New here, need some help re: 5 yr old son

[tlkinser]

Hi all, I have been reading posts here since last April after my son exploded with tics. After many dr visits (pediatrician, ER, 2 neurologists, cardiologist), it was found that his ASO level was over 600 and he was dx with PANDAS. His levels have since gone down to normal, yet his tics are worse then ever. At this point, he is rarely tic free for even a minute unless he is sleeping or we are in the company of others and he is holding it in as best he can. He was dx with Synd. Chorea by one of the neurologists, PANDAS by the pediatrician, tic disorder by the ER, and TS by the other neuro. I have been told to wait and see and come back when/if I decide to medicate him. In our opinion, this is not an option as he's only 5 (just turned 5 this summer) and I can't take a risk with any of the side effects. We have just been so overwhelmed and confused by everything these past 4 months. I feel like I'm either sick to my stomach or crying all day long as I watch him tic. It is heartbreaking as you all know. I just can't believe that in such a short time, my son has become a different person. We can hardly go anywhere in public right now. I am just so sad for him and for our family.

 

We are currently doing the Feingold Diet and just when I think I see some improvement, he starts ticcing like crazy again. Today, I decided to cut out milk and dairy for the next 4 days to see if that helps. I have read/am reading some of the books listed here: Doris Rapp, "Is This Your Child", Jacquelyn McCandless, "Children With Starving Brains"; Jane Hersey, "Why Can't My Child Behave?" and also Sheila Rogers' book that I ordered from this site. They are all wonderful resources and I've learned so much. I am just trying to implement all of the info into helping my son. We took him to an allergist last week and the scratch test only showed an allergy to dust mites, mold and egg (sensitivity). We have covered all of the beds and pillows with cotton allergen-free covers, are in the process of getting the home tested for mold, and I've removed egg from his diet.

 

We have an appt with an environmental physician in 2 weeks and I am wondering if I'll make that long at the rate we're going. Until then, I am reading everything I can (feels like I'm on the computer all day long) and taking notes so that I am prepared for our appt. Thank you for reading this far and THANK YOU for all of the info you've offered in past posts!

 

tlk

[John]

Hi tlkinser, and welcome to the Forum.

 

First thing I must say is your son has not changed into a different person. He is still the same loving child he always was. Dont treat him any different to how you treated him before.

 

Take a deep breath and a time out. You are not going to see an improvement over night. Take your time and try things one step at a time. It seems you are doing a lot already, good for you.

 

It is very easy to get snowed under with info from this forum. Take your time. You seem to be making an exellent start already.

 

Please try not to let this dominate your lives. We all know exactly how you feel. We have been through the exact same feelings of dispair, panic, helplessness ect. Dont stop going out as a family, remember its always harder for us parents as it is for our kids.

 

Dont give up and as someone said to me a few months ago when I was feeling the same as you "there is light at the end of the dark tunnell and you will get there eventually" we have and so will you. Have hope it will work itself out.

 

God Bless

 

J

[faith]

Hi tlk,

welcome, and you sound like you are off to a good start. Did you say your child has only had tics for about four months? You don't mention if any of the doctors have prescribed antibiotics when they got the results of the titers? If so, did his symptoms subside at that time? What do they currently recommend to treat the PANDAS?

Also, are you using any supplementation at all? It sounds like you've seen alot of doctors for a diagnosis, but have any offered a protocol of treatment? The environmental doctor probably will be the best for this, or a naturopathic doctor.

 

Please try not to worry too much, (and I'm not one to take my own advice!), however, I think with all you are trying and learning, I'd be surprised if something did not seem to start helping or at least make a difference. Please let us know if the removal of egg and dairy seem to help.

 

You are in my prayers,

Faith

[michele]

Hi all, I have been reading posts here since last April after my son exploded with tics. After many dr visits (pediatrician, ER, 2 neurologists, cardiologist), it was found that his ASO level was over 600 and he was dx with PANDAS. His levels have since gone down to normal, yet his tics are worse then ever. At this point, he is rarely tic free for even a minute unless he is sleeping or we are in the company of others and he is holding it in as best he can. He was dx with Synd. Chorea by one of the neurologists, PANDAS by the pediatrician, tic disorder by the ER, and TS by the other neuro. I have been told to wait and see and come back when/if I decide to medicate him. In our opinion, this is not an option as he's only 5 (just turned 5 this summer) and I can't take a risk with any of the side effects. We have just been so overwhelmed and confused by everything these past 4 months. I feel like I'm either sick to my stomach or crying all day long as I watch him tic. It is heartbreaking as you all know. I just can't believe that in such a short time, my son has become a different person. We can hardly go anywhere in public right now. I am just so sad for him and for our family.

 

We are currently doing the Feingold Diet and just when I think I see some improvement, he starts ticcing like crazy again. Today, I decided to cut out milk and dairy for the next 4 days to see if that helps. I have read/am reading some of the books listed here: Doris Rapp, "Is This Your Child", Jacquelyn McCandless, "Children With Starving Brains"; Jane Hersey, "Why Can't My Child Behave?" and also Sheila Rogers' book that I ordered from this site. They are all wonderful resources and I've learned so much. I am just trying to implement all of the info into helping my son. We took him to an allergist last week and the scratch test only showed an allergy to dust mites, mold and egg (sensitivity). We have covered all of the beds and pillows with cotton allergen-free covers, are in the process of getting the home tested for mold, and I've removed egg from his diet.

 

We have an appt with an environmental physician in 2 weeks and I am wondering if I'll make that long at the rate we're going. Until then, I am reading everything I can (feels like I'm on the computer all day long) and taking notes so that I am prepared for our appt. Thank you for reading this far and THANK YOU for all of the info you've offered in past posts!

 

tlk

 

Hi,

 

My son is five too. I have been dealing wih his mild tics ,OCD, and ADHD during strep episodes since he was fifteen months old. Hopefully your son's tics will come and go as my sons have. I don't know if you've seen any correlation to illness, shots etc. but try and document as much as possible on the course of his tics, Dr.s you see, meds etc. It will help you in the long run when you see any new Dr. I have read all the books you've mentioned too. I am also in the process of trying the GFCF diet with my son. It is not easy to do because they get upset at not getting foods they like and are used to. It will be worth it if we can find them some relief from their problems. Does your son have any behavior troubles or OCD with the tic episodes? We are going the Biomedical route now too. Even though they are young, five I think trying the medicines now is better then the long term damage that may come from the basal ganglia part of the brain being destroyed by the strep autoimmune reaction. Keep reading and praying for a cure to this terrible disease. I am giving my son several supplements and antibiotics right now. Have you watched the HBO documentary on Tourettes? I just finished it and feel so much compasion for the kids who have this. Try to find a Dr. that knows about treating PANDAS. Try Dr. Murphy at the Shands clinic in Florida. I am on a waiting list right now. There has to be a way to get our boys help. Keep up the good fight. God bless. Thanks for sharing your story.

Michele

[tlkinser]

Hi tlk,

welcome, and you sound like you are off to a good start. Did you say your child has only had tics for about four months? You don't mention if any of the doctors have prescribed antibiotics when they got the results of the titers? If so, did his symptoms subside at that time? What do they currently recommend to treat the PANDAS?

Also, are you using any supplementation at all? It sounds like you've seen alot of doctors for a diagnosis, but have any offered a protocol of treatment? The environmental doctor probably will be the best for this, or a naturopathic doctor.

 

Please try not to worry too much, (and I'm not one to take my own advice!), however, I think with all you are trying and learning, I'd be surprised if something did not seem to start helping or at least make a difference. Please let us know if the removal of egg and dairy seem to help.

 

You are in my prayers,

Faith

 

Thank you for your reply. Yes, my son has only had tics for about 4 months, although my husband and I can both remember two other specific episodes in the past year of throat clearing that lasted for about a week and then went away. We thought he had allergies but now know otherwise. I also should add that he was a very easy going, laid-back baby and about the time that I introduced table food (10 months), his personality changed completely. He become very tempermental, started shrieking, and would occasionally bang his head on the floor. He had a speech delay and there were several times that I asked my husband if he thought our son might be autistic. We just assumed that he was a boy and therefore, different from our older "easy-to-parent" daughter. I took him to the pediatrician several times for his behavior, read all kinds of books about parenting strong-willed and spirited children, and left many play-groups in tears. I've always felt there was something different about him but thought we were dealing with dyslexia or ADD. I've always said "his wires are criss-crossed". There are so many things that I now see in hindsight...

 

We treated the strep with amoxicillin (I think about 10 days) and then I just took him in to the dr every 2-3 weeks to have his blood checked. The titres continued to drop with each visit. During this course, I took him along with my 6 year old dd to another neurologist as both had been dx with PANDAS by my pedi at that time. (Long story with her, but she is so minor compared to him that I can't even worry about her right now. Eye blinking and some slight humming, but it doesn't bother her nor does it bother us or anyone else at this point.) Anyway, the neuro told me that the PANDAS diagnosis is not really valid after one incidence of strep since so many school aged children have strep at any given time. A coincidence, he said. He told me that if their tics explode again AND the ASO titres go up, then we can talk about PANDAS. Otherwise, he just gave them the labels of TS (ds) and tic disorder (dd). Obviously, I left in tears with more questions than answers. sigh.

 

My son's tics did decrease during May and early June, but by late June they were starting up again. By July, he started having heavy tics and they have not stopped. I have had him tested several times this summer and his levels have all come back normal. His tics are both vocal and motor including: snorting, high-pitched inhaling (sounds as if he's surprised and this one goes on non-stop, almost like hiccups all.day.long.), yelling out "EGHHHH!" or "AGHHHH!" loudly, kissing/lip-smacking sounds. head shaking, licking or biting his shirt, fingers, or objects around him, head banging or banging objects on his head, the list goes on and on. His behavior also changes as he sometimes acts VERY immature (baby talk, potty talk, inapproriate laughing, hyperactivity, etc.) He has not always been like this, nor is he always like this during the day. It comes and goes. I know he knows better. I have found him in his room on the floor holding his head saying that he "hates his allergies" and wants them to go away. We have told him that he has allergies rather than go into the whole TS thing with him and the other two children. It is breaking our hearts. He is such a sweet loving boy, but I find myself losing my patience with him. He is scheduled to start Kindergarten in 2 weeks but I am thinking that I might need to keep him home until we get this under control.

 

So much to talk about as I know we each have our own stories full of details. We could all write a book, I'm sure. Thank you for reading this far and for offering any advice you might have. I am so anxious for our appt with the Environmental Physician in 2 weeks. If this visit doesn't offer any insight, we will keep trying. We are in Georgia and are willing to go anywhere to find help for our little guy.

 

Thank you!

tlk

[Chemar]

Hi and welcome

 

sorry I havent replied before but I am under a new work schedule for my business and so have had less time to spend here replying, although I do read all messages

 

As you are in Georgia, and if needed, there is a PANDAS expert in Gainesville Florida, Dr Tanya Murphy at the Shands Clinic

http://mdc.mbi.ufl.edu/murphy.htm

 

As many of our parents of PANDAS children have reported, prophylactic use of azithromycin seems to be an antibiotic with the best track record re PANDAS

 

I will try to post more again later

[tlkinser]

Hi all, I have been reading posts here since last April after my son exploded with tics. After many dr visits (pediatrician, ER, 2 neurologists, cardiologist), it was found that his ASO level was over 600 and he was dx with PANDAS. His levels have since gone down to normal, yet his tics are worse then ever. At this point, he is rarely tic free for even a minute unless he is sleeping or we are in the company of others and he is holding it in as best he can. He was dx with Synd. Chorea by one of the neurologists, PANDAS by the pediatrician, tic disorder by the ER, and TS by the other neuro. I have been told to wait and see and come back when/if I decide to medicate him. In our opinion, this is not an option as he's only 5 (just turned 5 this summer) and I can't take a risk with any of the side effects. We have just been so overwhelmed and confused by everything these past 4 months. I feel like I'm either sick to my stomach or crying all day long as I watch him tic. It is heartbreaking as you all know. I just can't believe that in such a short time, my son has become a different person. We can hardly go anywhere in public right now. I am just so sad for him and for our family.

 

We are currently doing the Feingold Diet and just when I think I see some improvement, he starts ticcing like crazy again. Today, I decided to cut out milk and dairy for the next 4 days to see if that helps. I have read/am reading some of the books listed here: Doris Rapp, "Is This Your Child", Jacquelyn McCandless, "Children With Starving Brains"; Jane Hersey, "Why Can't My Child Behave?" and also Sheila Rogers' book that I ordered from this site. They are all wonderful resources and I've learned so much. I am just trying to implement all of the info into helping my son. We took him to an allergist last week and the scratch test only showed an allergy to dust mites, mold and egg (sensitivity). We have covered all of the beds and pillows with cotton allergen-free covers, are in the process of getting the home tested for mold, and I've removed egg from his diet.

 

We have an appt with an environmental physician in 2 weeks and I am wondering if I'll make that long at the rate we're going. Until then, I am reading everything I can (feels like I'm on the computer all day long) and taking notes so that I am prepared for our appt. Thank you for reading this far and THANK YOU for all of the info you've offered in past posts!

 

tlk

 

Hi,

 

My son is five too. I have been dealing wih his mild tics ,OCD, and ADHD during strep episodes since he was fifteen months old. Hopefully your son's tics will come and go as my sons have. I don't know if you've seen any correlation to illness, shots etc. but try and document as much as possible on the course of his tics, Dr.s you see, meds etc. It will help you in the long run when you see any new Dr. I have read all the books you've mentioned too. I am also in the process of trying the GFCF diet with my son. It is not easy to do because they get upset at not getting foods they like and are used to. It will be worth it if we can find them some relief from their problems. Does your son have any behavior troubles or OCD with the tic episodes? We are going the Biomedical route now too. Even though they are young, five I think trying the medicines now is better then the long term damage that may come from the basal ganglia part of the brain being destroyed by the strep autoimmune reaction. Keep reading and praying for a cure to this terrible disease. I am giving my son several supplements and antibiotics right now. Have you watched the HBO documentary on Tourettes? I just finished it and feel so much compasion for the kids who have this. Try to find a Dr. that knows about treating PANDAS. Try Dr. Murphy at the Shands clinic in Florida. I am on a waiting list right now. There has to be a way to get our boys help. Keep up the good fight. God bless. Thanks for sharing your story.

Michele

 

Hi Michele, thank you for your reply. I'm sorry to hear that your 5 year old son is also struggling with this. We have not seen any signs of OCD yet (won't be surprised if it shows up though), but I definitely see behavioral issues. Sometimes, it's as if he has no control over his actions. I have been giving him Kids Calm as well as a multi-vitamin. I haven't added any other supplements because it's all so overwhelming. I don't want to add anything else to his system that may make things worse. I'm just waiting for our appt in 2 weeks and am crossing my fingers that she'll be able to run all of these tests to see where he may be overloaded and/or deficient.

 

I am interested in the Shands Clinic. Did you have to have a referral to get in there or can anyone just call for an appt? My son was dx PANDAS by our pediatrician but then dx TS by the neurologist. He doesn't test positive for strep anymore but still tics more than ever. I wonder if they'd see us there?

 

I agree that there has to be an answer. I don't think that medication is the answer for us; something is going on inside my little boy's body. 5 months ago he was able to sit still and eat a meal and now it's like watching a baby eat. Food everywhere, uncontrollable tics, etc. It's the craziest thing! Thank you for your reply and best wishes to you and your little guy.

tlk

[itsme]

Hi tlkinser,

 

Some things that have helped me and my kids alot are "Bontech" vitamins and changing our diet - that is, not eating ANYTHING that has artificial anything in it. Our environmental dr. has helped us with the diet and supplementation (other than Bontech vits). Our son was ticcing alot 5 months ago, and now is ticcing very minimally. I to have been ticcing moderately for 30 yrs. and now the tics are decreased about 60% and i beleive (hope) we will improve even more in the comming months.

 

If you have any other questions, please don't hesitate to ask.

[faith]

Hi tlk,

I forgot to ask earlier, and was wondering, has your son recently had any vaccinations? I think there is one that kids get before entering kindergarten, do you know when the last one was? Just curious since your son's symptoms sound like they were brought on or at least aggravated by something. It is something we have discussed here on the forum at times where some parents have felt that vaccines have had something to do with bringing out more pronounced ticcing. Just a thought.

 

Also, when you said your son started change when introduced to solids or baby foods, it makes me think he may have some severe sensitivity to some foods. Have you investigated that route yet? We had done the elimination diet with a DAN doctor and didn't see any real results, but then I decided to do the Igg food sensitivity test just to get some direction (it is not always 100% accurate but I needed something). We found corn, yeast and flax to be his high sensitivities, and I had been giving him flaxoil everyday for some time. So when we eliminated those, we did see an improvement (although I am still dealing with a vocal). But, my point being maybe you should investigate that test, I think it might shed some light. We used a test called Alcat that our naturo did for us. You could do a search and read on it.

 

I'm not clear of any of the doctors you saw was a DAN doctor but they also do all the biomedical testing, so if you could find one, they could do alot of the testing.

 

God Bless

Faith

[tlkinser]

Hi tlk,

I forgot to ask earlier, and was wondering, has your son recently had any vaccinations? I think there is one that kids get before entering kindergarten, do you know when the last one was? Just curious since your son's symptoms sound like they were brought on or at least aggravated by something. It is something we have discussed here on the forum at times where some parents have felt that vaccines have had something to do with bringing out more pronounced ticcing. Just a thought.

 

Also, when you said your son started change when introduced to solids or baby foods, it makes me think he may have some severe sensitivity to some foods. Have you investigated that route yet? We had done the elimination diet with a DAN doctor and didn't see any real results, but then I decided to do the Igg food sensitivity test just to get some direction (it is not always 100% accurate but I needed something). We found corn, yeast and flax to be his high sensitivities, and I had been giving him flaxoil everyday for some time. So when we eliminated those, we did see an improvement (although I am still dealing with a vocal). But, my point being maybe you should investigate that test, I think it might shed some light. We used a test called Alcat that our naturo did for us. You could do a search and read on it.

 

I'm not clear of any of the doctors you saw was a DAN doctor but they also do all the biomedical testing, so if you could find one, they could do alot of the testing.

 

God Bless

Faith

 

Hi Faith,

No, my son has not had any recent vaccinations. I thought about that last spring when he exploded with the tics. He had a series of shots last summer when he turned 4, and I think he had the flu vaccine this winter, but nothing immediately prior to the ticcing. As for the food sensitivites, we took him to an allergist last week which really didn't help. Before the testing, she was "sure" that something was up because she immediately noticed the red rims around his eyes and the dark coloring under them; however, he only reacted to the mold, dust mites, and a slight reaction to eggs. I have read somewhere that sometimes those skin prick tests don't pick up food allergies that affect the brain. (??) I am scheduled to see an Environmental Dr after Labor Day. I'm not sure if she's a DAN dr, but I think she will be open to the tests that you talked about as well as the many others I've read about here. I saw a video clip of her online discussing her son's ADD diagnosis and how she transitioned from traditional medicine to environmental after trying to heal the cause of the ADD rather than the symptoms. I'm hoping that she's willing to do the testing that I am going to ask for. My son is ticcing every second right now, like he has the hiccups. It's crazy- I just can't understand how his body could change so much in such a short period of time. I can't imagine him living with this for the rest of his life... bad days=ticcing constantaly, and good days=waiting for it to show up again and wondering how bad it's going to get.

 

Thank you for your input. I am taking notes on everything I read so that I will be prepared in 2 weeks. I just appreciate this site and all of this information so much. If I hadn't have found it, I'm sure my son would be on medication right now. :-(

 

tlk