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Terrified beyond belief


NMom

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My son is 14 days into his steroid burst and having lots of side effects including significant weight gain, very frequent urination and moonface. I called his pediatrician today to ask whether this was all normal since we don't live near our pandas doc and I've been unable to get answer from that office. Our ped was extremely alarmed at the dosage and length of the treatment and told me these were VERY serious side effects and I need to watch him closely and go straight to the er if he doesn't look right at all. He said I can't taper down any faster because I'll put him in adrenal failure but basically implied that these side effects could kill my son if we don't watch him closely. So I stalked my pandas doc through the after hours number until she picked up. She was very casual about it all until I told her he was up 6-7 times a night to pee and now she wants me to get his glucose checked tomorrow and call her...says he miht be spilling sugar. I have no idea what all this means but I doubt I've ever been this scared in my life. Has anyone else had these side effect? What can I do... We can't taper down any faster.

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I am not a doctor, but I believe there is a steroid-induced diabetes-- a transient condition that can be caused by longer & higher doses. I believe, if the hyperglycemia is mild (if he is even hyperglycemic) and he is coming down on the steroid anyway- they do not even treat it. He is young, though, so I do not know how that might affect it. Otherwise, it is treated with insulin. Has he ever had steroids for any other reason before? I cannot remember.

Please let us know how the blood sugar test turns out, NMom!

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Saw the ped today and did a urine and blood glucose tests...all were normal. We had not given the steroid dose this morning and we know that elevates his blood sugar but we have to continue the taper so will just continue to monitor for now. Have noticed that some of the tics are coming back since we lowered the dosage but it was not a dramatic change anyway so probably still better to get off e steroids as quickly as possible. Kinda seems like we are damned if we do and damned if we don't

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Good to hear! :P

 

Could your son have been exposed to strep......triggering the frequent urination and tics returning?? Maybe it is not the steroids afterall?? Just a thought.

 

I am curious....how do you know that the steroids raise his blood sugar??

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((hugs)) I'm sorry that you are seeing these side effects. If you don't mind, I'm wondering what your son's dose was (and his weight)...since your doctor seemed to think it was high?

 

Thank you...sending prayers your way.

Edited by Kayanne
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Saw the ped today and did a urine and blood glucose tests...all were normal. We had not given the steroid dose this morning and we know that elevates his blood sugar but we have to continue the taper so will just continue to monitor for now. Have noticed that some of the tics are coming back since we lowered the dosage but it was not a dramatic change anyway so probably still better to get off e steroids as quickly as possible. Kinda seems like we are damned if we do and damned if we don't

 

I am glad to hear that blood and urine tests were fine. My son also gains weight on steroids and gets a slightly rounded face while he is on them. I am wondering how long your son has been on the steroids. My son also usually gets increased PANDAS symptoms before the relief - and that includes frequent urination. I am hoping that is all that is happening with your son. We have had two steroid tapers with my son and both times he was very uncomfortable and irritable during the loading dose, but once it stabilized he was OK and when we started to taper down he was very good - to the point where he did not want them to end once we were down to one or two pills per day. Both times we did see PANDAS relief, but that may have also been because the steroids helped to halt my son's sinusitis.

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Hi

I am glad the urine/blood tests came back normal

 

I have posted before of the severe reaction (cognitive and neurologic) my husband had to a steroid burst, and how steroids should be avoided, if possible, in people who have genetic Tourette Syndrome, because steroids are dopaminergic (dopamine increases tics in TS)

 

May I ask if the doctor who prescribed the steroids has ever actually examined your son? or was this prescribed after a phone consult, with no prior contact between your child and the prescribing doctor?

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This side effects seem pretty normal to me. My sons both experienced, moon face, weight gain, and frequent urination at night while on steroids(two-three times per night). It will go away. As long as there is no spilling of sugar, he is fine.

 

 

I am curious about your son's weight and dosage...

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Hi NMom--I am sorry this has been scary.

 

I don't know if this helps or not, but with our 2 daughters (11 and 13 now) both have had 2 steroid bursts. For the one d the moon face is common effect of steroids -- but it goes away. It is not lasting.

 

Our experience has been consistently positive with steroids, essentially doing away with all of her severe OCD issues, like a silver bullet almost -- dramatically decreasing her severe OCD and mild ticcing issues. Twice!

 

I do not know if our d had more frequent urination or some weight gain(how much has your son gained in the 2 weeks?) I really don't know, but the effects of the steroids were so incredibly positive afterwards that we felt it set her system "right" enough for healing to begin,,,We would do it again in a heartbeat.

 

For my other Ps d there was not as clear an effect w/ oral steroids, but an IV steroid treatment w/ IVIG seemed to be very helpful, within 24 hours even.

 

Both kids had some activation from the steroids, but to be expected. I hope you will see this calm and really good results afterwards--

 

We have been given steroids for Ps by two different neurologists in the DC area, both times neuro-psych issues faded. *(Please note that the first time steroids were given to my d (then 11) she was literally so enslaved by OCD she was crawling, balled up on the floor of the doctor's lobby.) We thought she had lost her mind! He took one look at her and after discussing the situation he recommended steroids, a strong 3 week burst. He said it was out of the box, but that IF it was his child he would do it.

 

With steroids our kids have experienced common physical issues (moon face and mild activation) but also solid, dramatic PANDAS improvements.

 

The second time we tried steroids w/ our oldest, for example, she was able to focus again in school--her work did a 180 turn-around. In fact, her teacher (who knew about her Ps as our d was essentially not functioning in school, BUT the teacher did not know we were trying the steroids) -- the teacher emailed me to say she was seeing a completely differect child at school! -- the good effects continued until strep exposure a year later.

 

We feel steroids are not a big deal in our family compared to the suffering of PANDAS/PITAND--and the good effects have been proven more then once. I hope you see the same--all the best.

Edited by T.Mom
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Saga continues...around 3 pm my son suddenly had a headache that quickly became very bad. He was pale and told me that he was having trouble breathing. We were at the mall and I just grabbed him and ran to the ER on advice of my pediatrician. He improved in the hospital but his x rays showed a possible enlarged heart. Apparently steroids can cause congestive heart failure and although he does not have other symptoms of that we have to follow up for monitoring with our pediatrician. Praying that the heart issue is really just the angle of the x ray but we will certainly be following up.

 

For those that asked...my son weighed 53 lbs and the prescription was for 30 mg for 7 days, then 20 mg for 7 days, 10 mg for 7 and then 10 mg every other day for 7 days. He was examined by this doctor recently. He has gained about 4 lbs in 2 weeks and his face is huge. He's going to the bathroom 6-7 times a night and it's very cloudy - possible indication of sugar spillage. I was concerned about the frequent urination and called my ped who sort of freaked out. Then I called our pandas doc who was also concerned about the urination and told me to have glucose checked. I had already researchd side effects of steroids by this time and knew it could raise blood sugar significantly as well as blood pressure. My son's blood pressure was very high tonight as well.

 

So I'm still terrified beyond belief and angry that none of theses side effects were mentoned when the steroids we so casually prescribed. I realize that steroids are miracle drugs for many but these are very serious side effects and everyone should carefully weigh the risks against the potential benefits. At least be informed...I wish I had been.

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You are in my thoughts and prayers. It is unconscionable that these side effects were not told to you.

 

I was put on 30 mg prednisone for 5 days last year for tendinitis and I weighed about 135 at the time! And I also experienced frequent urination, etc. My physical therapist was very concerned when she heard about my dosage -- she thought it was very high. And I was angry at my doc for not telling me about side effects and he made no plans to taper me -- fortunately I knew about tapering and got a tapering plan from a different MD.

 

I am wishing your son a speedy and uneventful recovery. How old is he?

 

 

 

Saga continues...around 3 pm my son suddenly had a headache that quickly became very bad. He was pale and told me that he was having trouble breathing. We were at the mall and I just grabbed him and ran to the ER on advice of my pediatrician. He improved in the hospital but his x rays showed a possible enlarged heart. Apparently steroids can cause congestive heart failure and although he does not have other symptoms of that we have to follow up for monitoring with our pediatrician. Praying that the heart issue is really just the angle of the x ray but we will certainly be following up.

 

For those that asked...my son weighed 53 lbs and the prescription was for 30 mg for 7 days, then 20 mg for 7 days, 10 mg for 7 and then 10 mg every other day for 7 days. He was examined by this doctor recently. He has gained about 4 lbs in 2 weeks and his face is huge. He's going to the bathroom 6-7 times a night and it's very cloudy - possible indication of sugar spillage. I was concerned about the frequent urination and called my ped who sort of freaked out. Then I called our pandas doc who was also concerned about the urination and told me to have glucose checked. I had already researchd side effects of steroids by this time and knew it could raise blood sugar significantly as well as blood pressure. My son's blood pressure was very high tonight as well.

 

So I'm still terrified beyond belief and angry that none of theses side effects were mentoned when the steroids we so casually prescribed. I realize that steroids are miracle drugs for many but these are very serious side effects and everyone should carefully weigh the risks against the potential benefits. At least be informed...I wish I had been.

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Saga continues...around 3 pm my son suddenly had a headache that quickly became very bad. He was pale and told me that he was having trouble breathing. We were at the mall and I just grabbed him and ran to the ER on advice of my pediatrician. He improved in the hospital but his x rays showed a possible enlarged heart. Apparently steroids can cause congestive heart failure and although he does not have other symptoms of that we have to follow up for monitoring with our pediatrician. Praying that the heart issue is really just the angle of the x ray but we will certainly be following up.

 

For those that asked...my son weighed 53 lbs and the prescription was for 30 mg for 7 days, then 20 mg for 7 days, 10 mg for 7 and then 10 mg every other day for 7 days. He was examined by this doctor recently. He has gained about 4 lbs in 2 weeks and his face is huge. He's going to the bathroom 6-7 times a night and it's very cloudy - possible indication of sugar spillage. I was concerned about the frequent urination and called my ped who sort of freaked out. Then I called our pandas doc who was also concerned about the urination and told me to have glucose checked. I had already researchd side effects of steroids by this time and knew it could raise blood sugar significantly as well as blood pressure. My son's blood pressure was very high tonight as well.

 

So I'm still terrified beyond belief and angry that none of theses side effects were mentoned when the steroids we so casually prescribed. I realize that steroids are miracle drugs for many but these are very serious side effects and everyone should carefully weigh the risks against the potential benefits. At least be informed...I wish I had been.

 

 

Okay...I totally understand your fear, but, let's back up a minute....maybe this can ease your fear...maybe a little. Pale, high blood pressure, and trouble breathing ....sounds like a possible panic attack.....headache as well. (common in PANDAS....anxiety) I do so pray he does not have an enlarged heart. Some people are born with an enlarged heart (dilated cardiomyopathy)........a silent defect that IF by chance he would have this....you are fortunate to find it. Very hard call on a regular chest x-ray, but, definitely needs to be looked into. Congestive heart failure occurs (if steroid induced), generally, with people who are on long term steroids .......I couldn't see it happening with someone on a short taper. (those doses do not sound high to me...just my opinion and experience) You are mentioning sugar spillage but your earlier post said his urine and glucose were tested and normal..so, why do you still feel his blood sugar is raised?

 

I am just trying to help you calm a little bit.....I don't know....it is easier sometimes for people who are not "in it" at the moment to see things differently. So far, besides the weight gain and moon face.....nothing else can be directly linked to the steroids. I think you MAY be reading the side effects and freaking out thinking your son may have them?? Maybe.......I just mention that because I used to do that. Best to stop reading so much....causes anxiety in Mom which is then turned onto child. Been there....done that....still working on it! :)

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Hi NMom,

My son is on day 16 of a 45 day steroid taper, initial dose 45mg/day for weight 58lbs! He too has the moon face, ravenous appitite (a good thing in his case as he's underweight). Weekly checks for BP and sugar, OK so far. Today he did complain of hard to get air in, but I think it's due to all the extra food in his abdomen and fluid retention causing him not to expand his lungs as effectively, he felt better after going to the bathroom. The headache your son experienced was probably due to the higher BP, which does need to be monitored. Remember, our kids are on an immunosupressive dose of steroid to halt the autoimmune process in it's tracks, not just an anti-inflammatory dose as is ordered for several other conditions. If sugars do by chance become elevated the Dr said it needs to be treated with oral hypoglycemics or insulin till the steroid is complete. (BTW, sugar needs to be tested fasting to get an accurate reading, it's going to be elevated right after a meal). Also your child is at a greater risk of infection right now, so keep that in mind if he develops fever. Hope this helps and hoping for a good result for both our kids!

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