Just got back from first neuro appt.

[Darla]

Just got back from meeting with neuro. She seemed to think he has PANDAS from the symptoms and behavior I explained. She was very matter of fact about it, and talked about going on propholatic antibiotics. Or just wait to see if his symptoms get worse next time and do a strep test etc. I talked about getting a metobolic profile done to see more about whats going on with him. She said would rather that we deal with one diagnosis at a time. ?? I said well, If hes got any deficiencies etc I would like to know about it. She then said that she could tell me right now it was going to come back with nothing on it. I said okay, well I don't see the harm. I told her that I would like to rule out things so I know exactly what I am dealing with here. And also that if he did have any issues going on I could suppliment them. She said kids don't get tics from deficiencies. I said well I've read that kids can get tics from not having enough magnesium. She yes, well but the tics wouldn't come and go. I said okay, well this is why I am asking all of this. I don't know all the answers and i would like to know what I am deling with. I did tell her I gave my son 1/4 tspn of inositol and she looked at me like I she was disgusted with me. I told her when I gave it to him, his ocd symptoms made a BIG improvement and when I stopped they came back. She went on about suppliments and how they can come from plants that are lethal.. etc and that they are just as potent as drugs. She mentioned there are avail drugs for his symptoms.. and that even though suppliments are "natural" and companies have made a lot of money off of them, you don't just take them, they affect a lot of things. Soo after that, I was like well, I know hes not autistic but maybe I could get in touch with a DAN doctor to get some tests run. So I can figure it all out. She chuckled and said your son does not have autism. I said I know that, however, they do have the ability to run more tests that will tell me about my son. She said she could refer me to a Developmental Pedi, But there are three appointments and they are long! I said ahhh yeah thats fine, like I was going to say ohh they take a long time, forget it. It's like it's personal for them or something. Im sure they get parents who go online etc and come in with stuff whatever. I told her if it's going to help my son and his day to day life than I want to do it. She understood that and then we ended the session. He got his bloodwork done so I guess I wait for that. Now I just need to find out what the metobolic test will show. LOL. I'm talking like I know all this stuff.. and I am winging it as I try to catch up! Sorry for long windedness. I'm off to toysrus b/c I had to bribe my eight yeard old so that he would give blood. He threw such a fit in there. Screaming and crying hiding under the chairs. He also misbehaved while with the neuro. I was acutally suprised. He was hungry and cranky. It was hard to have a conversation with her and absorb info. He was interupting. I was like what are you doing??He was just struggling to keep it together. He doesn't have that thing where he feels embarrassed in front of people to act up. But then sometimes hes embarrassed over things that he shouldn't be embarrassed about. I don't know. Okay. Step one is now complete. Now on to the Developmental Pedi. Any one have any suggestions from here on out, I would love to hear from you. THanks for listening!

[EAMom]

Hi Darla,

 

I would say things went well. After all, she didn't say anything to the tune of "Your child is insane and PANDAS doesn't exist" which many on this board have gotten. I'm glad you came prepared and sounded like you knew what you are talking about...I think then docs are more willing to cave in to your requests. To a certain point, we all need to be patient with these docs, esp. if they seem like they are at least willing to half-way listen to us.

 

Also, I don't know if you've heard of EMLA patches...you apply it to your child (where the blood will be drawn) before the procedure and it numbs the skin. Might make blood draws in the future a bit easier.

 

It's great she was open to the prophylactic abs!

 

re inositol (haven't used it, don't know much about it): this may be of interest http://biopsychiatry.com/inositol.htm

[dut]

nothing helpful I'm afraid but I felt as though I was reading about my dd when you talked of your son acting up in the appointment.. she's just the same at the moment... seemingly no shame and very out of character.

 

I feel it's worse for her when there is stress and the one dr we see, we only see for her PANDAS stuff and tho she's only 5 she's painfully aware of it all and she plays me up merry ###### in that drs. The stress appears to make her impulse control go out of the window and the subsequent stress sends my impulse control out the other window :-o

 

I'm fast learning that I'm not the patient woman I thought I was.......

[Darla]

Wondering if I should just go ahead and try propholactic antibiotics to see what happens? He seemed to improve as far as tics and ocd pretty quickly. After finishing azith on saturday. Monday he had no signs, tuesday very minimal. Also, what should I expect from the metabolic test? What will it show exactly? What should I look for?

[EAMom]

Hi Darla,

yes, I would definitely do the prophylactic Azith. (My 8.5 year old dd is on 250mg/day.)

Some folks find that subsequent episodes (tics/ocd) of PANDAS (if you child gets another strep infection) are more severe, harder to control, less responsive to antibiotics. Also, antibiotics seem to work best early on. Also, there is a concern that some kids may have permanent problems if PANDAS is not appropriately controlled (with prophylactic abs or IVIG).

 

I think you will also notice other changes on Azith (besides tics/ocd)...better mood, less tantrums, less anxiety. It may not happen immediately. It's great you saw decreased tics/ocd so quickly. Our dd took about 10 days to have decreased OCD. Tics (abnormal movements, perhaps these were more like compulsions) took 6 weeks to go away.

[Lacy]

Just got back from meeting with neuro. She seemed to think he has PANDAS from the symptoms and behavior I explained. She was very matter of fact about it, and talked about going on propholatic antibiotics. Or just wait to see if his symptoms get worse next time and do a strep test etc. I talked about getting a metobolic profile done to see more about whats going on with him. She said would rather that we deal with one diagnosis at a time. ?? I said well, If hes got any deficiencies etc I would like to know about it. She then said that she could tell me right now it was going to come back with nothing on it. I said okay, well I don't see the harm. I told her that I would like to rule out things so I know exactly what I am dealing with here. And also that if he did have any issues going on I could suppliment them. She said kids don't get tics from deficiencies. I said well I've read that kids can get tics from not having enough magnesium. She yes, well but the tics wouldn't come and go. I said okay, well this is why I am asking all of this. I don't know all the answers and i would like to know what I am deling with. I did tell her I gave my son 1/4 tspn of inositol and she looked at me like I she was disgusted with me. I told her when I gave it to him, his ocd symptoms made a BIG improvement and when I stopped they came back. She went on about suppliments and how they can come from plants that are lethal.. etc and that they are just as potent as drugs. She mentioned there are avail drugs for his symptoms.. and that even though suppliments are "natural" and companies have made a lot of money off of them, you don't just take them, they affect a lot of things. Soo after that, I was like well, I know hes not autistic but maybe I could get in touch with a DAN doctor to get some tests run. So I can figure it all out. She chuckled and said your son does not have autism. I said I know that, however, they do have the ability to run more tests that will tell me about my son. She said she could refer me to a Developmental Pedi, But there are three appointments and they are long! I said ahhh yeah thats fine, like I was going to say ohh they take a long time, forget it. It's like it's personal for them or something. Im sure they get parents who go online etc and come in with stuff whatever. I told her if it's going to help my son and his day to day life than I want to do it. She understood that and then we ended the session. He got his bloodwork done so I guess I wait for that. Now I just need to find out what the metobolic test will show. LOL. I'm talking like I know all this stuff.. and I am winging it as I try to catch up! Sorry for long windedness. I'm off to toysrus b/c I had to bribe my eight yeard old so that he would give blood. He threw such a fit in there. Screaming and crying hiding under the chairs. He also misbehaved while with the neuro. I was acutally suprised. He was hungry and cranky. It was hard to have a conversation with her and absorb info. He was interupting. I was like what are you doing??He was just struggling to keep it together. He doesn't have that thing where he feels embarrassed in front of people to act up. But then sometimes hes embarrassed over things that he shouldn't be embarrassed about. I don't know. Okay. Step one is now complete. Now on to the Developmental Pedi. Any one have any suggestions from here on out, I would love to hear from you. THanks for listening!

 

How frustrating. I've been in the same shoes as you with our DD (7 years). We have her Developmental Pediatrician appt coming up on the 15th, and then a second opinion from a different pediatric neurologist. Over the holidays while she was out of school the negative behaviors and OCD picked up with a vengence. I'm so tired of all of this that I'm starting to feel numb. She also has another appointment with the child psychiatrist in February. Luckily for us this doctor doesn't easily prescribe meds to 'her kids'. Every flippin doctor that we see always ends up telling us that we need to revisit that route. The only reason we are this time is because the Geneticist DD saw a couple weeks back gave me a smart rationale on why I should. It's a long story, but I'll give it a try.

 

Why are we all stuck on this goofy island? Where's the boat so we can get off and go back home to "normal".

[Darla]

Yes, I'm thinking now It might be the best option for now. He does have his Developmental Pedi coming up. I definately don't want to allow perminant damage to him. I did notice a better mood. But then again, i just second guess it all sometimes, maybe hes just an emotioal kid?? I can't deny the outburst when he got sick and I know we have noticed bad behavior around his sickness before, just not this bad. Im sure he has a predisposition to being anxious and oppositional, but it seems that if hes got PANDAS it will take over! Also his so called tics.. i believe are more like complusions too, maybe related more so to the ocd. They are not tourettic in the sense that he moves in jerky motions but almost anxiety related. Hes about to get off the bus.. lets see what mood hes in today! So my only concern is what to look out for as far as side effects to taking anitbiotics daily. I know of yeast and it also killing the "good bacteria". Anything else?

 

Hi Darla,

yes, I would definitely do the prophylactic Azith. (My 8.5 year old dd is on 250mg/day.)

Some folks find that subsequent episodes (tics/ocd) of PANDAS (if you child gets another strep infection) are more severe, harder to control, less responsive to antibiotics. Also, antibiotics seem to work best early on. Also, there is a concern that some kids may have permanent problems if PANDAS is not appropriately controlled (with prophylactic abs or IVIG).

 

I think you will also notice other changes on Azith (besides tics/ocd)...better mood, less tantrums, less anxiety. It may not happen immediately. It's great you saw decreased tics/ocd so quickly. Our dd took about 10 days to have decreased OCD. Tics (abnormal movements, perhaps these were more like compulsions) took 6 weeks to go away.

[faith]

Darla,

I am interested in your experience with inositol and your son's ocd? I've read some of your posts and see you have apparently had some success with this? I am realizing that alot of the frustrations I have wit my son are due to his rigidness and compulsions and that he has an "erasing" thing going on whenever he writes, so homework takes forever. We are not PANDAS, just tics and ocd. Could you tell me more about how much inositol you gave and how long it took to see an improvement in your child's ocd? Are you sure it was from that and not from any antibiotics he was taking? I've always focused on supplements and dietary for his tics, but this ocd is stuff is starting to come to the forefront and is taking over. I did try this a while back, but again I was so focused on his tics, so I thought he had an increase from it, not sure tho. So now that his tics are milder, I want to try again. Thanks for any info you can give me.

 

Faith

[peglem]

Yes, I'm thinking now It might be the best option for now. He does have his Developmental Pedi coming up. I definately don't want to allow perminant damage to him. I did notice a better mood. But then again, i just second guess it all sometimes, maybe hes just an emotioal kid?? I can't deny the outburst when he got sick and I know we have noticed bad behavior around his sickness before, just not this bad. Im sure he has a predisposition to being anxious and oppositional, but it seems that if hes got PANDAS it will take over! Also his so called tics.. i believe are more like complusions too, maybe related more so to the ocd. They are not tourettic in the sense that he moves in jerky motions but almost anxiety related. Hes about to get off the bus.. lets see what mood hes in today! So my only concern is what to look out for as far as side effects to taking anitbiotics daily. I know of yeast and it also killing the "good bacteria". Anything else?

 

My daughter's pediatrician checks her liver function every 6 months because zith builds up in tissues, and is cleared through the liver. He has her on a rather strange schedule for the zith (due to his safety concerns). She takes 250mg/day for 5 days, then none for 7 days, in order to allow it to clear from her system. Then we repeat that cycle....

But another thing to watch out for with antibiotic treatment, even if you are dealing with the yeast issues, is clostridia. That's another bad gut bacteria that seems to not be wiped out by antibiotics too well. It produces neurotoxins. The thing that helps with that is s. boulardii, which is a beneficial gut yeast. Still, its unclear to me if antiyeast treatments kill the boulardii.

 

Besides the antibiotic, I wanted to mention that I have pretty extensive layman experience as far as psychiatric treatments go. If you have a child with rage episodes try to avoid anything anticholinergic. This would definately include all antipsychotics (seems like they all want to give risperdal these days). Some ssri's also have anticholinergic properties, as do antihistamines. (benedril triggers rages in my daughter). What has helped my daughter immensely with rages (and we'd tried many, many things) is lamictal, which was prescribed for seizures, but is used also off label for mood stabilizing. Anyway, it not only has reduced seizures, but really has helped immensely in reducing rages. Of course everybody reacts very differently to these drugs and most of them were tried before we even knew about the strep problems... I'm not an advocate of psychiatry, believe me, but I know there are times, at least short term where your child really needs some relief. My daughter was very miserable (and me too) for years- its actually emotionally painful for me to see any photographs taken of her during that time-like they all are screaming, "Mommy, help me!" Based on my experience, if you can find something to help your child get through this until they are healthy enough to deal with it, its worth it. Yes, I wish I could have found natural stuff to help her, and in fact I do use some, its just not enough...and a lot of the psych meds either did nothing or made things worse, but I feel bad for her being so miserable for so long before I found something that worked and I began to get so wary of meds that it took me longer to find something and get to the right dosage just because I was sooo hesitant to try again.

[michele]

I totally agree with you. We experience the same extreme moods and anxiousness go to full throttle during these episodes. Also, when not in episodes my son can also be somewhat moody and stubborn but it like a switch is pulled when he gets one of these epsiodes and the tics and compulsions and moods explode. Today he walked though the door and my daughter said get in the car we have to drive me to the YMCA. He just lost it. He didn't want to do this. She usually walks to the Y after school and this was out of sinc.

 

I now know he and my twenty three month old have a lot of sensory processing issues. Do others parents here see this in their PANDAS/ tics kids also? OT has helped a ton with this. The swings and jumping and heavy lifting help calm them down. I don't know if this is related to the PANDAS or neuro but it is huge for us. Little things set him off and I have to defuse him before he explodes. Guess what? Hubby has same issues. Short fuse and poor social skills. Maybe he would have been on the spectrum if they had diagnosed it in the 70's and 80"s. This has to be genetic. My husband's mom is a real moody, unhappy person who always thinks everyone is out to get her. She spends extreme to buy her affections and creates drama towards everyone in the family. They don't discuss the medical history in his family and are extremly defensive. My husband won't even discuss his childhood if he had tics, speech issues , ADD nothing. They have dark secrets. One time I brought up my son's Dr's appointment for an EEG in a restaurant with his parents and they started screaming at me about how they never know anything that is going on and got up and left, leaving me the check for their meals which was lobster and steak. Best part it was my birthday dinner. Never again did we ever speak of his illness. I don't know what hubby tells them but I know they have never asked if they could help with the kids or about their health. They are a very difficult family to get along with. It doesn't help with all the stress we deal with with ill kids to have sucky inlaws too!

 

I know alot of you won't use antipsychotics like abilify and I give you credit. I just couldn't take the tantrums anymore. He still gets ugly on them! One day without meds and I think he could flip out and jump out a window or something. It is like his radar to stop and think rational is missing. He goes from 0 to 100 with no inbetween.

 

Next week we get genetic testing done for the baby, fragile X and a MRI because of speech and motor delays to look at migrational defects. I just find this unbelievable how they are both having neuro issues. Why is it this runs in families? No Dr. ever looked into this with my son. I am nervous and at the same time interested that maybe we will find an answer. Keep us in your prayers next Fri. I am very scared about putting such a little one, 25lbs. under light sedation for the MRI. I guess this is done all the time though at the children's hospital in Akron. I am hoping I won't back out from nerves.

 

Michele

 

 

Yes, I'm thinking now It might be the best option for now. He does have his Developmental Pedi coming up. I definately don't want to allow perminant damage to him. I did notice a better mood. But then again, i just second guess it all sometimes, maybe hes just an emotioal kid?? I can't deny the outburst when he got sick and I know we have noticed bad behavior around his sickness before, just not this bad. Im sure he has a predisposition to being anxious and oppositional, but it seems that if hes got PANDAS it will take over! Also his so called tics.. i believe are more like complusions too, maybe related more so to the ocd. They are not tourettic in the sense that he moves in jerky motions but almost anxiety related. Hes about to get off the bus.. lets see what mood hes in today! So my only concern is what to look out for as far as side effects to taking anitbiotics daily. I know of yeast and it also killing the "good bacteria". Anything else?

 

My daughter's pediatrician checks her liver function every 6 months because zith builds up in tissues, and is cleared through the liver. He has her on a rather strange schedule for the zith (due to his safety concerns). She takes 250mg/day for 5 days, then none for 7 days, in order to allow it to clear from her system. Then we repeat that cycle....

But another thing to watch out for with antibiotic treatment, even if you are dealing with the yeast issues, is clostridia. That's another bad gut bacteria that seems to not be wiped out by antibiotics too well. It produces neurotoxins. The thing that helps with that is s. boulardii, which is a beneficial gut yeast. Still, its unclear to me if antiyeast treatments kill the boulardii.

 

Besides the antibiotic, I wanted to mention that I have pretty extensive layman experience as far as psychiatric treatments go. If you have a child with rage episodes try to avoid anything anticholinergic. This would definately include all antipsychotics (seems like they all want to give risperdal these days). Some ssri's also have anticholinergic properties, as do antihistamines. (benedril triggers rages in my daughter). What has helped my daughter immensely with rages (and we'd tried many, many things) is lamictal, which was prescribed for seizures, but is used also off label for mood stabilizing. Anyway, it not only has reduced seizures, but really has helped immensely in reducing rages. Of course everybody reacts very differently to these drugs and most of them were tried before we even knew about the strep problems... I'm not an advocate of psychiatry, believe me, but I know there are times, at least short term where your child really needs some relief. My daughter was very miserable (and me too) for years- its actually emotionally painful for me to see any photographs taken of her during that time-like they all are screaming, "Mommy, help me!" Based on my experience, if you can find something to help your child get through this until they are healthy enough to deal with it, its worth it. Yes, I wish I could have found natural stuff to help her, and in fact I do use some, its just not enough...and a lot of the psych meds either did nothing or made things worse, but I feel bad for her being so miserable for so long before I found something that worked and I began to get so wary of meds that it took me longer to find something and get to the right dosage just because I was sooo hesitant to try again.

[Darla]

Hi Faith, sure. When my 7 yr old had these movements that came and went we delt with it and were told it was common in boys his age, he will grow out of it etc. Then this past fall his movements increased and then this contamination and ritual ocd stuff started. I had had it with sitting around. He does not take any meds and up until a few months ago wasn't even taking a mulit vitiman. I started him on Intrakid liquid vitamin. It's expensive about $70 for a bottle which lasts a little over a month. That was all good, but no change in behavior. I also changed diet, bought whole foods with no preservatives, additives, dyes etc all that. No change. Did that for a couple of months. While I was researching I came across inositol and that its used for anxiety, depression, and ocd. It's a B complex vitamin; B8. It helps cell membranes, which facilitate nerve impulses.

 

1 Teaspoon equals 2 grams. I bought it in the powder form, 600 mg from GNC. Its recommended that you take choline with it in the same amount as well as the entire B group along with Vitamin E and C with folic acid and linoleic acid. It supposed to increase the funtioning of inositol. I did not do that though. I just did straight inositol. I was nervous to even do that. So I was taking very small baby steps. I found information that stated that inositol is good for undermethlated high histamine patients. Nearly all ocd patients fit this. Symptoms of that are Oppositional defiant disorder, allergies, depression, strong wills, perfectionism, slenderness, high libido. That is just the info I found. Calcium, magnesium, B6, TMG and Zinc are all good for this. I also found that SAMe is quickest way to help if your child is undermethylated, with high histamine. Now I don't know where my child fits here, but the symptoms matched. I haven't done any of this I listed above except inositol and found good results. I just wanted to give you what I know in case you pick something out of this that might help.

 

Inositol has a sweetness to it, it's chemically related to sugar, so mix it in with apple or orange juice, whatever you like. I started with 1/4 tspn a day and for my son it seemed to work quick. I noticed his face washing, and holding his spit dramatically decreased. He wasn't preoccupied with hair in his mouth. His tics seemed to be more stubborn, but to me this was good news. I would say after about a week I started noticing. It was quick. The side effects to inositol are diarrea,fatigue, headaches, nausea and maybe rash. I did not experience any of those. The listing I found for suggested amounts went as follow:

 

wk 1- 1 tspn 2x a day

wk 2- 1 tspn 3x a day

wk 3- 1.5 tspn 3x a day

wk 4- 2 tspn 3x a day

wk 5- 2.5 tspn 3x a day

wk 6 3 tspn 3x a day

 

Thats building up to 18 grams a day. It states that if there is no noticable improvement by the end of that period than you probably discontinue.

 

I stopped this once he got sick with strep and went on antibiotics. I haven't come across anything that says its not good to mix them, but I just didn't want to chance it. I will say though after he finished his antibiotics, he had a tic free/ocd free day. He finished the antibiotics last saturday and Monday after he got home from school there was nothing. He was happy and relaxed. He even dropped a bunch of skittles on the rug and I told him to pick them up so the baby wouldn't take them and he picked them up and threw them right in his mouth! My jaw almost dropped. I didn't want to bring it to his attention but I was amazed. Tuesday his shoulder popping tic came back and then wenesday was the neuro and blood work which just totally through him over the edge, so last night the spit holding shoulder popping stuff was all there. Okay sorry for the book! Hope this helps. Im have not started it again, only b/c the neuro was ready to say he has PANDAS and suggested starting anitbiotics, not sure yet what to do. Sorry for the book, hope this helps.

-Darla

[faith]

Thank you so much, Darla,

It helps to have something clarified by someone else, especially if they have followed through with what they have researched. I have read some of the same information you have sited, so I am familiar with some of it (i.e. undermethylated, hi histimine).

 

Now, regarding your dilemna concerning the PANDAS, again we are not PANDAS, however, I do believe that it is possible to not be PANDAS strictly, (meaning have a tendency toward tics, ocd, or actually have diagnosed tourettes) and still be affected by virus or strep to some degree. What you have described does sound like your son is affected by strep and the symptoms that would be associated with PANDAS. But I find it very interesting that you have found something like the inositol to help with the ocd behaviors. That boosts my belief that nutritional and supplements can still have a beneficial effect even if PANDAS is the issue. I understand that you may want to see what the neuro that you saw recommends and if the antibiotics will help with your child's symptoms. Does your child only have these symptoms when exposed to strep, or does he still have minor tics and such, even when not having the exacerbated problems during exposure to strep? I know you are still in the early stages of figuring this out, but its good to put the whole picture together before you decide the go the prophylactic route. My son has not had any real instances of strep, and his symptoms wax and wane, but they are not the dramatic episodes that some have described, so I just keep informed, but my path is still dietary and supplementation, for I feel that food allergies/intolerances play a big role here too.

 

Will you do a trial of antibiotics, or have you done that already, or was it just coincidence that he had the strep and was put on antibiotics and you see improvement so are leaning toward this diagnosis? You say his symptoms are creeping back? could you get the doc to give you another course of the antibiotic and see what happens?

 

Thanks again for your information. I have given the inositol for two days so far, I have a powder formula called Vital Nutrients that I got from our Naturopath a while back. I am also giving a b-complex for a couple weeks too, and I always give magnesium. I've been on this road a while, but am starting over on the b vits as I never felt it had any benefits before and I imagined(?) an increase in tics. I am trying now to do this step by step as you say.

 

Faith

[Darla]

Good luck, I hope it works well for you guys. My son has had these symptoms for a couple years. First it was eye blinking, that went away, a good while later he would twist his wrist and ankles,that lasted for a few months and then slowly decreased and seemed to let up. Then this past fall that came back with shoulder popping then in addition he was holding his spit, washing his face and very concerned about hair in his mouth. He seemed hyper at times, no adhd, straight a student, nothing exciting to report there. No issues in school. But the teacher did notice his movements and also he used the bathroom frequently. My son also make comments about having to go to the bathroom a lot. I blew it off at first. Then this past xmas vaca i noticed his movements increased a lot. I thought it was anxiety due to xmas and all the excitement. But then a few days later he looked like he had a really bad sinus infection. Complaining about ear pain and his eyes were blood shot with green in the corners. We had seen this before. Took him to the dctrs. Rapid strep came back neg then 48hrs told us it was positive.

 

During that time he had two nights where he had fits of rage and crying. He was swearing, hitting throwing things across the room. He had never done that. I had already been researching his movement issues and dismissed pandas until this. Then after being on azith for four days he headed back to school on monday. He came home was great. No tics or ocd and was relaxed. Slowly throughout this week the symptoms are coming back. So Im just not sure. It seems like pandas on the one hand, but it does seem that the inositol worked somewhat so i don't know. Maybe it does help if it's pandas. I had a metabolic diagnostic run on him yesterday. I don't know what to expect but I found some research that show kids with PDD's are suseptable to PANDAS and their metobolic tests come back showing that they are short on sulfate and magnesium. I don't know. Hes not be diagnosed with PDD's but maybe he will be? He's got a appt with a developmental pedi coming up, so maybe he can tell us if hes got PDD.

 

He's very oppositional in general and negative as well. His temper has always been an issue. He explodes, but when he was sick the week before this, it was a first as far as how agressive and angry, then tearful and nervous almost like a panic attack. I so feel he's got some sensory issues, when he gets hurt even a little, he freaks. Even yesterday at the neuro appt she swiped the bottom of his foot and was very uncomfortable with it and said it hurt. She made me second guess her expertise b/c he asked her not to touch his back when she looked at a mole and she teased him about it and kept touching him on his back as a joke. I would have thought she had some experience with kids that have sensory issues etc and not act like hes just a regular kid who could take it. I don't know maybe im over reacting. She also was not keen on issuing a metobolic diagnostic.. i pushed and she did. My next thing is I would like to check is immune system. Not sure what test I could have them run to see has issues with that. I too want to use natural suppliments and maybe some therapy for behaviors, I am really not open to meds. We haven't even done any trial of antibitics yet. I am skeptical of this Bactrim the neuro reccomended. It doesn't help agains GABHS and is strong and we don't know long term side effects. That's basically where I am at. I am a wordy girl! Sorry. LOL Thanks for your input!

 

Thank you so much, Darla,

It helps to have something clarified by someone else, especially if they have followed through with what they have researched. I have read some of the same information you have sited, so I am familiar with some of it (i.e. undermethylated, hi histimine).

 

Now, regarding your dilemna concerning the PANDAS, again we are not PANDAS, however, I do believe that it is possible to not be PANDAS strictly, (meaning have a tendency toward tics, ocd, or actually have diagnosed tourettes) and still be affected by virus or strep to some degree. What you have described does sound like your son is affected by strep and the symptoms that would be associated with PANDAS. But I find it very interesting that you have found something like the inositol to help with the ocd behaviors. That boosts my belief that nutritional and supplements can still have a beneficial effect even if PANDAS is the issue. I understand that you may want to see what the neuro that you saw recommends and if the antibiotics will help with your child's symptoms. Does your child only have these symptoms when exposed to strep, or does he still have minor tics and such, even when not having the exacerbated problems during exposure to strep? I know you are still in the early stages of figuring this out, but its good to put the whole picture together before you decide the go the prophylactic route. My son has not had any real instances of strep, and his symptoms wax and wane, but they are not the dramatic episodes that some have described, so I just keep informed, but my path is still dietary and supplementation, for I feel that food allergies/intolerances play a big role here too.

 

Will you do a trial of antibiotics, or have you done that already, or was it just coincidence that he had the strep and was put on antibiotics and you see improvement so are leaning toward this diagnosis? You say his symptoms are creeping back? could you get the doc to give you another course of the antibiotic and see what happens?

 

Thanks again for your information. I have given the inositol for two days so far, I have a powder formula called Vital Nutrients that I got from our Naturopath a while back. I am also giving a b-complex for a couple weeks too, and I always give magnesium. I've been on this road a while, but am starting over on the b vits as I never felt it had any benefits before and I imagined(?) an increase in tics. I am trying now to do this step by step as you say.

 

Faith

[faith]

Darla,

I just wanted to post a link to one of my past posts where I describe an episode I experienced with my son about two years ago. I mentioned we are not PANDAS, but at that time, I did go the route of trying to figure this out because of this episode and we did see an Immunologist regarding it. I don't regularly post on the PANDAS board, I am on the tics/tourettes board, so not really remembering too much about it. But just to give you an idea on what my experience was when I looked into the PANDAS aspect, here is the thread and you could read my post (#3).

 

http://www.latitudes.org/forums/index.php?...;hl=control+him

 

P.S. you have some competition on "wordy" with me! my posts are full of "sorry's" ( but you are probably a fast typist like me, so its a double whammy.)

 

Faith

[Darla]

Hi Faith,

 

So I read your previous post. I am suprised to here you say it's not PANDAS. I mean, maybe I'm not suprised, but confused. Have you gotten a different diagnosis? Or tried prophlactic antibiotics? I'm thinking probably not since you say it's not PANDAS. It does sound simlar to my son in some ways. I'm still searching...

 

My son is actually driving me nuts at the moment. His witching hour is about five o'clock every night. He gets hyperactive for a brief period of time. Then it just goes away. I've noticed lately that it's literally around the same time every night , and then hes fine. It's this burst of energy. He goes nuts.

 

ohh and yes I do happen to be a fast typist and some might say over analytical, what can ya do?

 

thanks,

darla

 

 

Darla,

I just wanted to post a link to one of my past posts where I describe an episode I experienced with my son about two years ago. I mentioned we are not PANDAS, but at that time, I did go the route of trying to figure this out because of this episode and we did see an Immunologist regarding it. I don't regularly post on the PANDAS board, I am on the tics/tourettes board, so not really remembering too much about it. But just to give you an idea on what my experience was when I looked into the PANDAS aspect, here is the thread and you could read my post (#3).

 

http://www.latitudes.org/forums/index.php?...;hl=control+him

 

P.S. you have some competition on "wordy" with me! my posts are full of "sorry's" ( but you are probably a fast typist like me, so its a double whammy.)

 

Faith