What PANDAS symptoms do you see when your child is well

[FallingApart]

Hello,

 

We are in our first relief from PANDAS and I don't know what to expect from my child. Obviously I want her to be 100% well 100% of the time. But can you tell me what you see in your child during a time that they are well? Do the OCD behaviors wax and wane and the child can still be healthy? DO other PANDAS symptoms show up from time to time in small doses and your child remains healthy or does it mean a PANDAS episode is imminent?

 

I am specifically referring to an instance of an OCD behavior that showed up today in DD. We haven't seen this behavior since the IVIG. My child hated cracks in the ceilings and walls prior to the IVIG. We were not able to go in restrooms that had them and had to cover up any imperfections in her bedroom every day. After the IVIG, this OCD behavior magically disappeared. Today, out of nowhere, she mentioned it in the parking garage. What do I make of this? I, of course, freaked out inside. I asked her how she felt and she said she felt fine. But she is only 3. Most of her other behaviors were fine aside from that. I noticed a few other minor OCD things today as well, but only because I was on the lookout for them.

 

Does this happen in your children who are currently not in the middle of an episode? Or when they are healthy, are they 100% healthy?

 

Thank you so much!

[thereishope]

Well, my son did not go tthrough IVIG, so I can't answer from that perspective about how the bumps in recovery might be. What I can say is my son (5) is no longer in the midst of a PANDAS episode, but OCD had lingered. I had to change the way I dealt with it. From letting it go during an episode to challenging it head on. Once I did that, he recovered rather quickly. I think the fact that she's 3 right now is in your favor. In terms that, if she has any residual problems, she is young and her brain can get retrained faster. Is she on a vitamins or supplements? There are things out there a 3 year old can take that may help ease OCD issues.

 

Right now, I would say my son wears his heart on his sleeve more. He may get upset faster and tear up faster than one may expect a 5 year old boy to do. I've taught him breathing techniques for when the crying comes on full force. Sometimes I see behavior I question, but then I wonder ..... "is it just his personality now". You really have to get to know your child all over again.

[dcmom]

This is a hard one to answer, and what we will be going through in the next week or so.

 

My dd recovered from her first episode by 30 days of daily zithromax, and then I would say another few weeks of just time (while on prophylactic). She did make it to a point where I would say she was 99.5% better. Her mood was great, she did not have that emotional lability, she had her appetite, no anxiety, etc. The only thing that did hang on, was, when she went potty at home she wanted me to wipe her (we had lots of potty ocd issues). I think this was residual ocd type stuff that Vickie talked about, but there wasn't the anxiety wrapped around it. We were working on it, when she had her second episode.

 

We are now hoping that we are recovering from the second episode. We are tapering her off of a steroid burst. Hopefully the improvements hold. She still has lots of low level stuff : trouble sleeping, moodiness. Could this be the steroids? Who knows.

 

So I guess I would expect them to be at close to 100%, but I do think they remember the stuff they went through, and maybe that "teaches" them to be a little more anxious about things. Does this make sense?

 

We have not done IVIG or PEX, yet. We are considering it. We will see what happens in the next few weeks.

 

My dd is really able to hold it together at school now, she does get very irritable when she gets home though

 

I hope the healing continues for your daughter!

[thereishope]

When my son would go to school in the early stages of recovery, he'd be okay in the class enviornment but when we got home, we knew to give him an hour or so to "deprogram". He'd be short tempered or wanting to be by himself in his room. I learned to just let him be and he'd come around when he was ready. He isn't like that now.

 

Stress and viruses may make some slight symptoms, particularly OCD, resurface. If that happens, they should diminish once the cause is gone. It may stick a ound for only a couple hours or a few days, but it shouldn't be permanent. You'll learn/see patterns as time passes.

[EAMom]

Falling Apart,

how long ago did you do IVIG?

[FallingApart]

July 31-Aug 1 was the IVIG

 

Since I wrote this last night, ALL of her OCD beaviors have come back as well as most of her PANDAS behaviors. I was up with her most of the night trying to get her to sleep. She got about 6 hours of sleep, which is typical for a PANDAS episode. Plus, her ability to listen and follow directions seems to be plummeting. This all seems to be happening at the same time. If I am honest about the timeframe, I would say this started last weekend when we attributed it to lack of sleep. I now believe this to be another PANDAS episode, but wanted to check in with all of you to see what you thought.

 

Our insurance said we could do another IVIG one month after the first. We are going to the Ped this morning and I am hoping she sends us to our hospital directly for the IVIG. I don't think I am strong enough to go through this again. And of course, this is the one weekend DH is out of town. I haven't slept or eaten since he left!!!

[KeithandElizabeth]

How stressful!

 

Have you considered getting her a strep test? Maybe she has been exposed to someone else with strep or can she be sick with any other type of virus? Which doctor have you been seeing for treatment? I think some doctors prescribe steroids or an increase in antibiotics during an episode following IVIG. How long ago did you have IVIG? Diana Pohlman did tell us that recovery after IVIG can take a good year of ups and downs.

 

Our thoughts are with you right now.

 

elizabeth

[T_Mom]

Hang in there--We have not done IVIG but from the posts on here--it is apparent that there are ups and downs in behaviors even as the healing is progressing--

 

(If you step back and look at her progress overall has she progressed from week to week?)

 

Could you be seeing the "turning back the pages" -- that some parents refer to which appears to be a phenomena that occurs as the brain is readjusting and healing after IVIG?

 

I wondered at times if that was what we were seeing when my d was responding to antibiotics and at the time of the two steroid bursts--when she was progressing but seemed to have symptoms appear again, and then leave...

 

There is an up and down with the healing that it appears children exerience.

Diana, or other parents who have gone through IVIG can speak better to this than I can--I hope you can rest tonight, is there anyone you can call in for in-home support while your husband is away?

[Megs_Mom]

How long ago do you do the IVIG? Have you had her checked immunilogically to see if she has an underlying disease, such as CVID or iGg subclass deficiency? Some kids may need ongoing IVIG every month. My gut is that a lot of issues may contribute to the actual pattern and symptoms that we see in our kids - also contributing to the wide diversity of responses to treatments.

 

I will be thinking of you and hope that your doctor is able to help today. I hope you are ok - and eating. Even if you have to grap snack bars & water bottles, you have to take care of yourself. You can only do well for your child, if you are strong. Don't back off on caring for yourself. You need that strength.

 

Is she also on Azithromyacin after the IVIG?

 

July 31-Aug 1 was the IVIG

 

Since I wrote this last night, ALL of her OCD beaviors have come back as well as most of her PANDAS behaviors. I was up with her most of the night trying to get her to sleep. She got about 6 hours of sleep, which is typical for a PANDAS episode. Plus, her ability to listen and follow directions seems to be plummeting. This all seems to be happening at the same time. If I am honest about the timeframe, I would say this started last weekend when we attributed it to lack of sleep. I now believe this to be another PANDAS episode, but wanted to check in with all of you to see what you thought.

 

Our insurance said we could do another IVIG one month after the first. We are going to the Ped this morning and I am hoping she sends us to our hospital directly for the IVIG. I don't think I am strong enough to go through this again. And of course, this is the one weekend DH is out of town. I haven't slept or eaten since he left!!!

[ShaesMom]

July 31-Aug 1 was the IVIG

 

Since I wrote this last night, ALL of her OCD beaviors have come back as well as most of her PANDAS behaviors. I was up with her most of the night trying to get her to sleep. She got about 6 hours of sleep, which is typical for a PANDAS episode. Plus, her ability to listen and follow directions seems to be plummeting. This all seems to be happening at the same time. If I am honest about the timeframe, I would say this started last weekend when we attributed it to lack of sleep. I now believe this to be another PANDAS episode, but wanted to check in with all of you to see what you thought.

 

Our insurance said we could do another IVIG one month after the first. We are going to the Ped this morning and I am hoping she sends us to our hospital directly for the IVIG. I don't think I am strong enough to go through this again. And of course, this is the one weekend DH is out of town. I haven't slept or eaten since he left!!!

 

FallingApart-

 

I'm so sorry that she is slipping backwards. I hope this is only temporary.

 

It's been five weeks since her IVIG and I think it is interesting to mention that all those IG's that she received have likely died off by now. They only have a lifespan of three to four weeks. If this is not a short term episode and it appears that her symptoms are back in full force, I would definitely consider doing the second round. At some point you should consider looking into the immunological tests to see if something is going on in addition to the Pandas. You will have to wait approximately 3-4 months after receiving IVIG to get accurate results.

[FallingApart]

Thank you so much everyone!

 

She is on Azith - twice weekly.

 

Those of you who go to an immuno-can you tell me how you found one that you liked? DO you mention the word PANDAS? I feel that if I mention that, they will dismiss me. I also feel like we have had every blood test under the sun done. I don't know what in the world all the Iggs are, but I feel like we have had them all tested. Could an immuno do more for us? I am happy to go to one. I just thought that since the IGgs that our ped tested for came back fine, that we didn't need an immuno.

 

This is SO stressful. The aggressive behavior towards her sister is now starting as well. I just want to cry and do not see how I am strong enough to do this again. In no way did I even start to recover myself in the 5 weeks that we had a healthy child after her IVIG.

 

If this were your child, would you be thinking this was just a temporary blip or would you be freaking out as I am? My mother's intuition tells me that this is not just a bad day/week. But I don't want to overreact.

[ShaesMom]

Did you have your d's Pneumococcal titers tested? This test would show how her body actually responds when it has an infection and some doctors and patients believe that this number is actually more important. A person can have normal immunoglobulin (Ig's) levels and still have a problem fighting off infections. The opposite is true as well, a person can low immunologlobulins but have normal responses to the titers and not be considered as having a need for treatment. It is important to look at the overall picture of that person's health--not just the numbers.

 

I would not mention the word Pandas until you get in to see the Immuno. I would send him a summary of her health history, your history during your pregnacy and mystery autoimmune illness and tell him you are wondering if something is wrong with her immune system.

[thereishope]

Over the last few days I have seen some questionable behavior in my son, but I am not to the point of taking him for a strep test. Even though I see small things I do not remember seeing a week ago, I still see improvements too. I am "testing" him by exposing him to things that set him off before. I am wondering, for him, if it is the heat and high temps that have returned to our area or whether he has fall allergies. Spring allergies caused a setback in April.I am keeping a close eye on him. I know in my heart my Mommy instinct will kick in and I will KNOW he has strep again if that defining moment happens. It hasn't yet.

 

My suggestion to you is to have a strep test done if in your heart you think she is having a full fledge relapse. Was strep the culprit the first time? I'm sorry, but this disorder is so cruel. I was in the same position as you. I had my son back for a few weeks, then BAM...strep again. It was such a bad time in my life. I didn't have a true break between episodes.

 

 

 

 

Thank you so much everyone!

 

She is on Azith - twice weekly.

 

Those of you who go to an immuno-can you tell me how you found one that you liked? DO you mention the word PANDAS? I feel that if I mention that, they will dismiss me. I also feel like we have had every blood test under the sun done. I don't know what in the world all the Iggs are, but I feel like we have had them all tested. Could an immuno do more for us? I am happy to go to one. I just thought that since the IGgs that our ped tested for came back fine, that we didn't need an immuno.

 

This is SO stressful. The aggressive behavior towards her sister is now starting as well. I just want to cry and do not see how I am strong enough to do this again. In no way did I even start to recover myself in the 5 weeks that we had a healthy child after her IVIG.

 

If this were your child, would you be thinking this was just a temporary blip or would you be freaking out as I am? My mother's intuition tells me that this is not just a bad day/week. But I don't want to overreact.

[Megs_Mom]

Hey - I asked on this site for an immune doctor, and got a response back from someone that had heard that a certain immune doc was "interested" in things - not just allergies. So I went to her. I did not take my daughter to first consult. Just talked to her & shared all records. I also did a full history of ALL illness in chronilogical order in one column, then the meds she took if any, and then the OCD symptoms & onset history if any. It made it very clear that with ear infection, came OCD. I also recapped all blood tests at the bottom of the page. Once I put it all on paper, I realized that many winters, Meg was ill with recurrent ear infections for most of the winter - also sinus infections and pneun once. I really didn't think that she was that sick of a kid - seems like all kids are sick. But once I saw it on paper, it looked different. The immuno felt the same & said that even if I had not said PANDAS and OCD, that she would have ordered a full immunilogial analysis.

 

I have tried to read a ton about Immuno diseases - and am not surprised that many are coming up positive here for iGg subclass deficienes, especially iGg2. Even if you have normal iGg levels, you need to test the iGg subclass levels (1-4). You can be normal on iGg and still have subclass issues. You also should test iGa, iGm, and vaccine titers. I am very concerned that we may all have a variety of reasons that our child is vulnerable to PANDAS. And that those reasons may cause the different reactions. Our family has a lot of OCD in it. Do they all have undiagnosed PANDAS? Or is the family genetic pattern why she was susceptible? If another child has low iGg2 - then should Meg and that child have a different treatment protocol? So many questions. So many studies needed.

 

If I were you, I would email 10 immunologists in your area with your story & ask which one would be willing to treat you knowing that it's PANDAS. If no one is, then you start not telling about PANDAS, and just do your medical history. Do you have a good Neurologist? Then they can refer you and that carries some weight. I love peds in many ways, but don't let them tell you that they have tested your kid for allergies or immuno issues. I bet you already know more than they do. This is a VERY new field in a lot of ways. There are thousands of auto-immune diseases that are suspected to not be proven yet. We may be in the dark for a while, but it is worth the effort. You may also want to immediately treat by dialing up the antibiotics. Do you have a doctor that will do this for you?

 

I think that we are going to have to band together as parents to fund studies. The medical community is failing us. What will happen going forward with our children? I am starting to really face the fact that there are more questions than answers for my child. That's not ok for her. And it is not ok for my grandchildren. It's not ok, and it is time for us to begin to act beyond our own families. We will need each other. Thanks to all of you for working so hard for your children - and for sharing so much that you have learned here.

 

Susan (Meg's Mom)

 

Thank you so much everyone!

 

She is on Azith - twice weekly.

 

Those of you who go to an immuno-can you tell me how you found one that you liked? DO you mention the word PANDAS? I feel that if I mention that, they will dismiss me. I also feel like we have had every blood test under the sun done. I don't know what in the world all the Iggs are, but I feel like we have had them all tested. Could an immuno do more for us? I am happy to go to one. I just thought that since the IGgs that our ped tested for came back fine, that we didn't need an immuno.

 

This is SO stressful. The aggressive behavior towards her sister is now starting as well. I just want to cry and do not see how I am strong enough to do this again. In no way did I even start to recover myself in the 5 weeks that we had a healthy child after her IVIG.

 

If this were your child, would you be thinking this was just a temporary blip or would you be freaking out as I am? My mother's intuition tells me that this is not just a bad day/week. But I don't want to overreact.

[EAMom]

Our dd (also 1 mo. post IVIG) is on 250 mg Azith. daily (has been since June 08). She is 54 pounds. Increasing the Azith. would be one thing to try.

 

I would also definitely get all family members strep tested/throat cultured. (Our other dd gets strep with no symptoms, a carrier perhaps, but our PANDAS dd will react when her sister is positive.)

 

I wonder if a strep test on your PANDAS dd would be a false neg if she is on Azith?

 

What dose of IVIG did your dd get?

 

I would also contact Diana and see what she has to say. It might also be worthwhile to send Dr. K. an e-mail and see what he thinks.

 

BTW...you are making me nervous since your dd had IVIG about 1 week b-4 ours.

 

I hope things get better soon. Keep us posted!