Re: Re: All my child does in SCREAM!! Help Please

[Guest guest]

His behavior does improve after he eats. The betaine is prescibed by his DAN dr, Dr. Jermey Baptist. Thank you for letting me know about the supplement from Lee Silsby! It would cut down on how much I have to keep up with.

Thank you so much for all the info you ladies have provided for me!

To: mb12 valtrex Sent: Sun, June 27, 2010 10:14:53 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

I agree with ,forgot about the low blood sugar but behavior would improve once he ate.I still lean towards pain somewhere causing this- someone else mentioned betaine as a culprit.I have never used that product so I cannot speak to its effects but I have seen others post problems with it also.What is Betaine prescribed for? And just so you know at least 6 of your supplements are present in Dr.N's multi powder from Lee Silsby if that would help you. I switched to it a few months ago and it greatly reduced the amount of supplements I had to give each day,we use the Sonic Cholesterol too. Also,make sure your probiotics are dairy free and some parents say they have problems with strep lines so beware of that.

From: TRACEE ZEVAN <yahoo (DOT) com>To: "mb12 valtrex@ yahoogroups. com" <mb12 valtrex@ yahoogroups. com>Sent: Sun, June 27, 2010 9:33:45 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

is he verbal?? how is his growth? (height/weight) , have you had his glucose checked? he takes a lot of supps. but has a low carb/calorie diet, hypoglycemia can present like this... (tantrums, etc.,)

my son could not tolerate biotin, and folinic acid can cause problems, too (it's usually trial & error to find the right one.)

do you keep a daily journal of his intake/outake every day?? (very important when trying to figure out behaviors, etc., and their relationship to the food/supps your child is consuming..)

how are his bm's? is he eliminating 1, 2, 3 times daily??? (very important when detoxing..)

Sent from my iPhone

On Jun 27, 2010, at 10:07 PM, "elizabeth7899" <elizabeth7899@ yahoo.com> wrote:

Here is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 – 1 capsule daily (100mg)2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/223. B6-P5P-MAG – 1 capsule daily (50mg)4. Sonic Cholesterol – 1 capsule daily 5. Zinc – 30 drops daily6. Lithium – 10 drops a WEEK7. Betaine – ½ capsule dailyLunch 1. Biotin – 5 capsules daily (5000mcg)2. Calcium Citrate – 2 level scoops daily (500-1000mg)3. Magnesium Citrate – 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin – 4ml6. Vitamin C – 1 capsule daily (500mg)7. CLO – 1 teaspoon daily8. Betaine – ½ capsuleSnack1. Basic Nutrients Plus – 2 capsules daily 2. Vitamin E – ½ capsule daily (200 IU)3. L-Lysine – 1 capsule daily

(500mg)4. Selenium – 3 drops daily (100mcg)5. Vitamin C – 1 capsule (500mg)6. Chromium – 1 capsule daily (200mcg)7. Betaine – ½ capsuleDinner (5:00pm)1. L-Carnitine – 3 capsules (1000mg)2. Betaine – ½ Capsule Bedtime 1. Probiotics – 2 capsules he also gets B12 shots every 3 days and a allergey shot every week.> > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > Thank you,> > Springfield, MO>

[Guest guest]

How fast did you go up on that dosage of Biotin? how long have you been on it? Increasing the dosage of biotin to rapidly can cause headaches.LoriTo: mb12 valtrex Sent: Sun, June 27, 2010 9:07:43 PMSubject:

Re: All my child does in SCREAM!! Help Please

Here is the list of everything that he is on...

We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.

Supplement Dosage Schedule

Breakfast

1. CoQ10 – 1 capsule daily (100mg)

2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/22

3. B6-P5P-MAG – 1 capsule daily (50mg)

4. Sonic Cholesterol – 1 capsule daily

5. Zinc – 30 drops daily

6. Lithium – 10 drops a WEEK

7. Betaine – ½ capsule daily

Lunch

1. Biotin – 5 capsules daily (5000mcg)

2. Calcium Citrate – 2 level scoops daily (500-1000mg)

3. Magnesium Citrate – 2 level scoops daily (250-500mg)

4. Folinic Acid - __________ daily (800-1600mcg)

5. Nystatin – 4ml

6. Vitamin C – 1 capsule daily (500mg)

7. CLO – 1 teaspoon daily

8. Betaine – ½ capsule

Snack

1. Basic Nutrients Plus – 2 capsules daily

2. Vitamin E – ½ capsule daily (200 IU)

3. L-Lysine – 1 capsule daily (500mg)

4. Selenium – 3 drops daily (100mcg)

5. Vitamin C – 1 capsule (500mg)

6. Chromium – 1 capsule daily (200mcg)

7. Betaine – ½ capsule

Dinner (5:00pm)

1. L-Carnitine – 3 capsules (1000mg)

2. Betaine – ½ Capsule

Bedtime

1. Probiotics – 2 capsules

he also gets B12 shots every 3 days and a allergey shot every week.

>

> My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help.

>

> Thank you,

>

> Springfield, MO

>

[Guest guest]

I had to giggle a little about the first line there... I feel the same way... everything here is phenols or strep.I had a friend visit on Friday, his son has strep but was on antibiotics for a couple days. This is a friend from HS I have not seen in 12 years, so I wasn't going to turn them away.Anyway, I was trying not to panic abt it, since my kids' only have symptoms of possible PANDAS with no bloodwork confirming... well this morning my son has a fever and my daughter is "not feeling well." Meh. My mom whispers across the room "I hope it's not the (points to throat)" and I said "I thought it but don't want to say it." We go on vacation on Friday. :-\So keeping my fingers crossed. I told the kids "I FEEL GREAT and it's contagious!" lol ---

ToniTo: mb12 valtrex Sent: Mon, June 28, 2010 1:50:34 PMSubject: Re: All my child does in SCREAM!! Help Please

I don't want to become known as the person who blames everything on PANDAS, but in my house, 90% of all-things-crazy is due to PANDAS!!!

[Guest guest]

I use ibuprofen it helps a lot I think is inflamation of the brain as well...Sent from my BlackBerry® wireless deviceSender: mb12 valtrex Date: Mon, 28 Jun 2010 23:23:32 -0000To: <mb12 valtrex >ReplyTo: mb12 valtrex Subject: Re: All my child does in SCREAM!! Help Please Almost no therapy helped my son until we began treating with antibiotics. His brain was so inflammed he cried and screamed all the time.> > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > > Thank you,> > > > Springfield, MO> > > >>

[Guest guest]

how much zinc in mgs does that come out to? how much does he weigh. ZINC can upset the stomach/.

how much lithium is that (per drop ect)

are you usaing you give 5 pills of 5000 MCGS (which is 5 mgs) so 25 mgs per meal? or just 1 5mg tablet

what kind of probiotic are you giving....

your vit E would be soy and that would be HUGE problems at our house causing issue

Re: All my child does in SCREAM!! Help Please

Here is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 – 1 capsule daily (100mg)2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/223. B6-P5P-MAG – 1 capsule daily (50mg)4. Sonic Cholesterol – 1 capsule daily 5. Zinc – 30 drops daily6. Lithium – 10 drops a WEEK7. Betaine – ½ capsule dailyLunch 1. Biotin – 5 capsules daily (5000mcg)2. Calcium Citrate – 2 level scoops daily (500-1000mg)3. Magnesium Citrate – 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin – 4ml6. Vitamin C – 1 capsule daily (500mg)7. CLO – 1 teaspoon daily8. Betaine – ½ capsuleSnack1. Basic Nutrients Plus – 2 capsules daily 2. Vitamin E – ½ capsule daily (200 IU)3. L-Lysine – 1 capsule daily (500mg)4. Selenium – 3 drops daily (100mcg)5. Vitamin C – 1 capsule (500mg)6. Chromium – 1 capsule daily (200mcg)7. Betaine – ½ capsuleDinner (5:00pm)1. L-Carnitine – 3 capsules (1000mg)2. Betaine – ½ Capsule Bedtime 1. Probiotics – 2 capsules he also gets B12 shots every 3 days and a allergey shot every week.> > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > Thank you,> > Springfield, MO>

[Guest guest]

grace vit E still has soy in it, you just have to dig to find it out, sadly....

All my child does in SCREAM!! Help Please> > > > > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > Thank you,> > > > Springfield, MO>

[Guest guest]

Hi, also try adding lavendar oil to the

bathwater while using the Epsom salts and baking soda.. this really works for

us.. Try soaking for at least 20 minutes.. All of these together, really calm

down the body.. I hope this helps your child also.. take care..

Corinne

From:

mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of CGF

Sent: Monday, June 28, 2010 6:27

AM

To: mb12 valtrex

Subject: Re: All my

child does in SCREAM!! Help Please

Add a little baking soda to the bath - super calming.

Try it yourself.

>

....I'd cut out the b-12 shots for awhile and try some epsom salt baths and see

if that calms him down at all. Also if you think there may be die-off involved

some activated charcoal may help. JMHO, ...

[Guest guest]

I started out at the full dosage of 5000 MCG. I did not realize that it caused headaches.

My son has always been a screamer and cryer since before biomedical intervention was started in January of this year.

To: mb12 valtrex Sent: Sun, June 27, 2010 11:05:08 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

How fast did you go up on that dosage of Biotin? how long have you been on it? Increasing the dosage of biotin to rapidly can cause headaches.

Lori

From: elizabeth7899 <elizabeth7899@ yahoo.com>To: mb12 valtrex@ yahoogroups. comSent: Sun, June 27, 2010 9:07:43 PMSubject: Re: All my child does in SCREAM!! Help Please

Here is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 – 1 capsule daily (100mg)2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/223. B6-P5P-MAG – 1 capsule daily (50mg)4. Sonic Cholesterol – 1 capsule daily 5. Zinc – 30 drops daily6. Lithium – 10 drops a WEEK7. Betaine – ½ capsule dailyLunch 1. Biotin – 5 capsules daily (5000mcg)2. Calcium Citrate – 2 level scoops daily (500-1000mg)3. Magnesium Citrate – 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin – 4ml6. Vitamin C – 1 capsule daily (500mg)7. CLO – 1 teaspoon daily8. Betaine – ½ capsuleSnack1. Basic Nutrients Plus – 2 capsules daily 2. Vitamin E – ½ capsule daily (200 IU)3. L-Lysine – 1 capsule daily

(500mg)4. Selenium – 3 drops daily (100mcg)5. Vitamin C – 1 capsule (500mg)6. Chromium – 1 capsule daily (200mcg)7. Betaine – ½ capsuleDinner (5:00pm)1. L-Carnitine – 3 capsules (1000mg)2. Betaine – ½ Capsule Bedtime 1. Probiotics – 2 capsules he also gets B12 shots every 3 days and a allergey shot every week.> > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since

January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > Thank you,> > Springfield, MO>

[Guest guest]

Thank you so much for your feedback and I took note of the items that you listed! I have not started the selenium yet...hope we don't have a huge reaction to it!

Thanks,

To: mb12 valtrex Sent: Sun, June 27, 2010 11:27:54 PMSubject: Re: All my child does in SCREAM!! Help Please

Selenium lowers copper and so does zinc. I had a bad reaction to taking selenium. It's good at first, but after a while, problems set in, like even only after a few weeks. I personally am against it now. Two brazil nuts a day give one a good amount of selenium without the worry. I don't see chromium used much in the autism arena, so I wonder about that upsetting mineral balances as well. My best guess is that you are lacking in treatments for inflammation and mopping up toxins, yet he is on Nystatin which can cause awful die-off symptoms. Of course, inflammation is pervasive in autism. I would add in detoxers and anti-inflammatories. There are many natural things, like turmeric, ginger root, Modifilan, Acai, Goji, even Cod liver oil helpls a little.Love and prayers,Heidi NHere is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and

veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 1 capsule daily (100mg)2. Acetyl -L-Carnitine 2 capsules daily (1000mg)5/223. B6-P5P-MAG 1 capsule daily (50mg)4. Sonic Cholesterol 1 capsule daily5. Zinc 30 drops daily6. Lithium 10 drops a WEEK7. Betaine ½ capsule dailyLunch1. Biotin 5 capsules daily (5000mcg)2. Calcium Citrate 2 level scoops daily (500-1000mg)3. Magnesium Citrate 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin 4ml6. Vitamin C 1 capsule daily (500mg)7. CLO 1 teaspoon daily8. Betaine ½ capsuleSnack1. Basic Nutrients Plus 2 capsules daily2. Vitamin E ½ capsule daily (200 IU)3. L-Lysine 1 capsule daily (500mg)4. Selenium 3 drops daily (100mcg)5. Vitamin C 1 capsule (500mg)6. Chromium 1 capsule daily (200mcg)7. Betaine ½ capsuleDinner (5:00pm)1. L-Carnitine 3 capsules

(1000mg)2. Betaine ½ CapsuleBedtime1. Probiotics 2 capsuleshe also gets B12 shots every 3 days and a allergey shot every week.

[Guest guest]



what did you START with then that you first saw it?

Re: All my child does in SCREAM!! Help Please

Here is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 – 1 capsule daily (100mg)2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/223. B6-P5P-MAG – 1 capsule daily (50mg)4. Sonic Cholesterol – 1 capsule daily 5. Zinc – 30 drops daily6. Lithium – 10 drops a WEEK7. Betaine – ½ capsule dailyLunch 1. Biotin – 5 capsules daily (5000mcg)2. Calcium Citrate – 2 level scoops daily (500-1000mg)3. Magnesium Citrate – 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin – 4ml6. Vitamin C – 1 capsule daily (500mg)7. CLO – 1 teaspoon daily8. Betaine – ½ capsuleSnack1. Basic Nutrients Plus – 2 capsules daily 2. Vitamin E – ½ capsule daily (200 IU)3. L-Lysine – 1 capsule daily (500mg)4. Selenium – 3 drops daily (100mcg)5. Vitamin C – 1 capsule (500mg)6. Chromium – 1 capsule daily (200mcg)7. Betaine – ½ capsuleDinner (5:00pm)1. L-Carnitine – 3 capsules (1000mg)2. Betaine – ½ Capsule Bedtime 1. Probiotics – 2 capsules he also gets B12 shots every 3 days and a allergey shot every week.> > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > Thank you,> > Springfield, MO>

[Guest guest]

Thank you...got some today and it helped in the tub tonight!

To: mb12 valtrex Sent: Mon, June 28, 2010 6:26:55 AMSubject: Re: All my child does in SCREAM!! Help Please

Add a little baking soda to the bath - super calming. Try it yourself.>...I'd cut out the b-12 shots for awhile and try some epsom salt baths and see if that calms him down at all. Also if you think there may be die-off involved some activated charcoal may help. JMHO, ...

[Guest guest]

After reading all the emails... I really think that it is a communication issue. I feel really fired up and ready to have a meeting with all my therapist and tell them that we have to do SOMETHING! I found an IPAD app that we started working with today for communcication and I already saw less screaming!!

Sensory Diet- Not sure what that is..but I want it if my son needs it. I feel like the therapist have not been helping me enough. My son always cries when I am in the room during therapy so I ALWAYS have to leave!!

Thanks,

To: mb12 valtrex Sent: Mon, June 28, 2010 9:13:36 AMSubject: Re: All my child does in SCREAM!! Help Please

I absolutly agree with . Let's keep a little bit more distance to all diets and supplements for a moment and think about where he is with communication skills...he probably wants communicate but doesn't have tools. This is what I was going through for few years when my son was around 3-4...Your son is already taking more supplements than any average kid with diagnosis I know. I would look "out of the box", stop adding more pills. But I feel for you, I've been there.Good luck. >> Hi , my guess is that the screaming is multi-fold. He's 2 I think you said? So, that could account for a fair amount of tantruming. I'm not sure how verbal your child is? If he doesn't have words to express himself (or many words), he's using what he can to

get his point across, more speech therapy, PECS, sign, anything to increase his ability to request and decline in more appropriate ways could be beneficial. It may have become a familiar behavior for him, sort of a habit, it may even have a sensory purpose for him (may be how he upregulates himself, may be giving him auditory stimulation that he needs?) Wondering if Listening Therapy would be good, a sensory diet, a good OT could help with this. No hearing problem? There are so many avenues your DAN can go down, PANDAS, metals, inflammation, oxidative stress, mito, virus, etc. Maybe more testing? You said his screaming was intolerable on nystatin....could that have been perhaps because his yeast was bad and you were seeing really bad die off? If that were the case-maybe more binding stuff like activated charcoal and to grin and bear it to see if it abates after a good die off period? Could be hell to go through. My son had terrible inflammation in his

gut which we found on scopes with Buie. He needed meds to help bring the inflammation down and that has really helped with the pain and his behavior has improved immensely. One of the meds, a prescription digestive enzyme called Ultrase eliminated undigested food in my son's poop. Easily covered by insurance, cheap co-pay, great help. Headaches? Ear infections? My last thought - when my son was 2 he didn't have any words but he whined constantly and wanted to be carried 24/7. I worked with an amazing slp in our home and she was pretty tough about it. She taught us some pretty straight forward behavioral techniques to ignore any whining, literally turn my back and walk away, but any attempt at a verbalization or sign or appropriate gesture I would really positively reinforce with the desired thing. I had to model with words and signs, hand over hand at first for the signs. We (everyone who spends significant time with the child) had to be totally

consistent and within about 2 months the whining was gone and replaced with a rough sign for 'more' and another for 'all-done', we ramped up to his needing to attempt a vocalization with the sign to get the thing he was asking for, pretty soon we had a rough verbal 'more' and within 6 months -20 words. At 5 my son is quite verbal, although his language still needs massive work. I hate to think of implementing something so tough with a child in pain though. I would want to thoroughly rule that out before you get pretty tough with him. But the screaming has to go or you'll go crazy. Best of luck with this. Ear plugs? Alison M> > All my child does in SCREAM!! Help Please> > > > > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > Thank you,> > > > Springfield, MO>

[Guest guest]

, I have to agree with you. It could not hurt to keep a journal on his diet for a week or two to see if it's not food related. But if he's not screaming during baby einstein, then he's probably not physically uncomfortable. I am very close to two children (one is a relative and one I babysat) who both screamed excessively (though not quite to the extent of your son) until their language developed - it's all but disappeared now in both kids. So hang in there - I would definitely take the advice of getting pecs and some signing in place and you might see a HUGE change pretty quickly. I hope you find an answer soon!To: mb12 valtrex Sent: Mon, June 28, 2010 10:19:34 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

After reading all the emails... I really think that it is a communication issue. I feel really fired up and ready to have a meeting with all my therapist and tell them that we have to do SOMETHING! I found an IPAD app that we started working with today for communcication and I already saw less screaming!!

Sensory Diet- Not sure what that is..but I want it if my son needs it. I feel like the therapist have not been helping me enough. My son always cries when I am in the room during therapy so I ALWAYS have to leave!!

Thanks,

From: Maya <mayapiotrowska@ yahoo.ca>To: mb12 valtrex@ yahoogroups. comSent: Mon, June 28, 2010 9:13:36 AMSubject: Re: All my child does in SCREAM!! Help Please

I absolutly agree with . Let's keep a little bit more distance to all diets and supplements for a moment and think about where he is with communication skills...he probably wants communicate but doesn't have tools. This is what I was going through for few years when my son was around 3-4...Your son is already taking more supplements than any average kid with diagnosis I know. I would look "out of the box", stop adding more pills. But I feel for you, I've been there.Good luck. >> Hi , my guess is that the screaming is multi-fold. He's 2 I think you said? So, that could account for a fair amount of tantruming. I'm not sure how verbal your child is? If he doesn't have words to express himself (or many words), he's using what he

can to

get his point across, more speech therapy, PECS, sign, anything to increase his ability to request and decline in more appropriate ways could be beneficial. It may have become a familiar behavior for him, sort of a habit, it may even have a sensory purpose for him (may be how he upregulates himself, may be giving him auditory stimulation that he needs?) Wondering if Listening Therapy would be good, a sensory diet, a good OT could help with this. No hearing problem? There are so many avenues your DAN can go down, PANDAS, metals, inflammation, oxidative stress, mito, virus, etc. Maybe more testing? You said his screaming was intolerable on nystatin.... could that have been perhaps because his yeast was bad and you were seeing really bad die off? If that were the case-maybe more binding stuff like activated charcoal and to grin and bear it to see if it abates after a good die off period? Could be hell to go through. My son had terrible inflammation in his

gut which we found on scopes with Buie. He needed meds to help bring the inflammation down and that has really helped with the pain and his behavior has improved immensely. One of the meds, a prescription digestive enzyme called Ultrase eliminated undigested food in my son's poop. Easily covered by insurance, cheap co-pay, great help. Headaches? Ear infections? My last thought - when my son was 2 he didn't have any words but he whined constantly and wanted to be carried 24/7. I worked with an amazing slp in our home and she was pretty tough about it. She taught us some pretty straight forward behavioral techniques to ignore any whining, literally turn my back and walk away, but any attempt at a verbalization or sign or appropriate gesture I would really positively reinforce with the desired thing. I had to model with words and signs, hand over hand at first for the signs. We (everyone who spends significant time with the child) had to be totally

consistent and within about 2 months the whining was gone and replaced with a rough sign for 'more' and another for 'all-done', we ramped up to his needing to attempt a vocalization with the sign to get the thing he was asking for, pretty soon we had a rough verbal 'more' and within 6 months -20 words. At 5 my son is quite verbal, although his language still needs massive work. I hate to think of implementing something so tough with a child in pain though. I would want to thoroughly rule that out before you get pretty tough with him. But the screaming has to go or you'll go crazy. Best of luck with this. Ear plugs? Alison M> > All my child does in SCREAM!! Help Please> > > > > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > Thank you,> > > > Springfield, MO>

[Guest guest]

, do you have an OT on board? If you do ask them to do a sensory profile on your son, it's a questionnaire, you'll fill out part of it. You are looking at what behaviors of his are driven by imbalances in his sensory system like-seeking out lots of touch or hating it, how he responds to sound-over stimulated or under, vision issues, balance, if he knows where he is space, what irritates him, what soothes him. If your OT doesn't have a good understanding of sensory issues you may need a new OT. If you don't have an OT, find one with lots of sensory experience. The sensory diet is about coming up with activities spread throughout the day that either wake up certain responses in him or calm some that are over active. It involves things like; deep pressure, a brushing protocal, breaks for jumping, joint compression, therapeutic listening therapy, etc and it is very specific to each child's individual needs-not one size fits all and it can make a huge difference. The OT should design a plan that you can implement at home and the other therapists will utilize with him during his sessions.Alison M All my child does in SCREAM!! Help Please> > > > > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > Thank you,> > > > Springfield, MO>

[Guest guest]

A sensory diet is something and OT helps w/ ...things like chewy toys-if you child mouths a lot (but can also be a zinc deficiency), or deep pressure, jumping, Wilbarger brushing technique..basically it's meeting the sensory needs of your child to help him calm or to help him get going if he/she is lethargicLoriTo:

mb12 valtrex Sent: Mon, June 28, 2010 9:19:34 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

After reading all the emails... I really think that it is a communication issue. I feel really fired up and ready to have a meeting with all my therapist and tell them that we have to do SOMETHING! I found an IPAD app that we started working with today for communcication and I already saw less screaming!!

Sensory Diet- Not sure what that is..but I want it if my son needs it. I feel like the therapist have not been helping me enough. My son always cries when I am in the room during therapy so I ALWAYS have to leave!!

Thanks,

From: Maya <mayapiotrowska@ yahoo.ca>To: mb12 valtrex@ yahoogroups. comSent: Mon, June 28, 2010 9:13:36 AMSubject: Re: All my child does in SCREAM!! Help Please

I absolutly agree with . Let's keep a little bit more distance to all diets and supplements for a moment and think about where he is with communication skills...he probably wants communicate but doesn't have tools. This is what I was going through for few years when my son was around 3-4...Your son is already taking more supplements than any average kid with diagnosis I know. I would look "out of the box", stop adding more pills. But I feel for you, I've been there.Good luck. >> Hi , my guess is that the screaming is multi-fold. He's 2 I think you said? So, that could account for a fair amount of tantruming. I'm not sure how verbal your child is? If he doesn't have words to express himself (or many words), he's using what he

can to

get his point across, more speech therapy, PECS, sign, anything to increase his ability to request and decline in more appropriate ways could be beneficial. It may have become a familiar behavior for him, sort of a habit, it may even have a sensory purpose for him (may be how he upregulates himself, may be giving him auditory stimulation that he needs?) Wondering if Listening Therapy would be good, a sensory diet, a good OT could help with this. No hearing problem? There are so many avenues your DAN can go down, PANDAS, metals, inflammation, oxidative stress, mito, virus, etc. Maybe more testing? You said his screaming was intolerable on nystatin.... could that have been perhaps because his yeast was bad and you were seeing really bad die off? If that were the case-maybe more binding stuff like activated charcoal and to grin and bear it to see if it abates after a good die off period? Could be hell to go through. My son had terrible inflammation in his

gut which we found on scopes with Buie. He needed meds to help bring the inflammation down and that has really helped with the pain and his behavior has improved immensely. One of the meds, a prescription digestive enzyme called Ultrase eliminated undigested food in my son's poop. Easily covered by insurance, cheap co-pay, great help. Headaches? Ear infections? My last thought - when my son was 2 he didn't have any words but he whined constantly and wanted to be carried 24/7. I worked with an amazing slp in our home and she was pretty tough about it. She taught us some pretty straight forward behavioral techniques to ignore any whining, literally turn my back and walk away, but any attempt at a verbalization or sign or appropriate gesture I would really positively reinforce with the desired thing. I had to model with words and signs, hand over hand at first for the signs. We (everyone who spends significant time with the child) had to be totally

consistent and within about 2 months the whining was gone and replaced with a rough sign for 'more' and another for 'all-done', we ramped up to his needing to attempt a vocalization with the sign to get the thing he was asking for, pretty soon we had a rough verbal 'more' and within 6 months -20 words. At 5 my son is quite verbal, although his language still needs massive work. I hate to think of implementing something so tough with a child in pain though. I would want to thoroughly rule that out before you get pretty tough with him. But the screaming has to go or you'll go crazy. Best of luck with this. Ear plugs? Alison M> > All my child does in SCREAM!! Help Please> > > > > > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > > Thank you,> > > > Springfield, MO>

[Guest guest]

You're welcome,you are a trooper I can tell!

To: mb12 valtrex Sent: Sun, June 27, 2010 10:36:15 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

His behavior does improve after he eats. The betaine is prescibed by his DAN dr, Dr. Jermey Baptist. Thank you for letting me know about the supplement from Lee Silsby! It would cut down on how much I have to keep up with.

Thank you so much for all the info you ladies have provided for me!

From: Melinda McCauley <melmattmcyahoo (DOT) com>To: mb12 valtrex@ yahoogroups. comSent: Sun, June 27, 2010 10:14:53 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

I agree with ,forgot about the low blood sugar but behavior would improve once he ate.I still lean towards pain somewhere causing this- someone else mentioned betaine as a culprit.I have never used that product so I cannot speak to its effects but I have seen others post problems with it also.What is Betaine prescribed for? And just so you know at least 6 of your supplements are present in Dr.N's multi powder from Lee Silsby if that would help you. I switched to it a few months ago and it greatly reduced the amount of supplements I had to give each day,we use the Sonic Cholesterol too. Also,make sure your probiotics are dairy free and some parents say they have problems with strep lines so beware of that.

From: TRACEE ZEVAN <yahoo (DOT) com>To: "mb12 valtrex@ yahoogroups. com" <mb12 valtrex@ yahoogroups. com>Sent: Sun, June 27, 2010 9:33:45 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

is he verbal?? how is his growth? (height/weight) , have you had his glucose checked? he takes a lot of supps. but has a low carb/calorie diet, hypoglycemia can present like this... (tantrums, etc.,)

my son could not tolerate biotin, and folinic acid can cause problems, too (it's usually trial & error to find the right one.)

do you keep a daily journal of his intake/outake every day?? (very important when trying to figure out behaviors, etc., and their relationship to the food/supps your child is consuming..)

how are his bm's? is he eliminating 1, 2, 3 times daily??? (very important when detoxing..)

Sent from my iPhone

On Jun 27, 2010, at 10:07 PM, "elizabeth7899" <elizabeth7899@ yahoo.com> wrote:

Here is the list of everything that he is on...We are GFCFSFCF. He only eats fish, turkey, bison, fruits and veggies.Supplement Dosage ScheduleBreakfast1. CoQ10 – 1 capsule daily (100mg)2. Acetyl -L-Carnitine – 2 capsules daily (1000mg)5/223. B6-P5P-MAG – 1 capsule daily (50mg)4. Sonic Cholesterol – 1 capsule daily 5. Zinc – 30 drops daily6. Lithium – 10 drops a WEEK7. Betaine – ½ capsule dailyLunch 1. Biotin – 5 capsules daily (5000mcg)2. Calcium Citrate – 2 level scoops daily (500-1000mg)3. Magnesium Citrate – 2 level scoops daily (250-500mg)4. Folinic Acid - __________ daily (800-1600mcg)5. Nystatin – 4ml6. Vitamin C – 1 capsule daily (500mg)7. CLO – 1 teaspoon daily8. Betaine – ½ capsuleSnack1. Basic Nutrients Plus – 2 capsules daily 2. Vitamin E – ½ capsule daily (200 IU)3. L-Lysine – 1 capsule daily

(500mg)4. Selenium – 3 drops daily (100mcg)5. Vitamin C – 1 capsule (500mg)6. Chromium – 1 capsule daily (200mcg)7. Betaine – ½ capsuleDinner (5:00pm)1. L-Carnitine – 3 capsules (1000mg)2. Betaine – ½ Capsule Bedtime 1. Probiotics – 2 capsules he also gets B12 shots every 3 days and a allergey shot every week.> > My son is 2yo and has always thrown tantrums. We have been doing biomedical intervention since January of this year and the screaming has not stopped. He is on 20 different supplements including B12 shots and weekly allergey shots. He is also on a rotation diet. Is there anything that I can do to stop the screaming? Is there any other sopplement that can help? if he is not watching baby einstein then he is SCREAMING! My husband and I are at the end of our rope! We need help. > > Thank you,> > Springfield, MO>

[Guest guest]

I don't know the repercussions, just heard you should work your way up to high biotin doses... I take 5mg (5000 mcg) and I'm 156 lbs. I took 10mg a couple days and sorry to be so blunt but I had terrible gas (not terrible stink wise lol but terrible as in letting rip very often!) --- ToniFrom:

To: mb12 valtrex Sent: Mon, June 28, 2010 9:31:45 PMSubject: Re: Re: All my child does in SCREAM!! Help Please

I started out at the full dosage of 5000 MCG. I did not realize that it caused headaches.

My son has always been a screamer and cryer since before biomedical intervention was started in January of this year.

[Guest guest]

toni that sounds like die off, my son who is 50 pounds at a few points took 20 mgs PER MEAL for help with yeast control, so it can be done at higher levels with out bad side effects......just depends on what is going on with your child

Re: Re: All my child does in SCREAM!! Help Please

I started out at the full dosage of 5000 MCG. I did not realize that it caused headaches.

My son has always been a screamer and cryer since before biomedical intervention was started in January of this year.