Terrified beyond belief

[PhillyPA]

This summer my then 50lb son received a higher dose of steroids than your son. His first week started with 40mg per day.

 

Your dose is not really high.

[NMom]

I woke up this morning and for a few minutes I just forgot this whole nightmare. Then it all came crashing back down and I felt the weight of it all again. Now I can't stop crying. Maybe this is what a nervous breakdown feels like.

 

Anyway - we'll just see how today goes once my son gets up. I appreciate the perspective of all of you not in the middle of this situation and hope that you are right and this is all an overreaction. But I maintain that it's absolutely wrong that possible side effects were never explained - there is no monitoring of blood sugar or blood pressure going on. I wasn't even told to watch out for XYZ and call the doctor. This is a seven year old boy. I made a choice to give him steriods that could have major implications on his health. I might have made that choice anyway with all the information but maybe not. Who knows. We were not in a terribly bad place in terms of PANDAS symptoms

 

My hope is that he started feeling bad (no energy, very pale and terrible headache) maybe just as a result of being hungry or dehydrated. Then maybe he got a little anxious and started feeling like he couldn't breathe. And maybe the enlarged heart was simply the angle of the x ray. That's the hope I'm clinging to today.

 

Several people asked what made me think that he was spilling sugar or that the steriods increase his blood glucose. That's what the doctors - including our PANDAS doc (after I asked) - have told me. His fasting blood glucose was normal yesterday so that's a good sign but both PANDAS doc, two pediatricians and a pediatric ER doc have told me that the frequent (6-7 times/night) urination and cloudy urine are signs that he might be spilling sugar. The pediatrician that did the test recommended that I buy a glucose monitor at the pharmacy and test his blood sugar after the steriod dose to make sure it's not too high. I think this can improve as the dosage is decreased and I'm hopeful that's why yesterday it was normal (we just decreased the dosage). I just think but we should have been monitored. I waited a week to even ask the doctor about it because I thought it was just a common, unimportant side effect of the steriods. Might be but turns out it can also be very serious.

 

I really am trying not to project anything I'm reading about side effects onto my son. I only called the doctor in the first place at the prompting of our psychologist who thought that we should check on the urination issue. Then it feels like all ###### broke loose. We're having glucose checked, my son starts feeling very badly and the ER pediatrician is talking to us about the possibility of an enlarged heart. I'm trying to filter through all the panic feelings and find some solid ground. Easier said than done.

[SSS]

I am so sorry this is happening. Sending you and your son prayers and PV's-------

I also would be extremely upset, and scared.

Wishes for complete healing----

[LNN]

NMom,

I'm so sorry for all you've been through. You're right - severe side effects should be explained and I was not aware of some of the ones you've discussed. Thank goodness his sugar seems ok.

 

The one thing I wanted to chime in on was that you've also had lyme on your radar. Though I'm not suggesting any of this is related, I would do your best to write down all the symptoms and file them away. Things like being short of breath can be something a lyme/babesia patient would describe as air hunger. Frequent urination might be a prednisone thing, could be a Pandas thing, you'll find some people say that lyme can cause it, others will say mercury toxicity can cause highly increased urine production...someone posted a thread about all the symptoms yeast can cause and it looks a lot like Pandas. Similar laundry lists with many of the same symptoms can be found with lyme, metals, chronic fatigue, myalgia, metals, etc.

 

I'm in no way trying to diminish the panic and anger you're feeling. Totally justified. But write it all down and try not to fit it into one neat box just yet. This basket of symptoms could have many causes - the prednisone may have been a trigger but the cause could be something you haven't yet explored. Early on, I found a disease that seemed to fit 95% of my son's symptoms - it was called Pandas. I assumed the other 5% were just a unique Pandas presentation for my son or something the research papers hadn't seen enough of to include. I now feel those outlier symptoms and events were clues that there was more to the picture. Not that Pandas wasn't a piece of it, but that it wasn't the only piece or even the biggest. I got too married to the one diagnosis, the belief that one thing would be the answer. And in the process, we lost a lot of time and money sticking with things that ended up not moving us forward. Your son's adverse reactions are huge clues to something. But try to give yourself a few weeks and look at a few other possible causes. In panic mode, we moms like to find answers quickly. But in doing so, we can sometimes come to incomplete conclusions. Try to let the clues lead you and realize it may be more than one thing at play. Not something you want to hear right now, but something I wish I had done.

 

I hope today is a calm one and you start to see improvements. You and your son are in my thoughts.

[NMom]

Thank you Laura. You are right and I appreciate the insight. I think our next step will be to find an LLMD and try to understand the other things that might be going on. I always knew that the positive Lyme test might be an issue when we started steriods and suppressed his immune system. Even my pediatrician asked me why our PANDAS doctor was comfortable giving steriods with a positive Lyme diagnsosis. But ultimately it was up to me and I made the wrong call this time. Not to sound like a broken record but I just wish I'd known all the potential issues.

 

Anyway - we don't have any LLMDs here in TX. I know you have one you like. Could you PM me his name/number?

[LNN]

PMd you

[kimballot]

Thank you Laura. You are right and I appreciate the insight. I think our next step will be to find an LLMD and try to understand the other things that might be going on. I always knew that the positive Lyme test might be an issue when we started steriods and suppressed his immune system. Even my pediatrician asked me why our PANDAS doctor was comfortable giving steriods with a positive Lyme diagnsosis. But ultimately it was up to me and I made the wrong call this time. Not to sound like a broken record but I just wish I'd known all the potential issues.

 

Anyway - we don't have any LLMDs here in TX. I know you have one you like. Could you PM me his name/number?

 

NMom - I just want to chime in and tell you how very sorry I am that you are going through this. I can feel the distress in your words.

 

Please know that you did not make the "wrong call" this time. You made the best call you could and, in the end, I believe you will learn a great deal from this situation. Your son has excellent doctors working with you and keeping him safe. It is very wrong that you were not told about side effects, but it will make you even more vigilant with every prescription or medical procedure you have from here on out. We can all second guess our decisions but in the end the only thing that will help is if we learn from our experiences and if we learn from the experiences of others. I don't want you to become so fearful of making the WRONG choice that you make NO choice as I do not believe our children will get better on their own without any intervention.

 

You have brought light to the seriousness of steroids and helped us all to remember that they are a tool that can be of great benefit, but are also powerful and must be used judiciously.

 

Thank you for sharing this with us and I hope that all is well with your son's heart in the end.

[PowPow]

How is your son, NMom? I have been thinking about you and him!

Please let us know, if you can

[NMom]

Several people have PM'd me to find out how my son is doing or asked on this thread and I'm sorry I haven't responded before now. I'm very, very happy to say that we had a cardiology workup on Monday and all is well. His heart is not enlarged and now that we are at the end of the steriod taper we are starting to see some of the side effects decrease. I will say that we are also now starting to see the benefits that everyone talks about. His tics and OCD are much more manageable...really I think we are now dealing with the 'memory' of them if that makes sense. Some things are almost a habit now but he's more relaxed than I've seen him in months. So at the end of it all...I'm glad we are where we are but I'm not sure I'd risk it again unless we were desperate. I think our next step is going to be researching the Lyme/co-infections angle since we have a positive Lyme test.

 

The one issue that we are still dealing with in a major way is nighttime fears. He cannot go to sleep alone and if he wakes up in the middle of the night he cannot go back to sleep...last night he was up from 12:30 to 3:30 AM. We aer all exhausted and the easy way out is to put him our bed - he'll go right back to sleep. But we cannot do that forever. Has anyone else dealt with this successfully?

 

Thanks to all of you for all your support. I'm not sure what I'd do without this forum and all of you that take the time to respond and to talk me off the ledge.

[dcmom]

NMom-

 

We have dealt with night time fears, and having my dd sleeping in our bed for long periods

 

What I will say, especially if he is healthy, and what you are dealing with is residual ocd, is that a tough ERP therapist could really help. My dd was healthy this summer, yet hanging onto a lot of her ocd. We needed someone tough, to demand that she work on it, and frame it for us in a way that we felt we could be tough with her. Basically, she has NO choice in working on her ocd issues until they are gone, period. This took mostly a reframing of the way we look at things after the ###### that pandas put us through. We realized we had to stop accommodating and expect compliance in behaving, or working toward behaving in an age appropriate way, across the board.

 

It is not that he needs to sleep in his bed tonight, but that you need to tell him, he is expected to sleep in his bed all night on his own- if he cannot do this now, you have a program to get him there in x amount of time- and with this he has no choice.

 

I will say that you will most likely need to address the fears themselves. Is he afraid he will be kidnapped? you will get hurt? THere is probably something pretty specific. For that you would need to do a program to desensitize him to these fears. In other words, you can give him the facts (reassurance) once, but then he needs to work on talking and thinking and being exposed to these thoughts so much, that when they do come up- they will be boring and not anxiety inducing.

 

Glad that everything has calmed down on your end.

[LNN]

So glad he's out of the tailspin!!!!

DCmom is right - there are firm ways to address the bed situation. I should listen to her. But for now, we still allow shared beds. I don't have that resolve in the middle of the night. I'm a wus.

[NMom]

Eileen/Laura - Thanks to both of you for responding. I agree with both ... we've got a great psychologist that we do ERP therapy through. She specializes in pediatric OCD and was part of the Menninger clinic for some time. I love her approach - she is very much about letting the kids set their own pace so they build confidence and don't feel overwhelmed and give up. Most of the time that works great for my son because he's been so motivated to get rid of the OCD. This is different...I do believe he is irrationally afraid to the point of pure panic...but he's also working towards a positive end goal - to get into our bed. He likes it there. He's comfortable, cuddled, etc. So there's not a lot of motivation on his part to work on the fears. So I think in this instance we do need to be tougher. I sat up in our game room from 12:30 to 3:30 last night listening to him cry, plead, beg, etc. and refused to let him leave his bed. I'd already cuddled him to sleep twice and he just flat out would not go to sleep again. So I think it became a power struggle and I'm not particularly proud of my reaction but I was tired and emotionally worn out...probably not going to win Mommy of the Year award. But I strongly believed that he had to go back to sleep on his own in order to gain the confidence that he can do it. And every night that we give in reinforces the behavior we want to stop. We've come up with several program designed to get him into his bed over a period of time...we just never could quite get past the first or second step. So we're using the tough love approach right now. Not sure this will work either - probably depends on how long I can survive on no sleep!

 

I would like to address the fears directly but not quite sure how. When I ask he tells me he's afraid of monsters, vampires, werewolves, strange noises, pirates (just finished reading Treasure Island), etc....the list is long and varied and anything he's seen, read or heard of that day can pop up. We limit TV dramatically and I'm starting to limit what he can read as well. What I think is happening is that he has one or two key fears (vampires, monsters, etc.) and then goes into full-on panic mode and then EVERYTHING becomes scary. He's in adreneline overload - fight or flight - and just can't calm down. I've taught him several strategies to refocus his mind and relax his body but that doesn't always work. I think the trick may be to do some exposures to the key fears so they don't kick off the reaction.

 

Any advice on how to address the fears is welcome! Also curious...have either of you used Melatonin for sleep problems?

[LNN]

Eileen is a better one to address the ERP specifics and getting to the root of the fears. We too battle "there's a bug in my room" or "there's a gorilla in my fan". Like you, the specifics change from day to day. On bad days, my daughter won't go upstairs alone - at any time of day - because of these fears. I tell her that I would never ever ask her to go someplace that wasn't safe. But the OCD fairy will always try to trick her into not trusting me (so that the fairy gets all the attention). I tell her she must fight the fairy or the fairy will just grow bigger, stealing more and more of her fun. She needs to be the boss. I usually get a pitiful "but can't you come with me?". So I say "If I go, the fairy learns to be afraid of me, not you. She needs to be afraid of you so you can be the boss when I'm not around." I get some pathetic sniffle. If she's in a good place, she'll try. If she tries and fails, I'll do something like sit at the bottom of the stairs while she goes the rest of the way alone. My goal is to have her feel successful.

 

But at night time...well, part of our problem is that the parents are guilty. With so many other challenges during the day, we don't have a lot of energy on this front. It partly comforts us to have them close by. But several weeks ago, we told them that on Oct 1, we were going to start enforcing new rules. They are both old enough and in good enough places that we know we need to break the bad habit that whole family shares. We will read a book, give a massage (yes, I somehow got suckered into making this part of the bedtime routine) and have pillow talk (this is the time of day where I find out what's really going on with them). Then once they're settled in, Dad or I (we alternate every other day with each kid) will leave and they will have to fall asleep by themselves. Not sure how well it's going to go, but we'll see. You're right - failing actually comes with a nice reward, so it's always been the toughest challenge.

 

No, never used melatonin for the kids. DH used it for awhile with good results.

[nicklemama]

We've been using melatonin for our DS for nearly two years now. He takes 0.5mg each night, 30min before bed. It helps him fall asleep but does not keep him asleep. He had terrible sleep issues. It took him hours to fall asleep, due to his fears and anxiety. Melatonin cured that. If he wakes, he will usually go right back to sleep. However, he was coming downstairs in the middle of the night and getting in our bed. We allowed this because we were exhausted from taking him back upstairs several times a night.

 

IVIG in May really helped w/ the sleep issues, but weirdly enough, I think the lamictal he's been on has been contributing. We are tapering him off it. He's gone from 50mg bid to 25mg bid over the last nearly two months and he's mostly sleeping through the night now!!!!

[NMom]

LLM - your story sounds so much like ours. My son will not go upstairs alone. He won't even go to the bathroom alone. He drags our poor cat everywhere - that cat has a special reward waiting in heaven! And I take a lot of responsibility for the night time issues. I too have developed quite an elaborate bed time ritual that includes cuddling, a book, rubbing his head and back and walking him through relaxation exercises. I have been doing this until he falls asleep but then he's awake again (sometimes in 10 minutes) and we start all over. And I do sometimes really want him next to me at night. I'm scared a lot these days and worried and miss the PP (pre-PANDAS) days and it's comforting to have those moments to snuggle and feel like it's all going to be ok. But enough....my son is not responsible for my emotional issues and I feel like I might now be doing him a disservice if I don't help him feel safe and confident enough to fall asleep in his own bed. Sounds good, doesn't it...we'll see if I'm strong enough to pull him through it! At least I'm motivated - even if he isn't yet.