Newly diagnosed 8yr old son

Hi eeryone. I am the mother of an eight-year-old newly diagnosed son who has ITP. He was admitted to the emergency room with a platelet count of 1000 on Tuesday of this week and was transferred to a PICU unit to follow up with an IVIG infusion. He was just released yesterday morning to our home because his platelets came up to 25,000 (yay!). However yesterday afternoon while at home he had an adverse reaction to the IVIG treatment and his headaches progressively got more severe and he started vomiting had a low-grade fever and was photosensitive. He was brought back down to the Children's Hospital here in Wilmington yesterday afternoon and was readmitted with aseptic meningitis.

I guess my main concern question is this - because ITP is already super rare to get and he came down with a rare side effect of the aseptic meningitis from the treatment How likely is it, if at all known, that he will become a chronic patient instead of an acute patient?

The two main reasons that asked this is one, both my husband (psoriatic arthritis) and his father (ALS) had and have autoimmune disorders and secondly every time we would ask the doctor on duty at the hospital they would become very dismissive about our questions and would basically tell us that we should have nothing to worry about that everything that we're questioning is super rare.... But in the end he's come down with everything that they swore he wouldn't come down with. I guess I'm just super scared that he won't be able to start back as a normal eight-year-old rambunctious boy anytime soon and I'm concerned about his longevity with autoimmune.

Aseptic Meningitis after IVIG is not that rare. I have seen that reaction countless times over the years. Search the site and you will find many stories. I'm always amazed that doctors don't seem to know that. His reaction to IVIG is in no way related to whether his ITP will be chronic or acute. Only time will tell.

ITP in children is also not all that rare. It is a common reaction to vaccines, illnesses and certain medications. Most of the time, it is acute, so take one day at a time and don't think about a chronic label just yet.

Gees!.. I am sorry for your pain, nobody deserves this.
I am new here and so glad you found this site. It has helped me more than words can say.
Because I am new there is not much real information I can offer, but having lived with auto-immune stuff all my life what I can say is this, it is an old phrase but a true one, "Don't look for trouble, it will find you". I like to re-phrase it as, "Don't look for trouble, if it wants to it will find you anyway.
It just helps to make you learn not to waste valuable time and energy on worry and stress and to only think about today not to far into the future.
Also very important, Find something to learn about and share everyday, and something to smile and laugh about everyday. Sandy Too

Thank you for your responses! I really appreciate all of the help so far! He was diagnosed with Aseptic and was sent home with us on Sunday, thank goodness. At discharge his platelets were 139,000. Yesterday was had our first post-hospital CBC done and he dropped down to 65k. I'm trying to stay calm and remind myself that the numbers can fluctuate, but that is not the direction the doctor was hoping he would go in so soon after the IVIG.

As for autoimmune, my husband suffers from Psoriatic Arthritis and his father passed away a few years ago from ALS, so it is hard for us to remain calm when we hear autoimmune. We are set up for one more follow up CBC with his pediatrician this Friday and will go to the Oncology-Hematology in Chapel Hill NC next Friday. Fingers crossed that by that time he is feeling better.

Some symptoms that he has been having are: Sore eyes, slight headache (2 out of 10), full body aches/uncomfortable and the oddest (to me) is his legs jumping and jerking randomly at night or at rest. Any insight? He looks pale/yellow and just unwell in general, but his spirits are awesome

I'd say that most of his symptoms are probably related to the aseptic meningitis, but I don't know about the legs. Maybe he has Restless Legs Syndrome? There are a few causes for that, although it's usually more of a conscious movement than a spontaneous jerk. Did you mention that to the Dr.?

Isn't muscle twitching one of the possible side effects of Benadryl? Seems like I read that somewhere, but could be mixing it up with another drug. Did they give him Benadryl before the IVIG?

I did mention that to both the RNs and DRs, it started the first time during the IVIG. It seems to be random and not at a predicted time. He has been waking up the last week with leg bone pain. He has gotten growing pains in the past but he said this feels different. It hurts him so much that it jolts him awake and he cant fall back asleep without some Tylenol and a light leg rub I hate seeing my child go through this.

yes to Benedryl during his treatment.

So it looks like his platelets are dropping back down again. We met with the hematologist last week and his platelet count was up to 76k (wahoo!!). At that time they cancelled the bone marrow aspiration because they felt that his body may have started to kick in and rebuilding it's own platelets.

Fast forward to this weekend. We were at the NC Renn Faire trying to have an awesome time/celebration as we haven't been able to do much up until this point. One nosebleed in the morning (was controlled) and two on the way home. He has also (maybe unrelated) been waking up every night and become very restless when it is time to go to sleep, which is the opposite of how he normally is. This week he has had two more nosebleeds in addition to the three on Saturday.

Tuesday his teacher called that he had a bad headache and needed to be picked up.

Yesterday (Wednesday) his teacher called and said that he almost passed out in class and was really pale. When we got home we noticed the petechiae again....

At this point I called his pediatrician and hematologist to follow up (We dont have our next appointment scheduled until 11/15.) The hematologist said that she feels that he may have a more "aggressive" form of ITP, which reflects in the way his body is peaking and troughing with the IVIG and they want to consult and do more testing and another form of treatment. We go in to the Pediatrician today for CBC and an overall check up.

1. I am trying to stay calm for him so that he doesn't become upset. I honestly trust his hematologists 100% so I do not doubt what they are saying, but he is a child who never got sick before. We used to joke that he has a titanium immune system LOL. This is something we just are not used to.

2. Does anyone have any advice when it comes to school work/time missed??? Between his sick days and hospital visits we are looking at day #15 missed. He has always been an excellent student and this is starting to impact his emotional outlook on school and his grade. I am concerned that if he missed much more they may hold him back.... do we look into homeschooling at this point??

I would not agree that he has an aggressive type of ITP based on his response to IVIG. IVIG is typically temporary and most people drop back down within a week. With ITP, counts jump around.

As for school, I would speak to someone at the school about a plan until he gets his counts stabilized. I'm sure they can work something out.

The reason that he was pale might be the bad nose bleeding on previous days. Whenever my son has a nose bleeding last more than 30 minutes, sometimes more than an hour, his hemoglobin will drop about 3, from 11 to around 8 (we call doctor and usually they bring us in if he has a bad nose bleeding), and he looks really tired and pale, usually need several days to look normal, and sometimes weeks for hemoglobin to come back.

I tried several things to control his nose bleeding, and we haven't had a bad nose bleeding for a month after that //knock on wood.
1. turn on humidifier whenever we are at home, and keep the humidity above 50.
2. apply vaseline inside his nose twice a day
3. He had a nose bleeding last week, but I used this and soaked it with Alfrin, and apply pressure on it for 5 minutes. The bleeding stopped in 5 minutes, before it was always more than 30 minutes.
www.amazon.com/gp/product/B000GCHODS/?th=1

These will not raise the platelet count, but definitely helped my son's symptom.

For school, since we are doing once every other week doctor visit, I try to schedule his appointment during his PE class or lunch time so he won't be impacted a lot.I also talked to the room teacher and principle, asked our doctor to write a letter to the them to describe what steps to take if he has any bleeding, and left some nose bleeding stop tools in the school office.

Hope this helps and best luck!

Update: His "fast look" marrow biopsy/aspiration came back unremarkable (woohoo!) and we are still waiting on his ANA and viral panels to come back. They prescribed him Dexamethasone last week, which was started on Saturday, and all I can say is wow! My child seems to be super super sensitive to a lot of medication side effects. He was sent home from school Monday for pain in his ankles and knees and his legs had blown up like balloons. His face did swell up a little, and the pain and swelling started up in his wrists and elbows as well. We went to the Dr and she noticed it was more in the right side, and the tenderness was also in his muscles. Needless to say they stopped his steroids and we just went in this morning for more blood work to test his inflammation, CBC and other things. We are also working on getting him a tutor for school to help him overcome his anxiety issues. As for the scheduling around his lunch and PE time, unfortunately our hematologist is over two hours away, so we try to schedule for Fridays (we live in a VERY rural area in NC and drive to Chapel Hill).

Dex is a very powerful drug. Most adults can't handle the side effects. I have not seen it used on children very often.

Well that's scary!

We have some adults on Dex now. They are having a difficult time. What dose was he on?

He was on 4mg tabs (x6 per dose). He is still having some major bone/muscle pain and weird dizzy/nausea two days after being taken off. He has a flush face/cheeks to where it looks like he may have a fever, but is actually running cool.

We are hoping he can start to feel better in another day or so.

We did get more test results back last night. With his CBC his WBC was slightly elevated, his platelets were unable to be counted because they were "clumped" and and his ANA was slightly elevated, but not through the roof. At this point we are going to play the waiting game and see what his body does on its own between now and 11/29.

A raised WBC is quite normal if on steroids

So 24 mg's once a day? Adults usually take 40 mg's.

Mrsb is right about the white count. Steroids can cause them to rise. Some of the treatments can affect other counts, so try not to worry if you see the CBC off a bit.

Clumping can be common for some people. I used to have clumping so often that my CBC had to be done instantly at the doctor's office. If it sat around or was sent out, it came back unreadable. It didn't matter if they used the purple top vial (EDTA), it still clumped.

Do you know what his ANA titer was?

So we just got the latest and greatest CBC back and his platelets were a whooping 205k!! Needless to say we celebrated with a Frapp. LOL. They did refer us to a Rhuemy as his titers came back elevated (on the lower end at 1:80 Speckled) but they want to just double check everything given our family history of autoimmune and his joint pan. Thank you ALL for your help over the last month, what a whirlwind!!

glad for you xx