy. My cousin is dealing with this nightmare right now. Her son was a micro-preemie (24w1d) and can't get insurance because prematurity is a pre-ex condition. Nice, huh?

Glad to hear your son's on the mend! Best of luck to him!

Emily said...

Elizabeth, that was exactly what our new doctor said, that it would be harder to help if he didn't know them or have a good record. He's willing to be flexible with scheduling as long as he sees the boys somewhat regularly.

Maria, only our third was a homebirth, the other two were vaccinated up to a point, then we stopped. With the third, everything was optional. We did the screening for our homebirth, but nothing else. We kept the insurance, mainly because we thought we would be put back on with healthcare reform. Not sure that's going to happen, but with what happened to Daniel, we won't be getting off in the near future. That's horrible that being a preemie is a pre-existing condition, just horrible.

Anonymous said...

Emily, vaccinate or don't vaccinate, don't let "what if" stories make you change your mind.

We have two sons. We fully vaccinated, on time, our first son. We believed that anyone that didn't vaccinate was irresponsbile and a little off. Then, when he was two, we went to get his 2 year old well-baby visit. He got his shot, came home, and got a fever. No biggie, kids get fevers with vaccines. It got higher, but not enough to be of any concern, and he stopped speaking that night. We figured it was just because he didn't feel well and blew it off. We gave him his Tylenol (like you are instructed to do with vaccines) and sent him to bed. The next day, nothing. The words at the doctor's office were the last we heard from our son. We watched him quickly regress, his gut began to have horrible issues, he started to run for hours on end, and started to scream, and run into things really hard.

We have a child with Autism. We had a child with advanced speech (I have his medical records with doctor notes on how advanced he was and how other development was perfectly normal.). We didn't know what was happening when it all started. No one could explain it, they all had excuses, until the diagnosis was finalized.

Our second son's story is much worse, but I won't fill this comment area with our story. The point is, never, ever, ever give your child any medication unless you have researched it on quality medical sites, know the risks, know the ingredients, and know you want to do it. If you want to vaccinate, don't let anyone talk you out of it. If you don't want to vaccinate, don't let anyone talk you into it. Pray, discuss with your husband, and make your decision for your children, then stick by that decision, no matter what happens.

ETA: Our older son is thriving. He has OT, PT, speech, sensory therapy, homeschooling, lots of home therapy, and two loving parents who want to see him be the best little boy he can be and the best man of God he can be. Our younger son has OT, PT, speech, sensory therapy, and feeding therapy, will eventually be homeschooled, has home therapy, and also two loving parents who want the same for him. Our younger son has had a vaccine since he was 6 months old (when we got the formal DX on our older one) and our older one never got another vaccine after that incident. We have vaccine injured children, FACT.

Don't let things like "better than dead" scare anyone. Those aren't the only two options.

josie's friend said...

WIth all due respect, there isn't a shred of evidence connecting autism to vaccines. Not a single shred, and millions of dollars has been spent chasing this link. It doesn't exist.

If people have anecdotal evidence or links that they think prove something, it is merely coincidental, because there is no proven link medically.

That isn't to say people shouldn't make their own personal choices. I haven't allowed my daughter to get the Gardisil vaccine, but we did all the normal childhood vaccinations, because I thought the danger of Measles or Whooping cough was worse than the vaccine. For the ones on the edge, like Gardasil or Chicken pox, I opt out.

Devon said...

I am really glad you kept the insurance. :)

Anonymous said...

Things could be worse than a Maine accent. Surprisingly I didn't know you or your husband were linguistics. That is "wicked" :D

And it is always a good day when the older brother can abuse the younger one by pushing him down, eh?

Anonymous said...

Josie, you are wrong. If you read actual medical studies (not junk science or scare sites), you will see that more testing is being done and there is now cause for great concern on children that are genetically predisposed. There are quality studies that are generating a lot of concern. Billions of dollars are at stake if vaccines are proven to have more risk than death, neurological effects, and other reactions that VAERS has on it.

Be careful with such claims, they aren't founded on medical science and you might sway someone's decision to make a choice they didn't want and end up with very sick children.

stacy said...

My second child, he's 17 now, has autism. We had him vaccinated during the schedule they put him on.I would not have vaccinated my third child he is typical btw, and I use the word loosely! When Scott was little the "Vaccine Can Cause Autism" argument hadn't come up yet either.

I do think there can be a link between autism and vaccines. The rate of children being diagnosed autism (and please correct me if I'm wrong)has jumped from 1:450 to 1:150. My other children were vaccinated as scheduled and they are typical. It doesn't run in our family, either. That breaks my heart, Our Family is His, that your son did have some language and then lost it. Scott developed normally his first year of life, really before he was 16 months, but his language never kicked in in when it was supposed to- both cognitive or verbal.He started talking at 3 years of age, and that was after working with him really hard. Now he just gets OT at school for his decreased fine motor skills. Here is a simple check list you can do if your concerned about your child: it is called CHAT.

http://firstwords.fsu./pdf/ASD.org

Jena Webber said...

LIke it or not, you're on the vaccine debate.. Even though we had all of ours vaccinated, I would tend to agree with you. I didn't do the research that could have been done. It does sound like speech therapist might be needed.

Emily said...

Our Family, thank you for sharing your story. I can't imagine how frustrating it must be for you to hear people say there is no link between vaccines and autism.

stacy, thanks for the link. When I tried it, it didn't work, but I found this one and am thinking this was what you meant, if anyone else was interested:

http://firstwords.fsu.edu/pdf/ASD

Unknown said...

I didn't see you comment back on the "crap" comment, but I'll toss out there that when my son was hospitalized and we stayed at the RMH, we ate a nice homecooked meal every night while we were there, but we also ate a lot of CRAP while we were in the hospital. I drank way more soda and coffee, at more chips and cookies and jsut generally ate and ate, lots of stress eating and plenty of junk laying around to choose from.

I know how my experience was, so I never thought you were slamming the RMH volunteers or the food they made as "CRAP".

Anonymous said...

Stacy, thank you for your comment. Also, the new numbers are out. The rate has gone from 1:150 to 1:91. Those are the official numbers, not some odd sites own ideas.

I also want to clarify, I am not anti-vaccine. I am pro-parents being fully educated on the issue with real facts and full information so they can make the best decisions. I am pro-doctors educating parents and not pressuring them to do anything they don't feel is best for their child. I am pro-parents making a decision and soceity butting out of it. I am, however, pro-cleaned up vaccines. Our vaccines are nasty and have a lot of things in them that aren't necessary and hurt our children, even those without ASDs.

Stacy said...

Emily- thanks for posting the correct link. FWIW, my son flunked the CHAT test. He didn't share joint attention and never pointed,. Not pointing is a biggie. We had to show him how to do it. Before Scott was diagnoised with autism,he didn't raise his arms when he wanted to be picked up or wave bye-bye.

Anonymous said...

Hey, I thought you might like a website...www.welltellme.com. There are like-minded women on there...men, too. They are all about no vaxing and such. :0) Glad your little man is doing better!!!

~Justina

Anonymous said...

Yes, it's very important to freak people out with "your child will die" scare tactics instead of just giving them ALL the information and letting each parent make the full decision so that if something happens, they can't say they didn't know. I didn't know there was a legitimate concern about terbutaline and ASD's (yes, there is, I can provide the many articles stating these concerns and risks), about the nasty contents in vaccines and ASD's, about the effects thatt vaccines can have on predisposed children and the horrible effects they can have on a child's body (remembering that ASD's aren't just neurological at all, it's a full body attack).

Educate yourself parents. Decide with the facts, not scare tactics. You can just go to the manufacturers sites, the CDC, VAERS database (you can ask for the lot number of any vaccine your doctor wants to give your child and verify it on the VAERS system), and know that you don't have to go by their schedule, you can spread them out, skip the ones you think aren't for your family, and can even have many of the combo vaccines separated into the separate vaccines. You can also ask for your child's titers to be done to see if they have immunity and won't need a specific vaccine. (yes, these too can be done. I have all of them for my son, you should see his MMR ratings, egads!)

You are being callous about real children suffering life long problems. You are right, kids don't die from vaccines. Nope, none of them. Kids don't suffer neurological damage from vaccines. Nope, none of them. Kids with Autism don't die due to Autism complications... oh wait, that's right, we are now praying that we fix what's happening to my child BEFORE he passes away. To watch your child not able to get off the sofa because of his body wasting away is horrible. Do NOT belitttle Autism. It's a serious issue and one that, in SOME cases, can be prevented, if we would just open our eyes and our minds.

Anonymous said...

I am stepping out of this debate. I have actually researched and read ALL the information that is legitimate and out there. I have been tossed to the wolves because I don't want to further damage my child and "how dare you not vaccinate, what about other children". Funny how they don't care about my child. The FACT is, every parent should educate themselves and make fully informed decisions. ANYONE who disagrees has an agenda. A legitimate person with concern would want every parent to be fully educated on a subject, any subject. You wouldn't ask a parent to sign for their child to have surgery without knowing about the procedure, but they want us to put chemicals into their bodies on blind faith. That's not right, no matter who you are.

This is a debate that is really starting to flesh out with what parents have been asking about for years, "what's happening with our children". Things are finally coming to light that parents have been asking about for years. I am glad they are. If they make safer vaccines for the families that want them, that's worth it. If they make a better and healthier schedule for the families that want vaccines, that's worth it. If they clean the junk out of vaccines because of parents standing up and saying, "no more using our kids as guinea pigs", then it was worth it.

This is not a debate I will continue on. I know what happened to our child. My very pro-vaccinate on time, everytime doctor watched what happened to my child and it was VERY hard for him to ask me last year "do you think you might want to skip your son's vaccine this go around" when we took our younger son in. It was HARD for him. He doesn't believe in not vaxing, but he couldn't answer me when I said, "you tell me what happened to our son".

Call it anecdotal. But some of the greatest medical advances in our world have started with someone looking around saying, "I sure see a lot of..." or "what if...". I pray that my children will have one little part in helping another child and another family not have to walk through what we walk through daily. Now, if you will excuse me, I have to go clean diarrhea off my nearly 5 year old son, change his diaper, and try to calm his sensory issues down so he can sleep a bit tonight. THAT'S life with Autism.

Anonymous said...

Josie,
I'll bet people in the "science field" believed the lie about melting glaciers (as told by fellow scientists), too.

Of course the medical community is not going to cop to a link between autism & vaccs--it means billions in law-suits, plus more children NOT receiving vaccinations.

Crabcakes said...

I delay some vaxes and skip one of them (a minor one) and it has NOTHING to do with autism.

I'm not anti-vax. I'm anti vax "overload". There is absolutely no reason that children are better off getting 7 vaccines at once than spacing them out. And when a child has a reaction to a vaccine, it's hard to pinpoint which one when they've just been injected with 7 different diseases.

With two children having strong reactions to one of the vaccines, we decided to slow them down. We only get one at a time and we delay things like the MMR.

For my children, and for my family this is best. I've done lots of research and I respect other POV's.

I fully support the educated parent's right to vax on schedule, delay vax, or to not vax. It is my belief that more people need to do the same.

Gabriella said...

From Melissa:
"It is TORTURE finding a doc that will not look down on you for your parenting choices. I am glad you've found one that you like and trust! They are few and far between!!!"

Why do you think that is?
G.

Jen said...

Josie,

My husband and I are in medical fields as well (oncology research and cytogenetics), and we quit vaccinating our son after his 2 month shots. We did the research, and the risk is NOT worth it. Believe me, there are many risks in addition to autism. There are many things that can go wrong when you inject toxic heavy metals and poisons into the immature immune system of a DAY OLD INFANT (in the case of Hep B). As more and more vaccines are added to the CDC recommended schedule, the toxic load increases tremendously. I will NOT knowingly risk a severe, lifelong injury or death to my child, and I don't care what anyone else thinks.

The fact is that pediatricians (well baby visits every 2 months = vaccinations) and especially the pharmaceutical industry make billions of dollars from vaccinations. It's about money... period. They do not care if your child is going to be the one that is permanently injured or killed. In fact, they will most likely deny that it had anything to do with a vaccine. NO THANKS!

There is such a revolving door between pharmaceutical companies and the CDC, it is a disgrace. Not to mention that the board who advises the CDC on the (ridiculously dangerous) vaccination schedule in this country, is often made up of pharmaceutical execs who have a vested interest in giving children more and more vaccinations. Some are even listed on the patents. Can you say conflict of interest?!? And just who do you think is funding most of those "official, peer reviewed studies" discounting anything negative about vaccinations??? I've learned that when you want the truth, you must always follow the money.

See this document for more information, and whether you agree or not, I consider the author a reliable source:

http://thinktwice.com/Kennedy.pdf

By the way, most parents who opt out of poisoning their children with vaccinations are highly educated. They are smart enough to inform themselves about the medical care of their children, and they question the status quo. They are not idiots, or sheep. That seems to make a lot of people angry.

A previous commenter was correct when they said all the basic diseases (polio, measles, etc.) were on the decline BEFORE vaccinations began to be administered. See this link (scroll down a bit) to see real data regarding this issue.

http://stay-healthy-enjoy-life.blogspot.com/2008/10/vaccine-overload.html

Jen said...

I want to add that my conclusions and decisions are obviously my own, after conducting my own research. I encourage all parents to do the same. I am definitely pro parents in this decision, whatever that may be. I obviously feel very strongly about this issue, but every parent must do what is right for their own children. It is not my intention to offend or judge anyone else's decision. My only goal is to dispute people who are closed minded to parents who decide NOT to vaccinate, based on only "scientific evidence". There are many more things to be considered in the decision. Like I said... always follow the money!

Anyone who does not have your child's best interests at heart does not deserve to advise in their medical care, or your decisions regarding that care.

Nicole said...

I am so happy to hear that your son is doing allright!

It's great that found a doctor you trust and feel comfortable with. Having a family physician who respects your opinion and what works for your family is so important!

Good luck!

Gabriella said...

Thank you Josie's friend from the medical field.
I have a hard time reading some of these comments.

I am trying to comprehend why no vax people do not read, and do not believe in science, evidence, and how they can get on a histerical bandwagon.

I am trying to keep an open mind, but I cannot even imagine not to take small children to regular checkups, not to follow regular diets, I am trying to comprehend how people can believe a diet that was in practice 100-200 yeras ago, and
prooved to produce a shorter lifespan.

For weeks I honestly thought some of these comments were pure come-ons, because it just did not make any common sense to me.

I feel very sad.
G.

anna said...

Emily,
I enjoy your blog I have read it from the beginning, I prayed for Daniel and am glad he is ok. This is for you and for Our Family is his from a fellow autsy mama. If Daniel turns out to have an allergy to something or an immune disorder you may want to investigate an Alternative therapy called NAET it corrects the nervous system and immune systems response to allergens, and the body itself.

Our Family is his; my eldest is autistic, she was never vaccinated because I feared autism. She still has it although she is very high functioning, but non verbal. Through much careful research I have come to some conclusions about why she has it which I will not go into great detail here about suffice it to say that autoimmune diseases run strongly in my family coupled with allergies and food sensitivities. And that I believe there is a link between dyslexic parents and autistic children given the right factors.

She has many allergies to common foods. After taking her and having her tested for allergies we began her on NAET treatments the difference was amazing. She never had the digestive problems of many autistics but did have brain and behavior issues those have diminished. I accept that some of my daugters autism is genetic I am a scientist (amongst many things) with a very high IQ and I see some of her behaviors in myself at her age but mine were not so strong. GMO foods were not a reality when I was a child they are now, I believe those coupled with vaccines and numerous other enviromental factors are the cause/trigger for much of autism and other autoimmune diseases, and mental problems we see today. I am not alone in thinking this studies were done in the seventies linking chemical exposure in parents and autistic children in the seventies for more information see an article in Spectrum magazine October issue I think.

At any rate here is a link to the national NAET website with a provider list. http://www.naet.com/
Basically you can "cure" glutein intolerance ect, and stop the body from attacking itself which I know is what is happening to your little guy My Family is His. I am so sorry for the path you must walk it is a very difficult one I know; I will be praying for your boys also.

Emily take one day at a time, and don't let criticism get you down. I am tempted to believe that some of it comes fom feelings of inadaquacy on the part of your criticizer's and debating is healthy as long as it is done in a polite fashion. Comparing peoples choice to not vaccinate to saying that they would rather their child died of a preventable disease than be autistic is ridiculous! There have always been autistics amongst us (who do you think invented the wheel?) but they haven't been completely incapacitated by their environment, that is what Our Family is His is dealing with. I wouldn't trade my daughter for anything but I wish that the world were an easier place for her to navigate.

Anonymous said...

Gina, who said we don't go to regular well-baby/child visits? We don't miss a single one. In fact, our next one is Friday. No, we don't follow normal diets. Normal American diets are horrible. Fast food, processed food, junk, junk, junk. We follow a HEALTHY diet. We follow a diet that doctors SAY they want you to follow. Lots of fresh vegetables, smaller portions of meat (we eat meat at each supper, some lunches, never breakfast), healthy proteins, good carb to protein ratios (ask your nutritionist about this ratio if you don't know what it should be), good calorie count for each of our individual needs, no dyes, no HFCS (no matter what the commercials say, it's not a good thing), no preservatives, no additives, and so on.

I believe in medical science. I believe that some of it is sound, and some of it used to be sound (meaning they didn't know more and made recommendations based on the knoweledge they had at the time). Science is an ever changing study. I just also believe money drives many medical suggestions and I don't allow my family to suffer due to money. I research, research, research, use quality information, and we base our decisions on what God leads us to do in each situation, not on scare tactics.

Our children aren't healthy, but that's not for lack of medical care. My kids see medical professional more than most children (therapists, pediatrician, specialists, etc). I have said my piece about WHY they aren't healthy anymore (used to be healthy), but wanted to address the comment that was unfounded. I definitely take care of our children medically. We just don't vaccinate.

Anonymous said...

Anna, thank you for your comment. We are working very hard with a wonderful GI that specializes in children with Autism disorders. It's amazing what happens to their bodies. You are so right.

Please don't think that I think that vaccines are the only trigger for ASD's. I do not. I have seen, first hand, children born very different that are later discovered to have ASD's. I have seen, first hand, unvaxed children that are discovered to have ASD's. This is a multi-faceted disorder, that's for sure.

Beth- mom of 4 healthy, vaxed kids said...

I tend to agree with the genetic link to autism. I have a very close friend whose son bacame autistic very soon after his MMR. She is sure that was the cause. Consequently, several years later her sister did not vax her own son. He too became autistic at about the same age anyway. Coincidence? I think not.

That said, I spaced out my youngest's vaxes, and held off on the MMR until she was 3. To me, the risk of not vaxing at all is too great. I have 2 relatives who lost their kids to measles- one did not vax her child, who contracted measles at age 8 and passed it to her 6 month old cousin, who was not old enough to be vaxed. They both died.

Devon said...

We personally can't afford not to vaccine. My son is ventilator dependent, and a simple cold could kill him. For us, it really is a life or death matter.

Anna said...

Our Family is His I didn't mean that I don't think that there is a link between vaccines and autism I do. Had I vaccinated my daughter I believe she would be much worse. What I believe is that there are enviromental factors that coupled with vaccinations are causing autism to increase exponentially, and they cause it without vaccines too. This combination is causing our childrens immune systems to turn on their bodys and attack, it is causing their bodys to produce a poisonous sludge from their normal diet that attacks their little brains. It is not good and we need to figure it out!

I also believe there is a genetic tendency in SOME children this tendency is heightened by those factors, those children with the tendancy often become your savants etc because there brains were already a little different. Please understand that this is just my theory based on research, and talking to doctors, and researchers. SOMETHING is causing autism to increase exponentially, we need to figure out what that something is.

I agree that vaccines do save lives but when they cause a severe autoimmune reaction that is not good! Vaccines also kill people it does happen its an accepted medical risk that some people will have side effects or die as long as that number is in the hundred thousands it is considered acceptable, I accept risk to do otherwise is not good science but I don't like playing around with human lives. To echo Jenny McCarthy (not too sound lame) we need safe vaccines.

At any rate I have a ranch to run, and an extremely busy little girl and two babies so I have to go. I know this debate has passionate people on both sides. Just try to remember that noone is a bad parent for trying to protect their child be that by vaccinating or not vaccinating.

Oh and on the hundred year old diet, I am not sure that it was peoples diets that killed them a hundred plus years ago. People worked far harder back then, and they lacked good medical care. Our bodies have evolved on a survival of the fittest basis to a certain diet we started out as hunter gatherers and primitive farmers remember, we are designed to eat a high amount of protein, and fat but also alot of fiber and roughage. Also you might to research the idea eating your ethnic diet since that is what you are truly genetically designed to eat. Keep eating well Emily. I like Nourishing Traditions too, since I am married to a cattlemen (I do enjoy the occasional vegitarian meal though.)

Anonymous said...

Devon, and that's what I am talking about. Each parent needs to do what's best for their child. That's what's important here, doing what's best for your child, no matter what someone else thinks.

Happily Frugal Mama said...

My kids were vax'd mostly on schedule... my youngest has Regulatory Disorder and is in EI under "developmental delay". She is amazingly smart, but has social development that is significantly behind. This could turn into a diagnosis of Asperger as school age approaches, she is 5 now and it has been talked about... but no one is ready to make the diagnosis.

Anyway, we have no clue if there is a link with vaccines, but I would definitely look at a delayed schedule (at minimum) for any future babies. Some vaccines I am adamant about because if world travel is at all in the plans, diseases that aren't prevalent here are elsewhere in the world. Other vaccines are not necessary.

My daycare babies have received over 20 vax in the first 15 months of life! That is CRAZY.

Vaccines are a benefit vs. risk issue... for most, the benefits provided far out weight the risks... but if you are the parent of a child who has been injured, it's a different story.

Vaccines can be made safer... maybe someday that's what we will see happening.

Emily- I'm glad to hear you've found a supportive Doctor... many Docs tend to think they know best, even when we know our own children far better than they ever will. Our Doc knows that if I bring a child in with an ear infection... I've waited until I know it's bad... she understands I want to avoid antibiotics unless we can't. She understands that we always look at natural remedies first... she doesn't push drugs unless everything else has been tried.

SoMo said...

I think these debates are a bit amusing, merely because what does it matter if someone chooses not to vax, but you do. I am not worried if the kid next to mine didn't get the chicken pox vaxs or any of the others, my kid did get the vax. I say do what you feel is right and hopefully it will work out best for you family.

To add to my amusement, I posted on a blog that I wasn't planning on getting the flu or H1N1 shot for me or my kids. I had a 2 month old at the time. I was told by the blogger, in so many words, that I was crazy not to get it for my kids. Then months laters she wrote a blog about how her entire family got H1N1 and they got the vaxs.

I do vax on my dr's schedule, but I never get the flu shots. While I vax, I believe that we are too in a hurry to "cure" instead of letting our bodies build up immunities on it's own. I have one daughter in school and 2 kids at home. Next year it will be 2 at school and 1 at home. My son is probably the most disgusting person I have ever met and rarely are they sick. Maybe it is just them, maybe they have built up a good immune system from me not being militant about hand santizer or maybe we are just lucky. For whatever the reason, I am happy that we are healthy and that Emily's son is as well.

Heather said...

the topic of autism and it's potential causes, scares me so much. the numbers of children affected are way too high! i don't know if it's because we are more aware now or if autism is now more common. i tend to believe it's becoming more common. whatever the cause, i hope it is pin-pointed so that we can prevent it and protect our children.

i am a nurse and i believe that vaccines are important. however, if they are dangerous-that is not acceptable. it scares me to think that by following what was supposed to be a healthy, preventative vaccination schedule, it could have caused harm to my daughters. when they were infants, there wasn't much talk of the potential dangers.

we followed the schedule without much question-we did delay one vaccine for our second daughter after the first had a reaction. we also opted out of another vaccine that was new at the time because it was not available with any regularity. they'd receive one dose, then when it was due again, not receive it because of the lack of availability. we just stopped that one all around. but the issues that are faced now were never questioned then. i'm thankful my girls are healthy and i'm sorry for all who have had a problem.

now we will be looking forward as the girls become of age for the gardasil vaccine. my first thought was that it was a good form of prevention and wanted my girls to have that protection. thankfully, and unfortunately, i have learned that i need to question the safety of the vaccine...because of others who have had a bad reaction. at this point i will not be allowing my daughters to receive it until i know that it is safe. however, it is sad and scary that vaccines are mainstream yet potentially dangerous.

Pat said...

I find most of these comments terribly distressing.

Public health officials are doing a poor job of educating about the benefits and safety of vaccinations, judging by how many seemingly intelligent people are falling for the non-scientific and sensationalistic anti-vacc messges out there.

Anonymous said...

Just want to chime in & give MY opinion. No vaxing & no doctors here. My children have always been healthy. We eat an organic vegetarian diet, take herbals, exercise, do yoga, & live a simple green lifestyle as best as we can. Is my lifestyle & choices right for everyone? No! Of course not. But it's right for US.

To vax or not to vax & yes or no to doctors is every parents CHOICE. What one mother chooses to do for her family is her right. To get all upset because one mother chooses one way over a different way-read your way-is idiotic. People need to respect ones choices & not be so critical of one another.

Anonymous said...

Pat, read the CDC website and the VAERS website. Check the FDA. Those are government entities designed to educate. That is an eye opener right there. No need to look for non-scientific information. And you can find quality scientific information that shows there might be some concern over vaccines.

Here's the deal, why can't we treat each other with a little mutual respect. I respect your right and your ability to make quality decisions for your child, how about a little of that same respect thrown back our way? It shouldn't bug anyone that I do or don't vaccinate my children.
Try a child that has very little ability to detox his own body. Give him doses of meds with all kinds of nasty items in it that aren't needed and see what you get. I have REAL science to show what you get. If you were here next to me, I would be glad to show you his REAL lab work that shows REAL arsenic, thermisol, and so many other toxins that his body can't get rid of floating around. It would curl your hair.

The thing is, I was not always like this. I didn't believe any of this existed, until I personally watched a vaccine injure my child. That's when I started to ask our mainstream, traditional doctors what was happening to him and to give me an explanation. Don't assume we look at junk science just because we disagree with you. That's insulting to the highly intelligent and strong researching parents out there that just made a different decision than you, the same ones that respect your decision to fully vaccinate your child. I would never say something like, "Health officials are doing a poor job of educating people about the risks and dangers (there are risks, even the public health officials freely admit that) of vaccinations, judging by how many seemingly intelligent people are falling for the big pharma driven, fear-mongering vaccinate or die message out there." I would never say that to you. I would, instead, say,"great for you for reading all the data, stats, and making the best decision for your child. I fully support you in that."

CappuccinosMom said...

um....leaving aside vaccines....

I'm curious about the doctor's concern about speech impediment. All three of my boys suddenly and temporarily developed a "deep South" accent in their second year. "Down the stairs" became "Day-own the stay-ars". Since we're from VA, and have a friend from GA with the most wonderful southern accent, we just laughed and enjoyed it while it lasted, never more than a few months.

Crabcakes said...

Two of my children got "non-scientific" fevers of 106 after the DTaP. My eldest only got five days of extreme lethargy.

I care not, if my delaying and spacing vaxes distresses anyone else. If you'd like, I'm happy to have you come to my home and help me through the difficult days of 106 fevers following the vax. Maybe that would distress you less?

Nurse Shannon said...

I don't vaccinate because I have a long a horrid family history of vaccination reactions.
My brother is literally a 29 year old infant because of the vaccinations (and the government agrees as he was awarded a settlement under the vaccination compensation act). He cannot walk, talk, sit up, roll over...its horrible!
2 years after his reaction, I reacted to the booster for school...again, fairly bad.

IMHO, my children are at a higher risk of reacting to vaccinations than other kids. I have to worry about MY kids and I refuse to remotely even endanger their lives, so that some other parent can feel safe.

For those that do vaccinate, are you aware that you have to continue to receive booster vaccinations or you could quite easily catch whooping cough (which manifests as an upper resp. infection in adults) and pass it along to your own kids and any unvaccinated infant you make come in contact with?
This happen at my son's school in 2006, when 4 vaccinated kids came down with whooping cough...but my unvaccinated son didn't.

Mary Jane said...

I am also a homebirthing, very delayed and selective vaccinating parent. We don't forgo all vaccinations- I certainly see the value in them and the enourmous contribution they've made to public health, but like Crabcakes I'm just more concerned about vaccine overload. Autism really isn't a concern as for us personally with regard to vaccinations. We waited until our children were in between 18 months and 2 years to begin immunizations and at that point only do one vaccine at a time. Certain vaccines, like chicken pox and hepatitis, will wait until the children are closer to puberty.

That being said, I really have always had a hard time understanding why parents don't take their children to see a doctor on a regular basis for routine check-ups. If your child were to ever get sick wouldn't you rather see a doctor with whom you were already familiar? (And yes, I see you now aknowledging that fact.) Furthermore, vaccinations are not the sole reason to ever see a doctor for a routine visit. When they were infants our pediatrician agreed that there was no point in seeing them every 2 months if we weren't going to vaccinate, but we did see her every 6 months or so as infants and once yearly once they were toddlers.

If for absolutely no other reason, I think that regular visits are a very good idea for a homebirthing, non-vaxing family simply as a cover-your-butt policy so that you have a little more protection against claims of medical neglect. It's something to think about...

Candice said...

I'm glad to know that he is doing better. One of my relatives in a speech pathologist and works exclusively with children. I would honestly recommend bringing your son to a speech pathologist. They work wonders.

I wish you the best.

Anonymous said...

I didn't read all the comments, but my sister is a speech therapist & she's said that accents are not something that needs speech therapy. If you want him to talk differently thats ok, but its not medically needed.
I did pause a lot as a child when talking, & did receive speech therapy for that, but at least for me it was definitely not my accent or anything, I had to learn how to speak & breath at the same time.

Janetta said...

My daughter pauses mid-word when she is low on her Omega 3 Fatty Acids. I can even see her struggling to put thoughts together. I buy children's fish oil tabletss from teh health food store for her. Hope that helps!

Anonymous said...

Just found this post and its nice to see another non-vaxing mama :) We actually do a delay/select schedule with our son so he is getting a few vaccinations but about 1/4 of the recommended schedule. It took three tries before we found a pediatrician who respects our parental rights and views and he's been wonderful!
sara http://myfrugalfunlife.blogspot.com/

Kendra said...

Okay, let's talk speech problems.

The trouble you describe is not because of children suddenly developing an out-of-state accent. It is a normally developing phonological process many many children go through when developing speech and language called gliding of liquids. It's the way some children simplify the adult rules of pronunciation while they are developing speech. Some children will pronounce their "l" and "r" sounds as "w" or "y" (red=wed, light=wight/yight). Normal, common, developmentally appropriate. If the child still has trouble with those sounds by age 5 or 6 then speech therapy could be warranted. But until then, it is considered developmentally appropriate for children to have trouble with those sounds. And the second scenario you described sounds developmentally appropriate, too. It sounds a little like epenthasis, which is when a vowel is misplaced or inserted in to a word. Some children will add a little pause. Yet another phonological process which typically disappears by age 6.

Do keep an eye on your child as he grows and develops. Do not be afraid to ask your D.O. if you have concerns. It's better to have him evaluated by a professional and find out he is developmentally appropriate then to wait and have the problem continue for years.

And by the way, I am a pediatric speech-language pathologist with 15 year experience in these areas, just in case you wonder where I'm getting my info from.

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