totally stressed...sorry! | Autism PDD
Hi Ali. No, this doesn't sound like your usual positive self 
, but glad to see your human! I've only been at this for 3 months, and it feels like I"ve been riding a continuous up and down roller coaster for years!!! Some days I am so determined, and confident, and then all of a sudden I have a few days where I worry so much I can't function. I have no doubt you're doing the best for your son and will continue to do so. I've thought about the diet too, but I know I can't give that 100 0/0 effort right now, but I will be open to the idea in the future. Not that I believe there is a recovery from autism, but if there's something that could help Jakob end up on the higher-functioning end of the scale, then I will be willing to give it a try. (Cautiously, of course)
You know there's so much medicine and *()&^$# available for us and our kids that it's hard for an MD to make sense of it. So how are se lay or profressional to decide what is best foe our children? It is hard there's so much research all tailored toward the researchers that it is hard for hardened eyes to choose.
In the end we decide based on who we trust. I hope you are all as lucky as me as to have a neurologist and pediatrician that you do trust
getting along in MA
Mikki
Hi,
I just wanted to pop in because I'm totally stressed and I feel like here I will be understood!
Nothing major is causing it, Nicholas is doing well, progressing, but lately I have been crying at the drop of a hat and fretting over the future, wondering if I'm doing enough...etc...
I have never tried the GF/CF diet, never looked into DAN and personally I don't think it will make a difference with Nicholas, BUT I also feel like if I don't at least try then I'm not doing enough to help him? Its tearing me up inside...
Is there anyone going through this, or has gone through this...I need some words of wisdom or some regrouping strategies...I'm feeling totally overwhelmmed...
Normally I have things under control, am in a positive frame of mind with the occasional break down...here is a little info that many of my know already...my Nicholas will be 4 1/2 this week, and is dx w/ pdd/nos...he is starting to be verbal, has reg. daily bm's and never had stomach issues, such as reflux or gas pains...He was on antibiotics from age 9 mths to 2 1/2 (Bactrim) for urinary reflux...other than that had about 5 ear infections which he got Agmentic for since the Amoxicillian didn't work...I'm adding all this because of what I read about Mercury and antibotics...
I know I'm the person best to make decissions for my precious son, but I feel I need to ask for help, I'm so afraid of making the wrong decisions...I have had held out on getting his 4 year old shots so far, but will probably get them and just spread them out over a few visits...
Dh, is great, but he can honestly make me more nervous, he's a type A personality and I'm much more laid back, so before I go to him with these concerns I needed to talk about it in a more at ease setting LOL...sorry I know I'm rambling, but I'm just feeling so darn stressed out and I feel like I really have no other outlet besides my wonderful dh, and my other friend who's son is the same age, dx and name as my guy...she's basically going through the same thing...UGH...can you tell I'm totally confused and anxious!
thanks for listening, it really helps that I'm not alone in this...and thanks so much for any advice you may offer...It will be much appreciated!
big hugs even though I may cry on you LOL
Ali
mom to a precious, funny, bright and beautiful little boy w/ pdd/nos
Hi Ali!
I can totally relate. When our young kids get diagnosed with ASD, We feel like there's a time bomb ticking. We hear these great anectoctal stories of recovery and we desperately want that so much.
The medical community keeps saying early intervention is the key- yet they provide very little guidance on which intervention to try. There are no studies to support most tof the intervention in Autism- ST, OT, SI, Floortime etc. ABA has some studies that support it's use but these study result are hard to duplicate.
I really struggled with the GFCF/DAN prtocol. I didn't think it would work but it kept nagging at me for months- the "what if that's the intervention that will really help?" Finally I decided- just to try it and see what happend. I read Karen Serosi's
"Unraveling the mystery of Autism" and several others. At the beginning of the book, I though "wow this is very possible"- but as I read more I had my doubts.
Autism by it's very nature is a fluctuating illness. It seems to me, the book implied that while your child was on a dietary intervention and makes progress the credit is given to the diet. However if they then plateau or start having problems-it couldn't possible be that the diet is not working but rather you must restric the child's diet further or treat yeast etc.
My husband and I are physicians, so that may explain our skeptcism. We tried the diet anyway. We are 2 1/2 months casein free, 2 months gluten free. We didn't notice any change. We then tried soy free for 6 weeks and still no difference. We recently re-introduced soy. We tried cod liver oil, kirkman vitamin supplements, calium and magnesium supplements. We switched to safflower oil. Use almond instead of peanut butter. Stopped buying meat with nitrites. For DS, these biomedical intervention have not helped. We will continue these intervention for a 3 more months but then we'll stop.
Do I think the diet works for some people? It's possible. After a year of reading and researching-I've come to the conclusion that maybe Autism is just the symptom- like a cough. Just like a cough can be caused by pneumonia, asthma, cystic fibrosis, or heart disease- Autism can be casued by many things. In the future hopefully the genetic mutations linked to Autism will be better defined and
autism will be divided in to subgroups.
Sorry for my rambling- I just wanted to explain how we made these hard decisions. Good luck
Thank you so much srs-mom!
That's exactly how I feel today LOL...And I appreciate you being so candid...I know being physicians you and your dh must have really looked into it...and still even with your doubts you tried it...I think that's where I'm going too...its that "just incase" thing...his ped and nuero ped, his teacher and his o/t & s/t have all told me they have never seen any changes in children on the diet except for extra crankiness at meal time... and yet I have heard very positive and motivating stories telling me just the opposite, so basically I think I'll have to see for myself...and though I really don't think I'll see any change, at least I can rule it out...I suppose! LOL...
Its so funny, as I'm replyin here I get a call from dh...he says there is door in the building he's contracting and it says Autism Research, he told me he's going in to get some more info...LOL...just what I need LOL...I have to laugh otherwise I'll cry...but maybe I'll find something helpful too...
okay, well thank you again! and best of luck w/ your child and the diet too...btw are you doing the chelation therapy, if you don't mind me asking? I hear it can be tasking on thier livers...but have not really talked to his ped about it yet.
take care!
Ali
Ali,
I really understand where you are coming from. I have agonized over the diet thing for a long time... first of all Zach's diet is SOOOO limited as it is, second of all I just don't know. We have done lil' test runs over the last month where Zach was off of milk for for a week and we documented his behavior and then gave it back to him and then off for a week and gave it back .... We wanted to see if it would affect him. I personally feel like if you take something like Milk or wheat out of thier diet you should be able to see results with in a week... i'm not a Dr. though so I could be completly wrong *laughs*
Good luck with whatever you choose to do...I hope it produces results for you. I do know a friend of mine with the help of a metabolic specialist has started all this diet/nutritional therapy with her 8 year old pdd-nos son and is seeing great results, she's been doing it for a month now. I think that sometimes these things can help and sometimes not... it just depends on the child. I will say this though... please don't do any diet changes without speaking to the Dr. and maybe getting a referral to a Metabolic specialist if your insurance will cover it.
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There is no recovery from this. Some kids can learn to live independently but their characteristics are always there. Some don't. Autism or autism spectrum disorder is always there. And who knows what the future holds for anybody? Parents of normal kids don't know that either. Tammy |
Now Jeffrey used to like Stephen King, lol. And I have so many of his books that I haven't read.
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I've only treated kids with lead poisening- and I'm no toxicologist- but here are my issues with chelation:
1. My son was born in 2003-it's very possible the vaccines he received didn't have thimerisol.
2. If the vaccines did have thimerisol- and IF that caused some neurological damage,then I'm not sure removing the mercury 2 years later makes sense to me.
3. Chelation for lead is generally safe. But for lead, we generally don't chelate for years like some people I know do for mercury.
So for right now we are not chelating. I never say NEVER though. LOL.
The bottom line is that, although I'm trying to be supermommy(aren't we all!) - I have limited resources- financially, physically and emotionally. I'm going to spend my resources on things that have already shown to help- ST, OT, ABA and floortime.
hey Ali.
i think we all go thru the "what more can I do" period I think we always will. they're our children for Pete's sake but i'll tell you something funny. I called a DAN dr about 2 months ago, the receptionists started right in with how fast we can get started with chelation therapy (which made me nervous because i had severe reserveations about it ( liver damage ect) and was given these crazy rules before we went into meet the ND ( we couldn't be exposed to car exhaust fumes- how do we get out of the car and into the parking lot- there's bound to be a car running right?) well she kept saying how great it was that we were coming ( at this point, i'm still super hesitant but make an appt anyways) well the week of the appt came and i just couldn't do it, i had a bad feeling so i cancelled well on channel 5 a few weeks ago, they did a news story how in ma, natureopathic (i think that's the name)doctors aren't licensed to practice medicine in the state ( shocker ) and last week in RI, they arrested a guy claimimg to be a ND who almost killed someone by giving an alcohol based solution to someone with chronic liver failure, so that being said, i feel comfortable with my decision and agree with srs-mom 100%. i will choose to stick to the tried and true therapies that have been shown to make adifference. we do ST, OT, ABA and of course "Mommy Therapy" ( the best one of all!!!!)
Thank you! Thank you! Thank you!
((((group hug)))))))))
I've been home sick for a few days and was just going to pop in and see what's up when I remembered I was having such a stressful day on Monday and I left this post...
Thank you all for your input and support, really appreciate it...I know our kids will never recover and the future is uncertain for all kids not just ours...and although I wish we didn't have to go through it, I'm kinda glad we all go through our moments of doubt and fear...it just never ends I suppose, but neither do the moments you feel blessed, which are happening all the time...so that's a good balance right!
I am feel alittle better about my reservations thanks to you all, and although I'm not sure if I will change his diet now, he's picky and its funny after yogurt and milk he seems more energized and focused LOL, but then again maybe its just me...anyway I'm glad I talked to you all first...feeling much better about things today. Especially since nicholas looked at me right in the eyes as we were hugging this morning and said..."I duv you soooo much!" wooo doesn't get much better than that LOL...
ASD is certainly a learning experience for me in so many areas...not just about the condition...but about myself too and my strengths and weaknesses...I'm learning its okay that I'm not supermommy everyday, my guy is happy and healthy and that's more important, and its okay I don't know everything I need to know about Autism, as no one really does...it has taught me to yearn for so much as well as appreciate so much, especially the little things.
lots of love to all you superparents!
thanks again!
Ali
This isn't going to help at all ... but just so you know, you're not alone Ali! As you know, I'm fairly new to this, so maybe it's normal for me to still be dealing with feelings of guilt for not trying everything under the sun yet (although Luke is off dairy and he seems physically better off, if not intellectually) ... he only gets speech and OT so far. Karen Seroussi's book was one of the first I found at the library and it seemed to make a lot of sense at the time, but then I kind of thought what srs-mom said: that she was given the diet credit for everything and everytime there was a plateau Karen S would just remove even more foods from that poor kid's diet! I honestly can't imagine what he's eating anymore! Rice cakes and potato bread?! I don't mean to sound rude to anyone who's tried the diet and have found it works well ... I just thought Karen S's book was kind of extreme. If it's working ... wonderful. :) But I, too, feel like there's a clock ticking up til Luke's 5th birthday and if we don't fit everything in by that time (RDI, ABA, floortime, SI, friggin' Kindermusik LOL) then I've completely failed as a parent. Every now and then I still feel like God is punishing me be/c I've been divorced (from an abusive man -- Luke is NOT his, thank the Lord) and since I took oaths and all under God ... yadda yadda yadda ... I'm a kook sometimes
Hormones? stress? Fatigue? Read too much Steven King as a youth? Who knows?! 
We were also wondering about chelation therapy, but hesitate be/c we don't want to put our son through anything that is overboard without there being a solid reason behind it (more than to appease my guilt and worry). I have wished so often that someone could just step in and tell us exactly what to do. It would be a relief. Like, if one is dx'd with cancer, the doctor basically recommends exactly what should be done. Why can't it be that way with this disorder?
Thank goodness for this message board.
Dont know where I'd be without it. Sorry for the long-winded post! Kellie
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