Sibling of Pandas brother showing symptons

[Rowens1214]

Hi i wanted to give an update on my son. He went to the Dr. yesterday and she did a quick strep which was neg. She also is sending off a culture. She drew blood to check his titers and streptozyme. She drew enough blood to send in for the cunningham test. I have only noticed the jerking tic once since thursday night. My sons throat was a little pink but i really dont think he has strep. She also gave us a prescription for azith but only for 5 days. I feel sure she will give me some more if i see an improvement in a few days but regardless i think i will call and get enough for at least 10 days. If this is PANDAS i want to catch it early and not have my youngest go thru what my oldest son has had to endure. I love megs ideas for the "habbit rev" i think i will give this a try.

 

Will keep you all updated on our progress.

 

Robin

[Rowens1214]

Just got all my sons test back ( except for the camk) the culture and titers were all negative. I think my Dr. thinks i am just being paranoid and looking for things that are not there. tonight my son was doing neck bends and neck stretching and some mild jerking. This is day 5 of the zith and I dont know what to do now. His legs were hurting him again tonight and last night he complained of ankle pain. Motrin helps his leg aches. I did mention to her that maybe we should test for lyme and she said he is not showing any markers for inflamation so she would not consider it. Should i push this with her. I feel like she will do it if i ask again but i just dont know what to do next. My older son is doing very good on his antibiotics. (He played his first jv football game tonight!!!)

 

If we do go ahead with Lyme testing can anyone tell me the best test to run. I thought i would handle this better with a 2nd child showing symptons and i just am so spent that i seem to just fall apart and want to hide in my room and cry. I am not doing that and staying strong for my boys but it is the not knowing that is so so hard. any suggestions would be so appreciated. ( oh yaa my son has been dry through the night 3 out of the last 5 days. this is a big deal for him. He is 7 and usually wakes up with a very wet pull up. any thoughts on this.

Robin

[Rowens1214]

I was just bumping this post in hopes of some suggestions. My youngest son is still ticcing but not showing any other symtons of PANDAS. Is it possible to have one child with PANDAS and one who could just have TS or could this be early signs of PANDAS. My youngest had tons a strep from 15 mos to 5. he is seven now and i guess i worry so because i have been through this with my 15 year old and dont want to miss this window of opportunity to treat while he is young.

 

Is it possible to just tic for a while and then later develop more of the classic PANDA symptons? My 15 yr old son has the classic PANDAS Symptons when he was 7-8. Anxiety, night fears, OCD. tics. He is just now getting treated for PANDAS.

 

The only test i am waiting on is the Cummingham. Just curious what others have gone thru since we clearly do not have one of the "overnight" onsets and he is neg for strep at this time.

 

i just feel so out of control and feel like i to need to be more proactive.

 

help!!

Robin

Edited September 11, 2010 by Rowens1214

[PacificMama]

His legs were hurting him again tonight and last night he complained of ankle pain. Motrin helps his leg aches. I did mention to her that maybe we should test for lyme and she said he is not showing any markers for inflamation so she would not consider it. Should i push this with her. I feel like she will do it if i ask again but i just dont know what to do next.

 

I'm going to suggest that you widen your circle of consideration, and get your son(s) evaluated for other infectious diseases that may be playing a role here -- such as mycoplasma, lyme, and other similar infections. Leg pain, and migrating pain, are hallmark symptoms of lyme. So I would advise that it at least needs to be considered and tested for (by a knowledgeable doctor). By the way, increased markers for inflamation are not necessary for lyme to be present.

 

If you want more information -- you could post over on the lyme section of the Latitudes board.

 

Mary

[emst]

I was just bumping this post in hopes of some suggestions. My youngest son is still ticcing but not showing any other symtons of PANDAS. Is it possible to have one child with PANDAS and one who could just have TS or could this be early signs of PANDAS. My youngest had tons a strep from 15 mos to 5. he is seven now and i guess i worry so because i have been through this with my 15 year old and dont want to miss this window of opportunity to treat while he is young.

 

Is it possible to just tic for a while and then later develop more of the classic PANDA symptons? My 15 yr old son has the classic PANDAS Symptons when he was 7-8. Anxiety, night fears, OCD. tics. He is just not getting treated for PANDAS.

 

The only test i am waiting on is the Cummingham. Just curious what others have gone thru since we clearly do not have one of the "overnight" onsets and he is neg for strep at this time.

 

i just feel so out of control and feel like i to need to be more proactive.

 

help!!

 

FWIW, I just read through this whole thread. I have 2 with PANDAS and the 2nd has symptoms that are quite different than those of the first. The first is very emotional and oppositional the 2nd is depressive which for years we thought was his saddness over her illness and her behavior which dominates the house, the mom craziness etc. Dr. B told us he'd not seen numbers as high as my sons on any but a couple 2-3 of the Cunningham tests he's seen and he seemed quite grave when he gave me that news. (And also FWIW believe me, I'm watching my 3rd kid like a hawk.)

Robin

 

 

FWIW, I just read through this whole thread. I have 2 with PANDAS and the 2nd has symptoms that are quite different than those of the first. The first is very emotional and oppositional the 2nd is depressive which for years we thought was his saddness over her illness and her behavior which dominates the house, the mom craziness etc. Dr. B told us he'd not seen numbers as high as my sons on any but a couple 2-3 of the Cunningham tests he's seen and he seemed quite grave when he gave me that news. (And also FWIW believe me, I'm watching my 3rd kid like a hawk.)

[matis_mom]

Just got all my sons test back ( except for the camk) the culture and titers were all negative. I think my Dr. thinks i am just being paranoid and looking for things that are not there. tonight my son was doing neck bends and neck stretching and some mild jerking. This is day 5 of the zith and I dont know what to do now. His legs were hurting him again tonight and last night he complained of ankle pain. Motrin helps his leg aches. I did mention to her that maybe we should test for lyme and she said he is not showing any markers for inflamation so she would not consider it. Should i push this with her. I feel like she will do it if i ask again but i just dont know what to do next. My older son is doing very good on his antibiotics. (He played his first jv football game tonight!!!)

 

If we do go ahead with Lyme testing can anyone tell me the best test to run. I thought i would handle this better with a 2nd child showing symptons and i just am so spent that i seem to just fall apart and want to hide in my room and cry. I am not doing that and staying strong for my boys but it is the not knowing that is so so hard. any suggestions would be so appreciated. ( oh yaa my son has been dry through the night 3 out of the last 5 days. this is a big deal for him. He is 7 and usually wakes up with a very wet pull up. any thoughts on this.

Robin

Hi Robin,

I just read in an article posted in the Lyme forum that, according to this drs. experience, inflammation markers are usually normal in Lyme. So I would push it, and take him to a PANDAS specialist if you keep seeing red flags. I know, it stinks! I have a second child who just recently started with lost of fears and she even tells me she thinks she is going crazy. My dh does not see it. I am so overwhelmed with other stuff, I'm just putting it on the back burner, but as soon as things settle a little I will have her checked out by a Lyme specialist, since she does have a history of tic bites and her strep antibodies came back normal.

[dcmom]

Mati's mom-

 

(Buster excepted) Aren't the dads always the last to see/admit it? It was that way for us both times...Luckily, he is FULLY on board now.

 

While I certainly agree with Lyme testing- remember that strep titers are relatively meaningless when diagnosing pandas. Very likely she had strEp when Mati did....

 

For all with siblings- I would push it with the docs. We have two, and while in one sense it is really depressing- it is very helpful to KNOW what you are dealing with, and of course treat it. I think the longer they go untreated the more chance of some of the issues becoming learned, and needing more therapy with medical intervention.

[susie]

My life seems so out of control. I can't tell you how many times I have been told, "let the doctors do their job, they know what is best". I started this whole process of Pandas for my ds9 only four weeks ago, symptoms started 4 to 5 years ago. I went to 3 Panda knowledgeable doctors and told them that I was concerned that my husband, my ds6 or myself were carriers and to test us to make sure. Do you know all they suggested were swab strep test. Anyway, long story, ds6 strep, me negative but really swollen throat, husband no symptoms. A week later ds6 still sick and now I had a sinus infection, he gave us both more antibiotics. Husband went and had blood work to see if he had strep. They only did the test that lets him know if he has been exposed to strep. He had a sinus infection and was given 10 days of Antibiotics. Ds6 and I finished 21 days of antibiotics yesterday, to my surprise when I counted on the calendar last night. I still have a sore throat and ds6 has, dizzy spells, headache and some body ache. I took him 2x this past week to my Panda doctor and explained my concern that he might have THIS. He told me like all the doctors that saw my ds9 for 5 years, that it is only a virus don't WORRY.

 

My reason for writing this... I'm sick inside, just sick that doctors know that this can be duplicated in the family!!! Don't they get how terrible this is? Why, why didn't they suggest that we test my younger son at the same time!!! And test my husband and I for Titer levels and not a stupid swab test.

 

My youngest son had problems keeping his hands and body still last year. It was like he was a different child. He would say he couldn't control it. The hyper activity comes ever once and a while. And YES, since the diagnosis of my oldest son, I'm keeping a daily log for both. Now for the past month my ds6 is having nightmares. He says he's not going to go to sleep because they control him. Says he try's to stop it but he can't. Since I sleep with my ds9 I can hear ds6 all night talking to himself. I walk in and he's all over the bed. A few days ago he was jumping over the lines on my tile floor. I asked him why he was doing that and he says it was a game. THEN YESTERDAY, we are at the pool and he's LICKING the handrail down the stairs. We told him to stop and he did it again. Last night as I was lying down with him I asked why he did this. He said his brain tells him to do stuff and he does it just like the feeling he gets when his body doesn't want to stop moving. Then he told me how scared he was to sleep. Needless to say, I've been up all night. First thing I did was to attack my husband because I'm exhausted of always having to do anything that is connected with PANDAS. It's on my shoulders to document and get help. But how can I get help if every time I talk about it to a doctor they shrug and look at me with a blank stare. Now I'm frightened that 21 days of antibiotic Septra will mess up the blood work. But starting Monday I'm going to Demand it, and then DEMAND it again 30 days later. I'm sorry I'm going on and on, but this all makes me SICK. I'm a Mother watching her family and children slip through her hands. And my baby’s life is IMPORTANT! Why don't they get this disease???? I think we have to be paranoid. My oldest son at age 4 or 5 started the snake like head movements and opening and closing his mouth years ago, and we thought it was just an annoying thing he did. Then did the throat clearing, and hand play. Again, we thought is was just his odd personality. Then fast forward a little over a month ago and he spit towards a couple that was walking by. That was about when I started connecting the dots... Just wish someone else could help me connect the dots!!

 

surfcity,

 

You can order ASO and Anti-DNAse B yourself through MyMedlab.com: https://www.mymedlab.com/products/search?q=strep. You'll have to see if it's available where you live (not sure about NY,NJ,and some of the eastern states)

 

Hope this helps.

 

Susie

[Worried_Dad]

On behalf of the dads, I apologize to any PANDAS mom who's been "abdondoned on an island" knowing that something is terribly wrong but not getting support from your spouse. That sucks! I think you're right: often, dads don't spend as many hours with the children on a daily basis and may be slow to accept the cruel reality of this disorder.

 

In our case, both my wife and I knew something was terribly wrong because the change was so dramatic, especially on the 3 days where our son had "exorcist explosions" of symptoms. We never doubted, despite the continued dismissals of local docs. (Okay... a few times, we were pretty despondent and baffled by the docs' utter certainty that the fevers, joint pain, etc., were irrelevant and we started doubting our own sanity.)

 

Our middle son's symptoms so far are mild: slight vocal tic, mild OCD, anxiety, enuresis. Nothing like his brother's overnight explosions. In this case - believe it or not - I'm the paranoid one who's worrying about possible PANDAS. My wife's the calmer one telling me not to overreact! I think she (and I) are so shell-shocked still that we can't contemplate the possibility of repeating this dark journey with another child....

 

Again, moms out there supporting multiple PANDAS kids: you are AMAZING!!!

 

 

Mati's mom-

 

(Buster excepted) Aren't the dads always the last to see/admit it? It was that way for us both times...Luckily, he is FULLY on board now.

 

While I certainly agree with Lyme testing- remember that strep titers are relatively meaningless when diagnosing pandas. Very likely she had strEp when Mati did....

 

For all with siblings- I would push it with the docs. We have two, and while in one sense it is really depressing- it is very helpful to KNOW what you are dealing with, and of course treat it. I think the longer they go untreated the more chance of some of the issues becoming learned, and needing more therapy with medical intervention.

[T_Mom]

Robin--I just read through this thread, I am so sorry--Please remember, PANDAS/PITAND diagnosis is often made with observation of "response to treatment"...

 

Many of us were never "lucky" enough to have blood titers drawn at "just the right time" to show high levels, or perhaps not "strep-positive" on a throat culture because it was a sinus issue, or just not the "first" episode -- (but one triggered by a subsequent virus.) As Swedo noted: after the first strep illness, kids may have an exacerbation due to simple being exposed to other illnesses--which may then trigger the auto immune reaction in PANDAS kids.

 

re: ticcing, our experience has been that it comes and goes, and morphs into different types--It does not necessarily last lengthy periods all-day, every-day for weeks on end, but then again, it may--

 

w/ OCD: MANY PANDAS kids have the spitting issues (ours did)--just like your son. Urinary issues were described at the OCF conference this summer -- and these can definitely be PANDAS issues (with a physical Ps related cause...)

 

A month of full-dose antibiotics (SEE Buster's flowchart in the Helpful Threads post) and if you see improvement...that may be the best test of all. Relatively benign treatment if you have OCD and tics!--in our opinion.

 

Megsmom gave some great suggestions which I am going to try at home--thanks!!

Edited September 11, 2010 by T.Mom

[dcmom]

Sorry Worried dad- should have included you (and Alex) in my exception

[matis_mom]

Mati's mom-

 

(Buster excepted) Aren't the dads always the last to see/admit it? It was that way for us both times...Luckily, he is FULLY on board now.

 

While I certainly agree with Lyme testing- remember that strep titers are relatively meaningless when diagnosing pandas. Very likely she had strEp when Mati did....

 

For all with siblings- I would push it with the docs. We have two, and while in one sense it is really depressing- it is very helpful to KNOW what you are dealing with, and of course treat it. I think the longer they go untreated the more chance of some of the issues becoming learned, and needing more therapy with medical intervention.

Thanks DCmom! My husband is totally on board about Matias, but does not see it on dd. With her, there are no tics, no OCD, just worries, fears, low self-steem, a bit of depression I would say. But no join aches, no debilitating fatigue like Matias had, nothing physical to back it up. She does, however, have more of a history of tic bites, and she had strep back when Matias started going downhill (we ALL had it), and a few more times since then. Plus, a history of tick bites!

Edited September 12, 2010 by mati's mom

[swim]

Did your doctor test for mono? Our oldest son (almost 12) has dealt with PANDAS symptoms for about 7 years. When we look back at his health history just prior to PANDAS symptoms, we see that he had mono and then a few months later he had strep. It is difficult for us to know if mono made him vulnerable to PANDAS or if strep was the only cause for him.

 

Then, this past January, our youngest son (8 at the time) suddenly started having tics. We went to the doc right away and rapid strep was negative. Our doc then did blood tests for strep and mono. Turned out he had mono. So, for our kids, it seems mono plays some part in their PANDAS story. Our ped put him on keflex and the tics stopped in 4 days. (Note that antibiotics eliminated his symptoms that were occurring while infected with a virus). He was on antibiotics for about 2 months and has only had to go back on them for about 2 weeks since then when I noticed some tic activity this summer.

 

Long story short, you may a test for mono. Even if it is resolved, they can tell you if there was a recent infection of if there has ever been an infection. Just a suggestion if you are still looking for possibilities.

[Rowens1214]

swim - was your son showing signs of mono. i know this can be pretty serious. My oldest was checked 2 years ago and it was neg. Can you have Mono like strep and not have the symptons?

[matis_mom]

Did your doctor test for mono? Our oldest son (almost 12) has dealt with PANDAS symptoms for about 7 years. When we look back at his health history just prior to PANDAS symptoms, we see that he had mono and then a few months later he had strep. It is difficult for us to know if mono made him vulnerable to PANDAS or if strep was the only cause for him.

 

Then, this past January, our youngest son (8 at the time) suddenly started having tics. We went to the doc right away and rapid strep was negative. Our doc then did blood tests for strep and mono. Turned out he had mono. So, for our kids, it seems mono plays some part in their PANDAS story. Our ped put him on keflex and the tics stopped in 4 days. (Note that antibiotics eliminated his symptoms that were occurring while infected with a virus). He was on antibiotics for about 2 months and has only had to go back on them for about 2 weeks since then when I noticed some tic activity this summer.

 

Long story short, you may a test for mono. Even if it is resolved, they can tell you if there was a recent infection of if there has ever been an infection. Just a suggestion if you are still looking for possibilities.

No, she wasn't tested for mono. She hates needles with a passion. I can kind of go by what my son's bloodwork reveals... fifth's disease, HHV6, etc. My dh has had Lyme Disease and West Nile Virus (at the same time!), and my baby wound up at the ER (she had an unexplained high fever and swollen fontanel) with spinal tap and all. They found no infection, so they ruled it a virus (I have the feeling it was West Nile too). So I'm sure she has been exposed to pretty much anything and everything. I guess at this point it really doesn't matter what it was that tipped the scale. I'm just going to focus on getting ds through plasmapheresis, and get dd checked out by an llmd. If that doesn't pan out, we'll go see Dr. L.