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Update on ds7...my little Sweet Cheeks...


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I wrote on this site a while back to share my story about my ds7 with you. Just to let you know, I used the name Sweet Cheeks' Mom, because I call him Sweet Cheeks, and thought that worked as a great handle, not because I think that I am a sweet cheeks or anything like that. (How do I put a happy face on this thing?)

 

Anyways... I had a very very very very hard time getting antibiotics prescribed for him. Did I say "very" enough times? I went to many many many doctors, and I heard variations of the same message: pandas is controversial or it is a fad. Bottom line, people here in Mississauga Ontario do not believe in it. There do not seem to be any pandas friendly doctors around here. His pediatrician said that the main children's teaching hospital in Toronto is interested in the topic. However, when I look on their website, they do not mention any pandas research, or anything to do with pandas.

 

I was able to finally get a script of the liquid azithromycin from his pediatrician for my ds7 at 7.5 ml which someone on this site calculated it to be approx 300 mg. He weighs approx 50 pounds or approx 25 kg. I called her office and asked her secretary to please have the doctor call in a prescription for azithromycin. This is two weeks after she said that she didn't believe in pandas. This was after two weeks of going from doctor to doctor, walk in clinic to walk in clinic, and to the local children's hospital clinic. I felt helpless, yet hopeful that I would help my son.

 

Then after getting that script, I got creative with the walk in clinic, and was able to get a second prescription for him. The doctor at the walk in clinic said that he didn't believe my son had strep right now, but said that he would prescribe it.

 

Then I used the remaining dose to reduced my ds7's dose, and went to the pediatirican. I found that day 11 was the magical day for ds7. He was tic free. The anxiety had decreased. Even my dh noticed! He said, yes, the medicine seems to be working! I said that it was magical, but not perfect. There were some days that ds7 would wake up in a strange mood though. For example, on day 12, he woke up screaming at me saying that I was staring at his eye, and he couldn't open his eye. It was very strange. Then, after about 4 minutes, it passed after I convinced him that I was not staring at his eye. Could this be the "die off" that people talk about? That is when my dh said, maybe we should take him off the medication! Anyways...the rest of the day was great! He didn't freak out about stuff.

 

I took him to the pediatrician on day 12, I believe it was, to demonstrate to her how much he had changed. He wasn't afraid of elevators, he didn't have those shoulder shrug tics, although he was still doing the huh sound with his mouth closed every so often. He even looked healthier. Another interesting thing happened after two 5 day courses of taking the azithromycin: my ds7 no longer had chest pains on his right side that he has been complaining about for the past 3 months, and no longer had this lingering cough that has had for the past 2 years it seems. He had been diagnosed pneumonia two times in his life when he was much younger, but only after x-rays confirmed the pnemonia. Both times, his pediatrician said that he seemed fine, but ordered a chest x-ray, and it was confirmed that he had pneumonia. (This pediatrician used to take x-rays for everything before, so much so, that I was concerned about the number of x-rays he had taken by the time he was 3 years old.) Anyways, I often asked her about his lingering nasal congestion and cough, and she dismissed it as allergies. I have posted before about this pediatrician and her views on sinus issues in children. I had often asked her whether or not he could have had sinus problems, because I was having them, and each time, she said that it wasn't possible because children's sinuses are too small. Well...anyways...so he no longer had this lingering cough and the recent chest pain. She dismissed it as a possible tic, which I question considering that it suddenly stopped after the two courses of high dose azithromycin (it was dosed for strep, which is higher than for pneumonia, and then I gave him one extra week of a low dose of azithromycin which was the leftover that I had, which happened to be the dosage for eradicating pnemonia).

 

I suspect that he had mycoplasma---walking pneumonia---for a few years. Can I confirm it, no. If I get him tested for mycoplasma after it has been eradicated, will he have titers that show up somewhere?

 

Anyways...so just before going to the pediatrician's office, I took a stroll around the mall close to the doctors office, which is not typical for me. Out of joy for the fact that 1) I was able to get him azithromycin, and 2) that he had considerably improved, I decided to give in, and buy one of those gumballs that come out of the machines. Unbelievable...he started the shoulder shrugging. Mind you, it wasn't as constant as before, but it was there. When the sudden thing happened, it was every 6 seconds. After the gumball incident, it was 1 per minute. Well...the pediatrician said that she still didn't believe in pandas, explaining that in her hospital they don't see any pandas cases. I suggested that the doctors need to ask the right questions, such as inquiring about illnesses prior to such episodes, particularly sore throats. She dismissed it by saying that sore throats are a childhood norm. She added that my ds7 still had shoulder shrugs, albeit considerably lessened, thus, she would not prescribe another course of azithromycin. She added that she had never given kids more than two courses of it (10 days). I made the mistake of telling her that I was able to get an additional week's worth from a walk in clinic doctor, but I didn't explain what I told the doctor to be able to get the additional weeks worth of it. Oh well...that was it. She would not prescribe it again. She was very clear that pandas is controversial. She put him on a referral list to see a doctor at Sick Kids Hospital in the Movement Disorders clinic. We still have not received info about when this will take place, likely in a few months. His pediatrician said that she did not want me to be my ds7 physician.

 

So, that is it. Dr. K wrote to me requesting for the blood work. I will fax over the blood work to him. Will he be able to work with me while I am in Canada, and he is in the US?

 

My ds7 is back to many of the behaviours that he presented with or was experiencing before the azithromycin, although he is no longer totally freaked out about elevators. He has these shoulder shrugs that can be often and less often depending on the time of day, what he eats, whether he feels anxious or sad, whether he has a lot of sugar, and it seems that wheat and dairy are issues. He still wants me around though, and he doesn't want to go to any games without me. If you recall from my original post about my ds7, I had him overprogrammed in many programs, and I really set the bar high for him before. Now...I have been taking it easy with him. He loves soccer, so he is enrolled in a team soccer league, and also plays soccer at a field with the local kids. He wants me to be around. I asked him if he wanted me to put him into any tennis or something else this year, and he said that he didn't, and he certainly didn't want me not to be around. So, I play tennis with him, soccer at home, floor hockey at home with him, and lots of board games. Of course, I read him all those interesting mystery novels that he loves so much.

 

I feel a little helpless. I was feeling really hopeful at one point. I loved that when he was sick, some of you wrote back to explain that they regress a bit when that happens, so it allowed me to understand what was going on. I appreciate all of the feedback and knowledge that I have gotten from this forum.

 

I have been reading a bit, and noticed that the doctor who co-wrote the book with Jenny McCathy talks a bit about pandas. He said that he believes that kids should be on anti-fungals at the same time. Thoughts on this? Are your children on anti-fungals?

 

What do you all suggest that I do? Yes, I was creative in getting him azithromycin one time from a doctor in a walk in clinic. I might be able to keep it up using a different strategy with a different doctor. I would, however, prefer to have the support of a doctor who knows more about medicine than I do.

 

I feel like one of the parents from Lorenzo's Oil, trying to learn everything I can about this stuff.

 

Thanks for letting me vent. Any suggestions are appreciated.

 

Plus...my ds7 also moved around a lot more in his sleep while on azithromycin. I don't know if this is common for other children. I also found him to be a lot more active then usual, and wondered about it being a side effect of azithromycin. It was listed as a side effect on some web site. DS7 does not have ADHD, so the burst of energy was interesting, particularly at night with all of his thrashing around the bed. Has anyone's child also done this thrashing around in bed thing while on azith?

 

I am editing this post because when I originally wrote it, my dh wanted me to get our ds7 ready for bed after his late soccer game, and wanted me off the computer...like now... Hmmmm...nobody's life is perfect.

 

I have been reading a lot of stuff which I will eventually post on this site when I figure out how to do it. It sounds like some doctors are trying to make the links to figure it all out, and other doctors are disputing the whole pandas idea based on clinical trials which do not take into account the parent(s)' lived experience with this whole thing. The perspective of a child's parents are critical, because they have witnessed changes in their child(ren) during or immediately following an illness. Such informatio is relevant. Yet some researchers and doctors fail to address this qualitative piece, citing only studies that compared children with strep with matched controls. They fail to see that not all children who develop strep end up presenting with these sudden changes. Plus, they take Swedo's criteria for pandas, and note that children have to present with ALL of the symptoms that she lists. That is also problematic. We know that even in medicine, a child can have something like pneumonia without the fever, although fever that will not go down is one symptom, plus pain in the chest or abdominal area. Similarly, not all children who had strep and suddenly present with "different" behaviours, will present with every single behavioural characteristic listed by Swedo. I believe that her work was a work in progress that needs some fine tuning to explain that children do not need to present with all of the symptoms in order to have pandas. Researchers (doctors) who are critiquing pandas appear to go down a check list and then dismiss the notion of pandas when children don't present with all of the symptoms, it seems. Furthermore, I notice that some researchers who question the existence of pandas cite the fact that children in the US community setting did not test positively for strep. We know that children could have had a prior infection, and then months later or years later the parents make the connection re: strep and the behaviour. Or perhaps parents made the connection right away, which is what I believe, but doctors never proposed pandas as a possibility to the parents, because some doctors don't believe it exists.

 

Anyways...that's all. Just some thoughts on the subject.

 

I pray that all of our children are healed. I want to see pandas prevented, and the only way to prevent it, is to ensure that doctors are vigilant about strep tests, and they believe that pandas is real.

Edited by Sweet Cheeks Mom
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It is good to hear from you - I wondered how Sweet Cheeks was doing! Glad to hear that he showed some improvement with zith. Your questions about mycoplasma really stress the importance of getting a good baseline assessment to work off of. If you test for mycoplasma now you should still see some elevation in the IGg (which shows old infections), and you may still see some IGM elevation (shows recent / current infections). If you do repeat tests a few weeks later you can see if the titers are rising or falling.

 

It is also very important that you do a full immune status panel - I cannot recall if you did that before, but I recall your son had some sinus issues, so it is important to see if he has Strep Pneumoniae antibodies to help fight off common sinusitis.

 

Did you do strep titers before starting Antibiotiics? If you did you will have good baseline, but either way you should have repeat titers drawn to compare and see if the numbers are going up or going down.

 

It is good that you are connecting with a PANDAS doc. I have heard that there are som docs at Hospital for sick Children seeing PANDAS cases, but I do not think they see many. Regarding your pediatrician not believing in PANDAS - you are in the same boat as many others. Many people on this forum use DAN! (Defeat Autism Now!) doctors for their children with PANDAS as DAN doctors tend to be wholistic and understand the effect of the immune system on the nervous system. I found this list of DAN doctors and there are some in Ontario, but I do not know if this is the best DAN list - perhaps someone else has a suggestion for a DAN doc

http://www.autismwebsite.com/practitioners/foreign_lc.htm

 

I hope you are enjoying your time with Sweet Cheeks - it sounds like you are having some precious moments with your dear son and that is a gift, indeed.

 

Take care and keep us posted on your progress!

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Hi Kimballot! Thanks for the reply and suggestions. From the site that you gave me, there is a MD doctor that I can connect with who does traditional and complementary medicine. In Canada, only doctors with MD beside their names can prescribe antibiotics; NDs cannot. I don't know if it is the same in the U.S. Plus, our medical system fully pays for any service provided by any MD, whereas some private insurance companies cover alternative/complementary medicine like NDs, chiros, massage therapists, accupuncturists etc. The Ontario Health system fully pays for any service and up to any amount that a MD provides, whereas a work (private) insurance will cover alternative stuff up to a certain point, depending on one's insurance.

 

I no longer know how to access my ACN e-mail. I'm not sure if you were the person who wrote to me, welcoming me to the board, and inviting me to contact you if I had any questions. Was that you, or someone else?

 

We went to St. Catherines and Niagra Falls for a few days this week, including Marineland. Although I had fun, and my ds7 had a lot of fun, I felt so helpless and saddened by the fact that I had hit a brick wall with doctors. I used to think that the Canadian health care system was really great, up until now. I realize that there are so many progressive doctors in the U.S. Maybe I am wrong, but it seems that Canada waits for the U.S. to lead the way regarding medical advances, and then Canada follows much later. Plus, it seems that in the US you can directly meet with specialists, whereas here in Canada, we need to go to our primary care physician first, request a specialist, and the primary care physician can make the referral directly, and wait times are huge, or can pause everything by running tests first, in order to determine whether or not the tests warrant a referral to the specialist. A friend who lived in New York before she married a Canadian said that she had this extra health insurance that she paid out of pocket, which gave her the freedom to go anywhere and see anyone she wanted within the medical field. She found it odd that in Canada, we have to go through our family doctor (or pediatrician) first. Hmmmm... I guess that the movie Sicko didn't explain the whole story.

 

You know, while on our little trip away, I noticed that there are a number of things that trigger things in him, such as the smell of chlorine. We went to check out a pool in one of the hotels we stayed in, and then went to the workout room right beside the pool. The workout room smelled like chlorine. Well....my ds7 had his shoulder shrugs come back a lot and often. He had Nestea iced tea, and the shoulder shrug tics increased.

 

Thanks again. I will look into this person listed on the DAN doctors site.

 

I really like the stuff that I read that was written by or about the doctor who helped Jenny McCarthy's son. He believes that in the case of Pandas, the child needs to be on antibiotics for 5-6 weeks in combination with antifungals. I don't have the citation for that statement. He seemed very sensitive, and very knowledgeable about and sensitive to the following: inflammation, immune system issues, autoimmune system issues, strep, toxicity, and looking for the underlying cause and dealing with that.

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Hi! Sorry, but I am a little hesitant about obtaining abx from a different country and having them delivered. I have heard some horror stories about fake pills coming to people's homes via the mail, often with some scary ingredients in them. Plus...I need a prescription. If doctors would prescribe the abx, I would have no problems purchasing them here. My main issue is finding some MD who is sensitive to this issue, and is willing to work with me to explore it further. Kimballot has provided me with some suggestions. There appears to be one doctor in Markham Ontario who is a MD. I'll have to see when he is able to meet with me and my ds7.

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Oh yah...thanks for the suggestions about requesting testing done. No, my ds7 has not done any of those. He only did the strep test and antibody test, and a cbc.

 

I don't know for sure that he had sinus infections, I was just putting it out there because he was always stuffed up, and had a constant cough. Now I wonder if the azith fixed that all up, because he no longer has either of those two issues.

 

Question: when children's teeth fall out, does that impact on them in terms of their anxiety and tics?

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Hi- to get to your email click on the little triangle next to your name at the top and then choose "messenger".

 

I think the DAN doc will be able to help you with antifungals. Many of our children use antifungals (mine included) in addition to antibiotics and most use probiotics (acidophulus, bifidus, etc) while using antibiotics and even after antibiotics end (if your child stops ABX).

 

The US health care system does have more specialists than other healthcare systems, but the distribution of services is very uneven. I think most folks on this forum have spent quite a bit of money out of pocket for consults and medications that were not covered by insurance... and many on this forum have paid upwards of $10,000-15,000 for IVIG that was not covered (that is for a single administration).

 

I had an interesting conversation with a friend who works in a school in South Carolina tonight. She is in a very rural area and has a child in her class that she is certain has PANDAS. The parents are not well educated and have limited insurance.... there are no doctors locally to evaluate it or treat it... and if she recommends that they see a PANDAS specialist the chances of the parents being able to negotiate the system to get the care is very limited.

 

So you see... no one has a good system. We are all doing the best with what we have and whenever possible we are trying to increase awareness, spread the word, and support research to move this condition forward to a formal disease with set diagnostic criteria, sub categories, and treatment protocols.

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Did he have a tooth recently fall out? That could be part of the problem. It seems to be a big problem around here. My son had 2 teeth fall out a couple of months ago and have had a huge increase in tics and night time anxiety. We are still trying to get things back to stable.

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Did he have a tooth recently fall out? That could be part of the problem. It seems to be a big problem around here. My son had 2 teeth fall out a couple of months ago and have had a huge increase in tics and night time anxiety. We are still trying to get things back to stable.

 

Yes, his tooth fell out on Sunday night. Would that explain the tics beforehand as well?

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Did he have a tooth recently fall out? That could be part of the problem. It seems to be a big problem around here. My son had 2 teeth fall out a couple of months ago and have had a huge increase in tics and night time anxiety. We are still trying to get things back to stable.

 

Yes, his tooth fell out on Sunday night. Would that explain the tics beforehand as well?

I think it could. We've gotten the worst exacerbations around teething and dental work.

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Wow...I had no idea that those procedures cost so much money! Wow! I had no idea that people have been paying that kind of money for each procedure. It really should be free. That partly explains why Canadian doctors are questioning whether or not pandas is real...the government is not on board with the research, because it would then have to pay for the medical services.

 

You are right, we are all doing the best we can, given the system that we have to work with in our respective country. Thanks for the eye opener.

 

About the child in the school...perhaps your friend can ask the parents when they noticed changes in their child etc etc. Perhaps he can start with abx. Would the consult with the doctor about abx be covered under any plans? How does it work in the U.S? If someone from one state wants to consult with a doctor from another state, does their private insurance cover that, or does it depend on the coverage? I'm wondering if these parents could talk to Dr. K or some other doctor, and have that doctor consult with someone in their town or state to get the ball rolling as far as abx are concerned.

 

Is there a school social worker in that school who can advocate for the family? I know that things are different in Ontario, compared to some states re: salaries for school personnnel. I was shocked to see how little some social workers make in Washington! I was shocked to see how little teachers make in some states. But...I'm sure the same is true in Canada; I would likely be shocked to see how different the salaries are between provinces. Anyways...what I am trying to get at, is if there is a school social worker---I don't know if schools in that state hire school social workers or not---have her or him advocate for this family. Perhaps she can see if they can raise funds to help this family, or perhaps there are some special funds set aside for children whose families do not have a lot of money, and this can be a starting point to getting the family connected with a doctor. I don't know? Perhaps your friend can be the advocate. I know, you mentioned that the family is not well educated and have limited insurance, plus there are limited services available.

 

There is sadness everywhere! When our hands are tied for any reason, there is some sort of injustice happening. That family has limited means and limited access. Those of us in Canada have doctors who question whether or not pandas exists. Wait until I see the DAN MD, and I may be able to report differently to you on Canadian doctors.

 

Thanks for the insight. Always a pleasure to learn new things. Thanks for your persistence as well. I appreciate it.

 

 

 

 

 

Hi- to get to your email click on the little triangle next to your name at the top and then choose "messenger".

 

I think the DAN doc will be able to help you with antifungals. Many of our children use antifungals (mine included) in addition to antibiotics and most use probiotics (acidophulus, bifidus, etc) while using antibiotics and even after antibiotics end (if your child stops ABX).

 

The US health care system does have more specialists than other healthcare systems, but the distribution of services is very uneven. I think most folks on this forum have spent quite a bit of money out of pocket for consults and medications that were not covered by insurance... and many on this forum have paid upwards of $10,000-15,000 for IVIG that was not covered (that is for a single administration).

 

I had an interesting conversation with a friend who works in a school in South Carolina tonight. She is in a very rural area and has a child in her class that she is certain has PANDAS. The parents are not well educated and have limited insurance.... there are no doctors locally to evaluate it or treat it... and if she recommends that they see a PANDAS specialist the chances of the parents being able to negotiate the system to get the care is very limited.

 

So you see... no one has a good system. We are all doing the best with what we have and whenever possible we are trying to increase awareness, spread the word, and support research to move this condition forward to a formal disease with set diagnostic criteria, sub categories, and treatment protocols.

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Wow...I had no idea that those procedures cost so much money! Wow! I had no idea that people have been paying that kind of money for each procedure. It really should be free. That partly explains why Canadian doctors are questioning whether or not pandas is real...the government is not on board with the research, because it would then have to pay for the medical services.

 

You are right, we are all doing the best we can, given the system that we have to work with in our respective country. Thanks for the eye opener.

 

About the child in the school...perhaps your friend can ask the parents when they noticed changes in their child etc etc. Perhaps he can start with abx. Would the consult with the doctor about abx be covered under any plans? How does it work in the U.S? If someone from one state wants to consult with a doctor from another state, does their private insurance cover that, or does it depend on the coverage? I'm wondering if these parents could talk to Dr. K or some other doctor, and have that doctor consult with someone in their town or state to get the ball rolling as far as abx are concerned.

 

Is there a school social worker in that school who can advocate for the family? I know that things are different in Ontario, compared to some states re: salaries for school personnnel. I was shocked to see how little some social workers make in Washington! I was shocked to see how little teachers make in some states. But...I'm sure the same is true in Canada; I would likely be shocked to see how different the salaries are between provinces. Anyways...what I am trying to get at, is if there is a school social worker---I don't know if schools in that state hire school social workers or not---have her or him advocate for this family. Perhaps she can see if they can raise funds to help this family, or perhaps there are some special funds set aside for children whose families do not have a lot of money, and this can be a starting point to getting the family connected with a doctor. I don't know? Perhaps your friend can be the advocate. I know, you mentioned that the family is not well educated and have limited insurance, plus there are limited services available.

 

There is sadness everywhere! When our hands are tied for any reason, there is some sort of injustice happening. That family has limited means and limited access. Those of us in Canada have doctors who question whether or not pandas exists. Wait until I see the DAN MD, and I may be able to report differently to you on Canadian doctors.

 

Thanks for the insight. Always a pleasure to learn new things. Thanks for your persistence as well. I appreciate it.

 

 

I think when it comes to PANDAS the US and Canada are pretty similar. Most docs in the US do not give out PANDAS diagnoses easily, and often tell families that it does not matter if it is PANDAS or not, they will treat the tics or OCD or ADHD, but they do not try to address the underlying infection. That is why we flock to PANDAS docs, often paying out of pocket.

 

I hope you understand when I mentioned the cost of IVIG I was not trying to say that everyone on this forum pays that much money to have IVIG... I, personally, have not. However, I think you can understand why people are so frantic about getting insurance coverage whenever possible and why it is such a big decision to do IVIG- especially when paying out of pocket. You can imagine the stress of having a child who is in crisis, deciding about doing a procedure that has few published studies to back it up but lots of unpublished reports of it helping, while going against the wishes of a pediatrician you have trusted from the birth of your child, fighting to get insurance coverage and dealing with denials, and then having to take out a second mortgage on your home or borrowing the money to pay for the procedure. The strength of the people on this forum amazes and inspires me, and makes me want to fight even harder for PANDAS to become a recognized diagnosis that will be covered by insurance.

 

In the meantime, we all have to keep fighting for our children... and you need to get Sweet Cheeks taken care of. You had good information on the tooth falling out... I hope that was the trigger and I hope it resolves quickly with antibiotics.

 

If a US doctor writes a script for antibiotics, can you fill it in Canada, or do you have to come to the US? Also - FYI - pharmacies in New York State fill out of state prescriptions, so you should be able to cross the border and get a prescription filled from a US PANDAS doc if you need to, and it should not be too expensive if you can get the generic version of the drug.

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[

If a US doctor writes a script for antibiotics, can you fill it in Canada, or do you have to come to the US? Also - FYI - pharmacies in New York State fill out of state prescriptions, so you should be able to cross the border and get a prescription filled from a US PANDAS doc if you need to, and it should not be too expensive if you can get the generic version of the drug.

 

I don't know how that all works. I assume that if a U.S. doctor writes a script that I can use it. I will have to check with the pharmacy. We pay for our presciptions, unless we have health care plans from work that pay 85% of the prescriptions or whatever percentage. That is definitely one way to go about it. Thanks. I can always consult with a pandas doctor over the phone, and then get prescriptions for my son that way. Perhaps it has to go through some doctor here. I will see.

'

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