Jonah was diagnosed with Grave's disease (hyPERthyroid) in fall of 2017. For the past 18 months, we have been trying to bring his thyroid DOWN to a normal level by using medication. The reason hyPERthyroidism must be treated is because of the effects it can have on a child:
- difficulty gaining weight
- fast or irregular heartbeat
- high blood pressure
- nervousness and trouble concentrating
- irritability
- bulging eyes
- diarrhea
- poor school performance
For Jonah, he is experiencing problems with growth and trouble concentrating. So far, his heart and blood pressure have not been negatively affected.
The first line of medication, methimazole, successfully controlled Jonah's thyroid but brought Jonah's WBC count down. Low WBC makes a kiddo very susceptible to infection. Jonah did actually get strep 2x while on the methimazole.
Because of this, Jonah had to be switched to the 2nd line of medication, propylthiouracil (PTU). PTU is not the preferred medication, especially for kids, because it has a high chance of causing liver damage. For this reason, PTU is not recommended to be used for longer than 2 years.
The PTU, while helping the thyroid, also affected Jonah's WBC so that is why we had to take him off the PTU.
The hope when treating hyPERthyroidism with medication is that once levels are back to normal, sometimes the body starts to self regulate and the thyroid levels can remain in normal range without medication.
This was our hope for Jonah, but it did not happen. Without the medication, his levels go back up. We can't let him be hyPER for too long because then there is the risk of heart and growth issues, not to mention the continued problem with focusing and concentration.
So because there are no other medications available to lower his thyroid, and his body is not correcting on its own, Jonah's endocrinologist told us that we must now either use radioactive iodine to destroy Jonah's thyroid or have it surgically removed.
After destroying or removing Jonah's thyroid, he will then be hyPO or low thyroid and will need to be on a supplement for the rest of his life. However, this medication has few side effects and is relatively easy to manage so we aren't as concerned about Jonah being hyPO as hyPER.
The difficult decision for us was whether Jonah should have the radioactive iodine treatment or the surgery. We are choosing to have surgery for Jonah for the following reasons:
1. Jonah is only 8 years old, which is pretty young to have the radioactive treatment.
2. The radioactive iodine is in pill form. Some facilities use a liquid form, but our Children's Hospital of WI uses only the pill form. This means Jonah would have to be able to swallow a tylenol gel cap size pill. Jonah doesn't swallow pills. Even if we could get him to swallow, there would be no guarantee he would do it on demand in the very strict environment he would be in when being administered this treatment.
3. For 3 days after the treatment, we would have to stay a foot away from Jonah- no hugging etc. Jonah is a very impulsive and affectionate little fellow. It would be very hard to keep him away from us plus it would be hard to explain to him why he wasn't allowed near us.
4. For 7 days, Jonah would have to stay home and be around as few people as possible. Again, Jonah's impulsiveness would make it hard to keep him away from us (especially his sidekick Ben, plus it would be hard to keep Ben away from Jonah).
5. For 7 days, Jonah would have to regularly be clearing out his system to make sure the radioactive waste is leaving his body. Jonah has constipation issues. Even with Miralax, he often isn't regular on a daily basis. It would be hard for us to guarantee that he would be able to clear each day, and that would be not good for his GI system to be exposed to the radiation.
6. It sometimes takes weeks for the thyroid to be fully destroyed. Surgery is immediate.
So for those reasons, even though there are risks with this surgery (regular surgery risks along with very slim chance of possible damage to vocal chord nerves), we have decided to have Jonah's thyroid removed. It's a decision that has to based on the individual situation. There is no right and wrong answer that applies to everyone.
It was a difficult decision, but almost wasn't a decision, because the doctors agreed with us that the radioactive treatment just won't be feasible for our Jonah.
His surgery is scheduled for May 7th.
Jonah dressing up for swimming and basketball.
Jonah had is annual IEP meeting this week. The reason I insert this in the middle of this post about Jonah's hyPERthyroidism is because as mentioned above, Jonah is having a very hard time focusing and concentrating at school. We believe Jonah's over-active thyroid is some of the reason for this trouble.
Because of Jonah's difficulty with staying focused, Jonah is facing some academic challenges. Besides Jonah having a very hard time
focusing and staying on task, the other
challenge is the teachers feel like Jonah masters a skill for a bit, then loses
that skill and has to relearn it. His
teachers feel like this might be due to a combination of 3 things: 1. his
difficulty focusing, 2. if Jonah makes a gain in one area, he regresses in
another, and 3. Jonah may not be able to retain as much information as we
hope.
However, a lot of these concerns we discussed at the IEP this week are sort of on hold until after Jonah's surgery. We are hoping that by getting his Grave's
disease under control, Jonah will improve his focus and ability to stay on
task. Hopefully that will have a ripple
effect for what Jonah can retain and remember.
We are hoping!
We are very grateful and appreciative that Jonah's teachers and therapists are so patient and willing to help Jonah in every way possible. We have a great team!
Going out for a Friday fish fry
(and cheeseburgers and hot dogs!)
