PANDAS

[amy51]

Hi

 

we live in Surrey, UK.

This week we have been advised that our 4 year old son has PANDAS. This is following a positive blood test result for anti-basal ganglia anti bodies. Our son has experienced severe gross motor tics daily for the pasy year, averaging approx 20 episodes during each day. He has been on a daily low dose anti biotic for the past 2 years as he has recurring ear and chest infections.

During his four years he has suffered much ill health with bouts of pneumonia. For the past 6 months he has also suffered from large boils on his lower body. He is also very anxious at bedtime but happy and confident during the rest of the day.

My husband and I are worried sick and would appreciate any help or advice, especailly any recommendations of specialists in the UK. The blood tests were carried out at UCL hospital and we wonder if anyone knows of anyone there or at Great Ormond Street Hospital?

Thank you for reading this.

Amy

[CSP]

amy,

 

I live in the U.S.A. but wanted to welcome you.

 

There is a lot of info on PANDAS here, and I think you could ask question over the internet to the really good PANDAS Drs here in America. That info might help you when you do fine a Dr. in your area.

 

I wish you much luck,

C.P.

[michele]

Hi. Amy. I am in the US but my son also has PANDAS and has dealt with the immune/neurological issues over the course of five years and he is only six! We see a wonderful neurologist at Cleveland Clinic names Erenberg. He has come highly recommended by Dr's over the country. When you say 20 episodes a day. I am confused to what you mean. My son also has had severe delays in fine and gross motor over the past few years. We are doing twice a week OT and he is getting stronger. If you have any questions you can PM me. I have been there and felt very helpless many times. Know that building the immune system can help. We have used monolaurin. Also omega three fish oils help with repairing the basal ganglia. Another thing I think helped my son is Nystatin to cleanse his system of toxins. He had a high level of metals built up from immunizations and chemicals that he was not eliminating. We cleaned up his diet did Gf for four months and cut out preservatives and additives. He does not eat artificial colors especially red dyes. Also I began him on amino acids. Has your son experienced emotional trouble or attention issues? That was a major issue for mine. He is so much easier now it is like we are looking at a new kid. I am holding my breath and praying his symptoms are not just waning right now. You are in the right place. Read alot and ask questions. There are more PANDAS parents here then any other forum I found!

 

Michele

Hi

 

we live in Surrey, UK.

This week we have been advised that our 4 year old son has PANDAS. This is following a positive blood test result for anti-basal ganglia anti bodies. Our son has experienced severe gross motor tics daily for the pasy year, averaging approx 20 episodes during each day. He has been on a daily low dose anti biotic for the past 2 years as he has recurring ear and chest infections.

During his four years he has suffered much ill health with bouts of pneumonia. For the past 6 months he has also suffered from large boils on his lower body. He is also very anxious at bedtime but happy and confident during the rest of the day.

My husband and I are worried sick and would appreciate any help or advice, especailly any recommendations of specialists in the UK. The blood tests were carried out at UCL hospital and we wonder if anyone knows of anyone there or at Great Ormond Street Hospital?

Thank you for reading this.

Amy

[Hannah C]

Hi Amy,

We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity.

I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful.

There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you.

I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask.

bws

Hannah.

[amy51]

Hi Amy,

We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity.

I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful.

There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you.

I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask.

bws

Hannah.

 

 

Thank you so much for replying. I will send you a longer email, with lots of questions over the weekend!!

Amy

[amy51]

Hi. Amy. I am in the US but my son also has PANDAS and has dealt with the immune/neurological issues over the course of five years and he is only six! We see a wonderful neurologist at Cleveland Clinic names Erenberg. He has come highly recommended by Dr's over the country. When you say 20 episodes a day. I am confused to what you mean. My son also has had severe delays in fine and gross motor over the past few years. We are doing twice a week OT and he is getting stronger. If you have any questions you can PM me. I have been there and felt very helpless many times. Know that building the immune system can help. We have used monolaurin. Also omega three fish oils help with repairing the basal ganglia. Another thing I think helped my son is Nystatin to cleanse his system of toxins. He had a high level of metals built up from immunizations and chemicals that he was not eliminating. We cleaned up his diet did Gf for four months and cut out preservatives and additives. He does not eat artificial colors especially red dyes. Also I began him on amino acids. Has your son experienced emotional trouble or attention issues? That was a major issue for mine. He is so much easier now it is like we are looking at a new kid. I am holding my breath and praying his symptoms are not just waning right now. You are in the right place. Read alot and ask questions. There are more PANDAS parents here then any other forum I found!

 

Michele

Hi

 

we live in Surrey, UK.

This week we have been advised that our 4 year old son has PANDAS. This is following a positive blood test result for anti-basal ganglia anti bodies. Our son has experienced severe gross motor tics daily for the pasy year, averaging approx 20 episodes during each day. He has been on a daily low dose anti biotic for the past 2 years as he has recurring ear and chest infections.

During his four years he has suffered much ill health with bouts of pneumonia. For the past 6 months he has also suffered from large boils on his lower body. He is also very anxious at bedtime but happy and confident during the rest of the day.

My husband and I are worried sick and would appreciate any help or advice, especailly any recommendations of specialists in the UK. The blood tests were carried out at UCL hospital and we wonder if anyone knows of anyone there or at Great Ormond Street Hospital?

Thank you for reading this.

Amy

 

Thanks so much for replying. I dont feel so alone!

I have bought some fish oils and am spending hours scanning all these links and posts.

Good luck with your own child.

Amy

[amy51]

Hi Amy,

We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity.

I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful.

There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you.

I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask.

bws

Hannah.

 

 

Hi Hannah,

thank you for letting me pick your brains!

Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided.

Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it.

I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make?

Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family.

I look forward to hearing from you

Have a good weekend

Amy

[Chemar]

We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently.

 

Hi Amy

 

just wanted to mention that SSRIs (aka anti-depressants) do not specifically reduce tics. they are usually given to help control OCD/depression etc. our experience on them (luvox) was horrid!!!! tho I know some have been helped by them

[Hannah C]

Hi Amy,

Our son is 9, his tics appeared when he was six, no one else in the family has them. When they first started it was pretty scary for all of us, he developed a grimace and shoulder movement but quite quickly he began to develop several different tics. Many of them were painful, causing muscle aches some were pretty debilitating, affecting his walking; he was often unable to rest apart from when asleep. They were pretty unrelenting at times. We saw a local paediatrician who was helpful and sympathetic, we stayed in hospital overnight for observation, my son had blood tests

and an MRI which all came back good. We saw a Neurologist and she referred us to G.O.S.H at my request.

 

The doctors we saw at G.O.S.H were helpful in that they made it clear to our son that they saw "lots of children like him”, which helped with why me/am I the only person who has this type of question. I had begun to suspect food and environmental triggers by this time but they really saw no relationship other than to say some people believe that there are 'tic triggers'.

It was disappointing because we were told that if things became worse then drugs were the only option.

 

After a lot of reading and research we changed our sons diet, we cut out wheat and additives amongst other things. We use natural products and organic foods as much as possible. I have found www.fedupwithfoodadditives.com useful.

We use Animal Parade multi vitamins and have been using Flax Oil or Udo's choice Good oil.

We have tried Epsom Salts baths but haven't noticed a change.

At the moment things are going well, his tics are nothing like they were in the first year, they seem to be more prevalent March-November, which may be pollen or heat. It's another avenue to explore.

We try to keep him cool in hot weather and lots of exercise seems to help.

I hope this answers your questions, please ask if there are any more.

Bws

Hannah.

 

 

 

 

 

 

 

Hi Amy,

We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity.

I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful.

There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you.

I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask.

bws

Hannah.

 

 

Hi Hannah,

thank you for letting me pick your brains!

Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided.

Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it.

I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make?

Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family.

I look forward to hearing from you

Have a good weekend

Amy

[amy51]

Hi Amy,

Our son is 9, his tics appeared when he was six, no one else in the family has them. When they first started it was pretty scary for all of us, he developed a grimace and shoulder movement but quite quickly he began to develop several different tics. Many of them were painful, causing muscle aches some were pretty debilitating, affecting his walking; he was often unable to rest apart from when asleep. They were pretty unrelenting at times. We saw a local paediatrician who was helpful and sympathetic, we stayed in hospital overnight for observation, my son had blood tests

and an MRI which all came back good. We saw a Neurologist and she referred us to G.O.S.H at my request.

 

The doctors we saw at G.O.S.H were helpful in that they made it clear to our son that they saw "lots of children like him”, which helped with why me/am I the only person who has this type of question. I had begun to suspect food and environmental triggers by this time but they really saw no relationship other than to say some people believe that there are 'tic triggers'.

It was disappointing because we were told that if things became worse then drugs were the only option.

 

After a lot of reading and research we changed our sons diet, we cut out wheat and additives amongst other things. We use natural products and organic foods as much as possible. I have found www.fedupwithfoodadditives.com useful.

We use Animal Parade multi vitamins and have been using Flax Oil or Udo's choice Good oil.

We have tried Epsom Salts baths but haven't noticed a change.

At the moment things are going well, his tics are nothing like they were in the first year, they seem to be more prevalent March-November, which may be pollen or heat. It's another avenue to explore.

We try to keep him cool in hot weather and lots of exercise seems to help.

I hope this answers your questions, please ask if there are any more.

Bws

Hannah.

 

 

 

 

 

 

 

Hi Amy,

We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity.

I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful.

There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you.

I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask.

bws

Hannah.

 

 

Hi Hannah,

thank you for letting me pick your brains!

Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided.

Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it.

I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make?

Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family.

I look forward to hearing from you

Have a good weekend

Amy

 

 

Hi Hannah

 

thank you so much, you have given me masses to go on.

Have you any concerns regarding your sons academic progress? Does he also suffer from ADHD or anything? Currently our son seems fine, but one of my major concerns is how he/and the teacher will cope with his tics in september when he leaves nursery and starts more structured learning.

I do hope we can keep in touch!

Amy

I would very much like to keep in touch.

[Hannah C]

Hi Amy

We Home Educate, we had always planned to do so. My son has a lot of friends and he can learn at his own pace, it's working very well for us. He is a very happy boy, very interested in the world and full of questions. You could have a look at this website www.education-otherwise.org

So in terms of coping at school I'm not sure, at G.O.S.H they recommend speaking to teachers making arrangements for 'tic breaks'. I have a friend who teaches primary in Birmingham and I know she has taught children who have tics/Tourettes-I can ask her about it, if it would help.

There is also a tourettes website-I know that's not what your dealing with but there may be something useful www.tsa.org.uk

Did you say you were seeing a homeopath? Did you find it helpful?

bws

Hannah.

 

 

 

 

 

 

 

 

Hi Hannah

 

thank you so much, you have given me masses to go on.

Have you any concerns regarding your sons academic progress? Does he also suffer from ADHD or anything? Currently our son seems fine, but one of my major concerns is how he/and the teacher will cope with his tics in september when he leaves nursery and starts more structured learning.

I do hope we can keep in touch!

Amy

I would very much like to keep in touch.

[smokey hill]

Hi Hannah and Amy,

 

we are based in the East of England, our 7 year old son has all the hall marks of Pandas, the snorting, shaking head and recently rolling eyes. Unfortunately we haven't been able to get a firm diagnosis despite seeing several specialists. We also use supplements such as Eskimo Fish Oils but the results have not been at all conclusive. His head movements have become violent at times and recently worsened, with a new eye flinch which is preventing him from getting to sleep at night.

 

I was recently reading on some other posts in this forum people talking about certain triggers to this condition, like strep (he has grommets for his ears) but also triggers through allergies. So taking another posters advice we have tried him on some over the counter "Hayfever and Allergy Relief" Boots own brand tablets, just one a day. Well two days into the course and we have seen a dramatic improvement, something we simply haven't seen before.

 

Its been such a worry for us with little or no medical help to speak of, and he has had this for nearly a year now.

 

It's very early days of course. But if all this means is we have some small control over his involuntary head movements then I am thrilled.

 

Just thought I would share this helpful bit of advice with you. Who knows, maybe it can help some one else too.

 

Smokey

[amy51]

Hi Hannah and Amy,

 

we are based in the East of England, our 7 year old son has all the hall marks of Pandas, the snorting, shaking head and recently rolling eyes. Unfortunately we haven't been able to get a firm diagnosis despite seeing several specialists. We also use supplements such as Eskimo Fish Oils but the results have not been at all conclusive. His head movements have become violent at times and recently worsened, with a new eye flinch which is preventing him from getting to sleep at night.

 

I was recently reading on some other posts in this forum people talking about certain triggers to this condition, like strep (he has grommets for his ears) but also triggers through allergies. So taking another posters advice we have tried him on some over the counter "Hayfever and Allergy Relief" Boots own brand tablets, just one a day. Well two days into the course and we have seen a dramatic improvement, something we simply haven't seen before.

 

Its been such a worry for us with little or no medical help to speak of, and he has had this for nearly a year now.

 

It's very early days of course. But if all this means is we have some small control over his involuntary head movements then I am thrilled.

 

Just thought I would share this helpful bit of advice with you. Who knows, maybe it can help some one else too.

 

Smokey

 

Hi

 

thanks so much for any suggestions, all very much appreciated, i will go to Boots in the morning!

This week has been such a roller coaster, his tics are worse than ever, at times all most constant, he looks so tired and is obviously exhausted. His nursery teachers kindness and concern stresses me even more as i dont know what to say as the PED and OT say they havent come accross anything like it. Ther are still undecided about the next course of action and we wait to hear from Great Ormond Street. Hardly reassuring! My family are either fatigued of the subject or worried sick, depending on who they are, our older children are virually ignored as i am worried sick about their brother. Fortunatley they have endless patience and tolerance. Its fair to say this week i feel i am going mad.

Is anyone elses child as young 4?

Amy