Sunday, June 12, 2011

Biomedical / DAN Dr Treatments We Tried On Kyle With No Success... in no particular order...



(originally written & published on June 12, 2011)


Many have asked, so here is a list of things we've tried with Kyle with little or no success over the past 4 years... This is all I remember off the top of my head. If I think of any others, I will add them and repost this note... All of these were tried based on the recommendation of a DAN Doctor

---GFCF DIET for almost a year and a half.

--- HBOT, (Hyperbaric Oxygen Chamber)... rented one, had it in my house for a month. Kyle and I would go in there for a few hours each night. He would fall asleep in there. I felt no different. Kyle didn't appear to get anything out of it. Cost me over $2k

--Treated him for yeast with the diet of antifungals, Nystatin, probiotics and alot of other supplements in this category.

--Vitamin B12 injections

-- Treated him as if he had Lyme diease with a round of Valtrex & other supplements...

-- Secretin injections.

-- Prescription Meds we've tried based on the recommendation of a DAN Doctor include...
Ability.
Aricept
Ritalin
Intuniv/ Tenex


--Things that are in my cabinet that I can't remember what they are for or what they were supposed to help with...
Folic acid
Oil of oregano
Charcoal capsules


That's all I can think of right now. The only thing that ever truly worked was good ol Melatonin for sleep and good ol' Senokot for helping loosen stools and making him more regular. Everything else did little... or nothing... or helped a bit but came with a new side effect that we thought wasn't worth it... or made things worse.

Right now our biggest challenge is tackling Kyle's ADD & ADHD. He is so hyper, stimmy, cant sit still that we feel it gets in the way of him making ANY progress / learning. If we can get some of that out of the way... without making him a zombie / stripping his personality maybe we can see some real progress for the first time in several years...

That being said, this may be controversial, but right now I'd try another prescription med (that didn't have decreased appetite as a possible side effect) over any new biomedical treatment or supplement. At least I know what to expect and my insurance covers it (minus a copay) vs spending $30+ on bottles of
NOSITOL ~4000 mg/day
5-HTP 150 mg/day
TAURINE 2000 mg/day
GABA 2000 mg/day
ZEN (L-Theanine) 400 mg/day
which were the next 5 things my DAN doctor was suggesting we try. One at a time for 2 weeks....

Anyway, that's my note for today. I will add more things when I remember them.

Thanks,

Autism Daddy

ADDED 12/12/11
Listen guys.  We went to 2 of the most well respected Dan doctors in the US. They both do speaking engagements around the country and at Dan conferences.   So we went by what these 2 experts suggested.

Also as I said in my note about what weve tried. Those were listed "in no particular order" and were stretched out over a 5 year period.

We tried each thing by itself in the order that they suggested for the length they suggested.

So I'm  not going to start second guessing the doctors. That'll drive me even crazier!!!  ----------------------------------



If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



:-)

062514

40 comments:

  1. OMG I this sounds crazy to me! I am very much into biomedical and I even think the Dr's coarse of action was off. Personall I try to stay away from anything to do with western medicine when it comes to Biomedical. I know the supplements you were given, Gaba, 5-htp, and Zen are very high doses to start in conjunction of each other. Most of what you need to know about Biomedical you cab find in a book or with Google. I personally would steer away from prescriptions with biomedical, there are to many side effects. If you ever choose to do anything biomedical or diet related I would be more then welcome to try and explain more what I found worked for us and others I know. Best of luck ~Nicole aka The Autism Puzzle (alternative medicine)

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  2. I noticed you did a round of Valtrex for Lyme Disease. Was Kyle actually diagnosed with Lyme disease? Lyme disease treatments especially in chronic form take a long time to treat, at least a year or so. Our son was dx'd with Lyme disease and so was I and his father. We did 13 months of abx (Doxycycline for adults and Keflex for our son). He is a much improved child and we are recovering every day. He also had Plagiocephaly as a baby which cut off proper blood flow to parts of his brain in which Cranial Manipulation treatment has been the most beneficial for him. He's at the point where his school has now dropped his autism diagnosis. My advice would be do proper testing for Lyme Disease with a Lyme Literate doctor. Plenty in the northeast. Many use Igenex labs which has the most accurate and reliable results of any lab. I wouldn't play guessing games with Lymes..its best to test accurately and know for sure if this is indeed the case to properly treat it. BTW, we did biomed too with very little benefits (Vitamin C and Nystatin were the real winners for us). Good luck with everything!

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  3. Have you ever researched this coarse of action treatment from this DAN? I can see why you didn't see improvement. Things that are listed her counteract each other. I am sure much of this made his gut issues worse. I have no medical degree and see this DAN is way off (just my opinion). Maybe you should Google these treatments.. you will find not only the side effects but why you will find the activated charcoal was stripping the body of EVERYTHING you put in it!
    https://www.facebook.com/pages/The-Autism-Puzzle-alternative-medicine/181753411835420
    ~Nicole

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  4. After reading this I can see why you don't have faith in the DAN's Dr's anymore. The ones you went to just messed your son up even more. To give your son all them meds. just more less doped him up then the antibiotic which got rid of all the bad bacteria also strip all the good bacteria away to even with the probiotic was not going to do any good for him at all. So the way a waste of money right there. With the folic acid is very good for the body.Which we all need. That is your vitamin B. You will find that in alot of the foods you eat. That is also in the good fatty acids. Oregano oil is antifungal that help fights candida. Charcoal capsules helps with the upset stomach. When you go to detox the body it will go through with drawls that will help in the beginning stages not to be use all the time only in the beginning of all this. The more I have read off your blog I see how your son got worse then even to think of getting better. It was not the diet it was every thing that you were told to give him was not good at all. Almost all of it worked against each other then to think of doing any good. I can't believe that Doctor gave you guys all that stuff. I am still saying WOW!! There is so much more into to the Bio Medical field then that. I am so happy that I have invested my time into doing my own homework off all this. To trust a DAN Dr. That would prescribe them meds just blows my mind.

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  5. Listen guys. We went to 2 of the most well respected Dan doctors in the US. They both do speaking engagements around the country and at Dan conferences.   So we went by what these 2 experts suggested. 

    Also as I said in my note about what weve tried. Those were listed "in no particular order" and were stretched out over a 5 year period. 

    We tried each thing by itself in the order that they suggested for the length they suggested. 

    So I'm  not going to start second guessing the doctors. That'll drive me even crazier!!!

    ReplyDelete
  6. Hi there....wow...your son sounds so much like mine....super stimmy, hyper, always on the go, poor diet.....we were against medication....I was terrified to try any antipsychotic.....as a mental health social worker I had witnessed the side effects first hand......but, as my son reached 10 years old, and his behaviors were becoming more and more maladaptive, to the point of losing his school placement, and us being isolated at home, we decided we HAD to try it....we started him on risperdal....and I tell you, I saw a change after the first day....his behaviors decreased dramatically, and he slowed down.....he still is pretty much non verbal, and he does stim, but there was a change for the better....it's almost as if HE feels better without being fully charged ALL the time....he did gain weight, but he was super skinny, soi didn't mind......of course, everyone reacts differently, but just wanted ton give you a good story

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  7. Hi. Just a comment and sharing. I am the Mom of three sons all labelled classically autistic.They are young adults now. We have done many things with them mainly complementary and all non-invasive and drug free. My identical twins are now 23. My eldest twin Sean is artistic,studied weavery, a very clever nguy but still struggles with language and is considered non-verbal. His twin Eoin has a degree in journalism, runs a website www.multimediamouth.com
    and is looking for a job or freelance work. My youngest Micheal has a degree in War Studies and has just started a Masters in IT. Never plan for the future let them show you where they are going! I was told they would still be in diapers at 15 and would need to be sent to a residential home! They told me otherwise when I learned how to listen. One approach which has made a difference to all our family( older sisters labelled dyslexic, dyspraxic and semantic pragmatic disorder!) is HANDLE(Holisitc Approach to NeuroDevelopment and Learning Efficiency). Please look at the website www.handle.org. It confirm a lot I knew but taught me so much more. In fact I am now a HANDLE Practitioner and Instructor. Best Wishes to you all.ps please feel free to contact me with any questions. rosemarie.mason@ntlwworld.com

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  8. My son is an older version of Kyle. He is now 17 and little to no progress in all areas. Age 15 brought another challenge; Seizure Disorder. Getting meds to keep grand mal seizures under control has been difficult, but, we have him on 2 now that are working. At age 7 we started him on Risperidal as he was self-injurious and we knew if we didn't do something soon he would be in the hospital. He recently has begun to put on some weight, but that can be age related as well as a poor diet....not just the meds. The Risperidal is also for aggressive behaviors. We have tried to take him off the med, but, behaviors due come back quickly. He has Kyles stims as well as one that drives me crazy: feces smearing on himself and things in the room. This comes and goes...thankfully. I love your posts and your honesty and how much it helps those of us with the severe kids and their problems.

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    Replies
    1. HI. My son is super stimmy, also, and it is tied into his poop stuff. I don't have any real answers for that, so far, except lots of Chamomile. That calms his guy. I won't bore you with the ten page list of stuff we have tried, but we are positive his stimmy stuff has to do with SIBO/IBS, and his SIBs are tied into reflux, constipation and the lack of sleep that results from these things

      Delete
    2. HI. My son is super stimmy, also, and it is tied into his poop stuff. I don't have any real answers for that, so far, except lots of Chamomile. That calms his gut. I won't bore you with the ten page list of stuff we have tried, but we are positive his stimmy stuff has to do with SIBO/IBS, and his SIBs are tied into reflux, constipation and the lack of sleep that results from these things

      Delete
  9. If you are trying anything else in the future, check out Judy Chinitz, New Star Nutrition www.newstarnutrition.com Her own son is severely autistic and mid teens. She is amazing. If nothing else read her book "We Band of Mothers: Autism, My Son and the Specific Carbohydrate Diet"

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  10. Want to know if you all have tested for heavy metals? We are doing treatment for removal now. My child had extreme amounts of aluminum in his body. Antimony and Arsenic are now showing up.

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  11. What about the Son-Rise Program from The Autism Treatment Center of America??

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    Replies
    1. I suggest Son Rise too. It won't harm your child. It worth to try and worth your money.

      Delete
    2. no. Try applied behaviour analysis. It is the only thing with any empirical evidence.
      I can't even work out what son rise is..

      Delete
    3. Son Rise is backed by peer-reviewed, scientific research. There are lots of Youtube videos about it if you want to find out more, and a new book outlining the program by Raun Kaufman just came out. We LOVE Son-Rise. I highly recommend it to any parent of an autistic person.

      http://www.autismtreatmentcenter.org/

      Delete
  12. Hi,
    I know lots of people have suggested lots of things and we have done so mnay treatments that sometimes my head spins but I was wondering if you have ever tried neurofeedback? No meds, just reads brain activity and shows it on a computer as a video game. When his brain activity is in the right frequencies the game goes faster, when brain frequencies are off the game slows or stops. There is some great info on eeginfo.com We love it. There are some great research articles on neurofeedback and ADHD, ADD, and some new ones addressing autism on pubmed.com. It really helps my son. He sleeps better and is calmer after we use the system. Good luck. Kyle is lucky to have a dedicated dad and mom.

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  13. I find when my kid is stimming a lot its on a day where hes not getting much exercise. i try to get him out exercising and lots of fresh air. I mean exercising...he needs to get a bit tired from playing outside. I find doing that before a therapy helps immensely, and helps him focus better on the task at hand.

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  14. I would avoid the Risperdal. It did seem to help J for a while, but after he had been on it for a couple of years, he developed Type 1 diabetes. Risperdal can cause high glucose levels in the blood, which in J's case MAY have "burned out" his pancreas. No way to know for sure, but if I had to do it over again, we would have not used Risperdal.

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  15. I agree on advoiding the Risperdal. Also causes heart issues and severe weight gain. J gained 1
    75 pounds that we can not get off him and he also ended up with his heart hurting as he said. Intuniv has been ok for him now. His doctor gave him too much causing severe anger. Scaring us..... Back down to 2 mgs and he is calmer. On the higher dose he could read on his own and was actually able to slow his brain down enough to learn. He was reading books and actually testing on them and passing. On the 2 mgs he can read 1 word at a time. Do not see the same boy who wanted to learn with the 2mgs. But you know what I do not care. I adopted him and love him with all my heart. He just turned 13 and have had him of a bit over 10 years now. I have never tried Bio Medicine. He is now on Limictal xr for his seizures and is not having bad side effects on it. Has his balance and is not zombified either. I do hope that you do find something that can slow down his brain so he can get some clearity on what he is thinking. JD was non-verbal. No noise at all. Severely abused when we got him. I remember him finally wanting to sit in my lap after about 3 months. Melted my heart for good that day. I could go on and on but need to go to bed.

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  16. after 11 years, we started with a new insurance company, kaiser, and they were no help at all for autism. refused speech, ot, social skills, anger management, etc, they also had a 'standard regime' of drugs for autism, that dind't help us. Son was getting worse, we pretty much withdrew from our world (stopped going to special needs ot karate, couldn't afford on our own speech and social skills so stopped that too, moved, stopped seeing old friends) and started bio med. I'm happy to say for us it has worked. we've been off dairy for 2 months and the aggression has been lowered. we're in the process of dropping gluten and suddenly he's eating his fruits and vegetable and meats (that he's never eaten before due to flavor, smell, tactile, the way they felt in mouth, etc). The next on our list is that yeast thing you talked about. i recognized the stuff in your cabinet as stuff i need to buy - the charcoal in case he gets an upset stomach, the oregano stuff to kill yeast. i have to say that i am so surprised this route has worked for us. I was so pissed off at kaiser for not helping us, now i'm starting to view it differently, thier lack of care caused us to find another answer, and it seems to be the right one for us. i send you good thoughts and wishes that you will find the direction you need to go in for The King. It's certainly a long road. Maybe we can trade depacote for oregano and charcoal?
    Kerry davidkerry@earthlink.net

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  17. I can relate to trying several different things! My son is 8 years old severe ADHD, aspergers, SPD and anxiety. We have tried SEVERAL different ADHD meds and have had to stop all of them due to side effects, being a zombie or just not working. We have been off of red dyes for several months now and I can tell a difference when he has some now. He takes a multi vitamin and an omega 3 supplement every day. He also takes 7.5 mg of melatonin before bed. We are still struggling every day with his ADHD.

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  18. Hi There...Just stumbled accross your blog...I am a Mom of two who were dx with Autism (4 altogether). 1 of my sons made no progress with Bio med and ABA so I switched to RDI. This happened because my younger son made huge gaims with RDI and Bio med..but I only did basic, Enzymes, Fish oil, amino acids, Vitamins, Pro Biotics. RDI made the difference because like you, my kids were stuck in the first stage of development and I had to get them out of that for them to start progressing! Here is 1 of my boys stories!http://www.rdiconnect.com/blogs/rdi-culture/archive/2012/10/09/jesse-s-story.aspx

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  19. No judgement here! Every family is different and so is every child! We also tried the GFCF for over a year with no improvements. Behavior modification has been the way to go for us. Once he knows we're not putting up with his fit, it goes away. It wasnt caused from cheese , it was caused from him knowing he can get away with it! Our kids are so smart. We had to pull out of school and do homeschool because the teachers would feed into the behaviors instead of addressing them appropriately. If you call a child's parent to come get them because they are having a melt down, doesnt that just show them that they will get to go home and stop having to do what they dont feel like doing? So we homeschool

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  20. I got into Biomed for my autistic 13 year old boy and I have to say it is like chasing rabbits down a thousand rabbit holes. Nothing but confusion with little result. I stopped cherry picking nutrients and medicines and decided to keep it simple. I simply throw the kitchen sink at it and give every single essential nutrient the human body needs every day with clinically verified liquid nutrition and absorb ability. I eliminated the 10 bad foods that damage absorb ability. Were still early in the program but looking bright already. Does your program have 90 essential nutrients the human body needs clinically verified and do the dosages correspond to the weight of the person? friend me stefanos1227 facebook. stefanos1227@gmail.com.

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  21. www.facebook.com/stefanos.davola

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  22. Hi, Thanks for sharing your story. My son is 12 PDD-NOS and high functioning. We do the biomed route. Found it interesting because I did not see digestive enzymes listed in your supplements (or fish oil). The oil of oregano is very good for yeast and is also a natural antibiotic. Make sure you're using one that is safe for internal consumption. I found that out the hard way. The charcoal is to give if your son eats something he's not supposed to and the toxins will bind to it and pass out of his system. I've heard a lot of good things about the GAPS diet. I haven't started it yet but I think I'll try to incorporate some of the things they recommend. Good luck!

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  23. I just came across your blog and I cant wait to read more!! I do Occupational Therapy with kids who have moderate to severe autism and was curious if you had tried any type of OT for Kyle?

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  24. Hei :)
    Im glad for reading this ...it good that someone have energy to write about this condition.
    My son who is 16 years also have autism , adhd , asbergers and 2 more undefined diagonses.
    I have 5 children 4 of them is diagnosed whith add / adhd and other child psykriatic diagnoses.
    it has been a struggle to manage life it self whith all this challenges...
    I can fully understand u .
    Im proud of u fore sharing this with the world.
    We live in norway . There is not much help to get here and my son was plased in an institusion at the age of 9 and is beeing medisined with this drug u named risperidal .and other meds.
    He gain a lot of ekstra pojnds and he is not healthy anymore.
    Im worried for him and am not able to do anything for him.
    The child sevices took avaw my rigths as a mother. Because of his behavior .....
    They have treated us all very badly and blaiming me as a mother for not doing a good job.
    He was diagnosed with autism 2years ago.
    All the years before this the blamed me for his behavior... :(
    No the have druged him so he dosent have energy to have agression outburst or any behaveior of any kind.
    He sits i a basement apartment being guarded at all thimes .
    He does not go to school and have not anything to do but eat sleep and sit on the computer.
    We are alowed to take him home fore 1weekend each month.
    Then he is struggeling to tell us with his words how his life is...
    Soon i hope something will happen to change this situation!!!
    I wish.......

    Keep telling your story soo that people can learn about how it is and understand ;)
    Keep going :) i wish you the best !!!

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  25. Have you tried not giving him pasteurized milk. We were told by our Ped. to try giving him Almond milk instead of milk. Our son was starting to talk with in 2 weeks. Amazing stuff, since that time we have actually been giving him Raw milk. Which seems to be keeping him going.

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  26. Thank you for sharing your story with us..I just found your blog today.Have you tried homeopathy - it worked greatly for my son on the spectrum - he is not severely autistic.But it should work for everybody, if the proper remedy is chosen, in the right potency and the right dose.All the best. Laura

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  27. neurofeedback machine
    - Zengar.com is an Industry Leader in Healthy Brain Workout, Fitness Program, Neurofeedback for ADHD, Brain Exercises, Neurocare, PTSD Disorder and Biofeedback Systems."/>

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  28. My son is in risperidone and it's been very helpful for us. Some weight gain, however he isn't a picky eater anymore... 90th percentile for height and weight. Dr. is happy that he's under 85th percent bmi. We have labs to test levels twice yearly. No problems and he's been on it 4 years. He started speaking more and making some eye contact. We had to do something because he was becoming aggressive. I just wanted to share something positive out there, as I hate reading anything saying don't try this or don't try that..He's still very stimmy and were going to find something to help with that. Stimulant drugs make him aggressive and caused him to self injure... Thanks for sharing your life. It's a nice change from the rainbows and butterflies I see mostly...

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  29. My simple suggestion would be to check into MMJ. We've had great success. And it's natural.

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  30. i work for a suppliment company as well have a son that has impulsive adhd..
    ive learned that although you may not take the symptoms completely away there are some thiimgs that may help.
    - fish oils help with brain function
    - probiotics are very important they help all the healthy cultures of bacteria in our guts. esp being on anti biotics can kill the good bacteria so its importants we have a good count of good bacteria.
    -behavoirs start in the gut our intestines are the largest working organ in our body keep your son away from bad carbs, red dye try and give lots of veggies even if you have to suppliment it and some have a reaction to cows milk (behavoir wise)

    im not a doctor my friend specializes in child behavoirs also has a child on the spectrum this is also experiemce from my own...


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    Replies
    1. behaviours do no start in the intestine. Applied behaviour analysis is the only way to go.

      Delete
  31. Totally understand how you feel, but I think there are better options. These have worked tremendously for our son if anyone is interested:
    500 MG Omega Nordic Naturals Minis (omega 3s)
    Kirkmans Pro-Bio Gold (probiotics)
    ENHANSA (Labrador grade curcumin. Supposed to help immune system)

    Actually the fish oil above and Probiotics are two most important. Hope this helps someone!

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  32. So this is my thought. I go with what works at the time. Over the 18 years I have been through much of what you have tried. It seems our kids either get used to the meds or they just stop working, but even if they work for a short period of time it is relief for him and for you. I would say over the years for private doctors, special schools, counselors and co-pays etc, my husband and I think we have spent well over 100k. I have learned there is no fix, but if he is happy so am I.

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  33. I am just wondering if some testings were done that lead the DAN doctor to suggest all these supplements and medications. I am working with a DAN doctor and he does not prescribe medicines at least is extremely necessary. This doctor also does a lot of testing before moving to the next step in the treatment.

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  34. I definitely agree with many of the others that responded. The DAN doctor that you used seemed way off.
    Proper testing a good biomedical doctor are key. An excellent treatment regimen should include http://www.acimconnect.com/Home/AboutUs/AcademyLeadership/LeeCowdenProfilePage.aspx

    http://www.nutramedix.ec/ns/lyme-protocol

    It not only addresses the Lyme, but underlying viruses, bacterias, parasites, etc.

    Hope things have improved for you. I have been in the same boat with both of my boys and they are now doing awesome!

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