Tourette's + Bipolar diagnosis for 6 year old

[fencelatitude]

No we have not. We pinned the night sweats down to the lamictal. High doses of lamictal drove him absolutely crazy.

 

Thanks for the reply, I will check there too.

 

Have you ruled out Lyme disease or other tick borne illnesses? I was reading over your posts and a lot of the symptoms, especially the night sweats and agression can be caused by babesia. Maybe you could post your detailed history on the Lyme forum and get feedback.

 

Colleen

[Fixit]

There is a DAN that treats PANDAS too, who moved to Cumming GA.

Used to be in Melbourne FL

Dr Bradstreet.

[fencelatitude]

We couldn't figure out what changed and why our son was so agitated after settling w/abilify. The Dr recommended upping his dose of melatonin from 900 mcg -> 5 MG. He was SO irritable on this dose. 2 days ago we went back to 900 mcg and he's been so much happier and pleasant during the day.

 

Thanks so much for this information about melatonin!

 

My brother recommended this product and we are going to try it:

 

http://www.iherb.com/Hyland-s-Calms-Forte-4-Kids-125-Quick-Dissolving-Tablets/16882

 

just an FYI that big doses of melatonin can actually have a reverse effect on some people....my son could only take MICROgrams of it (around 300mcg) and the miligram doses recommended made his sleepless, restless and very edgy at night and then mega groggy by day

Edited May 3, 2012 by fencelatitude

[kimwal]

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate.

Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

[kimwal]

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate.

Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

[kimwal]

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate.

Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

[kimwal]

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate.

Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

[kimwal]

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate.

Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

[fencelatitude]

We are in the process of getting a second opinion.

 

Our Dr recommended adding Intuniv back since we've had 2 months of *constant* irritability. We started at night for 2 weeks of 1mg with no change. Dr decided that adding 1 mg in morning as well would help. He's now had trouble sleeping again and his behavior at school has been some of the worst all year. Previously we tracked that the intuniv ( without abilify ) helped him. We are unsure if it's the intuniv + abilify ( 5 mg 2x day ) being too high is the culprit here. My son is VERY sensitive to meds.

 

I saw Kelly Dorfman speak recently via a group in Atlanta called Healthy Foundations:

 

https://www.facebook.com/healthyfoundations

 

Kelly wrote "What's eating your child, The hidden connection between food and childhood ailments", $10 e book:

 

http://www.amazon.com/Whats-Eating-Your-Child-ebook/dp/B0051NHJEG/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1354367135&sr=1-1&keywords=what%27s+eating+your+child

[pr40]

Our ds4 has some similar behaviors. We had some positive effect with he following, Abx, metylcobaltium b12 vitamin, gluten free diet. we think that ds4 has PANS. good luck!

[trggirl]

Hi Kimwal, thanks for sharing your story! Would you mind telling us what helped your son? It's great that you found a good doctor!

[fencelatitude]

His recent blood tests show all vitamin levels to be "normal". How did you determine that you needed b12? We plan to try gluten free. We are going to try herbs now that he's going off Intuniv. My brother is a physical therapist and has studied Chinese medicine/herbs. I also bought a fitbit and I plan to track his sleep as related to meds and supplements.

 

BTW he's bouncing off the walls again .... not sure how to stop this in the interim.

 

What do the abbreviations DS4 and DD8 mean?

 

Our ds4 has some similar behaviors. We had some positive effect with he following, Abx, metylcobaltium b12 vitamin, gluten free diet. we think that ds4 has PANS. good luck!

[Cj60]

ds = dear son (in this case 4 yrs.s old) dd = dear daughter (8 y.o.)

 

Our ds4 has some similar behaviors. We had some positive effect with he following, Abx, metylcobaltium b12 vitamin, gluten free diet. we think that ds4 has PANS. good luck!

[pr40]

to answer "fencelatitude"'s question: how did we determine the need for b12? we did not determine it before trying. We gave both dd and ds 1000mcg of methylcobalamin vitamin b-12 lozenge just to try. The effect was immediate. they took it everyday for two weeks. Unfortunately, the effect did not last. It decreased during a bout of croup. Now, we will be trying the same dose every other day. As I understand it, mb-12 works for some kids, but not for others.

[colleenrn]

When was the last time he had a throat swab done to look for strep? I would get one and make sure they grow it out for a full 72 hours. It is very possible to have strep and still have normal strep titers. A normal strep titer cannot and does not rule out strep because some people just don't get elevated titers. Have you also tested for mycoplasma pneumonia. It can cause the same PANS symptoms as with strep. They should do an IgM and IgG for mycoplasma pneumonia if you have him tested for it.

 

When he had strep months ago and had allergic reaction to amoxicillin and azithromycin, what did you then treat him him and for how long? Have you considered trying to get your physician to just try and antibiotic trial to see if it helps at all? When you say his hands and feet got splotchy with amoz and azith, did he have any other rashes or allergic symptoms to the meds?

 

Hang in there!

 

Colleen