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Char

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Hi,

I my heart is breaking right now and my stomach is in knots. I am sitting here in tears. My son has a bad cold and cough. He keeps snorting every couple of minutes. I am not sure wether it is a tic or not. My hubby thinks he is doing it because he has a cold. Maybe but, I am scared it's a snorting tic. He is on day 5 of the steriods and 250mg Azith a day. Right now he is doing every couple of minutes. He does not seem to have snot in his nose to blow. He has never been this bad before. I am so stressed right now. I keep thinking what if he continues to do this everyday. How could he be in school like this. My nerves are shot as it is, I don't think I can handle much more. Any advice anyone?? I could really use it right now. Char..

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I'm so sorry that you are going through this right now...I wish I had some advice for you...I don't know have any experience with steroids and being sick at the same time...I know this is VERY upsetting for you right now....(hugs)!!!!

 

~Karen

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Dear Char,

 

I am sorry that you and your son is going through this. Do you think that is a high enough dose for your son? Read some of the other posts about the antibiotics, they helped me so much. I am new to this too, even though my son is older (11) we only just got confirmation of the PANDAS.

 

We had started him on Zithromax and he think he might have built up an immunity to it. We switched him to Augmentin, he is big for his age 118 pounds and he was on 600 mg. twice per day. He was still having so many OCD symptoms and some tics. I started posting in the forum and many people wrote me back and said that I should talk to the doctor about a higher dose.

 

I switched him to 1000 mg. 2 times per day which is the "saving sammy' dose and he is shedding OCD symptoms every day. I don't want to give you the wrong impression. We still have a road ahead to his recovery. We are hoping to IVIG in the next few weeks. But, little things are changing... He no longer has to close his bedroom door when he comes down stairs. He has HAD to close it ever since I can remember. He went trick or treating tonight for the first time in many Halloween's. He went outside to play a few times in the last two weeks which he was not able to do. His OCD was very severe. It is still there, but it is getting better every day. He had a setback this week, because he had three teeth pulled and then came down with these huge canker sores in his mouth.

 

Talk to your doc about increasing the Zith or possibly switching to Augmentin. Search those two antibiotics on the forum.

 

Look at "Worried Dad's" posts. His story is amazing. His son had two IVIG's and I think PEX. He was really still struggling with severe OCD and the high dose Augmentin is helping him. He is shedding OCD behaviors overnight.

 

Don't worry, your son will get through this and you will too. I know how hard it is. We hear the slightest sound from them and our hearts sink and think, Oh My God,

is it another tic?

 

My heart goes out to you...

 

Judy...

 

 

Hi,

I my heart is breaking right now and my stomach is in knots. I am sitting here in tears. My son has a bad cold and cough. He keeps snorting every couple of minutes. I am not sure wether it is a tic or not. My hubby thinks he is doing it because he has a cold. Maybe but, I am scared it's a snorting tic. He is on day 5 of the steriods and 250mg Azith a day. Right now he is doing every couple of minutes. He does not seem to have snot in his nose to blow. He has never been this bad before. I am so stressed right now. I keep thinking what if he continues to do this everyday. How could he be in school like this. My nerves are shot as it is, I don't think I can handle much more. Any advice anyone?? I could really use it right now. Char..

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Judy,

Thanks for the kind words, it helps to know other people get what I am going through. This is so hard and stressful for me and my son. I am going to ask my sons doctor to up the Azith and see if that will help. I am glad to hear that your son is doing better. Char..

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Char, I have one more question, I was reading your history of posts. What is your sons CAM Kinase II number? We just got ours back and it showed 165 for my son which they said was above the median score for PANDAS group.

 

Are you thinking about trying IVIG? Did Dr. Lattimer recommend that? I was also wondering what part of Canada you live in West, Mid, East? I feel so bad that the doctors up there won't do IVIG if that is what is recommended... I'm sure you have already thought all this through, but I'm just throwing things out there... If you are on the west side of Canada, would it be possible for you to travel to California? Dr. Gupta at University of Cal. Irvine has pioneered the IVIG treatment from what I have heard. Not for PANDAS but for other illnesses, i.e. Rhuematoid (sp) Arthritis, Multiple Sclerosis. I know of a couple of parents that have had successful IVIG treatments with him.

 

We are planning to see him this coming Wednesday. I am going to beg him for IVIG for my son.

 

I wish that I could travel with my son to see Dr. Kovacovic in Chicago. My son's anxiety is just too high for me to put him on an airplane. Also the travel would be so expensive and I would rather put it towards medical treatment for him.

 

I hope that it is just the cold that is causing a possible new tic for your son. It just seems that these kids can't handle any kind of a hit. Even a cold...

 

Hope you are feeling a little better after different people are writing you back with suggestions and that you are able to sleep.

 

There are not enough bottles in the world to hold the number of tears that a PANDAS Mom cries for her child...

 

Write back when you feel up to it...

Thanks,

 

Judy...

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Char, I am thinking of you. It is so scary to see our children go through this. I hope it goes by quickly and does not get worse. I was having the same thoughts yesterday as my daughter was worse than ever.

 

Hang in there...

 

Susan

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I'm going to give you advice from a cold perspective....

 

Does he have a fever? When my oldest had H1N1, he had a very bad cough that was pretty constant. When my middle osn and myself had it, we had bad congestion.That cough lasted around 2 weeks.

 

If it is caused by a virus, can it be that the mucus is hanging out in the back of his throat and causing the snorting and coughing? Can you give im a decongestant to thin it out? But, then, does his tics get worse w/ a decongestant?

 

Also try a non medicated saline nose spray. that may help.

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I feel your worry and so sorry your son appears to be doing worse. I concur with several others that you need to either up the antibiotic or switch. Unfortunately, the cough clearing of the throat was the first TIC for our son. Is it possible he was recently exposed to something and because of the steroids he doesn't appear ill... suppressing immune response? Are you noticing a flair in any other behaviors? Maybe check ASO or Anti-DNAse-B to see if they are rising and prove possibly exposure.

 

The good news is that the TIC went from coughing/clearing his throat every 15 seconds, to every 2/3 minutes after a month of Azithromycin and has completely disappeared since IVIG treatment.

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My younger son had the snorting tic for quite a long time....it was his dominant tic....he still does it here and there. We weren't sure at first if it it was a cold or not....but, for us, it ended up to be a tic...for sure. Actually, over time we just got used to it, and, if he did it around people, they just thought he was sick and "overcompensating" his sniffing. lol It went away after about 6 months for the most part...actually, after seeing the other behaviors/tics/ocd he has had, the snorting one really wasn't bad.

 

Hang in there...it will ease and/or pass with time.........this is one you can just tell people he is sick....if that is what you want to do.

 

Kelly

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Char,

 

After a round of strep followed by H1N1 we ended up with our first vocal tic which was a throat clearing noise just a couple of weeks ago. I felt so helpless at that point not to mention the constant noise got on my nerves. I knew he couldn't help it but still it grates on me. After it looked like it wasn't going to get better on it's own as he healed from the h1n1 I was prepared to take him in to get titers drawn (which have never been high) and beg for more antibiotics. Instead he came down with another nasty virus. We are still dealing with the virus but got 10 days of a high dose of clindamycin. After day 3 on the antibiotics the vocal tic is almost totally gone. If possible I would up the antibiotics if it won't conflict with the steriods.

 

I totally feel your frustration and despair.

 

Heather

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Char,

if you don't mind, could I just refresh my memory, is this the first time you are doing the steroids? how long is he on it so far and how long is the course supposed to be? what is this supposed to be for? to see if it calms his symptoms? did he have any vocal sounds before? other tics? are any of his symptoms better so far?

 

I do think you have to wait and see. But I must admit, it does kind of discourage me when I hear of these type things. if the steroid is supposed to improve things, then why does something else pop up? those that have gone thru this, could you weigh in? do things get better after that?

 

On another note, re the snorting, what I can tell you is that I'll take the snorting tic any day over what we have over here. my son has had a forced "huh!" type sound for a few years and at the end of the summer turned into a shrilly "EHHHH!" sound. when he does it loud, it can sound like some sort of prehistoric bird. He does try to do it less obvious in school, but I'm sure he does not always succeed. So at least the snort sound is a little more of a "natural" sound, if you know what I mean. I don't think it will be too much of a problem in school. maybe while its going on, you could tell him to have a tissue ready so he can look like he's blowing his nose. maybe let the teacher know ahead of time he has some sinus trouble and may snort a little because he has to clear it. I'm sure this will pass soon.

 

Faith

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Thanks everyone for the responses. My son woke up this morning still doing the snort sounds. He had 5 days of the steroids so far. We are trying it because he had a Cam Kinase score of 137. Also tics focus problems. He has never had this tic before. H1N1 is going around his school. I didn't think he had it because he had no fever with it. But maybe that because of the steroids? I am going to email Dr.Latimer and see what she thinks and hopefully she will email me back. I might try and give him Dye-free Benedryl. Can you give that with the steroids?

My son really has never had vocals before other than a humming noise 3 years ago that lasted 2 weeks then stopped. So this is very unlike my sons symptoms that he usually haves. Char..

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Hi Char,

Anthony did not tolerate steroids we only made it through one day!! He was the worst that I had seen him in 2 years. I told this to Dr. Latimer on Friday because Anthonys cam kinase score is 145 and I know that the the course of treatment appears to be antibiotics, steroids, IVIG/PEx. she stated some kids just can't tolerate steroids she did not want to try them again with Anthony but did switch his antibiotic from pen-v-k to augmentin. You can not give Motrin/ibuprofen with steroids Benadryl I beleive is ok. I hope things get better Char. Hang in there.

 

Deanna

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