Son with mutiple autoimmune problems

Hi, my son was recently dx with ITP. He also has Graves' disease hyperthyroidism and type one diabetes. Does anyone else have kids with multiple autoimmune issues. Any insight or suggestions in response to treatment? His plt count is fortunately in the 30's now but he is an active teen and it is hard to slow him down and he is bruised up all the time and getting hurt roughhousing. I can't keep him in a bubble. Thanks again for any info and help.

I see multiple autoimmune problems a lot in the adult section, not so much in the children's section but on occasion. I have more than one myself. It's fairly common. It can be hard to juggle multiple disorders since the treatment for one can exacerbate the other. All you can do is take it one problem at a time and do your best.

My daughter has Graves and I have ITP and Lupus. How does your son treat Graves?

My son was dx with graves and td1 2 1/2 yrs ago at the age of 11 years old on the same day. He also had systemic juvenile rheumatoid arthritis at the age of 3 he was on MTX for 2 yrs and prednisone for 6 months and it is now in remission. He also had IVIG 2 times for Kawasaki Disease.

He was on methimazole for 2 1/2 years when he had a high fever and sore throat and plt were nine. Stop meds 2 months ago thought the plt was a drug induced did bump up to 100 then now are hovering around 20 to 30. We were due to stop the Mmi this summer. Did not want him going hyperactive during school. So far thyroid levels are fortunately in normal range. But he feels crummy and says he needs his thyroid out. So I am trying to get an idea how fatigued and irritable people with ITP can get virus writing it off as puberty, teen angst or out of,control blood sugars.

He also had a bone marrow biopsy because his absolute neutrophil count (ANC) was slightly low? Which I am not sure what that means with the ITP picture.. He is unique will all his medical needs and want too factor that in when making decisions. Ex. High dose steroids may not be a good idea or a nightmare to manage a teen with insulin controlled diabetes.

How old is your daughter and how issue doing? Graves is certainly a roller coaster ride to figure out and manage. If he thyroid goes over active again we are looking at RAI or surgery because it is not advised with his counts.

Do you find people with other autoimmune issues with ITP is ITP more chronic in nature. Have a better response to certain treatment. I truly understand everyone's experience can vary but any insight appreciated. Thanks in advance.

ITP can appear alone, before other autoimmune disorders or after other autoimmune disorders. It can be chronic but many people go into remission. It sounds like your son has been hit with quite a few. I'm sure that is hard to handle both emotionally and medically.

My daughter was diagnosed with Graves at the age of 20. She is 29 now. She managed it with methimazole for 7 years but never did go into remission. She began to have other problems such as numb hands, neuropathy, muscle pain, etc and decided to have her thyroid removed two years ago in case those were side effects of the drug. They didn't go away. She's had fatigue since the Graves Diagnosis and that did not go away once her thyroid was removed. Her Synthroid dose is adjusted a few times a year because her TSH isn't stable. She's been a difficult case. If she had been able to get off of methimazole, she would not have had her thyroid removed. A patient still has Graves whether they have a thyroid or not. We never considered RAI as an option.

ITP can sometimes appear when a person is ill; viruses or bacterial infections can trigger it. Sometimes it can be acute and can go away within the first 12 months, so it's possible that could happen. Some people feel fatigue with ITP and some do not. It's different for everyone. Usually once counts go up a bit, the fatigue goes away. I once read a book about Graves and it listed the most common autoimmune disorders that can go along with it. ITP was one of them.

A low neutrophil count has nothing to do with ITP. A chronically low neutrophil count can indicate Neutropenia. If it was only slightly low and corrects itself, it could just be a temporary fluke that will resolve. Hopefully, that is the case.

Your son has quit a load to carry bless his heart - and yours too.

I answered your question to me in the adult section - I've had ITP since 1989 and Graves since 2003. Anti-thyroid drugs are known to cause a lower platelet count - my endocrinologist and my hematologist got together and said no to those drugs for me. I had RAI

Thanks for the insight. Graves is terrible on people. It is such an impairment and so poorly understood. I am hoping the graves continues to behave while we wait and see with the Itp. He fortunately does not have Thyroid eye disease. What scares me with the autoimmune issues is figuring out what is making him I'll and following a plan that won't make things worse. I keep thinking the long term methimazole messed up his blood cell counts.

It's possible, but many people use methimazole with no problems. ITP is something that may have happened anyway. No point beating yourself up over it, especially since it seems to have put Graves in remission. If he was on it for 2 1/2 years and did fine, it's possible that the high fever and sore throat are what triggered the ITP. Illnesses can often trigger it. I was diagnosed after a nasty cold.

All you can do is take things one day at a time. I know how hard it is to have a child with an autoimmune disorder. I was devastated when my daughter was diagnosed. She took it much better than I did. She's a real trooper. I can take anything that is thrown at me, but don't mess with my kids!

Sandi, thank you for your advocacy and support on this board you are a rock. My son since I talked to you last response to prednisone but count is back to 35 and he needs surgery to removes his thyroid in 2 weeks since his thyroid is going overactive. Going to try pulse dosing of déxamethasone 40 mg 2 days a week until surgery then IV déxamethasone on the day of surgery and crossing my fingers that will keep counts grater than 50 and not delay anything.

What have you seen on response on prednisone vs. déxamethasone and advice around time of surgery. Biggest frustrations is he has type one diabetes and his sugars have skyrocketed so much higher than when on prednisone. Hanging in there but I hoping the ITP won't delay surgery with everything else going on.

TIA for your help! And I appreciate anyone else's advice and insight.

Those two steroids can be great for a bump if a person is responsive. I hope all goes well. It's a shame that it's causing his Diabetes to go crazy. Wonder why they didn't try IVIG or some other med? Promacta has been used successfully for surgeries in children also. See Alison's recent post about her son.

My daughter had her thyroid removed through her arm pit. Are they using the new technique for your son?

Thanks for the info. We getting a CBC tomorrow. He has had Ivig 2 times when young and am concerned about the risk of adverse effects with repeat dosing. The hematologist we are seeing is 3 hrs away from where we are having surgery.

Did he have problems with IVIG when he had it before? If not, having it again shouldn't be a problem. It is a temporary solution but might be better than steroids causing the rise in blood sugar. Just a thought.

When is the surgery?

Surgery is Wednesday, July 22. Plt count 144 today. Plan is next CBC on Monday July 20 and with get two doses de adorn this week. His blood sugars are better know and he more tolerable to be around. I am going to talk with his hematologist on
Monday. Thank you for the help. I can't remember how long Ivig takes to be infused.

Good luck to your son - hope all will go well!

Anyone can get thyroid eye disease - one does not have to have a problem thyroid in order to get TED.

Surgery was last week. Spent one night in hospital. He is on the mend. Go back to hematology in 2 weeks to check counts. Will continue to take things a day at a time.

I'm glad it all went well. One less thing. Keep us updated.